CHRONIC FATIGUE SYNDROME
A Treatment Guide
ERICA F. VERRILLO
St. Martin's Griffin * New York
CHRONIC FATIGUE SYNDROME: A TREATMENT
GUIDE. Copy right © 1997 by Erica F. Verrillo and Lauren M. Gellman.
All rights reserved. Printed in the United States of America. No part
of this book may be used or reproduced in any manner whatsoever
without written permission except in the case of brief quotations
embodied in critical articles or reviews. For information, address
St. Martin's Press, 175 Fifth Avenue, New York, N.Y. 10010.
This book is not intended as a
substitute for medical care. The information presented herein is
designed to help you make informed decisions about your health. The
authors and publisher will not be responsible or liable for actions
taken as a result of the opinions expressed within this book. Please
consult a clinician before embarking on any medical treatment,
therapy, or program.
ISBN 0-312-18066-7
First published in the United States of
America by Quality Medical Publishing, Inc.
First St. Martin's Griffin/Quality
Medical Publishing Home Health Library Edition: February 1998
10 98765432
We dedicate this book...
to the millions of people
around the world who have suffered
the ravages of CFIDS in silence
to those who have raised their voices
for those who couldn't
to those who have labored to find
the cause and the cure
and to those who have held our hands
Preface
Throughout this book we have examined
the practical problems surrounding chronic fatigue and immune
dysfunction syndrome (CFIDS). Rather than delve into debates
concerning theoretical and political issues, we have focused on the
clinical aspects of CFIDS. We have taken great pains to present
material in an objective, unbiased fashion regardless of our personal
preferences.
Compiling information about an illness
as complex as CFIDS can be daunting. Despite the difficulties
surrounding such a project, the task has been more than worthwhile.
In assembling a book that attempts to answer primary treatment
questions, we have not only responded to a basic need in the CFIDS
community, but have satisfied our own quest for knowledge as well. It
is this knowledge, combined with the firm belief that experience is
the best teacher, that has enabled us to overcome some of the
limitations of the illness we both have. For us this book not only
represents the sum total of over 15 years of knowledge and
experience, it is the book we wish we could have had when we first
became ill.
We gratefully acknowledge the input of
Dr. Charles Lapp, Dr. David Bell, and Dr. Thomas Steinbach who
reviewed this book for medical accuracy. Finally, any errors
remaining are our own.
Erica F. Verrillo Lauren M. Gellman
October 1997
CONTENTS
Introduction: The Treatment Dilemma
I: AN OVERVIEW
1 The Many Faces of CFIDS
Four Patients' Stories
Distinctive Features
Historical Background
Contemporary Developments
In Search of a Cause
Diagnosis
Recovering From CFIDS
II: THE MULTIFACETED SYMPTOMS OF CFIDS
2 How to Assess and Monitor Symptoms
3 Specific Symptoms and Treatment Tips
Allergies
Allergies
Airborne Allergens: Pollen, Mold,
Animal Dander, Fur,
and Feathers, Dust
Food
Chemical Sensitivities: Indoor Chemical
Air Contaminants, Outdoor Chemical Air Contaminants, Drugs and
Medications, Clothing and Personal Care Products
Candida
Cardiac and Cardiovascular Symptoms
Palpitations (Tachycardia)
Low Blood Pressure (Hypotension)
Shortness of Breath (Dyspnea)
Cognitive and Emotional Problems
Cognitive Problems: Loss of
Concentration,
Short-Term Memory Loss, Multitasking,
Linguistic
Reversals, Word Searching, Math
Problems
Emotional Problems
Digestive Disturbances
Esophagus: Spasm, Difficulty Swallowing
Stomach: Nausea
Small Intestine: Permeable Intestine
Large Intestine: Gas, Diarrhea,
Constipation
Gallbladder
Liver
Dizziness and Vertigo
Endocrine Disturbances
Thyroid
Adrenal Glands
Fatigue
Postexertional Fatigue
Lethargy
Agitated Exhaustion
Flu-Like Symptoms
Sore Throat
Tender Lymph Nodes
Fever and Chills
Sweats
Headaches
Migraine Headaches
Sinus Headaches
Tension Headaches
Hearing Problems
Hyperacuity
Tinnitus
Hearing Loss
Pain
Itching
Hypoglycemia
Joint Pain
Common Joint Problems: Gelling, Pain,
Carpal Tunnel
Syndrome
Loss of Libido
Muscle Problems
Fibromyalgia
Spasm
Weakness (Paresis)
Tremor
Loss of Coordination
Twitches
Oral Problems
Gums
Teeth
Canker Sores
Temporomandibular Joint Syndrome
Taste
Pain
Premenstrual Syndrome
Secondary Infections
Viral Infections
Seizures and Seizure Activity
Absence Seizures (Petit Mal)
Simple Partial Seizures
"Sensory Storms"
Grand Mal Seizures
Shingles
Sinusitis
Skin, Hair, and Nail Problems
Skin: Pallor, Rashes, Dry, Peeling
Skin, Acne, Hypersensitivity, Spontaneous Bruising, Paresthesias,
Loss of Fingerprints
Hair
Nails
Sleep Disorders
Insomnia or Difficulty Initiating and
Maintaining Sleep
Hypersomnia
Light Sleep
Dysania
Dysania
Myoclonus
Dreams and Early Waking States
Urinary Tract Problems
Cystitis
Prostatitis
Vision and Eye Problems
Photophobia, Floaters and Spots
Tearing and Dry Eye
Sluggish Focus and Double and Blurred
Vision
Tunnel Vision
Night Blindness
Depth-of-Field Loss
Nystagmus
Sjogren's Syndrome
Weather Sensitivity
Weight Loss or Gain
Weight Loss
Weight Gain
III: TREATMENT OPTIONS
4 Pharmaceuticals and Prescription
Drugs
Ampligen
Antidepressant Drugs.
Tricyclic Antidepressants: Sinequan,
Elavil, Pamelor, Norpramin, and Tofranil
Selective Serotonin Reuptake
Inhibitors: Prozac, Zoloft and Paxil
Monoamine Oxidase Inhibitors: Nardil
and Parnate.
Other Antidepressants: Wellbutrin,
Desyrel, Effexor.
Antifungal Agents; Nystatin, Diflucan,
Nizoral, Sporanox
Antihistamines
Claritin and Hismanal
Benadryl
Chlor-Trimeton
Atarax and Vistaril
Antivert
Antiviral Agents
Acyclovir
Famvir
Amantadine
Benzodiazepines
Klonopin
Valium
Xanax
Beta Blockers
Calcium Channel Blockers (Nicardipene,
Nimodipine,
Nifedipine, Verapamil)
Central Nervous System Stimulants
(Cylert, Ritalin,
Dexedrine, Lonamin)
Cytotec
Diamox
Flexeril
Florinef
Gamma Globulin
Guaifenesin
Hydrocortisone
Kutapressin
Naltrexone
Nitroglycerin
Oxytocin
Pain Relievers
Aspirin
NSAIDs
Acetaminophen
Ultram
Narcotics
Pentoxifylline
Tagamet and Zantac
Transfer Factor
5 Nutritional Supplements and
Botanicals
Alpha Ketoglutarate
Amino Acids
Carnitine
Glutamine
Glutathione
Lysine
Taurine
Antioxidants
Bioflavonoids
Blue-Green Algae
Butyric Acid
CoQ10
DHEA
Entero-Hepatic Resuscitation Program
Essential Fatty Acids
Evening Primrose Oil
Borage Seed Oil
Fish Oils
Flaxseed Oil
Glucosamine Sulfate
Herbs
Astragalus
Chamomile
Echinacea
Garlic
Ginger
Gingko
Ginseng
Goldenseal
Gotu Kola
Licorice
Lomatium
Milk Thistle
Uva Ursi
Valerian
LEM
Malic Acid
Melatonin
Minerals
Calcium
Chromium
Magnesium
Colloidal Silver
Zinc
NADH
Probioplex
Probiotics
Pycnogenol
Royal Jelly
Sambucol
Vitamins
Vitamin A
Beta Carotene
Vitamin B12
Vitamin B Complex
Vitamin C
Vitamin E
6 Alternative and Complementary Medical
and Supportive Therapies
Acupressure
Acupuncture
Aroma Therapy
Bach Remedies
Bed Rest
Biofeedback
Chelation Therapy
Chiropractic
Exercise
Homeopathy
Hydrotherapy
Hypnosis
Live Cell Therapy
Massage
Craniosacral Massage
Lymphatic Drainage
Reflexology
Shiatsu
Therapeutic Touch
Meditation
TENS
Visualization and Imagery
IV: COPING AND MANAGEMENT STRATEGIES
7 Stress Reduction and Elimination
8 Cleaning Up: Eliminating Toxins in
the Home
9 Food and Diet
10 Special Needs of Children With CFIDS
APPENDICES
A Resources
B National and International
Organizations
C CFIDS Clinics, Clinicians, and
Laboratories
D Mail-Order Suppliers
E CFIDS Treatment Survey
Bibliography
Index
A Note to Our Readers . . .
Throughout this book we have used the
name chronic fatigue and immune dysfunction syndrome (CFIDS) to refer
to the illness known to the lay public as chronic fatigue syndrome
(CFS). We have chosen CFIDS because it is the name currently endorsed
by the National CFIDS Association and is accepted by most informed
clinicians and researchers in this country. However, despite the
addition of "immune dysfunction," CFIDS does not adequately
describe this illness any more than CFS does. The inclusion of the
word "fatigue" as part of the name of an illness has led to
misconceptions and sometimes dismissal of what should be regarded as
a serious and debilitating illness. No other medical condition is
named after a single symptom, much less a symptom associated with a
number of other illnesses. (Fatigue is characteristic of Parkinson's
disease, cancer, multiple sclerosis, and numerous other chronic
conditions.) CFIDS should not set a precedent.
A number of suggestions have been
offered as alternatives, including ME (myalgic encephalomyelitis, the
name currently used in the United Kingdom and Canada), low natural
killer cell syndrome (LINKS, as it is known in Japan), post-viral
syndrome, Nightingale's disease, and chronic immune dysfunction
syndrome (CIDS). Dr. Katrina Berne, author of Running on Empty, has
compiled a list of 40 names from those of a more descriptive nature,
such as autonomic nervous system dysfunction syndrome, to names that
honor pioneering clinicians, such as Cheney-Peterson disease or
Ramsay's disease.
There is currently widespread interest
in changing the name of this illness to one that is less misleading.
We encourage our readers to make their voices heard on this issue so
that this illness can receive the appropriate recognition and
attention that it deserves.
Introduction: The Treatment Dilemma
Healing is a matter of time, but it is
also sometimes a matter of opportunity.
— HIPPOCRATES —
CFIDS is one of those diseases for
which receiving a diagnosis can bring as much frustration as relief.
All too often a person who has spent years searching for a diagnosis
expects that identification of the illness will bring with it, if not
a cure, at the very least an effective treatment plan. Unfortunately,
most of us who have had the illness identified for us have also been
told that CFIDS has "no known cause or cure," a phrase that
invariably creates enough hopelessness to offset any relief the
diagnosis may have offered.
The lack of known cause or cure, while
discouraging, certainly does not imply that an illness cannot be
treated, or that those who suffer from it will not recover.
Throughout the ages, physicians have successfully treated diseases on
the basis of their knowledge of symptoms and human physiologic
responses rather than on test results. And because human physiology
has not changed much over the past 40,000 years, for the most part
reme dies have remained remarkably consistent. For example, the
Chinese med ical system, which relies heavily on nutrition and the
use of herbs, was codified more than 5000 years ago. Herbal remedies,
pharmaceutical derivatives, massage and manual manipulation
techniques, nutritional therapy, and stress reduction methods
(meditation, yoga) are treatments that have withstood the test of
time, and still form the mainstay of medical sys tems throughout the
world.
The premise of this book is that the
absence of a cure does not in any way imply that there is no
treatment for CFIDS. To make the grounds for this position clear,
consider the popular concept that an illness "attacks."
Cure, in this conceptual framework, consists of killing the attacker.
In CFIDS, the attacker is unknown, unidentified, and perhaps not even
a single factor; thus counterattack is impossible. The victim is left
with only two choices: lie back and let nature take its course (which
in CFIDS can be agonizing) or look for alternative points of view.
The alternative we suggest is to view CFIDS as a form of systemic
damage that must be gradually, methodically, and thoughtfully
repaired. Or, to use an analogy, if CFIDS is like falling into a
hole, as some patients have observed, recovery is like climbing out
of the hole, step by step, rung by rung.
The purpose of treatment is to provide
rungs. Each treatment that relieves a symptom can serve to haul a
person with CFIDS one step farther out of the hole. And with every
treatment that successfully accomplishes its purpose, the body
becomes stronger and more footholds are available. People who have
had CFIDS for a long time are well aware that this ap proach can lead
to significant improvement, enough so that return to work or
recommencement of a social life is possible. For example, statements
like "With B12 shots and Kutapressin I had enough stamina to go
on vacation with my family" are heard frequently enough to
warrant atten tion. If each person measures a treatment by what it
can restore to his or her life, that standard provides a basis and
framework for recovery.
With that image in mind, we have
compiled a list of treatments, therapies, and techniques that have
been successfully used by people with CFIDS. None of these treatments
is guaranteed. That is to say, what works wonders for one person may
not work for another. Nor are they cures. None has been claimed to
completely eradicate the disease. But some may relieve the worst
symptoms or decrease the severity of the illness. For peo ple who are
unable to leave their beds, have lost their jobs, or would like to
resume at least the semblance of a normal life, a 10%, 20%, or 30%
im provement is not to be dismissed. The key to determining which of
these treatments will be effective is knowledge.
Understanding your illness— your symptoms, your responses, your ups and downs—is the greatest favor you can do for yourself and your doctor. Dr. Patricia Salvato, a CFIDS specialist practicing in Houston, Texas, expresses this idea quite well: "Well-informed patients simply make for better partners in health-care, and, when knowledge is shared, everybody benefits; there is an unbelievable amount of healing in just the sharing of new knowledge" (Mass CFIDS Update, Summer 1996).
Understanding your illness— your symptoms, your responses, your ups and downs—is the greatest favor you can do for yourself and your doctor. Dr. Patricia Salvato, a CFIDS specialist practicing in Houston, Texas, expresses this idea quite well: "Well-informed patients simply make for better partners in health-care, and, when knowledge is shared, everybody benefits; there is an unbelievable amount of healing in just the sharing of new knowledge" (Mass CFIDS Update, Summer 1996).
This book is divided into four main
parts. Part I is an overview of CFIDS to help orient the reader.
CFIDS, along with some of its most no table characteristics, is
presented as it feels to the patient. Possible causes of CFIDS are
presented in brief (without entering into polemics), followed by
diagnosis, tests, and finally prognosis.
Part II deals exclusively with
symptoms. This is a guide to understand ing the body's reaction to
CFIDS and is a key resource for devising appro priate treatment
plans. Each entry describes a CFIDS symptom from the perspective of
the patient. Following the description is an explanation (or as close
as we can get; many explanations are only tentative) of why the
symptom occurs in CFIDS. At the end of each symptom are treatment
tips, recommendations for further reading, and resources for
additional information. The reading recommendations are nearly all
patient-oriented, nontechnical books, rather than medical articles.
For those interested in research, a bibliography is provided at the
end of this book. The "see" sec tion at the end of each
symptom provides cross-references to relevant parts of the book.
Part III consists of a treatment
dictionary, divided into three chapters: pharmaceuticals and
prescription drugs, nutritional supplements and botanicals, and
alternative and complementary medical and supportive therapies. The
short introduction explains that, although people with CFIDS can, and
do, respond quite differently to treatments, there are,
neverthe less, certain guidelines each person should be aware of.
Part IV discusses some useful coping
techniques and what are commonly referred to as "lifestyle
adjustments." Although this discussion comes last, we do not
mean to imply that learning to cope with CFIDS is in any way less
important than treating the illness. Coping and management strategies
can sometimes determine the rate of recovery a person will make so
their importance can hardly be overstated. The three areas discussed
are stress, the home environment, and diet. Stress is one of the
primary obstacles for people with CFIDS and some useful management
tips are provided. Toxins in the home, the most important environment
for people with disabling illnesses, and how to keep your living area
safe will be of special interest to those with multiple chemical
sensitivities (MCS), an illness in its own right and certainly a
significant problem for a subset of patients with CFIDS. Making
generalizations about diet is difficult indeed when patients with
CFIDS can have such varied food sensitivities. Nevertheless, the
topic is important because diet can make an enormous difference in
how a person with CFIDS feels.
The final chapter of this book concerns
children with CFIDS. Although children experience the same symptoms
as adults with CFIDS, their needs are different. This chapter
provides some special tips for parents of children with CFIDS, as
well as resources that respond to the specific needs of children.
The information found in this book was
gathered from a variety of sources: medical articles, books about
CFIDS, newspaper and journal articles, research reviews, personal
accounts, interviews, and survey results. Although we relied on
published sources for specific information concerning the mechanisms
and treatment options available to people with CFIDS, unpublished
sources such as letters, telephone conversations, interviews,
questionnaires, and Internet discussion groups were invaluable in
assessing the effectiveness of specific treatments and therapies. The
rich and varied experience of the CFIDS community itself forms the
ballast of the book, for this is, above all, a book that reflects our
own efforts to find treatment for this baffling disease.
CHAPTER 1: THE MANY FACES OF CFIDS
Four Patients' Stories
Sarah... Sarah first became ill in
August 1987, when she was 32 years old. At that time she was
completing a teacher training program and rearing two young children.
The first symptom she noticed was an inability to fall asleep, and
stay asleep, at night. She also had severe headaches, which she
attributed to the aftermath of the flu. She did not become alarmed,
however, until she tried to pick up her infant son and her legs gave
way. As a former swimmer, she was highly attuned to her body and
realized that the loss of strength in her legs was unusual. She
started experiencing pain and stiffness in her joints as well. She
was surprised that exercise made her feel much worse, exacerbating
the insomnia and pain. Hardest of all for a student, she was finding
it difficult to concentrate and to retain information. As she told
her doctor, she felt like her "batteries had run out." She
was falling asleep at 4 o'clock in the afternoon, although she had
had energy to spare just a few weeks earlier. Her doctor chalked up
her symptoms to stress and suggested that she "take it easy."
Sarah's problems did not resolve with rest, however. When she
appeared a few weeks later with a sore throat, low-grade fever, and
swollen glands, the doctor suspected a virus. Blood tests revealed a
low white blood cell count, indicative of a viral infection. By the
end of the semester she was so exhausted she decided to take a leave
of absence. She felt much better, but her symptoms persisted. Her
doctor ordered endocrine system tests and recommended that she see
both a neurologist and a gastroenterologist. None of their tests
revealed any abnormalities. At that point her doctor thought she
might have CFIDS and recommended she "stay home and rest."
After a year and a half, Sarah returned to school, still feeling "run
down," but able to function if she took naps and did not
overexert herself.
Samantha... Samantha's history goes
back to 1964, when she contracted a severe case of mononucleosis as a
freshman in college. Her recovery was so slow she did not feel like
she ever got over the illness. In the following years she
periodically felt extremely tired and "just not able to get up
and get going." By the early 1970s she exhibited obvious
allergies for the first time to pollens, molds, and animal dander.
She also began to have some mild muscle and joint pain. By the
mid-1970s she began to have chronic gastrointestinal problems. "It
seemed that one day I could eat anything I wanted; the next day was
just a disaster. Whenever I ate, it hurt. When I didn't eat, it hurt.
I experienced severe weight loss." She was sent to one
gastroenterologist after another. They diag nosed irritable bowel
syndrome.
Samantha continued to work but was
hospitalized from time to time. She tried a number of treatments but
nothing seemed to help. "I had severe reac tions to the drugs
they were giving me. I began to shake; sometimes I could not write
out a check. Every time I went to the doctor with a physical
complaint, whether it was my doctor or a specialist, I was referred
to a psychologist. I felt like no one was listening to me, no one was
treating my physical problems, and I might as well give up."
By the end of 1992 Samantha could
barely make it to work, much less stay the entire day. "I would
sit down at my desk, take one look at a page of work, start to try
and work on it, and become so exhausted that I would go into another
office, which had carpeting on the floor, and sleep. When I woke up I
would be so exhausted I could barely summon enough energy to drive
home. I was way behind on my paperwork. By the last month of that
year I could barely attend meetings. That summer I rested, but the
symptoms did not improve." At this point, Samantha was desperate
to discover what was wrong with her.
The first real clue came through a
newspaper article about the local CFIDS support group. Upon reading
the case histories of two of the people in the group, she felt she
was reading her own story. Through the group, she learned there was a
national organization and that there were experts. She chose to go to
a renowned specialist, who diagnosed a classic case of CFIDS. For
Samantha, a woman who had been ill with an unnamed illness for most
of her life, the diagnosis was an indescribable relief. "He gave
me a diagnosis and val idated the illness for me, as well as
suggesting treatments that to this day I continue. Most important
over time has been the feeling of having been given back the sense of
who I am. He gave me back my belief in myself, restored my
confidence, and left me with the feeling that this incredible saga of
the past 20 years had not been in vain. Now I know that throughout
all those things that have happened—throughout all the years of
confusion, frustration, and pain—the core of who I am has always
been there."
In the 3 years since her diagnosis,
Samantha has improved but not recov ered. She can drive, take care of
herself, and is supervising the building of a new house—a vast
improvement over the days when she could not even leave her bed or
comb her hair.
Jeanette... Jeanette, a 65-year-old
woman with four grown children and eight grandchildren, had always
been healthy. In 1992 she took a trip to mainland China, after which
several people became sick with a respiratory illness. Shortly after
she returned home, she had her carpets cleaned. The next day she had
a slight headache, which progressed to a severe flu-like illness with
head ache, chills, drenching sweats, and high-grade fever. Because
she seemed to have no respiratory involvement, her doctor believed it
was not the flu. He treated her for malaria, although she did not
test positive for it. Then he treated her for Lyme disease, also in
the absence of positive test results. Finally, she was sent to a
well-known clinic for diagnosis. That team of doctors decided that
she had an unknown viral illness and told her it would gradually
improve over time. She was bedridden for several months, during which
time she experienced significant deterioration.
Finally, she was referred to a clinic in New Jersey that specialized in the treatment of chronic fatigue syndrome. The physician at the clinic prescribed various medicines, most of which made her feel worse. She tried vitamins, minerals, enzymes, nutritious foods. The only help she found was a transient boost from Ritalin (methylphenidate), which en abled her to get up for 2 hours in the morning and an hour later in the day. Most things made her feel sicker and more tired. Eventually, Ritalin seemed to stop helping too.
Finally, she was referred to a clinic in New Jersey that specialized in the treatment of chronic fatigue syndrome. The physician at the clinic prescribed various medicines, most of which made her feel worse. She tried vitamins, minerals, enzymes, nutritious foods. The only help she found was a transient boost from Ritalin (methylphenidate), which en abled her to get up for 2 hours in the morning and an hour later in the day. Most things made her feel sicker and more tired. Eventually, Ritalin seemed to stop helping too.
Of the symptoms she now has, Jeanette
describes the most debilitating as the need to lie down "at
least 22 hours a day. I even have to lie down to eat because it takes
all my energy to stand up for the 5 or 10 minutes it takes to
pre pare my meal. In the mornings I can be up for an hour—if I'm
careful. Of course, if I overdo, I pay for it for several days or
perhaps weeks."
Nick... Nick, a 29-year-old landscaper
with his own business, first became seriously ill in 1992 after
contracting the flu. After several months, he felt a little better
and resumed working part time. However, he never felt completely
re covered. About a year later, he was diagnosed with CFIDS. Over the
course of the following year, he tried many different therapies and
treatments, both conventional and alternative, and saw significant
improvement. In 1995, 3 years after having contracted the illness, he
visited a nationally known CFIDS specialist and was told he was "in
recovery." This was welcome news for Nick. He continued weight
lifting to recover his strength and followed a low sugar, high
protein diet, which seemed to make a difference. Currently, Nick is
troubled by cognitive problems, joint pain, and fatigue. While he has
made significant improvement since his early years with CFIDS, he is
not recovering at the rate he would like and is quite discouraged by
the periodic setbacks.
At first glance these four people have
very different stories to tell. A young man never recovers from a
bout with the flu. A 30-year-old woman feels dragged out for years
with an unknown virus but is able to function. A teenager becomes ill
with "mono" in the early 1960s and not only never recovers
completely but feels progressively worse over the next 30 years. A
grandmother becomes so ill after a trip abroad that suddenly her life
comes to a halt.
The above accounts, although dissimilar
in many respects, are familiar to CFIDS specialists around the
globe—a flu-like ailment that doesn't re solve and, in fact, seems
to produce myriad other debilitating symptoms; a series of
misdiagnoses from skeptical doctors; a period of confinement to bed
or home, which in Jeanette's case has lasted for years; and
medications that only seem to make matters worse.
CFIDS is, without doubt, one of the
most complex, multifaceted, baffling illnesses the medical world has
encountered. It has thus far defied anyone to identify its cause,
find a cure, or even formulate a good case de finition. It is hard to
describe and even harder to diagnose because its symptoms can range
from allergies to vertigo and can occur in every imag inable
combination. Most confusing, however, is the range in severity of
CFIDS, from mere inconvenience to an utterly disabling disease.
People with severe CFIDS, like Jeanette, can be completely bedridden,
unable to perform basic tasks without assistance, whereas those with
milder illness, like Sarah, may be able to work full time but feel
nagged by a persistent feeling that their energy has waned, or their
"get-up-and-go" just got up and went.
The enormous variation in severity and
symptoms of CFIDS, combined with a paucity of information regarding
the transmissibility, extent, and nature of the illness, has helped
contribute to the many misconcep tions about CFIDS. These
misconceptions, half-truths, and outright errors have not only led to
a certain complacency on the part of the medical es tablishment but
have made it difficult for people who have the illness to recognize
it in themselves, much less seek out appropriate treatments. Despite
their lack of knowledge, however, it is possible, just on the basis
of the clinical experience of the many doctors who have observed and
treated patients with CFIDS, to make some generalizations about the
salient characteristics of the illness. An understanding of these
often eases the task of identifying possible CFIDS in patients with
various "nonspecific" symp toms.
DISTINCTIVE FEATURES
One of the most notable characteristics
of CFIDS is that it often arises suddenly. Many, if not most,
patients with CFIDS can give the precise date they first started
experiencing symptoms. Often these patients describe the onset as
"flu-like," with many symptoms typical of a viral
infection. The sudden onset of the illness is what allows a good
diagnostician to distin guish CFIDS from many of the ailments and
conditions CFIDS can resemble, such as allergies, endocrine
abnormalities, multiple sclerosis, and mood disorders, none of which
develops from one moment to the next.
To complicate matters for the
diagnostician, and for the patient seeking a diagnosis, CFIDS does
not always come on suddenly after a flu-like illness. It can also
develop with deceptive slowness, its symptoms emerging one by one
until the patient's life is irrevocably changed. In these cases it
may be difficult for the person experiencing the symptoms to
recognize that anything is amiss until months or even years have
passed, especially if that person maintains a busy, active life. In
these cases there is a strong ten dency to attribute the growing
signs of illness to stress, overwork, or aging. Samantha, a former
licensed professional counselor and school psycholo gist, presents a
good example of how CFIDS can manifest itself slowly and insidiously.
It is now thought that close to half of CFIDS cases can develop in
just this manner. Needless to say, these are the hardest for a doctor
to diagnose. The patient may go from doctor to doctor for years
before a tentative diagnosis is reached.
Another important characteristic is
that CFIDS symptoms generally wax and wane. This may help distinguish
CFIDS from many of the other diseases and conditions that may share
similar symptoms with CFIDS. Typically, someone who contracts CFIDS
suddenly will experience a period of pronounced illness for several
months, followed by shorter periods of remission and relapse. Most
patients with CFIDS refer to these as "good days" and "bad
days." (People who are not ill must remember that a "good
day" for someone with severe CFIDS may consist simply of getting
out of bed.) Periods of remission and relapse can be entirely random,
following no particular pattern, or can be cyclic, occurring at
certain times of the year (fall and spring for many people) or, in
women, may be influenced by hormonal cycles. Sometimes relapses can
be attributed to a known cause, such as exertion, exposure to a
toxin, or physical injury.
A final, but important, point
concerning prevalence is that CFIDS is not restricted to any
particular group. It can strike anyone at any time. It affects people
of all ages, as we can see from Jeanette, who was 60 years old when
she contracted CFIDS, and Maya, who was only 7 years old (see Chapter
10).
CFIDS also affects men, though perhaps
not in such high numbers as women (women are affected by all
autoimmune diseases in higher proportions than men). Neither does
CFIDS confine itself to a particular income group. Patients with
CFIDS range from wealthy celebrities to school custodians, from
doctors to construction workers.
Contrary to the media myth that CFIDS
primarily attacks white, middle-class women, CFIDS does not
discriminate by race or ethnic origin. Results of a recent
demographic survey conducted in San Francisco indicated a significant
rate of CFIDS among African-American and Native American populations.
The study also reported that the average yearly income of patients
with CFIDS is about $15,000. Although CFIDS usually strikes
sporadically, affecting only one member of a family or work group, it
can also occur in epidemics. Since the 1930s more than 60 CFIDS
epidemics have been recorded. At no time during these epidemics was
there any indication that CFIDS was a particularly selective disease.
CFIDS SIGNS AND SYMPTOMS CHECKLIST (in
order of frequency)
[ ] Severe, debilitating and disabling
fatigue, usually made worse by physical exercise
[ ] Recurrent flu-like illness, often
with chronic sore throat Low-grade fever and feeling hot often, low
body temperature Random muscle and joint aches with "trigger
points"
[ ] Nervous system problems
[ ] Sleep disturbance
[ ] Severe headache
[ ] Changes in vision
[ ] Seizures
[ ] Numb or tingling sensations
[ ] Loss of balance, dizziness
[ ] Feeling "spaced out" or
"cloudy"
[ ] Frequent, unusual nightmares
[ ] Depression
[ ] Anxiety, panic attacks
[ ] Personality changes (usually
intensification of a previous tendency)
[ ] Mood swings
[ ] Difficulty moving the tongue to
speak
[ ] Tinnitus (ringing in the ears)
[ ] Paralysis
[ ] Severe muscle weakness
[ ] Blackouts
[ ] Photophobia (light sensitivity)
[ ] Alcohol intolerance
[ ] Changes in taste, smell, hearing
[ ] Decreased libido
[ ] Muscle twitches
[ ] Cognitive function problems
[ ] Attention deficit disorder
(inability to concentrate)
[ ] Calculation difficulties
[ ] Memory loss
[ ] Spatial disorientation
[ ] Word searching or saying the wrong
word
[ ] Severe premenstrual syndrome (PMS)
or exacerbation of symptoms before and during period
[ ] Weight changes, usually loss
followed by gain
[ ] Painful, swollen lymph nodes
(lymphadenopathy), especially on the neck and underarms
[ ] Abdominal pain, diarrhea, nausea,
gas, irritable bowel
[ ] Thyroid pain or dysfunction
[ ] Severe new allergic reactions to
medicines, food, and other substances
[ ] Night sweats
[ ] Heart palpitations
[ ] Uncomfortable or frequent urination
[ ] Rash of herpes simplex or shingles
Other signs and symptoms
[ ] Rash
[ ] Hairless
[ ] Chest pain
[ ] Dry eyes and mouth
[ ] Impotence
[ ] Cough
[ ] Temporomandibular joint (TMJ)
dysfunction
[ ] Mitral valve prolapse
[ ] Canker sores
[ ] Cold hands and feet
[ ] Carpal tunnel syndrome
[ ] Pyriform muscle syndrome causing
sciatica
[ ] Gum disease
[ ] Endometriosis
[ ] Shortness of breath
[ ] Temperature and weather sensitivity
HISTORICAL BACKGROUND
One of the most perplexing questions
surrounding CFIDS is how it began. Like other questions about CFIDS,
the answer remains elusive. Debate is ongoing among researchers as to
whether CFIDS is a recent phenomenon or a disease with some history.
Some argue that CFIDS has been around for several hundred years;
others present compelling evidence that CFIDS is a relatively new
disease, arising in the last few decades at best. Those who maintain
that it has been with us for centuries point to accounts of other
diseases with similar symptoms, such as muscular rheumatism in the
1680s or neurasthenia, first described in the late nineteenth
century. Proponents of this position maintain that CFIDS, as it is
currently described, is merely a new name for an old illness. In
direct op position to this viewpoint, many others believe that this
is a true twentieth century disease, a product of the "cocktail
effect" of an environment pol luted by neurotoxins, new or
mutated viruses, contaminated vaccines, and other factors.
The question of where the illness
originated is as elusive as when. Outbreaks of CFIDS-like diseases
were reported in Northern Europe and the United States as early as
the 1930s. The first documented epidemic outbreak of CFIDS, or
myalgic encephalomyelitis (ME), as the illness is known in Great
Britain and Canada, occurred in 1934 in Los Angeles County Hospital
and affected 198 health care workers, mainly doctors, nurses, and
technicians. Because this outbreak followed on the heels of a
poliomyelitis epidemic, in the first few weeks it was diagnosed as
polio. However, this early diagnosis was revised when doctors noticed
that, unlike polio, this new ailment did not cause paralysis or
death. It also pro duced myriad symptoms: headache, easy fatigability
(especially after exertion), loss of appetite, intestinal
disturbances, sweating, chills, stiffness in the back and neck,
weakness, pain, insomnia, impaired memory, mood swings, and hair
loss. The disease tended to strike suddenly, with an incubation
period of less than a week, although insidious onset over a few weeks
was also observed, producing a set of symptoms that remained intense
and variable over the first 6 months, then becoming chronic and
rel atively stable. Dr. Alexander Gilliam, the epidemiologist who
chronicled the outbreak, remarked, "If the disease were not
poliomyelitis, the epidemic is equally extraordinary in presenting a
clinical and epidemiological picture, which, so far, is without
parallel."
A second major outbreak occurred in
Iceland in 1948 and 1949. Like the Los Angeles County Hospital
outbreak, this epidemic also followed on the heels of a polio
epidemic. An important difference was that the epidemic was not
restricted to health care professionals but spread to the general
population. The majority of the more than 1000 persons affected by
"Iceland disease," as it came to be called, lived in three
rural towns. Investigators were at first perplexed by this new
disease, thinking it to be a form of polio. However, the symptom
pattern did not match their expectations of polio. In all cases,
those who came down with Iceland disease had muscle pain and
tenderness, numbness, and twitching, but not paralysis. Doctors also
noted an unusual and troublesome persistence of cognitive and
emotional problems in the recovery phases.
A series of outbreaks occurred in the
1950s. One of the better docu mented was the 1955 outbreak in London
at the Royal Free nurse's training hospital. Like other outbreaks,
the attack rate was unusually high: 2.8% in men and 10.4% in women.
Epidemic outbreaks also occurred in Adelaide, South Australia, from
1949 to 1951; in Kingston, New York, in 1951; in Coventry, England,
and Denmark in 1953; and in Pittsfield, Massachusetts, and Punta
Gorda, Florida, in 1956.
Very little is known about the
incidence of CFIDS in non-European countries (with the exception of
Japan where the illness is known as low natural killer cell syndrome,
or LINKS). However, what is clear from a historical review is that,
over time, the incidence of epidemic outbreaks has been matched, if
not superseded, by increasing numbers of sporadic cases. Most people
contract CFIDS individually, and it is to these people that current
research efforts as to the nature, extent, and clinical outcome of
the illness should be directed.
CONTEMPORARY DEVELOPMENTS
One of the most significant outbreaks
in recent CFIDS history occurred in Incline Village, Nevada, in late
1984. This outbreak propelled the illness into the public arena.
Incline Village is a small resort town located on picturesque Lake
Tahoe. In the fall of 1984, two local physicians, Dr. Daniel Peterson
and Dr. Paul Cheney, began to see patients who seemed to have an
unusually severe and debilitating flu. What was particularly puzzling
to the doctors was that these patients did not recover. Months after
the initial onset of the illness, patients still reported severe
symptoms and, in many cases, there was no detectable improvement. As
time went on, the doctors saw increasing numbers of patients with the
same malady. Sometimes these patients were seen in clusters. In one
instance, the members of a girls’ basketball team became ill; in
another, it was schoolteachers in the nearby town of Truckee, Nevada.
By mid-1985 the number of patients with this mysterious malady topped
100.
The doctors were stymied by the
illness. They had not previously en countered a disease process that
reduced active, energetic individuals to bedbound invalids, with no
identifiable cause. The symptoms they observed were unusual in both
severity and range: exhaustion, pain, sleep disturbance, cognitive
disorder, and a plethora of nervous system problems. Convinced that
this was an outbreak of a new disease, the doctors contacted the
Centers for Disease Control and Prevention (CDC), the government
agency responsible for monitoring and controlling contagious diseases
in the United States. Unfortunately, the CDC shed little light on the
ailment and, in fact, ultimately presented a considerable obstacle
for patients, subsequent researchers, and clinicians. Thereafter, in
large part because of the CDC's casual treatment of the outbreak in
Nevada, the illness became known as a figment of the overachieving
young professional's imagination—the "yuppie flu," as
dubbed by the press.
The dismissive attitude that
characterized the government's response to the outbreak did little to
help control the spread of the illness. Through the 1980s the number
of patients with severe, unrelenting flu-like symptoms increased,
prompting doctors to take notice. Dr. Carol Jessop in San Francisco
noted that starting in the early 1980s patients began reporting a
viral-like ailment that did not resolve over time. A Harvard
University physician, Dr. Anthony Komaroff, first noticed patients
with similar clinical symptoms in the late 1970s, but became even
more attentive to the ill ness when he saw increasing numbers in his
Boston practice in the early part of the next decade. During this
time, Dr. Richard DuBois in Atlanta, Dr. James Jones in Denver, Dr.
Irena Brus (now deceased) in New York, and Dr. Herbert Tanner in
Beverly Hills all observed an increase in patients with this unique
clinical picture. For these physicians the illness was in deed
striking, and they puzzled individually about what was making their
formerly healthy patients so ill that they were forced to leave jobs
and schools and abandon so many of the activities previously
important to them.
In 1985 another epidemic was reported,
this time in a small rural community in upstate New York. Dr. David
Bell, a pediatrician working in Lyndonville, began seeing patients
with recurring flu-like symptoms, abdominal pain, dizziness, fatigue,
headache, joint pain, and cognitive deficit in 1983. By 1987 more
than 200 people, 44 of whom were children, had contracted the
illness. Like Dr. Cheney and Dr. Peterson, Dr. Bell's attempts to
draw attention to the outbreak met with little success. However, he
continued in his search for an explanation and eventually joined with
Dr. Peterson and Dr. Cheney to research the cause of this malady.
The persistence of a few doctors who
refused to dismiss the suffering of their patients, combined with
press coverage, however superficial, aroused public and professional
interest in the illness. Medical journals such as the Annals of
Internal Medicine began to publish articles that described a
long-term flu-like disease with notable neurologic and immunologic
compo nents. At first the illness was attributed to the Epstein-Barr
virus (EBV), which causes mononucleosis, because of the high titers
of EBV antibodies in this group. At the time, EBV seemed to be a
perfect candidate for a causative factor because many of the symptoms
the patients had were similar to those of "mono." However,
this theory was soon dismissed when it was shown that EBV antibody
concentrations did not correspond to the severity of the illness, nor
were high liters unique to patients with the ill ness. Over time, it
was found that people with the mysterious ailment had high antibody
liters to a number of viruses in the herpesvirus family:
cytomegalovirus, coxsackievirus, and human herpesvirus 6.
Nevertheless, the theory that EBV caused the new illness caught on,
and the disease be came popularized as "chronic Epstein-Barr"
or just "Epstein-Barr."
In the late 1980s publicity about the
illness began to gain momentum. Hillary Johnson, a journalist who
contracted the illness, wrote an award-winning series for Rolling
Stone magazine called "Journey Into Fear: The Growing Nightmare
of Epstein-Barr Virus." The story attracted national attention.
(Johnson later wrote Osier's Web: Inside the Labyrinth of the Chronic
Fatigue Syndrome Epidemic, a compelling expose of CFIDS history and
politics.) In 1990 Newsweek ran a cover story on the illness, which
was the bestselling issue of the year. Stories were aired on popular
television programs such as "20/20." As a result, the CDC
was flooded with calls from patients from all parts of the country
who were desperately seeking information and advice. It seemed
thousands more people had the illness than the agency had ever
imagined.
From that point on, interest surged.
Prodded into action by persistent patients and diligent doctors, in
1988 the CDC devised a case definition and gave the illness a name,
chronic fatigue syndrome (CFS). Though many clinicians and patients
considered the guidelines woefully inadequate and the name derisive,
it did give physicians a uniform description and a place to begin in
making a diagnosis. Patient groups also were formed. The end of the
decade saw the birth of the first national organization, the National
CFIDS Association, based in Charlotte, North Carolina. With a
national organization came advocacy, representation at the nation al
level, fund-raising for research, organized media campaigns, public
awareness programs, and patient education. Local support groups
sprang up all over the United States, providing information,
assistance, and validation for hundreds of thousands of patients. In
April 1990 the first international symposium was held in Cambridge,
England, drawing clinicians and researchers from all over the world.
It was a momentous event, providing doctors, epidemiologists, and
medical investigators with the first opportunity to share their
observations and knowledge about a disease that had puzzled observers
for the better part of the century.
The current status of CFIDS is rapidly
evolving. The CDC has recently placed CFIDS on its "Priority
One: New and Emerging" list of infectious diseases, a list that
also includes Lyme disease, hepatitis C, and malaria. Government
research funds have increased 10-fold in 8 years, from a mere $1.2
million in 1988 to $13.5 million in 1996 and, although still far from
sufficient, this funding has stimulated investigation into the nature
and cause of the disease. Large patient organizations such as the
22,000-mem-ber CFIDS Association of America and the ME Associations
of Canada and Great Britain have garnered considerable private
support for CFIDS research and put pressure on government agencies
and organizations. Through the efforts of these organizations, May 12
was declared International CFIDS Awareness Day. After 4 years of
patient lobbying and activism, this day was formally recognized on
the floor of both the U.S. House and Senate. Also in 1996 it was
announced in San Francisco at the national conference of the American
Association for Chronic Fatigue Syndrome that research at Temple
University may have led to the discovery of a diagnostic test for
CFIDS. And on the treatment front, Ampligen, a drug thought to be an
important overall treatment for CFIDS, has finally become available
in Canada and Europe and has achieved experimental status in the
United States.
While the historical questions of how,
when, and where CFIDS originated may be debatable, the question of
its current status is not. Almost all reputable research institutions
and clinicians agree that CFIDS has become a serious public health
problem. The CDC estimates that CFIDS has affected around 500,000
individuals in the United States, a conservative estimate in most
clinicians' opinion. Independent prevalence studies have estimated
double or more this number, with figures reaching into the millions
for the United States alone.
Although the definitive cause of CFIDS
remains unknown, it is hoped that through the continued involvement
of patient groups and increased funding for research some of the
questions surrounding the cause of this elusive illness soon will be
answered and a cure found.
IN SEARCH OF A CAUSE
Although the enigmatic nature of CFIDS
has inspired numerous scien tific and popular publications, and
millions of dollars (most would say not nearly enough) have been
spent in research, relatively little is known about the mechanisms of
the illness, and nearly nothing of its cause. Debate about each of
these aspects of CFIDS has raged for at least a decade, with most
specialists falling into one of several camps.
The theory that currently holds sway is
that CFIDS is caused by a virus. This point of view is supported by
history (CFIDS epidemics have fol lowed polio epidemics), incidence
(correlation with a flu-like prodromic illness), symptoms (swollen
lymph nodes, low-grade fever, sore throat), and similarities with
other viral ailments, notably mononucleosis and post-polio syndrome.
A viral cause is also indicated by research. In the mid-1980s, Dr.
Cheney and Dr. Peterson, the two clinicians who reported the 1984
outbreak in Incline Village, Nevada, found high liters of EBV in
their patients. At the time, they believed the illness was caused by
chronic activation of the virus. However, the presence of high liters
in most of the healthy population made that theory untenable.
Nevertheless, the idea that a virus was at the root of the problem
persisted. In 1986 Dr. Michael Holmes, a researcher in New Zealand,
found evidence of a retrovirus. This finding was supported by
research conducted in 1990 by Dr. Elaine De Freitas of the Wistar
Institute in Philadelphia. She found viral fragments in the
mitochondria of cells from patients with CFIDS, which seemed to
indicate the presence of a retrovirus.
Not all researchers agree that a
retrovirus is implicated. Dr. John Richardson, a British physician
who has been treating patients with CFIDS for four decades, believes
an enterovirus much like that which causes polio may be at the root
of the illness. He draws on the remarkable similarity and incidence
of polio-related problems and CFIDS. Dr. Peter Behan and his team of
researchers in Glasgow, Scotland, have also found indications of a
persistent enteroviral infection in about 60% of patients with CFIDS
they have tested. Dr. Behan speculates that the virus is a mutated
form of poliovirus that attacks the brain rather than the spinal
cord, causing a "cas cade effect." Other researchers in
Great Britain believe coxsackievirus may be the culprit. Stealth
viruses and spuma viruses have also been proposed. The disturbing
reality is that no conclusive evidence of active viral infec tion by
a single virus has been found, despite all the clues to the contrary.
It is as though researchers can find only the tracks of the beast,
while the quarry itself evades capture.
Environmental factors have also been
implicated as possible causes, particularly in cases with gradual
onset. Those who contend that CFIDS is the result of environmental
contamination essentially consider CFIDS to result from the body's
inability to rid itself of toxins. This is the perspective Dr. Sherri
Rogers puts forth in her book, Tired or Toxic? Dr. Majid Ali, another
physician who believes that CFIDS is caused by toxic overload, writes
in his book, The Canary and Chronic Fatigue, that "chronic
fatigue sufferers are human canaries—unique people who tolerate
poorly the biologic stressors of the late 20th century." His
point of view is that people with CFIDS are prone to injury from
environmental causes, such as pollu tion, chemical injuries, and
unmanaged allergies, much as canaries are to underground gases. In
other words, the CFIDS population is a warning to all the rest that
the environment is becoming dangerous.
A number of other clinicians and
independent researchers have also pointed out that environmental
factors may play a key role in how CFIDS develops. Joe Mangano, MPH,
puts forth the theory that CFIDS could be a radiation-related
disorder (CFIDS Chronicle, Winter 1994). He points out that the
immunologic abnormalities found in patients with CFIDS (large numbers
of cytokines such as interferon alpha and interleukins and re duced
number of natural killer cells) could be attributed to constant
exposure to low-level ionizing radiation from atmospheric tests
conducted since the 1940s (a period that roughly corresponds to the
major CFIDS outbreaks in the United States). Mangano proposes that
the effect of at mospheric fallout, though not enough of a factor in
itself to cause a large-scale health trend such as CFIDS, may operate
synergistically with other environmental factors, such as industrial
pollution, carcinogens in con sumer products, and occupational
hazards, to create "health effects."
A third proposed theory is that CFIDS
may be genetic. Proponents of this theory maintain that people with
CFIDS have a genetic defect that enables them to contract the
illness. However, to date no genetic marker has been found and this
theory remains in dispute. Of course, no virus has been found either.
But in the case of the virus, there are numerous indica tors that a
viral infection is present. What most undermines the genetic
ar gument is that CFIDS can occur in epidemic form, as it has with
some frequency.
While the debate continues and theories
proliferate, people continue to be struck down by this curious,
undefinable malady. The lack of a known cause can be a stumbling
block for doctors. It certainly complicates the process of diagnosis
in this day and age of test results. However, as with other illnesses
whose cause is not clear, a diagnosis can still be made and
appropriate treatments devised.
DIAGNOSIS
Contrary to popular belief, CFIDS is a
distinct, recognizable entity that can be diagnosed relatively early
in the course of the disease, providing the physician has some
experience with the illness. It is by no means a "waste-basket
diagnosis." Experience is, in fact, the main stumbling block
that prevents many physicians from making the diagnosis. They simply
don't recognize it. Physicians who have attended outbreaks of the
illness and, as a consequence, have seen hundreds or thousands of
patients with CFIDS have little difficulty recognizing the specific
markers, indicators, and signs.
A first step in making a diagnosis is
to compare the patient's history and symptoms with the CDC case
definition. The CDC case definition is not always a useful tool for
clinicians. It was developed to define uniform study populations for
research purposes. However, if a patient meets the CDC criteria, at
least the first step will have been made toward a diagnosis.
Unfortunately, a significant proportion of patients with CFIDS do not
meet these rather rigid criteria. In these cases, an in-depth
examination of the history and symptoms is particularly important.
Usually the time re quired to take the history for a patient with
CFIDS will exceed the expected 1-hour initial appointment by an hour
or more.
Taking a careful history is essential
in making a diagnosis and is much more important than comparing the
patient's symptoms with the CDC case definition. The physician should
consider type of onset (acute or in sidious), triggering mechanisms
(exposure to chemicals, viral infection, physical trauma), and any
other mitigating factors that might influence the severity or
persistence of the illness. In general, symptoms that develop quickly
after an initial trigger are indicative of CFIDS.
Most specialists also question their
patients carefully about the type of symptoms they are experiencing.
CFIDS is a syndrome, which means that multiple symptoms must be
present. Many of these symptoms are reflective of an autonomic
nervous system disorder; others are indicative of a persistent viral
infection. What is important to the doctor is not necessari ly that
you have all of the symptoms, or even a certain percentage, but that
they cover a spectrum. The symptoms most doctors consider
particularly significant are relentless, persistent, or disabling
fatigue, pain, sleep disorders, and cognitive problems. Other
symptoms can occur in an astounding array. Even if the patient does
not have all of the symptoms, it is highly un likely that a diagnosis
can be made on the basis of only one or two.
Finally, the physician should order all
the necessary tests to rule out illnesses that produce similar
symptoms and, in most cases, insurance cover age permitting, look for
immune system deficiency and other abnormalities typical in the CFIDS
patient population. In most instances, exclusionary tests are not
expensive or difficult to perform. Depending on the symptoms, the
physician may wish to rule out Lyme disease, lupus, rheu matoid
arthritis, or other autoimmune disorders, parasitic infections, heart
disease, specific neurologic disorders such as multiple sclerosis,
endocrine disorders such as hypothyroidism, and systemic infections
and in flammatory conditions (as indicated by a high erythrocyte
sedimentation rate). In general, patients with CFIDS test negative
for other conditions. However, as many specialists have noted,
nothing prevents a person from having two conditions simultaneously
or developing one after the other. Thus a positive test result does
not necessarily rule out a diagnosis of CFIDS. In fact, weakly
positive results are sometimes indicative of the illness. Weakly
positive antinuclear antibodies, for example, are not at all uncommon
in the CFIDS population.
Immune system tests are more useful to
confirm a specific diagnosis of CFIDS. Immune system testing is still
in its infancy, so results cannot be reliably interpreted by anyone
other than an immunologist or CFIDS specialist. Even among
specialists, there is tremendous dissent as to what these test
results actually mean. The value of having these tests done is to
determine whether the patterns seen in the test results are similar
to those of other people with CFIDS. Many (but not all) people with
CFIDS have re duced numbers of natural killer cells, increased
numbers of circulating cytokines (such as alpha interferon and the
interleukins). Immune cell function also may be measured. Patients
with CFIDS generally have diminished T and B cell function. Reaction
to pokeweed mitogen, total immunoglobulin production (IgG, IgA, IgM),
and demonstrable anergy (lack of immune response) when tested with
foreign proteins can help de termine the effectiveness of immune cell
responsiveness.
Along with immune system tests, most
CFIDS specialists look for evi dence of viral reactivation. People
with CFIDS usually show evidence of reactivation of latent viruses,
particularly in the herpesvirus family, such as Epstein-Barr virus,
human herpesvirus 6, and cytomegalovirus. Reactivation of latent
viruses (as indicated by high liters) provides further proof of
immune system dysfunction because in a healthy person these viruses
are controlled.
Neurologic examinations are also useful
in making a diagnosis. The Romberg test, a simple test that can be
performed in the doctor's office, can indicate neurologic impairment.
For those who can afford it, a single-photon emission computed
tomography (SPECT) scan can reveal areas of the brain with reduced
blood flow, also a common finding in people with CFIDS. For patients
with severe cognitive impairment, IQ tests and other neurocognitive
examinations may be recommended. Not all of these spe cialized tests
are necessary to make a diagnosis, although someone applying for
disability insurance may need some of them to file.
Although there is not yet a test that,
by itself, confirms a diagnosis of j CFIDS, the combination of
exclusionary, viral, neurologic, and immune system tests usually
suffice for a diagnosis. However, undergoing all these tests can be
both expensive and nerve-racking for the patient. A single diagnostic
test would considerably lessen the financial and emotional burden of
lengthy testing. It is hoped that such a test for CFIDS will be
available soon. Dr. Robert Suhadolnik, a professor of biochemistry
and mem ber of the Temple University Pels Institute for Cancer
Research and Molecular Biology in Philadelphia, has reported that
people with CFIDS may possess a novel enzyme. In studies performed
over the last several years, Dr. Suhadolnik found that people with
CFIDS have a defect in their antiviral defense system that he
believes is due to a faulty enzyme known as ribonuclease (RNase) L.
No healthy controls tested positive for the faulty enzyme in a small
pilot study. "This new enzyme," he states, "may not
function as well as the normal RNase L found in healthy people. It
may explain why CFS patients' bodies have a hard time maintaining the
energy necessary for cellular growth." It would also explain the
difficulty in con trolling viral proliferation in patients with
CFIDS. The university has filed a patent application for the test and
is currently seeking a corporate part ner to license it. However,
further studies in a larger patient population will be required
before the test can be used as a reliable diagnostic tool. To this
end, the National Institutes of Health (NIH) has appropriated funds
for an expanded study.
CASE DEFINITION FOR CFIDS* (Centers for
Disease Control and Prevention: December 1994)
Chronic fatigue syndrome is deemed by
the presence of the following:
1. Clinically evaluated, unexplained,
persistent, or relapsing chronic fatigue that is of new or definite
onset (has not been lifelong)
• Is not the result of ongoing
exertion
• Is not substantially alleviated by
rest
• Results in substantial reduction in
previous levels of occupational, educa tional, social, or personal
activities
2. Concurrent occurrence of four or
more of the following symptoms, all of which must have persisted or
recurred during 6 or more consecutive months of illness and must have
predated the fatigue
• Self-reported impairment in
short-term memory or concentration severe enough to cause substantial
reduction in previous levels of occupational, educational, social, or
personal activities
• Sore throat
• Muscle pain
• Multijoint pain without joint
swelling or redness
• Headaches of a new type, pattern,
or severity
• Unrefreshing sleep
• Postexertional malaise lasting more
than 24 hours
*For reprints call the Centers for
Disease Control and Prevention (404-639-1338).
SPECIFIC TESTS THAT HELP CONFIRM
DIAGNOSIS OF CFIDS
These tests are expensive and, in most
cases, cannot be performed locally. A positive result does not
necessarily confirm a diagnosis of CFIDS, but merely supports it. A
diagnosis can be made without performing any of these tests, but for
the more severely ill, some may be advisable.
• Viral infection: Positive for
cytomegalovirus, Epstein-Barr virus, human herpesvirus 6, and
coxsackievirus; negative for hepatitis A or B virus
• Immune system: Low natural killer
cell counts, elevated interferon alpha, tumor necrosis factor,
interleukins 1 and 2; T cell activation, altered T4/T8 cell ratios,
low T cell suppressor cell (T8) count, fluctuating low and high T
cell counts, low and high B cell counts, antinuclear antibodies,
immunoglobin deficiency, sometimes antithyroid antibodies
• Exercise testing: Decreased
cortisol levels after exercise, decreased cerebral blood flow after
exercise, inefficient glucose utilization, erratic breathing pattern
• SPECT scans: Hypoperfusion in
either right or left temporal lobe especially after exercise
TESTS AND OBJECTIVE MEASUREMENTS FOR
CFIDS
Initial Office Observations
• Blood pressure: usually low
(orthostatic hypotension)
• Temperature: low (97° F) or
slightly elevated (<100° F) or, more commonly, both over the
course of a day (excessive diurnal variation)
• Heartbeat: tachycardia (hard to
detect in an office visit; Holter monitor more ef ficient)
• Throat: irritated
• Lymph nodes: tenderness in nodes of
groin and neck, particularly on left side
• Pallor: usually present
• Positive Romberg test (tandem
stance)
• Stiff, slow gait
Routine Screening Tests
' Complete blood cell count with
differential: decreased number of white blood cells (leukopenia),
increased number of white blood cells, abnormal red blood cell
membranes, low concentrations of zinc and magnesium, low uric acid
con centration (<3.5 mg/dl), total cholesterol concentration
slightly elevated
• Sedimentation rate: Low (<5
mm/hr); sometimes brief periods of elevated rate (>20 mm/hr)
• Urinalysis: alkaline; mucus or
blood, or both, without bacterial infection
Exclusionary Tests
• Autoimmune system: negative for
lupus, rheumatoid arthritis, Hashimoto's dis ease
note: Patients sometimes test positive
on initial screening but not on more specific tests.
• Endocrine system: Addison's
disease, Cushing's disease, hypothyroidism, diabetes mellitus
note: Warranted if patient demonstrates
signs of hypothyroidism, such as en larged thyroid gland (goiter).
Although some patients with CFIDS with en larged thyroid gland test
negative on standard tests, more refined tests may re veal secondary
thyroid deficiencies.
• Heart: negative for mitral valve
prolapse
note: Warranted if patient reports
tachycardia. Tests sometimes reveal elevat ed transaminase
concentrations and angiotensin-converting enzyme.
• Liver: negative for hepatitis
• Neurologic system: negative for
multiple sclerosis (MS)
note: Warranted if patient shows severe
neurologic, cognitive, and muscle dysfunction. Although some patients
with CFIDS may test negative for MS, more specific testing (brain
function) may reveal abnormalities.
• Bacterial: negative for
tuberculosis, brucellosis, Lyme disease
• Cancer: negative for lymphoma
• Parasites: negative for
toxoplasmosis, giardiasis, amoebiasis
note: Patients with CFIDS can have
multiple parasitic infections as part of a prodromal illness.
• Toxins: mercury, solvents,
pesticides, etc.
RECOVERING FROM CFIDS
Most people who are diagnosed with
CFIDS want to know, first and foremost, when they will recover. Will
CFIDS last 2 years? Ten years? Or is it a life sentence?
Unfortunately, for people with CFIDS, the answer to this question is
not usually forthcoming. Doctors with little experience with the
illness may tell their patients anything from "Go home and rest
and you'll be better in a few months" to "Nobody recovers
from CFIDS." Doctors with more experience, however, tend to be
more circumspect. The reason for their hesitation is that there is
simply too much variation from case to case and far too little
information to be able to predict outcomes.
CFIDS is a notoriously unpredictable
illness. Some people recover completely within 1 or 2 years and can
return to their former lives, others improve enough to live with only
minor modifications of their former lifestyles, some must learn to
plan their lives within the parameters of symptoms that wax and wane,
a few must adjust to long periods of illness, or "plateaus,"
with little or no improvement, and, at the far end of the spec trum,
some do not show improvement and may even worsen over time.
Recovery times vary from a few months
(although these short-term cases go largely unreported and therefore
never make it into statistical tables) to decades. Statistics
reported by physicians are highly individual ized, with the more
renowned CFIDS specialists (who see the most severe cases) giving the
longest recovery rates and general and family practition ers the
shortest. However, most physicians tell their patients that CFIDS,
generally speaking, is a lengthy proposition—a matter of years, not
months. The prospect of a very long illness is always dismal, which
is why a diagnosis is often received with profoundly mixed feelings.
The only bright spot in the picture is that recovery does not
necessarily correlate with duration of illness. Dr. Dedra Buchwald, a
physician in Seattle, concluded after a 5-year study of local
patients with CFIDS that duration of the illness does not correlate
with outcome.
Significant improvement and perhaps
recovery are possible even after many years of illness. There are
documented cases of long-term sufferers who have recovered
completely. Anne, a CFIDS patient from North Carolina, claims full
recovery after 19 years of illness. Dean Anderson, in a personal
account, says he did not even begin to see an improvement until
af ter 5 years (CFIDS Chronicle, Winter 1996).
The only generalizations that can be
made about prognosis are that people with milder cases seem to stand
a better chance of recovery (a truism for all illnesses) and people
with early diagnoses who seek appropriate treatment tend to improve
more quickly. The fact that early diagnosis and treatment seem to
correlate with recovery rate, at least in some cases, should be
sufficient motivation for the recently ill to seek the proper
specialist. However, even those who spend years searching for a
diagnosis should not lose heart.
Recognition and treatment any time during the illness can bring substantial improvement, if not full recovery. For most peo ple with CFIDS, especially those with severe cases, the possibility of "substantial" or even "partial" recovery should not be cause for distress but for celebration.
Recognition and treatment any time during the illness can bring substantial improvement, if not full recovery. For most peo ple with CFIDS, especially those with severe cases, the possibility of "substantial" or even "partial" recovery should not be cause for distress but for celebration.
It is the fervent desire of all people
with CFIDS and those who are close to them that a cure be found.
Already far too many years have been lost and far too many plans and
dreams abandoned by countless children and adults affected by this
illness. While we are waiting, it is important to bear in mind that,
above and beyond finding a cure, a number of variables can affect the
outcome of CFIDS. Each person is different. What each has in common
though is the need for hope.
The purpose of this book is to provide
a cause for hope; that is, information that may enable you to make
choices to influence the course of your illness for the better. If
you are a medical practitioner or caregiver, this book may help
provide much needed information and insights from various sources. In
any case, we hope this book will enable its readers to "hang in
there" and not lose sight of the light at the end of the long
CFIDS tunnel.
CHAPTER 2
HOW TO ASSESS AND MONITOR SYMPTOMS
One of the hallmarks of CFIDS is
diverse, wide-ranging symptoms that wax and wane. Because symptoms
vary so much, and because some symp toms eventually fall into
patterns, it is important to keep track of them.
Keeping a good symptoms record not only
helps identify patterns as an aid to treatment, but can help
distinguish CFIDS symptoms from sec ondary problems (infections, for
example). An additional benefit of keeping charts is that office
visits to clinicians go more smoothly. You don't have to keep all
your symptoms in your head or worry about how well you can express
them that day.
To keep track of symptoms, you need a
method. The accompanying chart will help keep track of symptoms,
daily influences, and certain objective measures. The first section
includes information useful to you and your doctor: temperature, to
track fever and low temperature fluctuations; basal temperature, to
indicate thyroid problems; weight, to track sudden gain or loss;
blood pressure; for women, day in menstrual cycle (day 1 is the first
day of your period; many symptoms worsen in the last 10 days of the
cycle); and weather conditions, which sometimes can exacerbate
symptoms. The next section of the chart lists types of symptoms:
primary symptoms, which are very indicative of CFIDS and often
present through out the illness; and more transitory secondary
symptoms. Rating symptoms with a rating scale (1 = mild, 3 =
intermediate, 5 = incapacitating) can prove important in the event
that if symptoms worsen over time, a doctor may want to order tests
for other systemic disorders such as thyroiditis, anemia, or
diabetes. If secondary symptoms are consistently severe or worsen out
of pace with primary symptoms, you should see your doctor. An added
benefit of tracking symptoms is that it is easier to identify some of
their causes, or at least some of the things that exacerbate
symptoms. It is also easier to prove to yourself that you are,
indeed, recovering if you keep good track of symptoms over an
extended period. The third section of the chart lists medications,
treatments, and supplements you are using.
In the beginning you may want to
complete a symptoms chart daily for several months. Later, during
recovery, you may make an entry only when trying new therapies,
during relapses, or occasionally just to keep a record of your
progress. Remember, having CFIDS does not exempt you from other
illnesses. If you notice new or unusual symptoms, especially after
CFIDS has been stable for a while, make sure you bring these to the
attention of your doctor.
In addition to rating your symptoms,
you may want to rate your illness overall. Many people with CFIDS
rate their illness on a scale of 1 to 10. The following scale will
help you gauge your overall symptoms and energy lev el. For example,
if you rate your condition at 8, you can do 80% of your normal
workload, and it will take you perhaps 20% longer; at 5 you can plan
on being able to do about 50% of what you would normally expect of
yourself, and it will take you twice as long; at 2, you can do 20% of
what you could do formerly, and it will take you five times longer;
at 1, you can't do anything. When setting tasks for yourself, this
rating scale will help you to be realistic and make allowances for
your limitations. By making al lowances for your limitations, you
will accomplish more and with less frustration than if you set out
with previous expectations in mind.
You can also use this scale to help
evaluate treatments. Doctors often observe that people who are
moderately to mildly ill respond much better to various treatments,
whereas those who are severely ill have fewer options.
1 (Severe) I am in bed all day. Getting
up for more than 10 minutes makes me feel awful. My symptoms are
incapacitating. I don't leave the house except for trips to the
doctor.
2 (Severe) I can get up for almost an
hour, but I still can't move around much. I don't leave the house
except for medical appointments and emergen cies. I need help for
household chores. I am always sick.
3 (Severe) I have a "window"
of time, maybe 2 or 3 hours, when I don't feel too bad, but I usually
still have to rest during that time. If I do too much, I have a
relapse. I can do some light housekeeping chores. Symptoms are always
with me, though sometimes they lighten up.
4 (Severe-Moderate) I can get up for 2
or 3 hours at a stretch, but I absolutely must rest for as much time
as I am up. I can prepare simple meals and do light housekeeping. I
can drive short distances, but prefer to have others do the driving.
I can cope with my symptoms.
5 (Moderate) I can get through the day,
but I need a long rest or a nap. I can do nearly all my housekeeping
chores. Symptoms are tolerable, though with relapses they can
sometimes become severe. I can get out during the day to run errands
or visit with friends if I rest afterward.
6 (Moderate) If I take short,
recuperative rests, I can get through the day. Sometimes I need to
nap. By dinnertime, I am often quite tired, and I need to get to bed
by 9:00 PM. I can drive short distances. I can work a little at home.
Sometimes symptoms seem to vanish altogether for short periods of
time.
7 (Moderate-Mild) I can get through the
day without needing a rest, but I need more sleep than I used to. I
can work part-time on a flexible schedule, al lowing for relapses. I
have longer periods of feeling almost normal.
8 (Mild) I can get through the day with
no problem, provided I don't skimp on sleep or overdo it. I can work
full-time, although I don't have much energy for anything else.
Relapses are usually short and, with a little rest, I recover well.
9 (Mild) My stamina is much improved. I
can hold a full-time job. Provided I get enough rest and watch
myself, I don't have relapses. I can go out in the evening without
"paying for it later," although I'm still more tired than
usual the next day. Symptoms are few and far between.
10 I am completely recovered. I have
lots of energy, with no sign of symp toms. I am back to climbing
mountains on weekends.
Obviously, the above criteria are not
ironclad. Many people who rate their illness at a 5 or 6 still manage
to force themselves to go to work. Others, because of their
particular array of symptoms, may be able to get out more or perform
more physical work. Children, for example, may have greater energy
levels than adults with the same degree of illness, and some men may
recover physical stamina faster than women, which allows them to work
even when other symptoms are debilitating.
Becoming familiar with your symptoms
and understanding their caus es is one of the biggest challenges of
CFIDS. Nevertheless, it is a challenge that, if met, can help open
the way to choosing treatments and coping strategies that will be
most effective for you.
CHAPTER 3
SPECIFIC SYMPTOMS AND TREATMENT TIPS
Allergies
Candida
Cardiac and Cardiovascular Symptoms
Cognitive and Emotional Problems
Digestive Disturbances
Dizziness and Vertigo
Endocrine Disturbances
Fatigue
Flu-Like Symptoms
Headaches
Hearing Problems
Hypoglycemia
Joint Pain
Loss of Libido
Muscle Problems
Oral Problems
Pain
Premenstrual Syndrome
Secondary Infections
Seizures and Seizure Activity
Shingles
Sinusitis
Skin, Hair, and Nail Problems
Sleep Disorders
Urinary Tract Problems
Vision and Eye Problems
Weather Sensitivity
Weight Loss or Gain
ALLERGIES
New onset of allergies or worsening of
existing allergies is a widespread problem in patients with CFIDS.
According to Dr. James Jones, 75% of people with CFIDS have
allergies, compared with 25% in the general population. Allergies can
be triggered by airborne agents, chemicals, or foods. The most
frequent airborne allergies in CFIDS are to molds, dust, and
pol lens. Chemical odors (perfumes, hairspray, gasoline, household
cleaners, plastic outgassing) can also produce allergic reactions.
Food allergies and sensitivities are common and comprise the full
spectrum of anything that can be ingested.
Allergy can be described as an
overresponse of the immune system in which immune cells mistakenly
identify an innocuous substance as a potentially harmful one. The
immune response involves the production of histamine, a chemical that
causes inflammation by increasing cell permeability and localized
blood flow (histamine is a vasodilator). Normally, inflammation
fulfills a positive role in combating infection. It serves to isolate
a wounded area and draw fluid to it, thereby enabling white blood
cells to identify and kill invading microorganisms. The increased
permeability of cell membranes allows for the release of heparin and
zinc, which are needed for connective tissue repair after injury. If
the mucous membranes are involved, the resulting inflammation
produces cold symptoms, stomach pain, and diarrhea. If the skin is
affected, the inflammation produces itching or rash. When the
allergic response is systemic, the inflammation can occur in any soft
tissue (throat, joint area, gums, brain) producing an astonishingly
wide array of symptoms.
It is not surprising, given the huge
overlap between allergic reactions and CFIDS symptoms, that some
allergists have mistaken CFIDS for allergy. The difference is that
CFIDS usually occurs suddenly and is prolonged, whereas allergies
generally run in families, are short-lived after provocation, and
manifest themselves gradually, often over the course of a lifetime.
Neither are they (generally) accompanied by fevers.
To confound matters, many clinicians have noticed that, although people with CFIDS demonstrate clear evidence of allergic reactions on standard tests, their allergies seem to fluctuate with the severity of the illness. This has led a number of clinicians and researchers to propose that many of the allergic reactions experienced by people with CFIDS should better be classified as sensitivities. Despite this debate, there are some significant commonalities between the two phenomena.
To confound matters, many clinicians have noticed that, although people with CFIDS demonstrate clear evidence of allergic reactions on standard tests, their allergies seem to fluctuate with the severity of the illness. This has led a number of clinicians and researchers to propose that many of the allergic reactions experienced by people with CFIDS should better be classified as sensitivities. Despite this debate, there are some significant commonalities between the two phenomena.
The immune system hyperresponse brought
about by CFIDS uses the same mechanism as an allergy—the action of
inflammation-mediating chemicals. Lucy Duchene, Ph.D., proposes that
histamine overproduction can substantially contribute to the
development of CFIDS' most significant effects (CFIDS Chronicle,
Summer 1993). Chief among these are increased excretion of
electrolytes, leading to dehydration and alteration in cell function;
binding to acetylcholine receptors, causing insufficient nervous
system responses in muscle and brain function; increased delta waves,
leading to daytime lethargy and disturbed sleep; stimulation of the
vagus nerve, contributing to activation of the parasympathetic
nervous system and general metabolic slowing; irregularities in heart
rate; gastrointestinal disturbances from histamine-induced release of
gastric juices, leading to acid stomach and other gastrointestinal
problems; release of adrenal hormones, leading to activation of the
sympathetic nervous system, speeding up of heart rate, increased
glucose metabolism, and, when prolonged, eventual adrenal exhaustion
and hypoglycemia; changes in gonadotrophin and prolactin levels,
causing hormone imbalance; changes in immune system function; and
last (but not least) both stimulation and de pression of certain
parts of the hypothalamus. As the brain appears to be one of the main
sources of the syndrome's many myriad effects, the ability of
histamine to cross the blood-brain barrier, affect the metabolism of
serotonin and acetylcholine, and ultimately alter functioning of the
hypo thalamus makes it a prime culprit for causing CFIDS symptoms.
ALLERGY SYMPTOMS
Allergies can affect any organ, with
symptoms that may include the following:
- Skin: Pallor, itching, burning, tingling, flushing, warmth or coldness, sweating be hind the neck, hives, blisters, blotches, red spots, pimples, dermatitis, eczema
- Eyes: Blurred vision, itching, pain, watering, eyelid twitching, redness of inner an gle of lower lid, drooping or swollen eyelids
- Ears: Earache, recurring ear infections, dizziness, tinnitus, imbalance
- Nose: Nasal congestion or discharge, sneezing
- Mouth: Dry mouth, increased salivation, stinging tongue, itchy palate, toothache
- Throat: Tickling or clearing, difficulty in swallowing
- Lungs: Shortness of breath, air hunger, wheezing, cough, mucus or recurrent bronchial infections
- Heart: Chest tightness, pounding or skipped heartbeats
- Gastrointestinal tract: Burping, heartburn, indigestion, nausea, vomiting, ab dominal pain, gas, cramping, diarrhea, constipation, mucus in stool; frequent, urgent, or painful urination, bedwetting (in children)
- Muscular system: Muscle fatigue, weakness, pain, stiffness, soreness
- Central nervous system: Headache, migraine, vertigo, drowsiness, sluggishness, giddiness
- Cognition: Lack of concentration, feeling of "separateness," forgetting words or names, anxiety, tension, panic, overactivity, restlessness, jitteriness, depres sion, premenstrual syndrome (PMS)
AIRBORNE ALLERGENS
When most people think of allergies,
what comes to mind is the sneez ing, wheezing, itching eyes, sinus
headaches, and runny nose that are the typical responses to airborne
allergens.
POLLEN. The strongly scented,
bright-colored flowers typical of heavy-pollen plants do not usually
cause problems for people with hay fever because they are usually
cross-pollinated by insects. Plants that produce light, abundant,
widely wind-distributed pollen create problems for allergic
individuals. When these small, light pollens are inhaled, the grains
pass into the bronchi, where they can cause the wheezing of an
allergic response. To complicate the picture, some pollens contain as
many as 15 allergenic compounds, which can stimulate a variety of
other systemic reactions. You should suspect an allergy to pollens if
you have the following symptoms during spring and fall:
• Your eyes itch and you have a thin,
watery nasal discharge.
• You feel worse outdoors between
8:00 am and noon, when most plants release pollens.
• You feel worse on clear, windy
days.
• Your symptoms improve after a
heavy rainstorm, when pollens are washed out of the air.
• Your symptoms improve after the
first frost in fall.
MOLD. The principal activity of mold is
to break down organic matter to make it available for other life. As
nature's greatest recycling force, molds can hardly be avoided. They
can be found on farms, in houses, at work, in factories, outdoors and
indoors, in showers, refrigerators, food, under rugs, and any place
it is warm and humid. Molds can also colonize the body, as in
systemic or local Candida overgrowth, athlete's foot, ringworm, and
various other fungal infections. Molds cause special problems because
the frequent overgrowth of Candida experienced by people with CFIDS
can produce an allergy to molds in general (see Candida). In contrast
to pollen and food allergies, mold symptoms do not include itchy
eyes. Symptoms include severe fatigue, dizziness, vertigo, rashes,
and cognitive problems. Suspect an allergy to molds if you have the
following symptoms:
• You feel worse in humid weather.
• You feel worse outdoors between
5:00 and 9:00 PM.
• You feel worse when mowing or
raking leaves.
• You feel much worse from August to
the first heavy frost.
• You feel worse in damp places,
basements, and bathrooms.
• You feel worse after eating
mushrooms, seaweed, fermented prod ucts, aged cheeses, beer, tofu,
pickles, or vinegar.
ANIMAL DANDER, FUR, AND FEATHERS. Many
people are sensitive to animal hair and react to fur coats and
trimmings, feather pillows, stuffed toys, wool clothing, yarn,
felting, carpets, and wigs. Allergies to animal dander can also
produce an allergic reaction to serum from those same animals. For
example, to avoid an allergic response, people with horse dander
allergies need to be careful about receiving horse antiserum (tetanus
shots). Suspect allergies to animal dander if you feel worse when you
are exposed to animals or animal hairs in items such as bedding or
clothing.
DUST. Dust is a complex mixture
composed of breakdown products of airborne allergies plus inorganic
matter from synthetics, smoke, soot, cellulose, dead skin cells, and
mite or other insect droppings. You can be allergic to any component
of dust, and it is impossible to pinpoint exactly what causes
symptoms without testing. If you feel worse indoors, after dusting or
vacuuming, or first thing in the morning, you may have an allergy to
dust.
TREATMENT TIPS
- Dust with a damp sponge to avoid spreading dust.
- Avoid vacuuming or emptying vacuum bags (which harbor molds).
- Eliminate under-the-bed storage.
- Use easy-to-wash curtains, bed covers, pillows, rugs, and clothing.
- Empty and clean drawers. Use drawers only for storing clean clothes.
- Avoid keeping knickknacks, books, or dust-catching clutter in your room.
- Do not allow pets in the bedroom.
- Replace furnace and air-conditioning filters often; check for mold.
- Use an air filter in your room; high-efficiency particle arresting (HEPA) filters are best ($109 from Real Goods; 800-762-7325).
- Use nonsedating antihistamines (Claritin) or steroidal nasal sprays
- (Nasalcrom) for symptom relief.
- Take natural antihistamines (quercetin, bromelain) and vitamin C for
- nutritional support.
- Avoid eating moldy or mold-laden foods, inhaling old dust (such as in attics and used-book shops), and make sure bathrooms and kitchens are free of mold and mildew.
FOOD
Allergies and intolerance to various
foods are common in people with CFIDS. Dr. Robert Loblay, lecturer in
immunology and Director of Allergy Service at the Royal Prince Alfred
Hospital in Sydney, Australia, estimates that food intolerance is a
"significant factor in 20% to 30%, and may be the principal
trigger in perhaps 5% to 10%" of the CFIDS population. In some
of these individuals, allergies to other substances (pollen, dust)
may have predated the onset of CFIDS; in others, food sensitivities
are a new prob lem brought on by CFIDS itself (see Chapter 9 for a
more in-depth discus sion of food intolerance).
The distinction most clinicians make
between food allergy and food intolerance is subtle. Currently, most
allergists agree that food allergies are mediated by immunoglobulin E
(IgE), an antibody that attaches itself to histamine-releasing mast
cells. Allergens, because they produce antibodies, provoke an immune
response even in the tiniest amounts. They often oc cur in groups,
for example, citrus fruits, fungi, or milk products. The most common
allergies are to corn, eggs, milk, soy, sugar, wheat, and yeast.
Allergies can be tested for with a radioallergosorbent test (RAST),
which measures the amount of IgE antibodies a person produces in
response to specific substances.
Intolerance to certain foods, on the
other hand, is not IgE modulated and cannot be measured with the
RAST. It often results from increased permeability of the small
intestine lining (leaky gut), a problem that can arise after
infections from viruses or Candida and treatments with certain drugs
(e.g., antiparasitic agents, antibiotics, chemotherapy). When the
intestinal wall is compromised, molecules derived from food digestion
pass through the membrane before they are completely broken down. The
oversized molecules now circulating in the blood stream provoke an
immune response, although this may be delayed by several hours or
even days. In the case of food intolerance, the less you eat of a
food the less likely it is to bother you. And whereas true allergies
usually last throughout life (the immune system "remembers"
the offending protein), sensitivities are often transient.
The conditions that lead to food
sensitivities are multifold. An initial viral trigger can affect the
gut mucosa, making the intestinal wall more permeable. In addition,
negative responses to certain foods could be a result of low amounts
of T suppressor cells, the immune system cells that modulate immune
responses to food molecules. Parasites, Candida, and alterations in
intestinal flora after antibiotic intake are also possible factors
contributing to food sensitivities. Needless to say, people with
CFIDS can experience all these conditions so it should not be
surprising that food sensitivities are common in the CFIDS
population.
Reactions to food allergies and
sensitivities are fairly similar. Suspect food sensitivities if you
have the following symptoms:
• You feel excessively thirsty after
eating.
• You experience bloating within 20
minutes after eating.
• You experience bowel problems,
dizziness, heart palpitations, fatigue, insomnia, depression, or
anxiety after eating certain foods.
• You have any symptoms after eating
citrus fruits, milk products, wheat, solanaceous foods (nightshade
family, such as potato, tomato, eggplant, peppers), or artificial
colorings or preservatives.
TREATMENT TIPS
For food allergies and sensitivities,
the first order of business is to identify and avoid the offending
foods. A record should be kept of symptoms that arise, such as
heartburn, increased heart rate, bloating, headache, or diarrhea
after eating certain foods, and those foods should be avoided. Note
whether symptoms decrease after a few days. (In some cases, however,
symptoms increase for a few days when the offending item is
withdrawn.) Foods should be isolated as much as possible. Don't mix
too many at a single meal to better judge their aftereffects.
Second, diet should be rotated. In the
rotation diet, no food is eaten more than once in 4 days. Not only
does this diet allow you to identify foods that may be causing
trouble, it helps prevent the formation of allergic responses from
overexposure. Because people with CFIDS have a strong tendency to
have allergies, this last point is crucial. Of course, many people
with food reactions find that they eat too few foods to rotate them.
In that case, alternate as best you can. When reactions occur, the
best im mediate course of action is as follows:
• Drink a glass of water with a
half-teaspoon of baking soda or trisodium compound (Tri-Salts) to
increase alkalinity (allergic reactions are acidic).
• Take nonacid vitamin C.
• Take over-the-counter sinus
allergy medication (Alka-Seltzer Plus) or antihistamines if the
reaction is severe.
• Drink plenty of water.
An interesting new drug approach to
food allergies that has been reputed to have some success in Sweden
is the use of orally administered cromolyn (Gastrocrom). In severe
cases, judicious use of systemic anti-inflammatory agents
(hydrocortisone, cortisol) can be lifesaving. Cortisol is the body's
most powerful anti-inflammatory chemical and can stop inflammation
cold. However, it also depresses the immune system and, over time,
can depress adrenal function. It should be used sparingly and only in
cases in which immune system hyperreactivity threatens to create
malnutrition. GLA (evening primrose oil) and Cytotec, a synthetic
prostaglandin, are also helpful in treating food sensitivities and
leaky gut. (For information on how to heal leaky gut, the source of
most food sensitivities, see Digestive Disturbances.) Zinc deficiency
can lead to excess histamine production; thus increased dietary zinc
may help control food sensitivities.
CHEMICAL SENSITIVITIES
Sensitivities to synthetic chemicals
are fairly common in people with CFIDS, although many may not be
aware that their symptoms are attributable to chemical exposure.
People who experience fatigue, dizziness, anxiety, or other symptoms
after shopping in furniture or dry goods stores, sitting in a new
car, strolling through a mall, or filling the tank at a gas station
are probably chemically sensitive.
Chemical sensitivities were first
described in 1951 by Dr. Theron Randolph, the pioneering physician
who discovered that people who demonstrated allergies to fruits (all
fruits in this case, not just specific families) were actually
reacting to the pesticide residues left on them. Dr. Randolph
observed that even in small doses, chemicals can cause severe
reactions in sensitive individuals. In 1962 Dr. Randolph published a
landmark book, Human Ecology and Susceptibility to the Chemical
Environment, in which he identified the chemicals responsible for a
wide range of human ail ments.
Chemical sensitivity usually develops
over a long time. Small amounts of chemicals continually enter the
body through the skin, nasal passages, or digestive tract and can
eventually induce sensitivities, with symptoms that for all intents
and purposes are identical to those of common allergic reactions
(though not all chemical sensitivities are IgE-mediated).
IgE-mediated chemical reactions include hives, rashes, and skin
eruptions. Delayed responses can include any of the symptoms common
to other allergies, such as confusion, respiratory problems, fatigue,
diarrhea, excessive thirst, tinnitus, runny nose, cramps, and
itching. Chemical sensitivities can also surface as the result of
massive exposure to a contaminant, such as a chemical spill or fire,
pesticide spray, or general anesthesia. In these cases, the massive
exposure overwhelms the body's normal detoxification mechanisms or
damages the regulatory systems (in the brain) that normally direct
endocrine and immune functions.
INDOOR CHEMICAL AIR CONTAMINANTS.
Building materials, car peting, glues, paints, plastics, deodorants,
tobacco, insecticides, and disin fectants are common sources of
indoor pollution found in most homes. Of particular concern is the
outgassing of contaminants such as formalde hyde from sources such as
pressboard, found in most recently built homes. Low-level exposures,
even though they can induce symptoms, originate from sources that are
not easily detected and thus remain hidden. Other common sources of
indoor pollution are copy machine inks, correction fluid, carbon
paper, solvents used in the workplace, and gas leakage from stoves
and heaters.
OUTDOOR CHEMICAL AIR CONTAMINANTS.
Traffic exhaust, smog, paving and resurfacing of roads, industrial
fumes, and the indiscriminate spraying of lawns are the most common
sources of outdoor pollution. Of these, exposure to gasoline and
diesel fumes presents the biggest problem for the chemically
sensitive because they are ubiquitous and virtually un avoidable.
DRUGS AND MEDICATIONS. People with
chemical sensitivities frequently develop sensitivities to drugs as
well. Many drugs are synthetic, that is, they are derived from
petroleum, a common source of sensitivity for many people. In
addition, the excipients, preservatives, colorings, and inactive
ingredients found in many medications may provoke reactions. Many
people with drug sensitivities are unable to tolerate antibiotics or
lo cal anesthetics.
CLOTHING AND PERSONAL CARE PRODUCTS.
Synthetic fabrics, as well as the detergents, finishers (such as
formaldehyde), sizing, dyes, and plastic residues found on many
natural fabrics, can provoke topical or systemic reactions in many
people. The harsh chemicals often included in body lotions, skin
cleaners, cosmetics, and deodorants are also common sources of
irritation for the chemically sensitive.
TREATMENT TIPS
In a 1995 survey conducted by a DePaul
University research team, 305 patients with multiple chemical
sensitivities (MCS) were asked to rate treatments on the basis of
personal experience. Of these patients, 93% rated "adopting a
practice of avoiding exposures to chemicals which could cause MCS
reactions" as a "major" or "enormous help"
(CFIDS Chronicle, Winter 1996). It is clear from this report and from
testimonies of numerous people with chemical sensitivities that
effective control of chemical reactions hinges on avoidance. Clean,
filtered water and air, and organic foods help cut down the chemical
load and remove all sources of contamination from the home (see
Chapter 8 for more information on alterna tives to toxic household
chemicals).
Nutritional support can also be of
help, particularly those nutrients that help mediate allergic
symptoms and provide support for the liver and kidneys. Vitamins C
and B12 are especially important. The entero-hepatic resuscitation
program is a nutritional program supposed to help with chemical
sensitivities. Alpha ketoglutarate and glutathione are two of
nature's most potent natural detoxifiers, as are all antioxidants.
MORE INFORMATION
- American Academy of Allergy and Immunology 611 East Wells Street Milwaukee, WI 53202 800-822-2762 (toll-free telephone)
- Asthma and Allergy Information Line PO Box 1766 Rochester, NY 14603 800-727-5400 (toll-free telephone)
- Food Allergy Network 10400 Eaton Place, Suite 107 Fairfax, VA 22030-5647 800-929-4040 (toll-free telephone)
- Human Ecology Action League (HEAL) PO Box 49126 Atlanta, GA 30359 404-248-1898 (telephone)
FURTHER READING
- Krohn, Jacqueline. The Whole Way to Allergy Relief and Prevention: A Doctor's Complete Guide to Treatment and Self-Care. Washington, D.C.: Hartley and Marks, 1991.
- Loblay, Robert H, and Swain, Anne R. The Role of Food Intolerance in Chronic Fatigue Syndrome. In Hyde, Byron M, ed. The Clinical and Scientific Basis of ME/CFS. Ottawa, Ontario: Nightingale Research Foundation, 1992.
SEE
• Digestive Disturbances.
• Chapter 4: Antihistamines, Cytotec,
Hydrocortisone.
• Chapter 5: Alpha Ketoglutarate,
Amino Acids (glutathione), Bioflavonoids, Entero-Hepatic
Resuscitation Program, Minerals (zinc), Vitamins.
• Chapters 8 and 9.
CANDIDA
Candida albicans is a yeast-like fungus
found in the moist mucous lining of the intestines, genital tract,
mouth, and throat. A certain level of Candida in the body is normal;
some conditions, however, can cause rampant overgrowth. The
overgrowth, manifested in easily observed "yeast"
infections of the vagina and mouth, as well as less apparent systemic
infec tions, can lead to serious health problems.
People with compromised immune systems
often have both topical and systemic infections. The stubborn,
recurring local infections such as athlete's foot, vaginal yeast
infections, and thrush are indications that the immune system is not
operating fully. The immune system is simply too weak to combat the
rapid proliferation of yeast throughout the body. When the immune
system is compromised, Candida can spread from the mucous linings of
the mouth and intestines to other organ systems, as well as the blood
stream, causing a systemic infection with wide-reaching effects. In
fact, a number of clinicians believe that systemic Candida infections
may contribute to some of the more troubling and persistent long-term
symptoms of CFIDS.
As a case in point, a number of common
digestive problems are believed to be caused or exacerbated by yeast
overgrowth. Yeast can adhere to the intestinal walls, causing loss of
integrity of the mucous lining. This damage results in greater
permeability of the lining, allowing undigested food particles to
pass through (leaky gut). When these undigested food molecules reach
the blood stream, many systemic allergic reactions can occur.
Bloating, gas, diarrhea, and food, drug, and chemical sensitivities
owe their origins, in many cases, to this problem. In addition to
symptoms related to increased intestinal permeability, people with
yeast overgrowth experience fatigue, headaches, cognitive problems,
and endocrine imbalances (hypothyroidism and hypoglycemia).
Many researchers believe that a
combination of immunosuppressive factors contributes to the
likelihood of yeast infections developing. Dr. Carol Jessop, an
internist in California who has treated systemic yeast infection in
thousands of patients with CFIDS, has noted that 84% of her patients
have undergone repeated and prolonged antibiotic treatment, 70% have
taken oral contraceptives, and 10% have taken prescribed ste roid
drugs (CFIDS Chronicle, Spring 1991). All of these drugs can be
immune system inhibitors and may be linked to Candida overgrowth. Dr.
Jorge Flechas has also addressed the problem of Candida overgrowth as
it is related to immune system dysregulation in patients with CFIDS.
Dr. Flechas proposes that Candida overgrowth may be linked to a
specific immune defect (CFIDS Chronicle, Summer/Fall 1989). He has
noticed that patients with CFIDS commonly demonstrate T cell
abnormalities, such as T suppressor cell depletion and reduced number
of natural killer cells. Because the T cells are largely responsible
for controlling viral and fungal infections, a defect in the system
may allow reactivation of latent viruses and fungal overgrowth.
Due to the fact that so many of the
symptoms caused by overgrowth of Candida are the same as CFIDS
symptoms, it can be difficult to differentiate the two. To make a
diagnosis, a careful medical history must be taken, with particular
attention to courses of antibiotics, steroid therapy, or oral
contraceptives taken in the past. In addition, the presence of
certain symptoms may be highly suggestive of candidiasis. Oral
thrush, recurrent vaginitis, topical fungal infections, such as
athlete's foot, chemical and food sensitivities, and gastrointestinal
problems may warrant further investigation. Vertigo, sinusitis, and
premenstrual syndrome (PMS) may also be indicative of a systemic
Candida infection. If a patient has these signs and symptoms,
laboratory testing for Candida may be recommended. A quantitative
stool analysis can reveal Candida overgrowth and imbalances in
intestinal flora (Great Smokies Diagnostic Laboratory; 800-522-4762).
Blood tests to detect the presence of Candida antibodies in the blood
stream are also available (Immunosciences Lab; 800-950-4686).
Few physicians believe that Candida
overgrowth is the underlying cause of CFIDS, but many agree that
yeast overgrowth can greatly exacerbate symptoms. As Dr. Flechas
states," [Candida] can take a bad situation and make it worse."
And, as many people with CFIDS have found, the reduction in yeast
overgrowth can lessen the general overload on the body, allowing for
greater overall improvement over time.
TREATMENT TIPS
Prescription antifungal medications are
normally recommended for systemic Candida infection. The most
commonly prescribed drugs are nystatin and Diflucan. Nizoral, while
effective, is used less often because of the potential for liver
toxicity. Sporanox, a newer antifungal agent, is also used for
systemic infections. Your doctor may recommend a 3- to 6-week trial
to help determine which of your symptoms are yeast related.
Nonprescription antifungal agents, including garlic (liquid, capsule,
or fresh), caprillic acid, pau d'arco, and tea tree oil, can also be
effective. These can be applied topically or taken orally (except for
tea tree oil, which can only be applied topically). Grapefruit seed
extract is also a potent antimicrobial agent, but is extremely
caustic and should not be used by anyone with a sensitive stomach or
esophagus. It can be purchased in health food stores and from
nutritionists and some chiropractors.
Probiotics such as acidophilus and
bifidus bacteria are usually recommended to treat yeast problems.
Health food stores generally carry a wide array of different strains
and combinations. Many people prefer the enteric-coated varieties
because they are not destroyed by stomach acid. Most physicians
recommend dietary modifications to help control the infection. Yeast
thrives on sugar so a mainstay of the diet is to avoid sweets.
Alcohol, refined carbohydrates, milk (because of the lactose), and
fruits may also be eliminated in the early stages of treatment.
Specialists also recommend avoiding fermented products (soy sauce,
moldy cheeses) and pickled products because these contain yeast and
mold.
Although Candida does not need molds
to grow, the Candida overgrowth often creates allergies to all mold
and fungus. As a consequence, eating moldy foods provokes allergic
symptoms. A good rule of thumb is to emphasize whole grains,
high-quality proteins, and lots of vegetables. If possible, foods
should be purchased fresh and without additives, hormones, or
antibiotics, which exacerbate the condition. Some supermarket chains
are beginning to carry "natural" meats. Vaginal and throat
yeast infections should be treated when they occur.
Over-the-counter antifungal creams can
now be purchased, but many women still prefer prescription drugs for
insurance reimbursement. The main problem that may arise from using
these creams, however, is allergic reaction (characterized by burning
and itching). You may want to discuss some of the single-treatment
options (such as Vagistat) with your gynecologist or other doctor if
this is a problem. Throat infections (thrush) can be treated with an
oral nystatin preparation and with any kind of acid gargle (vinegar,
lemon) because molds and fungus will not grow in an acid environment.
If you can tolerate yogurt, a yogurt "swish" (around the
mouth and down the throat) also helps. Supplements recommended
(mainly for their immunity boosting qualities) include vitamin C,
zinc, vitamin B complex, essential fatty acids (evening primrose oil,
borage seed oil), and fish oils. It is important to avoid breathing
molds, chemicals, and other irritating inhalants. If you need to take
antibiotics for any reason, it is wise to supplement with acidophilus
or bifidus bacteria to replace helpful bacteria that have been
destroyed. These friendly bacteria will keep the yeast un der control
during treatment.
MORE INFORMATION
Candida Research Foundation 1638 B
Street Hayward, CA 94541 510-582-2179 (telephone)
FURTHER READING
- Crook, William. Chronic Fatigue Syndrome and the Yeast Connection. Jackson, Tenn.: Pro-fesional Books, 1992.
- Rosenbaum, Michael, and Susser, Murray. Solving the Puzzle of Chronic Fatigue Syn drome. Tacoma, Wash.: Life Sciences Press, 1992.
SEE
• Chapter 4: Antifungal Agents.
• Chapter 5: Essential Fatty Acids,
Herbs, Minerals, Probiotics, Vitamins.
CARDIAC AND CARDIOVASCULAR SYMPTOMS
Heart-related symptoms are among the
most worrisome for patients with CFIDS because of the serious nature
of cardiac problems. Although many patients with CFIDS have chest
pain, blood pressure fluctuations, and periodic increases in heart
rate, few (less than 5%) experience any notable cardiovascular
problems. Dr. Byron Hyde has noted that among his patients, and in
many of the epidemic outbreaks of CFIDS, cardiovascular problems tend
to appear early in the illness—in the first month— and disappear
by the third to twelfth month. In some cases, however, heart problems
will either resurface or even appear for the first time after some
years have passed. Abnormalities such as premature atrial and
ventricular contractions, increased tendency for mitral valve
prolapse (especially in children), pericardiditis, myocarditis,
palpitations (skipped heartbeats), tachycardia (rapid heartbeat),
various arrhythmias, ectopic heartbeats, edema (swelling in the hands
and feet), nasal stuffiness (not due to aller gies), and unusual
readings at electrocardiography (EGG) or Holter monitoring are not
unusual.
PALPITATIONS (TACHYCARDIA)
A sudden increase in heart rate (up to
150 bpm) either while resting or upon standing is fairly common,
especially in severe or acute cases. Heart rate alterations can occur
at random or follow fairly regular patterns. Times of day in which
adrenal output is low (4:00 am and 4:00 pm) may produce conditions
for erratic heart rate. Sudden heart rate increases can also occur
after exercise, lifting, and, in the severely ill, after changing
position in bed. Pounding of the heart is also a common heart problem
and, although frightening, is rarely dangerous.
LOW BLOOD PRESSURE (HYPOTENSION)
Sudden decreases in blood pressure,
occasionally manifested as "blackouts" or periods of sudden
faintness, are common in patients with CFIDS. Dr. Luis
Leon-Sotomayor, the cardiologist who recorded the 1965 CFIDS epidemic
in Galveston, Texas, observed that hypotension was common in his
patients with CFIDS, particularly after activity or upon standing.
(Normally, the systolic component of blood pressure rises after
standing.) The apparent dysregulation of blood pressure in CFIDS is
not, as it would appear, directly connected to cardiac problems but
is the result of hypothalamic dysfunction since the hypothalamus,
among its many other functions, is responsible for maintaining
arterial pressure.
Studies performed at Johns Hopkins
University have recently con firmed Dr. Leon-Sotomayor's
observations. The Johns Hopkins' research ers concluded that some
patients with CFIDS have a condition known as neurally mediated
hypotension (NMH) (Lancet, 1995). The condition is characterized by
fainting (syncope) and, in CFIDS, periods of faintness. NMH
represents a flaw in neuroendocrine coordination. Normally when blood
pressure falls, the brain sends a signal for the adrenal glands to
re lease adrenaline (epinephrine). The adrenaline signals the heart
to beat more vigorously, raising blood pressure. Once the heart rate
increases and blood pressure is restored, the nerves within the left
ventricle send a mes sage to the brain that blood pressure is too
high and the brain in turn sends a signal to lower blood pressure.
In people with NMH, this
well-coordinated system for maintaining blood pressure goes awry.
People with NMH have low blood pressure, causing blood to settle, or
pool, in the lower extremities. When the heart starts to beat more
vigorously to compensate, the nerves in the left ventri cle send the
erroneous message that pressure is already too high, forcing blood
pressure to drop even farther. The result is a feeling of faintness.
In NMH, any excess release of adrenaline can produce the same result,
which is why some people feel faint at the sight of blood or after
having a fright.
NMH can be treated with drugs that
regulate heart rate (beta blockers) or increase blood volume
(Florinef). Norpace, an antiarrhythmic drug, while sometimes
recommended, is used less frequently because of its side effects.
Midodrine, a newly approved drug, may also be prescribed for NMH. An
interesting nondrug alternative used by some alternative
practi tioners is licorice, an herb with steroidal properties but
without the many side effects of steroids. Increasing the intake of
salt and liquids (to increase blood fluid volume) is a recommended
adjunct to all medications.
SHORTNESS OF BREATH (DYSPNEA)
Shortness of breath, particularly after
exertion, is common in patients with CFIDS. Many people experience
the phenomenon of "air hunger" even if they are not moving.
It is not uncommon to wake up with it. In CFIDS, researchers have
found that the heart does not speed up quickly enough to meet the
extra demands placed on it by exercise. Although the body's need for
oxygen is increased, the heart fails to deliver. The result is chest
pain and shortness of breath. In severe illness, even getting out of
bed too quickly can produce this effect.
Heart attacks are not generally
associated with CFIDS, but anyone with a history of heart problems
needs to be conscientious about following up on cardiac symptoms. If
symptoms are severe or persistent, wearing a Holter monitor for a day
or having a test for mitral valve prolapse might be recommended.
Inasmuch as many of the symptoms produced by mitral valve prolapse
(breathlessness, fatigue, edema) are common in CFIDS, a thorough
doctor may wish to investigate the possibility of mitral valve
prolapse just to be on the safe side.
TREATMENT TIPS
Sometimes pharmaceutical treatments
such as beta blockers (propranolol, atenolol) are used to regulate
heartbeat and blood pressure. Doctors who prescribe these drugs
generally prefer to confirm a cardiac abnormal ity first because of
the risks involved in long-term usage. CFIDS clinicians almost always
recommend restricting aerobic exercise in the acute stage to avoid
any potential risk of virally induced cardiac problems. Calcium
channel blockers and magnesium are also sometimes used to control
heart problems, although these, like other heart medications, must be
carefully monitored by a cardiologist. Two nutritional supports noted
for strength ening and improving heart function are CoQ10 and omega-3
essential fat ty acids.
MORE INFORMATION
Society for MVP Syndrome
PO Box 431
Itasca, IL 60143-0431
FURTHER READING
Hyde, Byron M, and Jain, Anil. Cardiac
and Cardiovascular Aspects of ME/CFS, A Review. In Hyde, Byron M, ed.
The Clinical and Scientific Basis of ME/CFS. Ottawa, Ontario:
Nightingale Research Foundation, 1992.
SEE
• Chapter 4: Beta Blockers, Calcium
Channel Blockers, Florinef.
• Chapter 5: CoQ10, Essential Fatty
Acids, Herbs (licorice), Minerals (magnesium)
COGNITIVE AND EMOTIONAL PROBLEMS
Cognitive, emotional, and perceptual
problems affect nearly every per son with CFIDS at one time or
another during the course of the illness. They are, in fact, so
prevalent that many doctors consider them to be as great an
identifying feature of the illness as fatigue. In some cases these
problems are evident at onset; in others they develop after a few
weeks or even months have passed. Although not, perhaps, as obvious
to the casual observer as some of CFIDS' more overt symptoms (muscle
weakness, pain, fever), cognitive and emotional problems can be just
as disabling. Indeed, in some cases cognitive problems form the nexus
of disability, making it impossible for the more severely affected to
hold a job, read a book, or even carry on a coherent conversation.
The cumulative effect of these symptoms (most notably, lack of
concentration combined with short-term memory loss) results in what
most people with CFIDS call "brain fog."
Researchers agree that many cognitive,
emotional, and perceptual changes that arise as a result of the
illness are organic; that is, they are due to alterations in normal
brain function rather than to secondary psycho logical factors (such
as being upset about having CFIDS). Many people with CFIDS have
observed that distortions in emotional and mental states seem to
correlate with the degree of severity of their other symptoms
(usu ally, but not always, fatigue). This seems to point to a
similar, if not the same, origin for both. Dr. Jay Goldstein, Dr.
Ismael Mena, and others have suggested that physiologic symptoms,
such as muscle weakness, tempera ture fluctuation, and decreased
blood pressure, as well as emotional and cognitive symptoms, all can
be caused by abnormalities in an area of the brain that roughly
corresponds to the limbic system and adjacent regions of the temporal
lobe.
The limbic system is a ring of
structures located at the center of the brain. It is composed of a
number of small but vitally important compo nents that affect nearly
every aspect of physical and psychological func tion. The
hypothalamus, a thumb-sized assembly of about 20 nuclei locat ed just
below the thalamus (the brains sensory processor), is responsi ble
for regulating the autonomic nervous system, the endocrine system
(through the pituitary gland), certain emotions relating to the
"fight-or-flight" response, and sleep. It has a central
role in mediating immune sys tem responses and is a virtual
thoroughfare for fibers connecting the high er cortical centers
governing thought with structures in the midbrain and limbic system
that regulate motor activities, the senses, memory, and emo tion.
Alterations in hypothalamic function can result in sleep disturbances
(insomnia, hypersomnia), loss of homeostasis (the body's ability to
main tain itself within constant parameters of temperature, blood
pressure, and so on), eating disorders (anorexia, gorging), and mood
disturbances (pan ic, rage, anxiety), as well as cause disturbances
in distant areas of the brain that rely on communications from the
nerve fibers passing through the hypothalamus. Other structures in
the limbic system (basal ganglia) affect motor function. If these are
functionally impaired, tremors and difficulty sequencing complex
motor coordination (such as speech) may result. The amygdala and
hippocampus, two closely related limbic structures embed ded in the
temporal lobe, play an important part in learning and process ing
short-term memory. Damage to these results in learning and
informa tion retention problems, as well as difficulty with visual
and aural compre hension.
[NOTE: PAGE 53 IS A DRAWING]
Given the wide range of neurologic
symptoms experienced by people with CFIDS, it is not surprising that
radiologic examinations, such as sin gle-photon emission computed
tomography (SPECT), positron emission tomography (PET), and magnetic
resonance imaging (MRI), of the brains of patients with CFIDS have
revealed low blood flow (hypoperfusion), small lesions, and lowered
glucose absorption in the areas of the brain around the hypothalamus.
The juncture between the temporal and pari etal lobes (roughly above
and slightly behind the ear) is also an area fre quently found to be
deficient in adequate blood supply. (This area corre sponds to the
part of the brain responsible for correlating complex senso ry
information.) Deficiencies and abnormalities have also been noted in
the motor cortex, frontal lobe, and limbic system. Impairment of
these ar eas of the brain produces a wide range of cognitive,
emotional, and per ceptual problems in people with CFIDS.
LOSS OF CONCENTRATION. Loss of
concentration is one of the most common—and serious—cognitive
problems affecting people with CFIDS. Problems in this area can
significantly affect work performance. One source of concentration
problems is a loss of comprehension of either aural or visual
information. The brain lags and either processes new infor mation
slowly or misses it entirely. When the input is aural, there seems to
be loss of the initial orienting information. The person may be
listening, but the information simply does not register; as a
consequence, the person cannot focus or make sense of what follows.
Sometimes a delay in process ing results in longer pauses than usual
before a verbal response is made. Processing delays can also produce
a mistiming of conversational turn-taking resulting in interruptions
and apparent non sequiturs. Often, infor mation must be repeated
several times before it registers.
Visual processing can also be
significantly delayed. Material may have to be read many times before
it is absorbed, and sometimes words in a sen tence do not make sense,
especially if the syntax is complicated or the meaning ambiguous.
Reaction times may also be slowed. People may run red lights or
disobey other traffic signs because the information does not register
as fast as is required to act on it. Dr. Byron Hyde believes the loss
of comprehension associated with CFIDS is due to a dysfunction in the
area of the angular gyrus in the region of the left posterior (rear)
parietal lobe, an area of the brain that processes and interprets
both visual and aural in formation. However, dysfunction in the
posterior temporal lobe also has been noted with some frequency.
SHORT-TERM MEMORY LOSS. The loss of
short-term memory can present serious difficulties. People who forget
why they came into a room may also forget where they are driving.
People simply forget what they were doing and why. The problem can
become so severe that people will not be able to finish a sentence.
Memory loss can also manifest itself in loss of the ability to
remember people's names or faces (facial agnosia). People with these
problems may find it hard to identify friends, relatives, students,
or coworkers, especially if they are called on to come up with an
identifica tion quickly; even the best known people and places can
suddenly seem strange and unfamiliar. Problems with memory and
learning are tradi tionally associated with dysfunction of the
hippocampus, though other structures in and around the limbic system
may also be involved.
MULTITASKING. Multiple-task sequencing
is related to word sequenc ing. People with problems in multitasking
may find it difficult to follow step-by-step instructions, prepare
food from a recipe, or perform tasks that require a series of
separate actions. Putting away objects held simulta neously, for
example, a saltshaker and a stick of butter, may be impossible if the
impairment is severe. People may also lose the ability to look up
numbers in a telephone book or words in a dictionary. Children with
CFIDS maybe particularly shy of doing these tasks, forgetting
alphabet or der easily and finding it difficult to remember numbers
in sequence. Younger children may experience significant problems in
school as a re sult. Adults may also experience a similar decrease in
learning ability, par ticularly if the information is complex. People
with multitasking and si multaneous processing problems are, as a
rule, easily distracted and need to keep input at a minimum when
doing required or necessary tasks. They should not listen to the
radio while driving. They should avoid conference telephone calls or
meetings with several people. If crowds, malls, big events, and
parties trigger symptoms, these environments should be avoided or a
small area should be created in which the person can remain
stationary while others circulate.
LINGUISTIC REVERSALS (PSEUDODYSLEXIA).
People with CFIDS routinely structure linguistic elements backward.
They commonly reverse word order, letter order (when typing or
writing), initial sound order (when speaking), and even sentence
order in a paragraph, resulting in a series of seemingly disconnected
digressions rather than a logical flow of ideas. Any of these
problems can stem from disruptions in the final stage of linguistic
output, which are thought to occur in the supplemental mo tor area of
the brain. This area, located deep within the central fold separating
the two hemispheres, acts as a kind of holding area for final
linguis tic assembly. Problems there result in word, letter, and
short-term ordering problems. Dysfunctions in the left temporal lobe
(roughly above the left ear) also cause significant problems in
linguistic production. True dyslexia and aphasia are the result of
permanent damage to this area, which is why the temporary problems
arising from CFIDS are referred to as "pseudo."
WORD SEARCHING (PSEUDOAPHASIA). Another
linguistic problem for CFIDS patients is word searching. Commonly
used words are hard to retrieve and, when they finally are uttered,
may sound or even be wrong. Often a similar sounding word is
substituted incorrectly for the "missing" word or a
response may be completely inappropriate. The person speaking may not
catch these errors, in some cases resulting in significant loss of
communicative ability. Most of these retrieval problems are related
to lack of blood flow to the left temporal lobe, the part of the
brain responsible for most language-oriented tasks.
MATH PROBLEMS (DISCALCULIA). Problems
with math are rife in the area of cognitive dysfunction. People have
difficulty balancing check books, following timetables, adding
columns of figures, and especially subtracting. As a consequence,
work that requires a lot of calculating, such as preparing taxes, can
become so stressful that it can induce a relapse. People with CFIDS
frequently wobble or fall during the Romberg test if they are also
required to subtract by sevens from 100. Discalculia is associ ated
with dysfunction in the temporal lobe.
TREATMENT TIPS
A number of approaches can be taken to
improve cognitive symptoms. Drugs can be taken that act directly on
neurotransmitters and the central nervous system (Klonopin,
naphazoline, antidepressants). Another ap proach is to remedy the
mechanical problem of low blood flow to the brain by increasing
circulation. Drugs used for this purpose are primarily vasodilators,
calcium channel blockers, and the beta blockers (nitroglycerin,
nimodipine, atenolol). Pentoxifylline (Trental), a drug used to lower
blood viscosity, can also increase blood flow to the brain, and
reputedly helps alleviate short-term memory loss. For some cases of
CFIDS, central nervous system stimulants such as Cylert or Ritalin
can be helpful, as can Prozac or Wellbutrin. Herbs that increase
blood flow, such as gingko, gotu kola, and bilberry, have also been
used to enhance cognitive capacity. An important nutritional support
is CoQ10.
An alternative approach involves
enhancing brain function through cognitive rehabilitation. The
brain's neurons are remarkably capable of re generating dendrites. In
other words, when individual cells are destroyed, others can take
over their function, given the proper stimulus. Working with new or
different learning techniques can restore much of the cogni tive
function lost in the acute stage of CFIDS. Biofeedback and meditation
techniques are also reported to be effective in alleviating cognitive
dys function.
SEE
• Chapter 4: Ampligen, Antidepressant
Drugs, Beta Blockers, Calcium Channel Blockers, Central Nervous
System Stimulants, Pentoxifylline.
• Chapter 5: CoQ10, Herbs, NADH,
Vitamins.
• Chapter 6: Biofeedback, Meditation.
EMOTIONAL PROBLEMS
For people with CFIDS, emotional
changes can be just as unsettling as the physical symptoms produced
by the illness. The emotional swings that are typical in all stages
of the illness can be difficult for both the person ex periencing
them and for the people around them. In the acute stages of CFIDS,
strong, sometimes overwhelming, feelings can seemingly appear out of
nowhere. Most people find these intense emotions highly disturb ing,
particularly when they are accompanied by severe physical and
cogni tive symptoms. In many cases, the emotions that accompany
exacerbations of the illness are complicated by sensory and
perceptual alterations, such as changes in vision and hearing, which
may lend an air of unreality to the outside environment. Some people
even report feelings of dissociation or a sense that they are
watching themselves, as though in a movie.
When patients report these symptoms, it
is all too common for the at tending physician to recommend that the
patient see a therapist or psychi atrist. Because people with CFIDS
are already struggling with a disease that has just barely gained
acceptance in the medical community, they are often offended by the
suggestion. They may feel stigmatized or blame themselves for
"creating" their illness. Many find that unless the
sessions are conducted by a therapist who is knowledgeable about
chronic illnesses, they are not particularly helpful. In some cases,
an incorrect diagnosis such as depression or bipolar disorder may
result. The reason therapy of ten fails is that the emotional roller
coaster produced by the onset of CFIDS is as organic as the fever,
swollen glands, low blood pressure, or any other measurable
physiologic signs or symptoms attributable to an illness. Contrary to
popular notions that "negative" emotions produce illness,
CFIDS demonstrates the reverse (see Chapter 7).
The intense emotions characteristic of
acute CFIDS, which include rage, terror, overwhelming grief, anxiety,
depression, and guilt, are the re sult of the same mechanism that
produces cognitive difficulties; that is, al teration in the normal
functioning of the limbic system and related struc tures. It has long
been known by neuroscientists that stimulation of one part of the
hypothalamus produces rage, and electrical stimulation of the other
side produces profound calm. This experiment was the impetus for Dr.
Herbert Benson's landmark treatise, The Relaxation Response, a book
that provides the foundation for many of the stress management
tech niques currently practiced by psychologists. The brain is not
limited to these two rather primitive responses, however. Changes in
neurotransmitter activity can cause depression (low serotonin
levels), irritability (low followed by high serotonin levels),
euphoria (high norepinephrine levels), and jitters or acute anxiety
(excitatory neurotransmitters). High levels of vasopressin (a hormone
produced by the hypothalamus) have been associ ated with the
continual review of unpleasant experiences or memories typical of
depression.
The areas of the brain most affected by alterations in neurotransmitter activity are the limbic system, which functions, in part, as a processor of emotions, and the temporal lobe, in which emotion is joined to experience to facilitate memory formation. These are, of course, two of the areas most commonly affected by CFIDS.
The areas of the brain most affected by alterations in neurotransmitter activity are the limbic system, which functions, in part, as a processor of emotions, and the temporal lobe, in which emotion is joined to experience to facilitate memory formation. These are, of course, two of the areas most commonly affected by CFIDS.
That many of these emotional states are
generated by the brain itself does not indicate that all emotions
experienced by people with CFIDS can be attributed to neurologic
dysfunction. Disturbances in the endocrine system that lead to
hypoglycemia and hypothyroidism can also produce severe depression,
and lethargy. Adrenal disturbances can cause panic and extreme
anxiety. Irritation is often produced by the hormonal imbalances that
accompany premenstrual syndrome (PMS), as are uncontrollable
out bursts of rage and grief. Accompanying these psychophysiologic
causes are the inevitable emotional upsets and frustrations that
result from not hav ing a functioning mind or body, losing a career
or family, worrying about loss of income, and the threat of
mortality. These may result in secondary, or reactive, depression, a
mood disturbance due to a traumatic life event. Secondary depression
can be just as devastating as primary (physiologic) depression and
should be treated with the same seriousness.
Although it is important to remember
that emotional states can be generated by purely organic (chemical)
disturbances, it is equally important to keep in mind that the line
between physiologic and psychological disturbance is not well
established. In reality, the two are intertwined, each feeding into,
supporting, and providing the basis for the other. Both need to be
attended to in order to maintain a sense of emotional equilibrium.
TREATMENT TIPS
For the many fears, anxieties, and
doubts that accompany any long-term illness, a situational counselor
can be of great benefit. In general, someone who has had experience
working with people with CFIDS will be more helpful than someone who
has not. Psychologists who are unfamiliar with the illness will
sometimes attribute the strong emotions produced by neuroendocrine
disturbances to suppressed childhood events, such as abuse, neglect,
or other stressful life experiences, and insist on psychother apy.
While these problems may occur coincidentally with CFIDS, it is
im portant to remember that they are not the cause. During periods of
acute or ongoing illness, advice on how to cope with the illness
itself is much more useful. Support groups can alleviate much of the
feeling of isolation that accompanies the illness and can provide
comfort and solace. Severe depression should be treated with
counseling, medication, or both. Drug treatments for depression
usually center on antidepressants. While not everyone responds well
to these drugs, some find them useful for alleviat ing depression and
panic. Low doses of Prozac have been effective in treat ing the
depression that accompanies PMS and hypersomnia. Zoloft and Paxil are
two other antidepressants that have been recommended for treat ment
of CFIDS. Anxiety states are usually treated with very low doses of a
benzodiazepine (Xanax or Valium) or other anxiolytic agents (BuSpar),
al ways taking care to monitor for depression.
Herbal treatments include skullcap (for
anxiety and jitters) and valer ian (for anxiety). An important
supplement for emotional stability is vita min B complex. Patients
with CFIDS have reported that vitamin B com plex helps stabilize
their mood, enabling them to handle stressful situa tions without so
much upset. The amino acid arginine, sometimes recom mended as a mood
enhancer, should not be used to treat CFIDS because herpesviruses are
replicated by arginine. Deprex, a homeopathic remedy for mood
disorders and depression is also available (Vaxa International;
800-248-8292). Other remedies that have been effective in some people
with CFIDS are controlled hyperventilation (deep breathing exercises,
to assuage panic), meditation, autohypnosis, Bach remedies, and
biofeedback.
Avoiding upsetting or stressful
situations is also a good strategy to use whenever possible,
especially in acute stages of the illness. Support from other people
who have had CFIDS is invaluable for learning to cope with emotional
swings and upsets. Once we begin to share our experiences with
others, most of us find that we are not alone in what we feel. That,
in itself, is one of the best therapies of all (see Chapter 7).
FURTHER READING
- Courmel, Katie. A Companion Volume to Dr. Jay A. Goldstein's Betrayal by the Brain. Binghamton, N.Y.: Haworth Medical Press, 1996 (an easy-to-read companion guide and interpretation of Dr. Goldstein's work for the layperson).
- Goldstein, Jay A. Betrayal by the Brain. Binghamton, N.Y.: Haworth Medical Press, 1996 (gives some valuable insights into the limbic system dysfunction characteristic of CFIDS).
- Restak, Richard. The Brain. New York: Bantam, 1984.
- Restak, Richard. The Receptors. New York: Bantam, 1994 (authoritative, insightful, and highly informative examination of the workings of neurotransmitters in the brain).
SEE
• Chapter 4: Antidepressant Drugs,
Antihistamines, Benzodiazepines.
• Chapter 5: Amino Acids, Butyric
Acid, Herbs, Vitamins.
• Chapter 6: Bach Remedies,
Biofeedback, Hypnosis, Meditation.
• Chapter 7
DIGESTIVE DISTURBANCES
The gastrointestinal tract is composed
of a series of organs, all of which are involved in the processing of
food. These include the esophagus, stom ach, gallbladder, liver, and
small and large intestines. For the most part, the actions of these
organs are regulated by the nervous system.
Although the main function of the
digestive system is food processing, the digestive tract has also
been referred to as the "second brain" because of its broad
interface with the nervous system. This involvement is so exten sive
that gastroenterologists have referred to the enteric nervous system
as a separate facet of the autonomic nervous system.
Neurotransmitters such as serotonin, which were formerly thought to
be produced exclusively in the central nervous system, have been
found in abundance in the in testines. The action of these
neurotransmitters, along with other neurohormones, regulates the
peristaltic action of the digestive organs, orga nizes the timing of
the opening and closing of interorgan valves, deter mines the
strength and frequency of contractions, and controls the release of
digestive juices. Because the network of nerves (found on the inside
of mucous membranes throughout the digestive tract) is responsible
for the smooth functioning of these organs, any error or defect in
the nervous sys tem will lead to multiple problems, from the
esophagus all the way to the rectum.
It is likely that many of the
gastrointestinal difficulties manifested in people with CFIDS stem
from nervous system problems. Because the stomach and intestines rely
on the subtle interaction of the parasympathetic (mediated by the
vagus nerve and the action of acetylcholine) and sympathetic
(mediated by noradrenaline) nervous systems, any imbalance in these
systems inevitably results in faulty digestion. Indeed, as research
has shown, people with CFIDS seem to have both poor vagus nerve tone
and a disregulated sympathetic nervous system (as demonstrated by the
ir regular output of the adrenal glands). This may explain both the
persis tence and extent of gastrointestinal symptoms that plague more
than 60% of the CFIDS population.
ESOPHAGUS
The esophagus is an 8- to 9-inch long
tube that extends from the base of the throat, just below the Adam's
apple, to the stomach. Its function is to transport food from the
throat to the stomach by means of peristaltic ac tion. The upper
third of the esophagus consists of striated muscle, and the lower two
thirds of smooth muscle. The two valves at the upper and lower ends
of the esophagus (upper and lower esophageal sphincters,
respective ly) allow food to pass first into the esophagus, then out
to the stomach. The lower valve also prevents reflux of corrosive
stomach acid to the esophagus and throat. Problems with the esophagus
can arise from faulty valve operation or from difficulties in the
muscles responsible for peri stalsis.
SPASM. One of the most distressing
esophageal problems in CFIDS is the esophageal spasm. Because the
spasm usually occurs in the center of the chest, the pain is often
mistakenly attributed to the heart. An esoph ageal spasm can feel
like a tight, pressure-like pain that sometimes radiates to the
stomach or mid-back. Unlike cardiac pain, however, the pain does not
radiate down the arms or increase after exertion. Esophageal spasms
in the striated muscle portion of the esophagus produce a painful
cramping sensation. Often spasms in the lower portion are painless
but nonetheless disturbing. Spasms in this area are generally thought
to be caused by an exaggerated motor response to peristalsis; that
is, the esophagus contracts too much. Repeated spasms of this nature
are referred to as diffuse esoph ageal spasms and are not uncommon in
people with CFIDS.
Treatment of esophageal spasms is
somewhat limited because the problem is usually not chronic. Muscle
relaxants may help some who experience spasms in the upper esophagus,
to diminish the force of the spasm. Avoiding foods that irritate the
stomach also helps. Spasms in the lower part of the esophagus are
sometimes caused by reflux. Carbonated drinks, acid foods, foods that
are too hot or too cold, or indeed any food to which there is
sensitivity may cause esophageal spasms. Even sudden changes in
temperature, (for example, a hot shower) can trigger esophageal
spasms in the sensitive individual. Emotional upset and stress can
ex acerbate this problem. Avoidance of esophageal stressors and
general stress management programs (see Chapter 7) can help reduce
the frequency and severity of esophageal spasms.
DIFFICULTY SWALLOWING (DYSPHAGIA).
Dysphagia frequently is experienced in the acute or initial stage of
CFIDS and during relapses. It is characterized by a complete
inability to swallow, even if there is food in the mouth. The
inability to swallow, although sometimes misdiagnosed as "anorexia,"
is not due to an aversion to food but, in most cases, can be
at tributed to sympathetic nervous system arousal typical of severe
or acute CFIDS. The peristaltic action of the esophagus is governed
by the vagus nerve, which acts in response to the release of
acetylcholine through nerve endings in the esophageal muscle,
resulting in the regular muscle contrac tions involved in swallowing.
The sympathetic nervous system, mediated by the adrenal hormone
noradrenaline (norepinephrine), produces the opposite effect,
inhibiting the peristaltic action of the esophagus. When large
amounts of adrenal hormones are released, as a result of stress or
any other sympathetic nervous system arousal, it becomes difficult to
swallow.
TREATMENT TIPS
People who have difficulty swallowing
can benefit from any measure that calms the sympathetic nervous
system (specifically, the adrenal glands). Sometimes a mild
tranquilizer (see Chapter 4: Benzodiazepines) can help if the problem
is severe. A calming tea, such as skullcap or valer ian, can be used
if tranquilizers are not tolerated (see Chapter 5: Herbs). A CFIDS
specialist and gastroenterologist, Dr. Thomas Steinbach, recom mends
drinking 2 oz of warm water mixed with 1 teaspoon of apple cider
vinegar to ease dysphagia caused by esophageal spasms.
STOMACH
Heartburn and reflux can be caused by a
lax lower esophageal sphinc ter or excess stomach acid. Heartburn
associated with reflux can be pre vented by changing posture,
altering diet, and reducing stomach acidity. An extra pillow placed
under the upper back while lying down tilts the stomach downward,
preventing its contents from sloshing against the sphincter. Sitting
up straight or bending slightly backward accomplishes the same
function. Bending over or forward should be avoided when the stomach
is full. In addition, products that relax sphincter pressure and
re lax smooth muscles, including alcohol, tobacco, coffee (even
decaffeinat ed), peppermint, chocolate, garlic, and onions, should be
restricted. Spicy, acid, and excessively sweet or salty foods can
also irritate the esophagus and should be avoided. Fatty meals delay
gastric emptying, which can lead to heartburn. Large meals can also
aggravate the condition. Certain drugs and medications may also
exacerbate heartburn. Among these are proges terone-containing oral
contraceptives, aspirin, nonsteroidal anti-inflam matory drugs
(NSAIDs), tricyclic antidepressants, and beta blockers.
Treatment with cholinergic drugs such
as bethanechol (Urecholine) and methacholine (Mecholyl) can help
increase peristaltic action and sphincter tone, but tend to produce
small bowel and colon contractions, nausea, and diarrhea, and
therefore should be used only if the problem is severe. In addition
to preventive measures, most doctors recommend tak ing antacids after
a meal (Turns or the laxative Milk of Magnesia, provided diarrhea is
not a problem). If these are not available, small amounts of
bi carbonate of soda (baking soda) in water can be taken, although
intake should be limited to no more than a teaspoon a day to avoid
upsetting the body's pH balance. Prilosec, a prescription medication
that acts to reduce stomach acid, may also be recommended.
Conversely, it appears that heartburn
symptoms can also be caused by too little stomach acid. Dr. James
Balch, in Prescription for Nutritional Healing, notes that a number
of people with chronic heartburn problems have found that taking a
small amount of apple cider vinegar diluted in a little water
actually helps relieve symptoms. If antacids do nothing to re lieve
symptoms or if they worsen them, a little apple cider vinegar might
be helpful.
Excess stomach acid can also lead to
heartburn, but of more concern is the possibility that the excess
acid can lead to ulceration of the stomach lining. The initial
treatment for excess acid is the same as for heartburn— avoid
irritating or acid foods and take antacids. A bland diet consisting
of easily digested, nonacidic, cooked foods and avoiding drugs that
produce gastric irritation (aspirin, NSAIDs, opiates) are the usual
recommenda tions. If the problem is severe, a drug that limits
gastric secretion, such as cimetidine (Tagamet) or ranitidine
(Zantac), will probably be prescribed. These work by blocking the
effects of histamine in the stomach, thereby limiting gastric acid
and pepsin secretion. If there is no evidence of ulcer, however,
these drugs should be used cautiously because they interfere with
digestion by limiting gastric secretion and may cause various side
effects. For this reason, another drug, sucralfate (Sulcrate) is
often prescribed for ulcers. Instead of limiting gastric secretion,
it works to heal the damaged tissue of the ulcer. A derivative of
licorice, DGL (available in health food stores), has been shown to be
effective in healing stomach ulcers as well. Control of allergies can
often help if excess acid production is due to aller gies (histamine
promotes gastric secretion) (see Allergies).
NAUSEA. Many people with CFIDS feel
continually nauseous for months, regardless of what they eat and in
the total absence of any easily recognizable infection.
Although nausea can arise spontaneously
from factors associated with improper digestion, other causes should
also be considered. Antibiotics, which radically alter intestinal
flora, can produce severe nausea, as can an timicrobial agents
(metronidazole), beta blockers, and other drugs com monly prescribed
to treat CFIDS. Vertigo, carsickness, eye strain, migraine headaches,
and systemic Candida infection also can produce nausea in CFIDS.
Disruption of neurotransmitter levels can lead to nausea as well.
Serotonin, one of the most versatile and widely distributed of the
neuro-transmitters, controls gastrointestinal smooth muscle
contraction and the emesis reflex (vomiting).
TREATMENT TIPS
For quick relief of nausea, acupressure
is sometimes helpful. A point on the inside of the wrist is used by
acupuncturists to increase appetite and control nausea. To find it,
place three fingers across the inside of the wrist, with the top
finger placed just below the crease where the hand joins to the arm.
The pressure point is at the middle of the arm, on the line where the
bottom finger rests. Sometimes holding a thumb there can relieve
nausea. Ginger is an herb that is effective for most cases of nausea.
It can be chewed raw or in candied form or taken as ginger ale.
Acidophilus bacteria may help relieve nausea related to Candida
infection or intestinal flora im balance. When nausea is accompanied
by upset stomach, activated char coal tablets can sometimes help
(though these should be taken judiciously because they slow the
absorption of nutrients from the intestines). The herb lemon grass,
taken in a tea, is also excellent for calming the stomach. The
antihistamine Antivert is also effective for treating nausea.
SMALL INTESTINE
The small intestine, which attaches to
the stomach on one end and the large intestine on the other, is
composed of three main segments: the duo denum, jejunum, and ileum.
Bile from the liver and pancreatic enzymes enter the duodenum through
their respective ducts, assisting in the further breakdown of food
that stomach processes have begun. The jejunum is the longest segment
of the small intestine and the most important as far as nu trient
absorption is concerned. Water, minerals, and other nutrients are
absorbed into the blood stream through the jejunum. Vitamin B12 and
bile salts are absorbed through the ileum. The ileum, the distal
portion of the small intestine, ends at the cecum, in the lower right
quadrant of the ab domen.
PERMEABLE INTESTINE ("LEAKY GUT").
The small intestine, unlike the stomach, has a permeable mucous
lining that serves as both a screen for unwanted material (notably,
toxins) and a sieve for acceptable nutri ents. If the mucosa becomes
inflamed as a result of damage from bacte rial or viral infection,
allergic reactions, parasitic infections due to Giardia lamblia,
chemotherapy, radiation, or environmental insults, the mem brane
becomes too permeable, allowing larger molecules to pass through.
These larger molecules in turn excite the immune system, creating an
allergic-like response to what would normally have been innocuous
food by-products. Indeed, many researchers believe the faulty action
of leaky gut is responsible for most food allergies. According to Dr.
Paul Cheney, the vast majority of his patients with gastrointestinal
symptoms have leaky gut as the primary underlying problem. The
diagnosis of leaky gut is easy to make, requiring nothing more than a
urine test performed after the pa tient has ingested a special sugar
solution (Great Smokies Diagnostic Laboratory; 800-522-4762). The
amount of sugar that passes into the urine is an indication of the
permeability of the intestinal mucosa.
TREATMENT TIPS
Secretory immunoglobulin A (IgA), the
most abundant immunoglobulin in external secretions, is essential to
maintain the normal function of the intestinal lining as an immune
barrier. The synthesis of secretory IgA requires the amino acid
L-glutamine. People with leaky gut can take L-glutamine as a
supplement to support the production of secretory IgA or, if the
amino acid is not tolerated (the side effect of depression
counterindicates its use in some people), secretory IgA can be taken
orally (Probioplex).
N-acetyl-D-glucosamine (NAG) is a
precursor in the synthesis of the proteins that form the outer layer
of the mucous lining of the small in testine. Synthesis of NAG starts
with L-glutamine, However, in some per sons the conversion of
L-glutamine to NAG is abnormal, resulting in a deficiency. In
addition to serving as an important element in formation of the
mucosa, NAG promotes development of beneficial bacteria and inhibits
binding of Candida to the intestinal wall.
Gamma-linoleic acid (GLA), found in
borage seed oil and evening prim rose oil, is an essential fatty acid
that serves as a precursor to prostaglandin E1 (PGE1), an
anti-inflammatory agent. In both animal and human studies, GLA
protected the intestinal lining from damage caused by as pirin and
other toxins. Most health food stores carry evening primrose oil and
borage seed oil. A PGE, analogue can also be taken directly, in the
form of the prescription drug Cytotec, which protects the mucous
lining of the stomach and small intestine.
Gamma-oryzanol (rice bran oil) is
another well-tested product effective in treating many
gastrointestinal disorders, including duodenal ulcers, chronic
gastritis, irritable bowel syndrome, nausea, heartburn, abdomi nal
pain, eructation, and diarrhea. Researchers have proposed that the
broad action of gamma-oryzanol is a result of its function as a
potent antioxidant as well as its ability to normalize vagus nerve
stimulation of gastric secretion.
Permeability Factors (Tyler
Encapsulations; 800-869-9705) combines L-glutamine, NAG, GLA, and
gamma-oryzanol. This product must be or dered by a health care
professional.
LARGE INTESTINE
The colon is that part of the large
intestine that extends from the ce-cum to the rectum. It is divided
into three main segments: the ascending colon, located along the
right side of the body; the transverse colon, which travels along the
top of the abdomen; and the descending colon, which follows down the
left side and then curves in to form the rectum. The he patic and
splenic flexures, named after the organs they are closest to (liver
and spleen), form the "angles" of the large intestine; the
rest is relatively straight, unlike the convoluted small intestine.
The large intestine is responsible for
final stages of digestion, removal of excess water from digested
food, and the formation of feces. All of these functions are aided by
the presence of friendly bacteria, without which food could not be
assimilated and processed. By the time the waste products (the
remains of ingested food) are ready to be expelled, all that re mains
is water, bacteria, and undigested cellulose.
Problems in the large intestine are
typified by the symptoms of irritable bowel syndrome and are rife in
people with CFIDS. It is generally thought that these problems stem
from faulty gut motility (that is, the rate at which the intestines
propel food along is somehow out of sync), resulting in cramping,
gas, bloating, nausea, increased appetite, constipation, or
diar rhea. In CFIDS, symptoms like those of irritable bowel syndrome
can be caused by sympathetic nervous system arousal, Candida
overgrowth, viral infections, or food sensitivities.
GAS. Gas, which accumulates as a result
of faulty digestion, is common in CFIDS. In the large intestine, gas
tends to accumulate at the hepatic and splenic flexures, sometimes
causing severe pain that radiates to the shoul ders. Gas trapped at
the hepatic flexure may cause such sharp pain that it precisely
mimics a gallbladder attack or even a heart attack.
TREATMENT TIPS
Treatment of gas is, for the most part,
preventive. Foods that cause gas, such as onions, cabbage, broccoli,
cauliflower, brussel sprouts, milk (for those with lactose
intolerance), and foods that are hard to digest (beans) or to which
there are sensitivities should be avoided. Food should be chewed
carefully and liquid should not be gulped with meals. If bloating and
acidity occur immediately after eating, a little baking soda can help
dispel gas before it descends to the intestines. Peppermint tea or
pepper mint products are also effective as are over-the-counter
treatments for gas and indigestion.
DIARRHEA. Many people with CFIDS
experience diarrhea. In some, it can be severe, requiring medical
interventions such as cortisol injections. Diarrhea is basically
caused by intestinal dysmotility. Intestinal motility consists of two
kinds of contractions: segmental contraction, which mixes food, and
propulsive contraction, which helps move the contents of the
intestines forward. When propulsive contractions are too frequent or
strong, food is passed along rapidly, resulting in diarrhea. Anything
that causes the small intestines to become inflamed will produce
diarrhea, as will a number of toxins (cholera, typhoid), viruses,
parasites (Giardia, amoebas), and nervous system or endocrine
disorders. Food sensitivities, particularly lactose (milk sugar)
intolerance, can produce mild or inter mittent diarrhea.
TREATMENT TIPS
If diarrhea is severe, a doctor may
prescribe an antispasmodic medica tion to slow intestinal motility.
Less severe cases may respond to over-the-counter antidiarrheal
medications, but these are only stopgap measures, at best. If food
sensitivities are suspected, an elimination diet may be helpful,
avoiding the most common symptom-causing foods, such as milk, wheat,
fructose and sorbitol (two sweeteners that often cause effects
similar to lactose intolerance), citrus, and eggs. Certain drugs and
medications can also cause diarrhea, so the medicine cabinet should
be checked if diarrhea has started suddenly or worsened recently.
Hydration is essential during episodes
of diarrhea. If you become de hydrated, check with your physician
regarding rehydration with electrolye solutions. In the interim,
liquid intake can be supplemented with water in which a little sugar
has been dissolved or Pedialyte can be used.
CONSTIPATION. It is common for people
with CFIDS to experience constipation at one time or another during
the course of the illness. In many cases, the constipation is related
to irritable bowel syndrome (imply ing that segmental contractions
predominate over propulsive contrac tions). Limited diet,
dehydration, and hypothyroidism also can lead to constipation.
Diet restrictions that limit the intake
of fresh fruits and vegetables can result in a decrease of dietary
roughage The absence of sufficient roughage creates a situation in
which the bowel is not stimulated enough to produce regular
contractions, resulting in slowed bowel motility, or constipation.
Another common source of constipation in CFIDS is dehydration. The
al teration in cell metabolism common in people with CFIDS (CFIDS
Chronicle, Spring 1995) results in an increased tendency for
anaerobic cell metabolism. Anaerobic cell metabolism requires more
water than aerobic cell metabolism. If the extra water is not
available, whether due to inade quate intake or mineral imbalances,
dehydration results. As a person be comes dehydrated, more water is
removed from the feces and stools be come smaller, more compact, and
more difficult to expel.
Constipation from diet restrictions or
dehydration should improve with a small increase in dietary fiber.
Psyllium husk can be taken in water or high-fiber cereals (such as
Nutri-Grain) and whole grains can be eaten. Water intake should also
be increased (a gallon a day is not too much). For those who can
tolerate dried fruit, the old home remedy of a few prunes (or prune
juice) is effective. Laxatives are generally not recommended by
physicians for long-term use because they ultimately lead to
dependence.
GALLBLADDER
The gallbladder is a small organ that
hangs, like a partially blown up balloon, between the liver and
duodenum. It acts as a receiving station for bile produced by the
liver. Its main function is to release the bile so that fats maybe
digested. Problems with gallbladder function (such as obstruc tive
stones) result in faulty processing of fats and the ensuing symptoms
of nausea, belching, and intense pain in the upper right quadrant of
the ab domen that radiates outward toward the side and back.
People with CFIDS, although rarely
prone to gallstone development, do experience classic gallbladder
pain. Radiographs, however, seldom show any mechanical or structural
problem, even when attacks are severe. In some cases hyperkinesis is
diagnosed, indicating only that the gallblad der seems to be
producing spasms, with unclear cause. Gallbladder con tractions are
ultimately regulated by the autonomic nervous system. It is
interesting to note that in several cases of gallbladder attacks in
people with CFIDS in the Lake Tahoe epidemic, human herpesvirus 6 was
found in gallbladder biopsy specimens.
TREATMENT TIPS
Gallbladder attacks can be alleviated
somewhat by avoiding foods that stimulate the gallbladder (fatty
meals and cold drinks). Pain can be alle viated by applying moist
heat (compresses or hot water bottle) to the affected area. Some
drugs can help regulate gallbladder spasms as well. Apple juice or
olive oil flushes, two home remedies for gallstones, usually worsen
the condition in people with CFIDS. In the case of severe or
persis tent symptoms, a consultation with a gastroenterologist is
highly recom mended.
LIVER
The liver is a large organ that spans
the region from the right inner ribs to the side of the rib cage,
reaching nearly down to the waist. It produces bile, which breaks
down fats, carbohydrates, and proteins; stores glycogen for the
body's immediate energy needs; metabolizes toxins, drugs, and
metabolic waste products such as ammonia; and aids in immune system
function, in part by acting as a cleanup crew. Immune system
complexes that have been engaged in battling invading viruses are
transported through the blood stream to the liver. In the liver,
macrophages devour what is left of the invaders, helping to escort
immune-activating proteins from the body. In this way the liver
serves two functions. It cleans out de bris and helps the immune
system downregulate itself.
Because of its intimate involvement in
all facets of digestion, toxin elimination, and immune system
function, the liver frequently suffers strain in CFIDS (although it
should be mentioned that liver function tests usually yield normal
results). Many people who experience pain or tender ness over the
area of the liver (upper right quadrant) notice that a number of
substances tend to aggravate it, including fats, alcohol, chocolate,
aller gens, and many pharmaceutical agents.
In addition to pain or discomfort over
the liver, many people experi ence a peculiar malaise often described
as feeling "poisoned." Even at its mildest, most people
find this sensation intensely uncomfortable. In CFIDS, the poisoned
feeling may be closely related to ischemic pain; that is, pain
generated when the blood supply to an area is cut off. Metabolic
waste products (such as ammonia and carbon dioxide) produced as a
re sult of muscle use are normally removed through the circulatory
system. When circulation is impaired, toxins build up and irritate
nerve endings. The result is the tingling, uncomfortable sensation
felt when circulation is restored to an area that has been
temporarily cut off from normal blood flow. It has been proposed by
Dr. Paul Cheney, Dr. Scott Rigden, and other clinicians that people
with CFIDS generate greater quantities of metabolic waste products
because of faulty carbohydrate metabo lism (CFIDS Chronicle, Summer
1995). To compound the problem, elimi nation of these extra waste
products proceeds slowly in people with slug gish liver function,
leading to a state of general autointoxication, or self-poisoning.
TREATMENT TIPS
Milk thistle (or Silymarin) is an herb
that possesses the unique quality of stimulating liver regeneration.
A number of people with CFIDS report taking this herb to both protect
the liver and enhance sluggish liver func tion. Dandelion root tea, a
mild diuretic, can also be taken as a liver tonic. Sufficient intake
of water is also recommended to flush toxins from the liver. Keeping
the liver warm (warm baths or a hot water bottle) helps the liver
function at greater efficiency. As in all bodily functions, heat
speeds metabolic processes. Antioxidants (vitamin C, vitamin A,
superoxide dismutase) and glutathione also help to reduce
free-radical damage to liver tissue. The entero-hepatic resuscitation
program may be helpful in restor ing liver function in moderate to
mild cases of CFIDS.
Resting definitely helps alleviate the
"poisoned feeling," as does avoid ing liver irritants.
Activated charcoal can also be useful to absorb toxins. Any dietary
or supplement regimens that help elimination would be bene ficial.
Drinking a lot of water most certainly helps. Remedies for leaky gut
(butyric acid, Cytotec, and glutamine) are useful, as is alpha
ketoglutarate, the citric acid cycle metabolite that aids in removing
ammonia.
FURTHER READING
- Guillory, Gerard. IBS: A Doctor's Plan for Chronic Digestive Troubles. Washington, D.C.: Hartley and Marks, 1991.
- Thompson, W Grant. Gut Reactions: Understanding the Symptoms of the Digestive Tract. New York: Plenum Press, 1989.
SEE
• Chapter 4: Antihistamines, Cytotec,
Tagamet and Zantac.
• Chapter 5: Alpha Ketoglutarate,
Amino Acids, Antioxidants, Butyric Acid, Entero-Hepatic Resuscitation
Program, Herbs (milk thistle), Vitamins.
• Chapter 6: Acupressure,
Acupuncture, Aroma Therapy, Bed Rest.
DIZZINESS AND VERTIGO
Vertigo can add a very unsettling
element to CFIDS. When the world suddenly turns sideways, starts
spinning, or will not hold still, you cannot adjust. Simply lying in
bed can be a Herculean task for people with severe vertigo, which,
along with spatial disorientation, can produce nausea, headache,
sweating, faintness, and feelings of panic. Many people with CFIDS
experience vertigo as an inability to watch television or read.
Others merely feel mild, transient dizziness.
Vertigo is thought to be caused by an
inner ear problem. The function of the labyrinth, the part of the
inner ear that controls balance, can be al tered as a result of viral
or bacterial infection (labyrinthitis), reduced blood supply to the
ear, or conditions that affect the brain (such as stroke or
migraine). Balance disorders can also be caused by eye problems.
Op tometrist Dr. Roderic W. Gillilan says motion sickness can be
caused by sensitivity to rapid eye movements, particularly when
seeing motion. His patients undergo a process of desensitization
called "dynamic adaptive vision therapy," in which they
relearn how to use their eyes.
The problem of vertigo in CFIDS is
probably related to viral labyrinthitis. According to Dr. Samuel
Whitaker, an otologist at the University of California at Irvine,
patients with CFIDS may have a viral infection of the inner ear that
causes a balance defect. Dr. Whitaker examined 11 CFIDS patients with
vertigo and found that all had a viral condition called
"endolymphatic hydrops" (CFIDS Chronicle, Summer 1993).
Patients with this condition are unable to adjust to the difference between what they are seeing and what their in ner ear is telling them about their balance. They may feel their bed is on its side and clutch it so as not to fall off, even though they can see it is upright. This condition is probably caused by the reactivation of viruses found in most patients with CFIDS. Other causes of vertigo in CFIDS may be alter ations in inner ear fluid pressure caused by allergies, Candida, infection, low blood pressure (neurally mediated hypotension), and sinus problems. Hypoglycemia can also cause light-headedness because it reduces glucose supplies to the brain. Some medications commonly prescribed to treat CFIDS (tricyclic antidepressants, for example) can cause vertigo. Patients who experience dizziness after starting a new medication should check with their doctor.
Patients with this condition are unable to adjust to the difference between what they are seeing and what their in ner ear is telling them about their balance. They may feel their bed is on its side and clutch it so as not to fall off, even though they can see it is upright. This condition is probably caused by the reactivation of viruses found in most patients with CFIDS. Other causes of vertigo in CFIDS may be alter ations in inner ear fluid pressure caused by allergies, Candida, infection, low blood pressure (neurally mediated hypotension), and sinus problems. Hypoglycemia can also cause light-headedness because it reduces glucose supplies to the brain. Some medications commonly prescribed to treat CFIDS (tricyclic antidepressants, for example) can cause vertigo. Patients who experience dizziness after starting a new medication should check with their doctor.
TREATMENT TIPS
Diamox, a diuretic normally used to
treat cognitive disorders in CFIDS, may help alleviate inner ear
problems because it reduces fluid pressure. Other blood pressure
medications sometimes used in CFIDS (such as nitroglycerin and
calcium channel blockers) may also help when ear problems are caused
by excessive pressure. Antivert, an antihistamine, is commonly
prescribed to treat vertigo. Dramamine or scopalamine may be
prescribed if Antivert is not effective. It should be noted, however,
that because medications containing scopalamine affect
neurotransmission in the brain, they may produce unwanted
psychological and neurologic side effects in people with CFIDS.
Herbs that increase blood circulation
(gingko) may be beneficial for those who experience dizziness as a
result of low blood pressure, poor cir culation, or hypoglycemia.
Vitamin B can often be helpful.
Dietary changes may help in some cases
of vertigo. Too much salt or sugar can create pressure fluctuations
in inner ear fluid. Reduction of salt has been helpful in treating
Meniere's disease, an inner ear disorder char acterized by vertigo,
balance problems, and tinnitus. Reducing sugar helps alleviate
hypoglycemia and Candida overgrowth.
MORE INFORMATION
Vestibular Disorders Association 1015
NW 22nd Avenue Portland, OR 97201-3079 513-229-7705 (telephone)
FURTHER READING
The Doctor's Book of Home Remedies.
Emmaus, Pa.: Rodale Press, 1990.
SEE
• Candida, Hypoglycemia.
• Chapter 4: Antihistamines, Calcium
Channel Blockers, Diamox, Nitroglycerin.
• Chapter 5: Herbs, Vitamins.
ENDOCRINE DISTURBANCES
THYROID
The thyroid is a butterfly-shaped gland
located at the base of the neck just under the Adam's apple. It is
directly regulated by the pituitary gland, which in turn receives
instructions from the hypothalamus. Like those of the other
hormone-secreting glands of the endocrine system, the thyroid's
effects are far-reaching. The basic function of the thyroid gland is
to regu late body metabolism (the rate at which the body uses
calories to produce energy), which it accomplishes by secreting
regulatory hormones. If the thyroid secretes excessive amounts of
these hormones (hyperthyroidism), the body's metabolic rate
increases, resulting in weight loss, nervousness, rapid heartbeat,
heat intolerance, rapid growth of hair and nails, and fre quent bowel
movements with soft stool. If too little of these hormones is
secreted (hypothyroidism), the metabolic rate slows, resulting in
weight gain, lethargy, cold intolerance, rough, dry skin and brittle
nails and hair, and constipation.
Dr. Thomas Steinbach, a CFIDS
specialist practicing in Houston, Texas, has found that 30% of his
patients demonstrate thyroid dysfunction (as indicated by blood
tests). The chief problem encountered in this group is decreased
thyroid function, or hypothyroidism. The symptoms of hy pothyroidism
so closely match those of chronic CFIDS that in most cases patients
have already undergone thyroid testing—a number of times in some
cases—long before the diagnosis of CFIDS is considered. Symp toms
of hypothyroidism typically include lethargy, weight gain, hair loss,
constipation, edema (facial edema creates the puffy eyes
characteristic of hypothyroidism), muscle soreness (due to water
retention), memory loss, reproductive problems (infrequent ovulation,
miscarriage, short men strual cycles), and, in some patients, balance
problems and difficulty walk ing.
Although hypothyroidism can also result
from viral infections, ex cessive iodine intake, certain medications
(lithium), and radiation, the most common cause of hypothyroidism is
chronic lymphocytic thyroiditis, or Hashimoto's disease. In
Hashimoto's disease the thyroid becomes underactive as the result of
an autoimmune response in which the im mune system attacks thyroid
gland tissue. The resulting inflammation (thyroiditis) impairs
thyroid function. If thyroid dysfunction is the sus pected cause of
symptoms, blood tests can be performed to determine concentrations of
thyroid-stimulating hormone (TSH), triiodothyronine (T3), and
thyroxine (T4). Thyroid antibody testing is performed if Hashi moto's
disease is suspected (confirmed by the presence of antibodies). In
most people with CFIDS, test results are normal, which is not
surprising because the thyroid problems are not due to primary
thyroid failure but to dysregulation of hypothalamic hormones, which
control activity of the thyroid gland.
In The Doctor's Guide to Chronic
Fatigue Syndrome, Dr. David Bell speculates that the excess cytokine
production brought about by CFIDS could create functional impairment
of the thyroid, not by altering the amounts of thyroid hormones but
by blocking their effect. This type of hormone problem would not be
detected by standard thyroid tests (nor would impairment of
hypothalamic hormones that regulate thyroid function). When thyroid
dysfunction is not the real cause of symptoms, the disorder is
referred to as secondary (rather than primary) hypothyroidism. It
appears that this is true in many people with CFIDS, especially those
with either inconsistent hypothyroid symptoms or symptoms that
fluctuate between those of hypothyroidism and hyperthyroidism
(characterized in CFIDS by weight loss, insomnia, nervousness,
intolerance to heat, rapid heartbeat, tremor, and muscle weakness).
TREATMENT TIPS
Diagnosed hypothyroid conditions are
usually treated with a thyroid hormone substitute (Synthroid or
Levothroid). A naturopath may recommend kelp, thyroid gland extracts,
or Armour thyroid. Certain foods should be avoided, such as kale,
rutabaga, cabbage, and turnips, because they contain goitrogens
(chemicals that can interfere with thyroid hormone production).
FURTHER READING
Wood, Lawrence. Your Thyroid: A Home
Reference. Boston: Houghton Mifflin Co., 1982.
ADRENAL GLANDS
The adrenal glands are small,
almond-shaped glands located at the top of the kidneys. Their main
function is to produce hormones that respond to and regulate the
body's reaction to stress. The adrenal hormones produced in the inner
part of the adrenal glands (medulla), adrenaline (epinephrine) and
noradrenaline (norepinephrine), speed up the nervous system to
produce the well-known "fight-or-flight" response. Those
hormones produced by the outer part of the adrenal glands (cortex),
the corticoid hormones, control water retention, inflammation, and
immune system function.
The symptoms produced by adrenal
dysfunction are among the more troublesome in CFIDS because they
carry a sense of urgency or panic. Typical adrenal, or catecholamine,
symptoms are rapid heartbeat, chest pain, hyperventilation, and panic
attacks. This set of symptoms indicates that too much adrenaline is
being released into the body, overstimulating the sympathetic nervous
system. Most acutely or severely ill people experi ence these
symptoms frequently, particularly when under any kind of stress.
Curiously, the opposing set of symptoms, or those related to
under-active adrenal function, are also common in people with CFIDS.
These include intolerance to cold and heat; lowered resistance to
infections, toxic drugs, trauma, fatigue, and stress; hypoglycemia;
low blood pressure; and eventually disturbance of electrolyte
metabolism (excess excretion of sodi um and retention of potassium).
Although these two problems seem very
different, they are actually part of the same type of dysfunction
that besets the thyroid. Like the thyroid, the adrenal glands are
controlled by the pituitary gland and hypothalamus. By extension, the
adrenal symptoms found in CFIDS do not really represent primary
failure of the adrenal glands (as in Cushing's disease or Addison's
disease) but are a consequence of brain signal abnormalities. Studies
performed by Dr. Mark Demitrack and associates confirm that the main
problem with adrenal hormone production in CFIDS arises from the
hypothalamus (Journal of Clinical Endocrinology and Metabolism,
1991). It seems that the adrenal glands either underreact or
overreact to stimuli, producing too much hormone when the stimulus is
slight and none when the stimulus is great.
TREATMENT TIPS
Meditation, stress reduction exercises,
and self-hypnosis can all be effective treatments. The hypothalamus
responds to all kinds of input (psychological, emotional, sensory)
and can be calmed or stimulated using these techniques. Other types
of adrenal support include vitamin B12, vitamin C, vitamin B5
(pantothenic acid), zinc, and adrenocortical extract. The herbs
astragalus and licorice have been used with some success to support
adrenal function as well. Cortisone is sometimes administered to
severely ill patients, although its use in CFIDS is controversial. In
less severely ill patients, low doses of beta blockers may be
recommended, accompanied by careful monitoring of blood pressure.
Adrenal stimulants are usually recommended in mild cases only because
they cause worsening of symptoms in the acutely ill.
SEE
• Chapter 4: Beta Blockers.
• Chapter 5: Herbs, Minerals,
Vitamins.
• Chapter 6: Aroma Therapy,
Biofeedback, Hypnosis, Meditation.
• Chapter 7.
FATIGUE
Virtually every person with CFIDS
suffers from fatigue. The term "fatigue," however, does not
do justice to what people with CFIDS actually experience. People with
CFIDS often find themselves at a loss for words when it comes to
describing how exhausted they feel. Patients come to doctors saying
they feel "crushed," "totally wiped out,"
"comatose," or "paralyzed" or use descriptive
phrases such as "I feel like I've been hit by a truck," "I
can't get out of bed," or "I can't lift my toothbrush."
The truth is that CFIDS fatigue is unique. In its severe form it can
be all-encompassing, which can be devastating. It can rob a person of
livelihood, family, career, hope, will, and feeling. In its mild
form, fatigue is manifested as loss of en ergy or stamina. In either
case, the terms currently available do not convey the profound loss
of vitality produced by CFIDS exhaustion. More than an
understatement, however, the word "fatigue" is misleading
because its widespread use has led to a dismissive attitude on the
part of the medical establishment, which views fatigue as a normal
part of modern life.
There is nothing normal or natural
about the fatigue experienced by people with CFIDS. Unlike the state
of tiredness a person might feel after a busy day, the fatigue
produced by CFIDS is not relieved by a good night's sleep, a workout,
a protein snack, a change in lifestyle, a vacation, or any of the
other measures that normally help the healthy person "recharge."
The reason none of these measures work is self-evident. CFIDS fatigue
is not the natural product of exertion. It is a reflection of the
profound meta bolic, neurologic, and immunologic dysfunction wrought
by illness.
The definitive cause of CFIDS fatigue
has not yet been established because the cause of the disease itself
remains undetermined. However, there is ample evidence that the
mechanisms of CFIDS, which are largely associated with immune system
dysregulation, contribute to the exhaustion that is the hallmark of
CFIDS. The normal immune system response to disease that produces
cytokines (especially, interleukin-1) not only generates fever and
flu-like symptoms but also promotes slow (delta) wave activity in the
brain. (Delta waves are normally found during deep sleep.) This type
of immune activation leads to exhaustion in CFIDS, as in any illness.
People with CFIDS also experience metabolic dysregulation at the
cellular level. With disturbance of the body's energy-producing
processes, in particular, disruption of adenosine triphosphate (ATP)
production, the body cannot recuperate, no matter how much will power
is exerted.
Considering the lack of adequate
terminology to describe CFIDS fa tigue, it is incumbent on the CFIDS
community—clinicians and patients alike—to find new terms and
expressions to convey what is meant by "fatigue."
POSTEXERTIONAL FATIGUE
Fatigue directly generated by exertion
is one of the distinguishing fea tures of CFIDS. In severe cases, any
exertion (a shower, a trip to the store, or balancing the checkbook)
can trigger fatigue. Although exercise is normally recommended to
help alleviate tiredness, in CFIDS exercise not only exacerbates
fatigue, it can bring on a general worsening of all symptoms. It is
this distinctive feature that should alert the attentive physician to
the presence of CFIDS.
The excessive fatigue that comes after
exercise, or indeed any activity (usually peaking a day or two
later), is directly related to metabolic responses that in CFIDS have
gone awry. Normally, metabolic processes increase after exercise.
Blood circulates faster; heart rate increases, providing more oxygen
to muscle tissue; and cortisol is released. In CFIDS exercise seems
to produce quite the reverse. Heartbeat does not increase
sufficiently to provide extra oxygen, leaving a person out of breath,
tired, and, more crucial, without sufficient blood supply to the
brain. Laboratory tests conducted on people with CFIDS have confirmed
this deficit. Single-photon emission computed tomography (SPECT)
scans obtained a day after exercise in people with CFIDS show
widespread hypoperfusion of brain tissue. Endocrine tests reveal that
cortisol concentrations also decrease, in hibiting release of
glycogen stores from the liver. The resulting lowered oxygen levels
prompt a switch from aerobic to anaerobic metabolism, cre ating
lactic acid buildup and tissue acidosis. This will be felt a day
later as stiff, aching muscles and general malaise.
It is likely that the subjective
impression of having "hit the wall" that most people with
CFIDS feel after even a little exercise is accurate. The body's
energy needs are met through metabolic processes at the cellular
level (in mitochondria for the most part). Citric acid is broken down
by a long series of enzyme-mediated reactions (the Krebs cycle) to
produce ATP, the cellular source of energy. If the Krebs cycle is
interrupted, ATP is not formed and enough energy simply is not
available. Interruptions in the Krebs cycle can be verified with a
urine test (Organic Acids Test, Meta Metrix Labs; 770-446-5483). This
test costs about $150 and can be ordered by a doctor. The results of
the test indicate the point of disturbance in the Krebs cycle and
identify the type of support specifically needed.
A number of therapies can alleviate
fatigue. Some patients find that vitamin B12 and magnesium therapy
help alleviate postexertional fatigue. CoQ10 and branched-chain amino
acids also help increase energy and stamina. Primary therapies such
as Kutapressin, Ampligen, and gamma glob ulin also improve
postexertional fatigue. Above all, it is crucial to establish limits.
In severely ill patients, any activity (visiting with friends, taking
a shower, walking around the house) can produce the same symptoms as
vigorous exercise. These patients should not attempt any exercise and
should carefully monitor all activity. In milder cases, exertion
should be curtailed (done for less time and interspersed with rest
periods), modified (walking or swimming instead of running), and
rigorously monitored for negative effects. In short, patients need to
adjust their lifestyle according to the level of illness. It is of no
benefit for people with CFIDS to push themselves beyond their limits.
Quite the contrary, "push" inevitably leads to "crash,"
in many cases producing unnecessary relapses. During recovery,
activity levels can be increased judiciously with rate of
improvement, while making allowances for the ups and downs of CFIDS.
LETHARGY
People with CFIDS often describe a kind
of tiredness characterized by a feeling of heaviness, lassitude,
sleepiness, slowness, and inability to do things. People who
experience lethargy generally feel worst in the late afternoon or
have trouble waking up in the morning. The feeling of lassitude or
lethargy may be due to endocrine disturbances that create decreases
in blood sugar (as indicated by lethargy before or shortly after
meals or after not having eaten for several hours). Treatment for
this type of fatigue includes chromium, Krebs cycle supports (such as
alpha ketoglutarate, vitamin C, essential fatty acids, carnitine,
CoQ10), a hypoglycemic diet (especially if fatigue or sleepiness is
felt after meals), adrenal support, and rest.
Lucy Duchene, Ph.D., also points out
that these symptoms can be caused by the edema and hypotension
brought on by increased amounts of histamine released during allergic
reactions (CFIDS Chronicle, Summer 1993). If you notice that fatigue
increases during allergy seasons (fall, spring), treatments geared
toward relieving allergies (antihistamines, vitamin C) may help
relieve allergy-related fatigue. A feeling of weariness can also
result from changes in blood pressure, cardiac arrhythmias, water
retention, electrolyte imbalance, and, at the neurologic level,
increased delta wave activity, all of which can be generated by
excess amounts of hista mine or by neurologic and endocrine
disturbances (see Allergies, Cardiac and Cardiovascular Symptoms,
Endocrine Disturbances).
AGITATED EXHAUSTION
The term "agitated exhaustion"
is used by Dr. David Bell in his book, The Doctor's Guide to Chronic
Fatigue Syndrome, to characterize the type of fatigue typical of the
acute stage of CFIDS and it describes very well the inability to
"turn off" that the severely ill suffer. It is often
described as a "tired and wired" feeling. A person with
this type of fatigue does not feel sleepy, although the desire for
rest is overwhelming. This type of exhaus tion is usually accompanied
by insomnia and catecholamine-related symptoms such as rapid pulse,
hyperventilation, panic, and loss of appetite. The cause of this type
of fatigue is thought to be neurologic.
Dr. Paul Cheney puts forth a possible
explanation for many of the neurologic upsets experienced in CFIDS
(CFIDS Chronicle, Spring 1995). He proposes that toxins that
accumulate in the brain as a result of cell dysfunction, liver
toxicity, or excess cytokine production can lead to alterations in
the normal firing pattern of neurons in the brain, resulting in a
state of sustained neuronal arousal. In the state that Dr. Cheney
describes, even small stimuli spark strong responses from the nervous
system. The continued state of arousal characteristic of acute and
severe CFIDS results in agitated exhaustion. Dr. Cheney points out
that nearly every treatment that slows nervous system responsiveness
aids in controlling neurologic symptoms, including benzodiazepines
(Klonopin), magnesium, taurine, nimodipine (Nimotop), melatonin,
calcium channel blockers, butyric acid (Butyrex), and
gamma-aminobutyric acid (GABA). Meditation, hypnosis, acupunc ture,
and biofeedback can also provide help.
TREATMENT TIPS
Treatment for all kinds of fatigue
should include lifestyle changes and adequate rest. Nutritional
supplements that support the Krebs cycle give the body more energy at
the cellular level. These include alpha ketoglutarate, essential
fatty acids, carnitine, NAG, vitamin C, vitamin B complex, vitamin
B12, magnesium, CoQ10, branched-chain amino acids, and all food-based
supplements. Other useful supplements include NADH, royal jelly,
zinc, blue-green algae, DMG, and herbs such as astragalus.
For stable CFIDS, the occasional use of
stimulants can be of benefit. Central nervous system stimulants
(Lonamin, Cylert, and Ritalin) are sometimes recommended, as are
antidepressants (Prozac, Zoloft, and Wellbutrin). Stimulants should
be used with care, however, as overdose will only exacerbate the
problem.
In essence, treating fatigue is
treating CFIDS. Dr. Paul Cheney has noted that, in his experience,
fatigue is the most difficult symptom to treat be cause it is so
central to the disorder. He also makes the astute observation that
fatigue may represent a defense response in sicker patients. "In
this instance, excessive attention to the treatment of fatigue may
actually worsen the patient's condition" (CFIDS Chronicle,
Spring 1995). It might be well to keep this statement in mind before
embarking on an aggressive program to combat CFIDS fatigue.
SEE
• Allergies, Candida, Cardiac and
Cardiovascular Symptoms, Endocrine Disturbances, Hypoglycemia, Pain,
Sleep Disorders.
• Chapter 4: Ampligen,
Antihistamines, Benzodiazepines, Calcium Channel Blockers, Central
Nervous System Stimulants, Gamma Globulin, Kutapressin.
• Chapter 5: Amino Acids, Blue-Green
Algae, CoQ 10, DHEA, Essential Fatty Acids, Herbs, Melatonin,
Minerals (magnesium, zinc), NADH, Royal Jelly, Vitamins (vitamin
B12).
• Chapter 6: Bed Rest, Biofeedback,
Exercise, Meditation.
FLU-LIKE SYMPTOMS
CFIDS has often been described as the
flu that never ends. Flu symptoms such as achiness, sore throat,
tender lymph nodes, fever, chills, and malaise have appeared in
national and international case definitions of CFIDS and figure
prominently in most doctors' descriptions of typical CFIDS. In some
people, flu-like symptoms appear early in the illness and decrease
markedly over time; others may manifest few or mild flu symptoms.
However, in people who have a strong viral onset and an increased
susceptibility to colds and flus, flu-like symptoms predominate
through out the illness. This seems to be especially true in young
people.
Flu symptoms can be confusing for people who catch "every bug that's going around." It is hard for them to determine whether they have a new ailment, such as strep throat, a cold, or flu, or are merely experiencing a relapse of CFIDS.
Flu symptoms can be confusing for people who catch "every bug that's going around." It is hard for them to determine whether they have a new ailment, such as strep throat, a cold, or flu, or are merely experiencing a relapse of CFIDS.
The presence of flu symptoms has been
one of the primary motivations for attributing a viral cause to
CFIDS. Even though researchers have so far been unable to isolate a
single viral source for CFIDS, antiviral treatments have been used
with success in some cases in which viral symptoms persist.
SORE THROAT
Throat pain, scratchiness, and
tenderness are typical of CFIDS. In children, sore throat tends to be
most pronounced in the morning; in adults, it can appear at any time,
but tends to worsen after exercise, exertion, or before relapses.
Sometimes, even though the throat is not sore, it may feel "clogged"
and require constant clearing. Many people take this as a sign of
impending relapse and scale down their activities accordingly. Even
when sore throat is severe, bacterial or viral cultures rarely reveal
any infection. The throat itself may appear red or have
characteristic "crimson crescents" around the tonsillar
membranes of the upper throat at examination, but there is rarely pus
or mucus. Dr. Burke Cunha suggests that the presence of these
singular deep red crescents may be diagnostic of CFIDS because they
have been noted in up to 90% of his patients (CFIDS Chronicle, Summer
1993).
Sometimes the more severely ill show
signs of thrush, an oral Candida (yeast) infection. Thrush appears as
a white lace-like coating of the tongue and cheeks that is hard to
scrape off. Thrush is treated with prescription antifungals and home
remedies such as lemon gargles and yogurt oral "swishes."
(Candida, like fungus, will not grow in an acid medium, and the
acidophilus in yogurt replaces Candida in its growing environment.)
Irritated, scratchy throat that results
from dry mouth (dry eyes may also accompany this symptom) can be
relieved by herb teas (slippery elm, mullein, sage) taken with honey.
A simple home remedy if herbs are not available is hot lemon and
honey tea to help coat the throat. Zinc lozenges, available at health
food stores and some pharmacies, can help nip a sore throat in the
bud. (Zinc should be consumed in very small quantities with food.)
Sambucol, an herbal extract made from black elderberry, is also
ef fective against sore throat. Vitamin C drips and gargles have been
reported effective in relieving sore throat. Some people have
reported cessation of sore throat after Kutapressin, gamma globulin,
or acyclovir therapy.
TENDER LYMPH NODES
Although lymph node tenderness was
included in the original CFIDS case definition from the Centers for
Disease Control and Prevention, Dr. David Bell in his book, The
Doctor's Guide to Chronic Fatigue Syndrome, reports that only about
50% of his patients have tender lymph nodes. The lymph nodes in the
front and back of the neck, armpits, elbows, and groin seem to be
most frequently affected. Although the lymph nodes are rarely
enlarged, they feel tender to the touch or sore on movement (for
example, rolling the head back produces a tight tender feeling under
the jaw). Dr. Paul Cheney has found that the left side is usually
affected more than the right (CFIDS Chronicle, Spring 1995).
The fact that most people with CFIDS
can accurately identify most of the nodes in these areas (even if
they are completely unaware of what they are identifying) should be
enlightening to doctors who consider this symptom imaginary. The
presence of lymph node pain, especially at onset, when it is most
prominent, seems to indicate active involvement of the lymphatic
system in CFIDS; that is, an infection is present. Lymph system
involvement is typical in bacterial and viral infections (notably
mononucleosis).
The lymph system carries protein messages, or cytokines, which are released by T cells in an immune-activated state to aid in the mobilization of T and B cells. (These cells combat invading pathogens.) When lymph production is accelerated, the fluid backs up, causing tissue swelling (edema). It is significant that most of the lymph-related edema in CFIDS (including ear, tooth, and jaw pain; pain on the side of the neck; and tenderness of the lymph nodes) occurs on the left side because 90% of the lymph flows into the blood stream at a point just below the left collar bone (supraclavicular area). Dr. Cheney suspects that backup from the congested lymph system is responsible for these symptoms.
The lymph system carries protein messages, or cytokines, which are released by T cells in an immune-activated state to aid in the mobilization of T and B cells. (These cells combat invading pathogens.) When lymph production is accelerated, the fluid backs up, causing tissue swelling (edema). It is significant that most of the lymph-related edema in CFIDS (including ear, tooth, and jaw pain; pain on the side of the neck; and tenderness of the lymph nodes) occurs on the left side because 90% of the lymph flows into the blood stream at a point just below the left collar bone (supraclavicular area). Dr. Cheney suspects that backup from the congested lymph system is responsible for these symptoms.
FEVER AND CHILLS
Low-grade fever (temperature, 100° F
or less), often occurring in the afternoon or after exercise, is not
unusual in people with CFIDS, although subnormal body temperature
perhaps is more common. A resting temperature of 97° F or below,
although rare in the general population, is quite common in severe
CFIDS. Even more typical, although not commented on as often as
fever, is abnormal daily temperature fluctuation, with a low of 97°
F in the morning and a high around 99° F by afternoon. What is most
unusual about these temperature variations is that the accompanying
sensations are so exaggerated. A slight fever of less than a degree
pro duces a feeling of intense heat. Temperature drops can produce a
bone-chilling sensation of cold that no warm bath, hot tea, or pile
of blankets can remedy. Most researchers agree that the variations in
temperature experienced by people with CFIDS are typical of
hypothalamic dysregulation. Temperature variation tends to normalize
during recuperation and can be one of the signs that recovery is
under way.
SWEATS
Night sweats and spontaneous daytime
sweats unaccompanied by fever are typical of acute CFIDS, although
they also can accompany relapses, hormonal changes, and even
fluctuations in barometric pressure. Night sweats are a particular
problem because they result in insomnia. It is difficult to sleep
through night sweats. Many people have to get up in the night simply
to change their nightclothes. Unlike the sweating associated with
flu, both day and night sweats tend to be localized; that is, they
affect only a limited part of the body, typically the upper torso and
neck, although the legs, arms, and rib cage may also be affected.
Some people also break into sweats when exposed for any length of
time to electric lights, televisions, computer screens, or
telephones. Sweating, like body temperature, is controlled by the
hypothalamus and in all likelihood represents an aspect of the same
neural dysregulation that produces temperature fluctuations.
Night sweats are generally difficult to
treat (although one CFIDS patient reports that the Bach flower
remedy, scleranthus, helped her considerably). It helps to equip the
bed with many light layers that can be easily thrown off and to wear
absorbent cotton nightclothes. Some people find that a fan or opening
a window at night is helpful.
TREATMENT TIPS
Primary antiviral and immunomodulatory
therapies seem to have the greatest effect on flu-like symptoms. Many
people who have persistent flu-like symptoms or repeated viral
infections have reported success with Kutapressin, gamma globulin,
and hydrotherapy.
SEE
• Chapter 4: Ampligen, Antiviral
Agents, Cytotec, Gamma Globulin, Kutapressin.
• Chapter 5: Alpha Ketoglutarate,
Amino Acids, Butyric Acid, Entero-Hepatic Resuscitation Program,
Herbs, Vitamins.
• Chapter 6: Bach Remedies,
Hydrotherapy.
HEADACHES
Headaches are common in CFIDS. Dr. Jay
Goldstein estimates that some 75% of his patients with CFIDS
experience headaches. Most of these patients report either worsening
of previously experienced headaches or onset of a new type of
headache, often described as "like nothing I've ever had
before." As the brain has no pain receptors, the pain of a
headache must be generated in the structures in and around the brain.
These include the meninges (the membranes that encase the brain), the
large arteries and venous sinuses of the brain, the cranial and
cervical nerves that enervate the brain, and the scalp, face, and
neck muscles.
Headaches are the direct result of pressure, inflammation, traction, or displacement of any of these structures. Headaches can arise from a variety of sources, such as en docrine disturbances, neurologic disorders, and physical trauma, among others.
Headaches are the direct result of pressure, inflammation, traction, or displacement of any of these structures. Headaches can arise from a variety of sources, such as en docrine disturbances, neurologic disorders, and physical trauma, among others.
MIGRAINE HEADACHES
A sudden change in arterial dilation
produces the intense, throbbing pain of a migraine. The migraine
headache is produced when a spasm develops in the carotid artery and
the blood that is normally metabolized by the brain is released
directly into the veins. The initial constriction of the artery
produces the characteristic "aura," the zone of flashing,
shining, or shimmering lights, that can precede a migraine by 15 to
30 minutes. The subsequent release of blood can cause severe pain,
sometimes accom panied by nausea and vomiting. Migraines are usually
one-sided (left or right) and can last for hours, sometimes days.
The underlying cause of migraine is now
considered to be neurologic. The muscles that control the shunt
arteries responsible for releasing blood into the veins are
controlled by the neurotransmitter serotonin. Changes in serotonin
concentrations or function can lead to mistiming of the muscle
contractions around the arteries. Migraines can be triggered by
bright lights, strong odors, eye strain (from reading or watching
television), emotional stress (which releases serotonin), changes in
weather, and certain foods. Foods high in tyramine, a breakdown
product of the amino acid tyrosine, can cause migraines, although the
mechanism is not clear. Patients with headaches should take note if
they have cystitis since the list of foods implicated in both
disorders is the same (see Urinary Tract Problems). Some doctors
suspect that tyrosine in food acts to initiate the release of
norepinephrine (see Urinary Tract Problems for a list of foods high
in tyramine). It is theorized that the release of norepinephrine (a
vasoconstrictor) leads to reduced blood supply, but as the amount of
circulating norepinephrine wanes, the blood vessels compensate by
excessive dilation, producing headache.
Other researchers believe that people
who have migraines have difficulty metabolizing amines (amino acids,
monoamines such as serotonin, nitrites, and MSG) due to deficiencies
in the enzymes responsible for breaking down these substances.
Because amines influence blood vessel diameter, their incomplete or
slow breakdown can lead to problems in blood vessel control. All of
these theories are relevant in CFIDS because neurochemicals
(serotonin, norepinephrine, and amines) are related to many other
CFIDS symptoms.
A preventive measure for migraines is
to avoid triggering events and, at the first sign of an aura, to
retire to a dark room and apply ice. Dr. Goldstein mentions that
although Prozac can trigger headaches, it is sometimes also helpful
to treat migraine, as are calcium channel blockers and tricyclic
antidepressants (which increase levels of circulating serotonin).
Imitrex and Diamox both are reported to be helpful in relieving the
symptoms of migraine and pressure-type headaches. A new migraine
medication, lidocaine drops (an inhalant), reportedly provides relief
for some. (It should be noted, however, that many people with CFIDS
do not find relief in the medications usually prescribed for
migraine.)
Some find meditation, stress-reduction exercises, and biofeedback useful tools for warding off impending migraine. Magnesium supplements may lessen the severity of premenstrual migraine, according to some researchers. In these cases it may be helpful for women to take magnesium supplements (360 mg three times a day) during the week before their period begins.
Some find meditation, stress-reduction exercises, and biofeedback useful tools for warding off impending migraine. Magnesium supplements may lessen the severity of premenstrual migraine, according to some researchers. In these cases it may be helpful for women to take magnesium supplements (360 mg three times a day) during the week before their period begins.
SINUS HEADACHES
Sinus headaches are common in people
with allergies, but can also be caused by a cold, flu, or other
secondary infections in people with low resistance. The sinus
headache results from excessive mucus that is generated in the
sinuses to either combat viral or allergic infection. When the
sinuses are blocked, stuffed, or inflamed, the pressure creates a
headache, with localized pain in the forehead accompanied by runny
nose or post-nasal drip. If neither of these last two symptoms is
present, the sinus pain may not be due to sinus congestion but to
nerve irritation. Because neurologic pain can run the entire length
of a nerve, the source of this referred pain may be as far away as
the back of the neck (see Sinusitis).
TENSION HEADACHES
Dull, continual headaches are referred
to as tension headaches, although they are not caused by anxiety, as
the name might suggest. In CFIDS they seem to originate in the back
of the neck or at the base of the skull and can travel around to the
temples in a band of pain. Sometimes the pressure can be so intense
that it feels as though the head is in a vise. In his book, Could
Your Doctor Be Wrong?, Dr. Jay Goldstein states his belief that this
type of headache is not generated by muscle tension, as has been
previously thought, but by trigger points. The aggravation of the
headache, he contends, is the result of the spreading pain brought on
by the irritation of the trigger point, not by muscle contraction.
Dr. Goldstein recommends that with this type of headache the patient
should try to locate the trigger point.
There may be two or three points on the
edge of the trapezius muscle (which rises along the top of the
shoulders when they are shrugged) that are tender to touch. The point
implicated in headaches is the one closest to the neck. It can
generate pain that spreads up the neck, along the side of the head,
and around to a point just behind the eye. Other headache trigger
points are located on the shoulder blades (levator scapulae) and jaw
(masseter) muscles. Pain that seems to originate in the teeth and
course up the side of the face may be mistakenly attributed to
temporomandibular joint (TMJ) dysfunction when masseter trigger
points are involved. (The masseter muscle is located about an inch in
front of the earlobe and runs up to the top of the head, producing
multiple trigger points.)
Treatments for pressure headaches
include localized heat or ice on back muscles (when trigger points
are in the shoulder blades and trapezius muscle), use of a
transcutaneous electrical nerve stimulator (TENS) unit, local gentle
massage, acupuncture, and saline solution injections into trigger
points, followed by stretching of the surrounding muscle. Some
physical therapists have also recommended putting two tennis balls in
a sock and resting the back of the neck on it to treat headaches
associated with neck pain. One patient with serious headaches
reported good results from using this technique. Drug treatments
effective for tension headache include ibuprofen (Advil), Flexeril,
and some of the benzodiazepines (Valium and Klonopin). Omega-3 and
omega-6 essential fatty acids found in fish oils are good dietary
supplements to help relieve muscle tension.
It should be noted that headaches can
also be brought on by a decreased glucose supply to the brain (low
blood sugar). This type of headache is characterized by a
generalized, prickly ache over the top of the head, often accompanied
by sleepiness. Hypoglycemic headaches can be relieved by eating and
lying down (see Hypoglycemia).
TREATMENT TIPS
Although most people simply take
aspirin or acetaminophen (Tylenol) to relieve the immediate pain of a
headache, the usual over-the-counter oral medications do not seem to
provide as prolonged or immediate relief in patients with CFIDS as
they do in the general population. Some headache sufferers have
mentioned that ibuprofen works best. Ice packs placed at the back of
the neck seem to relieve eye pain associated with headaches. Gentle
massage may be helpful, although deep or vigorous massage can make
migraine worse. Pain management techniques such as meditation,
hypnosis, relaxation methods, and breathing exercises, which have
some effect in controlling vascular headache, have limited effect on
muscle tension or trigger-point headache.
MORE INFORMATION
National Headache Foundation Migraine
Trust, United Kingdom
800-843-2256 (toll-free telephone) 071 -278-2676 (telephone)
800-843-2256 (toll-free telephone) 071 -278-2676 (telephone)
Migraine Foundation of Canada
416-920-4916 (telephone)
FURTHER READING
- Rapoport, Alan, and Sheftell, Fred. Headache Relief. New York: Simon & Shuster, 1990 (dis cusses all types of headaches, their causes and effective treatments).
- Wyckoff, Betsy. Overcoming Migraine. Barrytown, N.Y.: Station Hill Press, 1991 (a short, concise compilation of vascular headache treatments, including specific drug information, alternative treatments, and a list of headache clinics in the United States, Canada, the United Kingdom, and Australia).
SEE
• Allergies, Hypoglycemia, Pain,
Sinusitis, Urinary Tract Problems.
• Chapter 4: Antihistamines,
Calcium Channel Blockers, Diamox, Nitroglycerin, Pain Relievers.
• Chapter 5: Essential Fatty Acids,
Minerals (magnesium).
• Chapter 6: Acupuncture,
Biofeedback, Hypnosis, Massage, Meditation, TENS.
• Chapter 7.
HEARING PROBLEMS
Problems in the auditory system tend to
be not as frequent or severe as visual problems, but can be very
distracting. As many auditory problems are neurologic in origin,
routine ear examinations nearly always yield normal findings.
HYPERACUITY
One of the most frequent auditory
problems reported in CFIDS is an intolerance to normal sound volume
and range, particularly in the upper frequencies. Loud noises can
generate a startle response in the acutely ill as well, producing
rapid heartbeat and flushing. People with CFIDS also find that
multiple sound inputs become intolerable. A radio, television, and
conversation occurring at the same time can produce profound
discomfort.
TINNITUS
Ringing, buzzing, humming, clicking,
hissing, popping, and squeaking noises generated in the ear rather
than from any outside source are not un usual in CFIDS. Tinnitus can
be caused by blocked eustachian tubes, which during periods of sinus
congestion and colds become filled with fluid. People with allergies
may find that they experience tinnitus during allergy season. Fluid
retention in premenstrual syndrome (PMS) also can exacerbate
tinnitus, as can increased blood flow to the area from exercise or
vasodilators. Tinnitus can be caused by salicylates, notably aspirin,
as well. Allergy-related tinnitus is usually treated with
antihistamines. For other types, acupuncture and massage to release
excess fluid sometimes provide relief. For some people, hypnosis can
be effective. In most cases, however, tinnitus is so mild and
transitory that it is left untreated.
HEARING LOSS
Some people experience hearing loss in
CFIDS. Sounds become muffled and indistinct. Sometimes only the high
register is affected, making music sound curiously flat, as though a
stereo channel were missing. The loss of auditory function, in most
cases, is not related to ear problems, whether neurologic or
mechanical, but to sinus congestion.
PAIN
Sharp transient pain in the ears is not
uncommon in CFIDS. Although the pain is severe, it rarely lasts more
than a few seconds. Like many other ear symptoms, pain can be
generated by increased pressure due to blocked fluid.
ITCHING
The left ear, in particular, seems to
be susceptible to deep itching, which, because of its location,
cannot be relieved. The itch and occasional accompanying pain do not,
in most cases, signal the presence of an ear infection. The likeliest
source of the itch is lymphatic fluid congestion. The lymph system
drains at a point just above the left collar bone. If the fluid backs
up, it can produce swelling along the left side of the neck,
left-sided jaw and molar pain, and itching in the left ear.
TREATMENT TIPS
For pressure-type ear pain and
associated headache, massaging a point about an inch in front of the
earlobe seems to help. Placing a drop of a 50-50 mixture of hydrogen
peroxide and alcohol in the ear canal (the home remedy for swimmer's
ear) also helps relieve some of the pain associated with congested
sinuses, as do antihistamines. Gingko, CoQ10, and some of the
treatments used to alleviate dizziness can also be helpful in
relieving some ear problems. Some people have reported success with
"ear candles," an alternative treatment sold in some health
food stores.
SEE
• Allergies, Dizziness and Vertigo.
• Chapter 4: Antihistamines.
• Chapters: CoQ10, Herbs (gingko).
HYPOGLYCEMIA
Hypoglycemia (low blood sugar) is
fairly common in CFIDS patients. Our bodies need sugar to produce
heat and energy. We normally obtain sugar from eating carbohydrates,
such as grains, vegetables, potatoes, fruits, and beans. The complex
carbohydrates found in vegetables and whole grains are slowly broken
down to form simple sugar molecules (glucose) , which are gradually
absorbed through the wall of the small intestine and carried to the
liver, where they are stored as glycogen. When the body needs sugar
to increase energy output, operate muscles and organ systems, or
produce warmth, the liver converts glycogen into its usable form,
glu cose, which is transported through the blood to any part of the
body where it is needed.
Because the need for glucose is almost constant (the brain is entirely fueled by glucose), blood sugar must remain fairly stable for the body to function normally. When glucose concentrations in the blood drop below the norm, the brain (via the pituitary and thyroid glands) signals the adrenal glands to release cortisol. Cortisol stimulates the liver to release more glycogen to raise the blood sugar level and keep it steady. If, however, a person experiences chronic or repeated dips in blood sugar levels, whether from excess intake of simple sugars or malfunction of any of the organs involved in glucose production and release, the adrenal glands become overtaxed and symptoms of low blood sugar develop. A sudden or prolonged decrease in blood sugar levels can cause sleepiness, faintness, muscle tremor, cold hands and feet, muscle pain, irritability, depression, anxiety, blurred vision, numbness, indigestion, vertigo, exhaustion, insomnia, hot flashes, carbohydrate craving, itching, nightmares, forgetfulness, ravenous hunger, moodiness, weakness in the legs, and heart palpitations. These could serve as a catalog of CFIDS symptoms were it not for the notable (and significant) absence of fever, sore throat, and lymph node tenderness.
Because the need for glucose is almost constant (the brain is entirely fueled by glucose), blood sugar must remain fairly stable for the body to function normally. When glucose concentrations in the blood drop below the norm, the brain (via the pituitary and thyroid glands) signals the adrenal glands to release cortisol. Cortisol stimulates the liver to release more glycogen to raise the blood sugar level and keep it steady. If, however, a person experiences chronic or repeated dips in blood sugar levels, whether from excess intake of simple sugars or malfunction of any of the organs involved in glucose production and release, the adrenal glands become overtaxed and symptoms of low blood sugar develop. A sudden or prolonged decrease in blood sugar levels can cause sleepiness, faintness, muscle tremor, cold hands and feet, muscle pain, irritability, depression, anxiety, blurred vision, numbness, indigestion, vertigo, exhaustion, insomnia, hot flashes, carbohydrate craving, itching, nightmares, forgetfulness, ravenous hunger, moodiness, weakness in the legs, and heart palpitations. These could serve as a catalog of CFIDS symptoms were it not for the notable (and significant) absence of fever, sore throat, and lymph node tenderness.
In CFIDS, however, hypoglycemia is not
the cause of the illness— although it may cause many symptoms—but
the result of profound metabolic upset. If the normal functioning of
the body requires adrenal hormones to keep the blood sugar level
constant, reductions or excesses of these hormones will in themselves
cause fluctuations in blood sugar levels. Because the adrenal glands
rely on signals from the pituitary and thyroid, and ultimately the
hypothalamus, a problem in any of these areas will affect renal
production. The resulting fluctuations in blood sugar levels are the
inevitable consequence of erratic adrenal function.
TREATMENT TIPS
For treating common hypoglycemia,
doctors rely principally on dietary changes. In his book,
Hypoglycemia: A Better Approach, Dr. Paavo Airola recommends frequent
small meals high in complex carbohydrates and protein (to slow the
metabolism of sugars) and avoidance of stimulants (coffee, tea,
caffeinated drinks) and sweets (cookies, cakes, candies, alcohol,
refined flour products, dried dates, juices, including carrot juice,
and anything containing sugar). The flood of simple sugars into the
system provokes a decrease in blood sugar levels. For people with
CFIDS, following Dr. Airola's advice seems to help. During episodes
of hypoglycemia, eat something as soon as possible and either sit or
lie down until blood sugar level rises.
Because homeostatic regulation is slow in CFIDS, this can take 15 to 20 minutes. Then get up and eat something substantial. In any event, do not go for more than 3 hours without eating something (carry food with you when you go out). Eat some whole grains and proteins at each meal. Avoid all sugars. Do not fast. Stress, emotional upset, and overexertion, because they stimulate adrenal output, exacerbate the symptoms of hypoglycemia. Thus, including stress reduction exercises as part of your daily routine will be helpful.
Because homeostatic regulation is slow in CFIDS, this can take 15 to 20 minutes. Then get up and eat something substantial. In any event, do not go for more than 3 hours without eating something (carry food with you when you go out). Eat some whole grains and proteins at each meal. Avoid all sugars. Do not fast. Stress, emotional upset, and overexertion, because they stimulate adrenal output, exacerbate the symptoms of hypoglycemia. Thus, including stress reduction exercises as part of your daily routine will be helpful.
Supplements that can help include
vitamin C (to normalize blood sugar and improve adrenal function),
vitamin B complex (vitamins B6, B5, and B12, in particular, are
important to the adrenal, pancreas, and liver supports), magnesium
(to aid in carbohydrate metabolism), calcium (for proper utilization
of other minerals and vitamins), and chromium (to regulate blood
sugar). An herb that is especially beneficial is licorice, long
regarded by the Chinese as a powerful adrenal support and the
"emperor" of all herbs.
SEE
• Chapter 5: Herbs (licorice),
Minerals, Vitamins.
JOINT PAIN
In his book, The Disease of a Thousand
Names, Dr. David Bell reports that some 65% of his patients with
CFIDS experience joint pain (arthralgia). Joint pain for many is a
prominent, recurring symptom. Arthralgia tends to affect the ankles,
knees, elbows, shoulders, and sometimes hips. Arthralgia in CFIDS is
migratory, transient, and can develop after many of the other CFIDS
symptoms. Joint problems tend to predominate in children; some adults
with CFIDS never experience them.
Because the pain is rarely accompanied
by any swelling or redness, most doctors do not test for arthritic
conditions or joint-related diseases. However, if pain and stiffness
persist, the patient may be tested for any of a number of conditions
that affect the joints, such as Lyme disease, rheumatoid arthritis,
or lupus.
Lyme disease is a bacterial infection
that, in its late stages, can produce inflammation in the large
weight-bearing joints (knees and hips) as well as cause fatigue,
problems with thinking, memory loss, and emotional changes. If
results of the Lyme test are positive, the disease is treated with
antibiotics.
Rheumatoid arthritis is an autoimmune
disease that causes inflammation of the synovial membrane, the thin
sheath that cushions and lubricates the joints. Rheumatoid arthritis
tends to start in the small joints of the fingers (second and third),
feet, and wrists and develops symmetrically, affecting both sides of
the body similarly. Because rheumatoid arthritis is systemic, it can
produce low-grade fever, fatigue, muscle achiness, weight loss, and
depression, in addition to joint pain. In the early stages of
rheumatoid arthritis there may be no visible swelling or redness.
Therefore, patients with any of these symptoms should have a blood
test for rheumatoid factor (RF), a test that is about 80% accurate in
identifying rheumatoid arthritis. Rheumatoid arthritis is treated
with anti-inflamma tory drugs. It should be mentioned that a number
of people with chronic infections (including CFIDS) also test
positive for rheumatoid factor.
Systemic lupus erythematosus, an
autoimmune disease that primarily affects women, causes joint pain in
the hands, wrists, elbows, knees, and feet. Other characteristic
symptoms include a red rash over the cheeks and nose, hair loss,
photosensitivity, Raynaud's phenomenon, kidney problems, and
depression. The initial test for lupus is the antinuclear antibody
test (ANA), which, in 95% of all cases, will indicate whether an
autoim mune process has developed. Lupus is treated with
anti-inflammatory drugs. A few people with CFIDS also test positive
for antinuclear antibodies.
Although true arthritis (involving
swelling, redness, and heat around the joint) is uncommon in CFIDS,
many of the symptoms that accompany arthritis are not.
COMMON JOINT PROBLEMS
GELLING. Gelling is stiffness in the
joints that develops after holding a position (usually sitting) for a
while. It is especially noticeable after sitting in positions that
require bending of the joints, such as sitting cross-legged or
holding a book up while lying in bed for more than 15 or 20 minutes
without changing position. Gelling affects children as well as
adults. The stiffness can be relieved with a few minutes of gentle
movement of the affected joint.
PAIN. Joint pain tends to be sporadic
and transitory and, in most cases, is asymmetric (occurs on one side
of the body). The pain is most often felt in the soft tissue around
the joint (knee pain, for example, is felt in the muscle above the
knee and ankle pain in the top of the foot). Very rarely is the pain
accompanied by swelling. However, any inflammation that devel ops
should be examined by a physician (see Pain).
CARPAL TUNNEL SYNDROME. Dr. Jay
Goldstein has noted that associated carpal tunnel syndrome is fairly
common in CFIDS (CFIDS Chronicle, Fall 1992). In carpal tunnel
syndrome the median nerve that supplies blood to half the hand is
"pinched" by excess fluid accumulating in the area around
it (the carpal tunnel). The pressure on the nerve causes tingling and
numbness in the tips of the fingers and aching in the wrist that can
spread up the forearm to the shoulder. The condition is exacerbated
by putting any stress on the wrist. Dr. Karl Folkers, Director of the
Institute of Biomedical Research at the University of Texas at
Austin, be lieves that carpal tunnel syndrome is caused by a
deficiency of vitamin B6 and has observed that the symptoms nearly
always disappear when vita min B6 supplementation is administered.
TREATMENT TIPS
Although many people do not treat joint
pain specifically, those who do usually use over-the-counter
nonsteroidal anti-inflammatory drugs (NSAIDs) and analgesics such as
ibuprofen (Advil) or acetaminophen (Tylenol). More severe pain can be
treated with narcotics (such as hydrocodone).
Rheumatologists at Duke University
Medical Center recommend that all of these medications should be used
sparingly for joint conditions because of side effects and because
the benefits of these drugs are usually so short-lived. Nutritionists
recommend evening primrose oil (essential fatty acids), zinc, and
vitamin B6 for treatment of arthritic conditions. Gentle exercise
such as rotation or other movement of the affected joint is also
generally recommended for keeping good mobility. Acupuncture can
sometimes ease the pain, as can transcutaneous electrical nerve
stimulation (TENS). For people who suspect food allergies, a
rota tion diet and strict avoidance of offending foods (those of the
nightshade family, in particular) can sometimes help prevent joint
symptoms.
FURTHER READING
Pisetsky, David S. The Duke University
Medical Center Book of Arthritis. New York: Fawcett Columbine, 1991.
SEE
• Chapter 4: Pain Relievers.
• Chapter 5: Essential Fatty Acids.
• Chapter 6: Acupuncture, TENS.
• Chapter 9.
LOSS OF LIBIDO
Although people with CFIDS rarely
experience true sexual dysfunction (impotence, frigidity), loss of
sexual desire is common, not just in severe cases but in mild cases
as well. Loss of libido is a serious problem, not only because of
curtailed sex life but because in some cases it leads to the loss of
partners and spouses, which for many can be as devastating as the
illness itself. Like most other symptoms, loss of sexual desire can
be coped with, and even treated. Unlike every other symptom, however,
coping with loss of libido requires the active involvement of two
people.
In severe illness, the idea of
lovemaking is simply beyond thought. Acute and severe CFIDS can
produce such overwhelming physical effects (pain, especially) that
the normal state of relaxation required for lovemaking is effectively
eliminated. As one well spouse of a woman with CFIDS pointed out, "If
my wife had advanced cancer, and I told the doctor that she had
sexual problems because she didn't want to make love, he'd think I
was nuts." The profound depression that often accompanies severe
CFIDS also has the effect of limiting sexual accessibility. Even in
mild CFIDS, in which physical symptoms are not incapacitating, the
loss of sexual desire may represent a persistent, nagging problem.
Sexual desire, like all reproductive
processes, is controlled by the sex hormones and neurotransmitters
(dopamine, norepinephrine, acetylcholine, vasoactive intestinal
peptide). Testosterone, the hormone that contributes to sexual
"drive," is regulated by the endocrine system (which is
adversely affected by the brain dysfunction typical of CFIDS).
Testosterone is abundant in men but is also produced by women,
especially around the time of ovulation. It is not surprising that
many women feel the "urge" around that time of the month.
The neurotransmitters involved in
sexual responses are numerous. In the early stage of arousal,
acetylcholine and vasoactive intestinal peptide are released,
signaling the parasympathetic nervous system to dilate blood vessels,
decrease blood pressure, and, in men, start an erection. The
vasodilating effects of early sexual arousal create a feeling of
relaxation (which sometimes leads to sleepiness). Eventually dopamine
and norepinephrine are released. These two neurochemicals stimulate
the sympathetic nervous system. Heart rate increases, palms sweat,
and blood vessels constrict. (Because of the excitatory effects of
adrenal hormones, people with severe CFIDS usually find this stage of
arousal overly stimulating and may feel ill as a result.) Histamine
is also released, producing a flush. Release of oxytocin, a
neuropeptide produced in the pituitary gland, is responsible for the
muscle contractions that occur at climax. (Oxytocin is also credited
with generating feelings of protectiveness, nurturance, and romance
in people.)
It is not surprising that CFIDS causes
dysregulation of many of the hormones and neurochemicals that govern
sexual responsiveness. The en docrine abnormalities discovered by Dr.
Mark Demitrack and colleagues reveal both adrenal under- and
overresponsiveness, resulting in altered production of adrenal
hormones, in this case, norepinephrine (Journal of Clinical
Endocrinology and Metabolism, 1991). Deficiencies in oxytocin and
acetylcholine have also been found in people with CFIDS. With the
general endocrine system upset and neurologic dysregulation typical
of CFIDS, problems with libido can be expected.
TREATMENT TIPS
Problems with libido are complex but
can be effectively managed. The key to treating loss of libido is a
thorough understanding of the problem. A firm belief on the part of
both partners that the decreased sexual motivation is the result of
illness rather than to loss of love can truly save a relationship.
Counselors experienced with CFIDS may be able to offer invaluable
help. A good counselor can help work out alternatives to previ ously
established habits of emotional expression, appropriate ways to
express sexuality during illness, and a means to open dialogue
between partners in whom the frustration and despair of stymied
intimacy may be long-standing.
Certain drugs can help increase libido.
Most of these are stimulants and must be used with caution.
Wellbutrin, an antidepressant, and the central nervous system
stimulants Cylert and Ritalin all increase the amount of
norepinephrine in the brain and concurrently act to increase sexual
arousal. For those who are more severely ill, nondrug treatments may
be effective. Vitamins, minerals (especially zinc), essential fatty
acids, and the amino acids phenylalanine and tryptophan are vital in
the formation and maintenance of the neurochemicals and hormones that
pro duce sexual responsiveness. Look for foods high in these
nutrients. Choco late, the only food that contains a natural
aphrodisiac, phenylethylamine, may be tolerated by some people with
CFIDS. One patient with chronic CFIDS discovered that folic acid
taken in combination with vitamin B12 alleviated libido problems.
The best remedy for loss of libido is
recovery. Nevertheless, those still struggling with the illness need
not despair. The best approach is to take advantage of it when it's
there and not push things when it isn't. Sometimes just removing the
stress of having to produce a response can act as a sexual stimulant.
In all cases, remember there is no substitute for tender feelings,
and these can be expressed any time when there is love and trust
between two people.
MUSCLE PROBLEMS
Muscle-related problems are among the
most frequently encountered symptoms in CFIDS, affecting
approximately 80% of the CFIDS population. Although muscle pain,
weakness, and tremor are common, their cause remains the subject of
much debate.
Inflammatory muscle ailments that
produce weakness and pain, such as polymyositis and polymyalgia
rheumatica, although symptomatically similar, do not have much in
common with the muscle problems generated by CFIDS.
Some researchers have speculated that a
virus affecting the nervous system, perhaps similar to poliovirus,
may lie at the root of the overwhelming weakness characteristic of
the acute stages of the illness. Although the similarity in muscle
symptoms between post-polio syndrome and CFIDS is striking, no
evidence of viral infection has been found in nerve or muscle tissue.
Others have proposed that an alteration in protein metabolism in
muscle cells may be at fault, yet there is very little evidence to
support this view. The same is true for studies that examine enzyme
levels and muscle tissue structure. Despite the lack of any
definitive explanation for muscle problems, most CFIDS clinicians
agree that the problem is either neurologic, like so many other CFIDS
symptoms, or due to a mitochondrial dysfunction. Dr. Hirohiko
Kuratsune and Dr. Audrius Plioplys have found in their own
independent research that peo ple with CFIDS demonstrate consistently
depressed concentration of acyl-carnitine (CFIDS Chronicle, Winter
1995). A deficiency in carnitine leads to the mitochondrial
dysfunction that eventually causes muscle weakness.
Dr. Paul Cheney has proposed that in CFIDS, anaerobic cell metabo lism predominates over aerobic cell metabolism (CFIDS Chronicle, Fall 1994; CFIDS Chronicle, Spring 1995). Unlike aerobic cell metabolism, which is fueled by circulating glucose (from carbohydrates) and oxygen, the much older process of anaerobic cell metabolism is fueled by stored glycogen and fructose. While the by-products of aerobic metabolism (carbon dioxide and water) are harmless, the by-products of the more inefficient anaerobic metabolism (lactic acid and ammonia) are not. Accumulation of these anaerobic toxins results in acidosis, which can produce a generalized deep ache and hard, stiff muscles.
Dr. Paul Cheney has proposed that in CFIDS, anaerobic cell metabo lism predominates over aerobic cell metabolism (CFIDS Chronicle, Fall 1994; CFIDS Chronicle, Spring 1995). Unlike aerobic cell metabolism, which is fueled by circulating glucose (from carbohydrates) and oxygen, the much older process of anaerobic cell metabolism is fueled by stored glycogen and fructose. While the by-products of aerobic metabolism (carbon dioxide and water) are harmless, the by-products of the more inefficient anaerobic metabolism (lactic acid and ammonia) are not. Accumulation of these anaerobic toxins results in acidosis, which can produce a generalized deep ache and hard, stiff muscles.
FIBROMYALGIA
Dr. Dedra Buchwald, a physician from
Seattle who conducted a long-term study of CFIDS patients, found that
as many as 75% of these patients also had fibromyalgia. Fibromyalgia
primarily affects women between the ages of 20 and 40 years. To date,
this disorder has been diagnosed in 3 to 6 million patients in the
United States, or 15% to 20% of all patients seen by rheumatologists.
Of these, it is safe to conclude that many would also qualify for a
diagnosis of CFIDS because of the similarity of symptoms. De spite
the overlapping symptoms, however, it would be misleading to conclude
that the two illnesses are the same because a subset of patients with
fibromyalgia clearly suffer from a distinct illness.
Fibromyalgia, much like CFIDS, is a
syndrome that has perplexed the medical community for decades. The
cause of fibromyalgia has not yet been determined, but physicians
have observed that it can be triggered by an injury or accident,
infection, or sudden endocrine changes, such as childbirth. The
predominant symptom in fibromyalgia is pain, although accompanying
symptoms can include sleep disturbances, headaches, fatigue, and
cognitive impairment. Typically, the pain waxes and wanes, but
periods of physical exertion, illness, stress, and even changes in
the weath er may cause exacerbations. Pain is often localized in the
muscles of the neck and upper back, although patients also report
pain in the hands, lower back, thighs, shoulders, feet, and principal
joints. A feeling of generalized achiness can accompany fibromyalgia,
as can pain described as "burning," "stabbing,"
"throbbing," or "shooting." Prolonged periods of
fibromyalgia pain can result in stiffness and exhaustion.
The diagnosis of fibromyalgia is based
on a symptoms history and by the presence of tender points located on
the surface of the body. There are 18 tender or "trigger"
points that are commonly palpated to make a diagnosis, although the
patient may feel pain in many other locations. Observable tenderness
in 11 of 18 points can help confirm a diagnosis.
TREATMENT TIPS
The treatment of fibromyalgia is
largely geared toward providing symptomatic relief. Rheumatologists
commonly recommend nonsteroidal anti-inflammatory drugs (NSAIDs) for
pain, as well as small doses of anti-depressants or benzodiazepines
to help with sleep disorders. (Often correcting an existing sleep
disorder also diminishes pain.) Acupuncture, massage, and
transcutaneous electrical nerve stimulation (TENS) are also
effective, as are stress management techniques (meditation,
self-hypnosis), to alleviate chronic pain. In severe cases, narcotics
may be required to quell persistent pain. Many patients report
success with supplements such as magnesium injections, malic acid,
and essential fatty acids. Muscle relax-ants can be used to help
relax muscle knots and spasms associated with fibromyalgia.
MORE INFORMATION
Fibromyalgia Network
Box 31750
Tucson.AZ 85751-1750
800-853-2929 (toll-free telephone 8:00
am to 5:00 pm Monday-Friday, Mountain time)
frnnetter@aol.com (e-mail)
FURTHER READING
- Pellegrino, Mark J. The Fibromyalgia Survivor. Columbus, Ohio: Anadem Publishing, 1995.
- Starlanyl, Devin, and Copeland, Mary Ellen. Fibromyalgia and Chronic Myofascial Pain Syndrome. Oakland, Calif.: New Harbinger Publications, 1996.
SEE
• Pain.
• Chapter 4: Antidepressant Drugs,
Pain Relievers.
• Chapter 5: Essential Fatty Acids,
Malic Acid, Minerals (magnesium).
• Chapter 6: Acupuncture, Massage,
Meditation, TENS.
SPASM
Another type of muscle pain commonly
found in CFIDS is the muscle spasm. Spasms commonly occur in the
gluteal muscles (pyriform muscle spasm), producing what feels like
sciatica; the diaphragm, esophagus, and intercostal muscles, leading
to chest and rib cage pain; small muscles of the eyes and ears,
resulting in eye and ear pain; and head, resulting in localized
"spike" headaches.
TREATMENT TIPS
Muscle spasms are often relieved by
taking magnesium supplements in elixir or injection form. Spasms also
respond to Flexeril, supermalic, arnica gel, fish oil, evening
primrose oil, and some of the benzodiazepines.
WEAKNESS (PARESIS)
The loss of muscle strength is common
in severe cases of CFIDS and may persist well into recuperation.
Sometimes the weakness may be so profound that a person is unable to
get out of bed or must use a wheel-chair. Weakness can be localized
(arms, hands, legs, and neck) and can occur quite suddenly. Bouts of
sudden weakness are often triggered by lifting (producing weakness in
the legs), driving, or any form of weight-bearing exercise. In the
very ill, even the amount of effort needed to maintain the weight of
bedsheets, lift a toothbrush, or hold a telephone may be tremen dous.
Although some doctors have made the assumption that weakness in CFIDS
is due to deconditioning, studies seem to indicate that in CFIDS
muscle weakness is due to a malfunction in the nervous system. Muscle
weakness comes on so suddenly in CFIDS, and so often in people who
just days before becoming ill had been jogging, swimming, hiking,
hiking, dancing, and pursuing an active, healthy life, that it is
irrational to at tribute weakness to inactivity (although prolonged
weakness may eventually result in deconditioning). Unlike
poliomyelitis and other systemic illness, muscle weakness in CFIDS is
not usually progressive. Doctors have noted that even people who have
been bedridden or housebound for 1 or 2 years demonstrate a
near-normal level of muscle strength, an observa tion that implies
that CFIDS itself does not cause substantial muscle atrophy.
TREATMENT TIPS
Supplementation with carnitine has been
reported to alleviate muscle weakness in many people with CFIDS.
Other treatments for weakness include amantadine (Symmetrel),
interferon, gamma globulin, magnesium, vitamin B12, CoQ10,
nitroglycerin, Prozac, antifungal agents, and Ampligen. It should be
mentioned that, although antidepressants are commonly prescribed to
relieve CFIDS symptoms, on occasion some of the tricyclic drugs can
actually make muscle weakness worse. Patients who are taking
antidepressants and experiencing increased muscle weakness should
inform their doctor.
TREMOR
Shaking of the arms, legs, and torso is
not unusual in CFIDS, although it tends to pass within the first few
months in most people. Tremor is most likely neurologic in origin.
Even in those who do not experience overt shaking, a slight
hesitation in movement, or "cogwheel" effect, has been
observed by a number of physicians who attended CFIDS outbreaks in
England and South Africa. Such hesitation is easily seen when a
smooth, continuous motion is attempted, such as lowering an arm or
leg from a raised position. As with twitches, disruption of normal
basal ganglia function, whether from direct injury or disruption of
the hypothalamus, causes tremor. Tremor is exacerbated by stress,
tiredness, fasting, and decreases in blood sugar levels. A
broad-spectrum nutritional supplement may help relieve this symptom
considerably.
LOSS OF COORDINATION
Most people with CFIDS experience some
aspect of coordination impairment. Unfortunately, people who drop
things, break dishes, spill food on themselves, run into doorjambs,
trip, or have difficulty negotiating stairs not only damage
themselves, but have embarrassment to add to their long list of
difficulties. A number of factors can contribute to clumsiness. Loss
of muscle coordination is related to loss of strength. Sometimes the
ability to coordinate muscles, which can lose strength suddenly and
un-predictably, leads to dropping things. Impairment in
depth-of-field vision and nervous system feedback (proprioception)
can also lead to difficulty in judging distance, placement, and
relative velocity. A person may under-judge the counter when placing
a dish on it or overjudge a stair when placing a foot on it. Balance
problems (ataxia), also quite common in CFIDS, may cause falling or
tripping.
TWITCHES
Twitches (benign fasciculations) are
common throughout the course of CFIDS. Twitches can occur in any body
part (legs, arms, torso, face). They can occur continuously,
sporadically, be widely distributed, or be confined to one area only
(for example, the corner of an upper eyelid). Twitches increase with
tiredness and decrease with rest. Research seems to indicate that
twitches, like the loss of complex sequencing movements (as in
speech), are due to a dysfunction of the basal ganglia. However,
inasmuch as the nerve fibers that connect the basal ganglia to the
cortex pass through the hypothalamus, disruption of hypothalamic
function could just as well cause muscle symptoms. Twitches are also
associated with a dysfunction of the cholinergic system. They are
harmless in and of themselves and, although annoying, require no
special treatment. Magnesium seems to reduce their frequency and
extent.
SEE
• Hypoglycemia.
• Chapter 4: Ampligen,
Antidepressant Drugs, Antifungal Agents, Antiviral Agents
(ama-tadine), Benzodiazepines (Valium), Flexeril, Nitroglycerin,
Pain Relievers.
• Chapter 5: Amino Acids
(carnitine), Essential Fatty Acids (evening primrose oil, fish
oils), Malic Acid, Minerals (magnesium), Vitamins.
• Chapter 6: Acupuncture, Hypnosis,
Massage, Meditation, TENS.
ORAL PROBLEMS
Oral problems are common throughout the
course of CFIDS. They can occur in the gums, teeth, joints, and
muscles. Although oral problems can cause a great deal of pain, they
are usually transient. Sometimes a tooth ache (particularly back
molar) is so severe a person makes an appointment to have the tooth
removed. Then the ache suddenly disappears com pletely (hopefully
before the appointment is kept). Tooth pain, in particular, is
notorious for coming and going, seemingly without reason. Its
quixotic occurrence, however, is no reason to take it lightly.
Dentists who count people with CFIDS among their patients have
observed that gum problems are rife in this group. The many teeth
complaints reported by people with CFIDS often are related to gum
inflammation.
Fortunately, most common oral problems
usually respond well to treatment.
GUMS
Gingivitis is common in CFIDS. When
food is chewed, small residues remain in the mouth and become trapped
under the gums, causing them to become irritated. If the food
particles are not removed, the gum becomes inflamed (gingivitis).
Chronic inflammation can cause small pockets to form around the gums,
leading to buildup of hardened plaque (tartar) under the gums. The
gums respond to the tartar as they would to splinters. If the tartar
is not removed, the gums eventually become diseased (periodontitis),
and loss of teeth may ensue. Bad breath can be a sign of gum disease.
If halitosis not related to sore throat, or upset stomach is a
recurring problem, a trip to the dentist may be in order. In many
cases, the inflammation can be caused by allergic reactions, viral
infections, or poor circulation to the gums. Often gum inflammation
is mistaken for a toothache. A person with frequent problems due to
gum inflammation should keep his or her teeth and toothbrush clean
and have teeth professionally cleaned every 3 months.
TEETH
Sensitivity to cold or heat is common
in people with oral problems. This may be caused by increased nerve
sensitivity. It is rarely a sign of incipient root problems, although
the dry mouth experienced by many people with CFIDS can increase the
risk of tooth decay. Tooth problems such as decay undermining a
filling can exacerbate sore throat, headache, and jaw pain and should
be attended to at once. Be aware, however, that people with CFIDS
tend to react poorly to the epinephrine doctors and dentists add to
anesthetics to make them last longer. Dr. Paul Cheney recommends
requesting anesthetic without epinephrine, particularly for patients
taking antidepressant medication (Mass CFIDS Update, Summer 1991).
CANKER SORES
Canker sores are more the rule in
children than in adults and can result from injury (a toothbrush or
food scraping along the inside of the teeth) or infection in the
mouth or throat. The sores look like small bumps with white heads.
They can grow and are quite painful. To treat canker sores, sweets,
starches, and milk products should be avoided and the mouth rinsed
with hot salty water before and after each meal. With this regimen,
canker sores usually disappear in a day or two. Lysine, an amino
acid, and Zovirax, an antiviral agent, also are helpful in treating
canker sores.
TEMPOROMANDIBULAR JOINT SYNDROME
Temporomandibular joint (TMJ) syndrome
in CFIDS is caused by muscle spasms or joint inflammation and only
rarely by bite asymmetry. The muscles leading from the jaw to the top
of the head are among the strongest in the body, a holdover from the
days when our ancestors had to crack nuts between their teeth. When
these muscles spasm, the result is severe, aching pain that extends
from the jaw up the side of the head. The accompanying headache can
be unbearable. People with this kind of pain often grind their teeth
and may have nocturnal bruxism (teeth grinding during sleep).
Sometimes opening the mouth wide stretches the muscles and helps
relieve the pain of the spasm. Localized heat also helps relieve the
pain. The lengthy (and expensive) bite readjustments recommended by
dentists for TMJ are not usually helpful because the problem in CFIDS
is seldom mechanical. Muscle relaxants, Flexeril, Klonopin,
tranquilizers, herbal relaxants (valerian, skullcap), hypnosis,
magnesium, massage, transcutaneous electrical nerve stimulation
(TENS), and chiropractic are some ways in which TMJ has been
alleviated in people with CFIDS.
TASTE
The sense of taste is affected in
CFIDS, making some foods taste bitter, metallic, or spoiled. Often
the same foods eaten a few hours later taste fine. Alterations in
taste are more frequent in the acute stage of CFIDS and dur ing
relapses. It has been speculated that changes in taste are largely
due to limbic system disturbances, which affect the sense of smell.
Children seem to be especially affected by alterations in taste and
may become very picky eaters as a result.
TREATMENT TIPS
Oral hygiene is important to maintain
healthy teeth. This is particularly relevant for people with gum
problems. People with CFIDS should try to give their teeth a careful
cleaning once a day with a toothbrush and dental floss. This can be
accomplished in stages while sitting or even lying down. Using a
soft, small-headed dry brush, gently rotate the bristles over and
around the gum line of each tooth, about 10 times for each tooth.
Start with the back molars and work around to the front. Then floss
and rinse thoroughly. Even if you can only accomplish one cleaning a
day, it will be sufficient to keep plaque from forming. Other times,
rinsing with a warm saline solution after a brief brushing is all
that is needed. After professional cleaning, it is wise to rinse the
mouth and gargle three times a day with warm slightly salty water to
help prevent infection. Frequent oral infections may be due to
bacterial buildup on the toothbrush. Soaking the toothbrush in
hydrogen peroxide kills any germs that may have collected in the
bristles. After colds or other infections, it is best to replace the
toothbrush with a new one. Natural cleaners that are good for the
teeth and gums include baking soda (a mild abrasive; good for use by
people sensitive to the ingredients in toothpaste), neem (a botanical
gathered from the Neem tree in India; good for the gums), myrrh (an
ancient herbal antisep tic available in health food stores; good for
the gums). It should also be mentioned that the Japanese use CoQ10 to
help cure gum disease.
CAUTIONS
• Do not take antibiotics for gum
problems unless a bona fide infection (with identified bacterium) can
be verified. Antibiotics kill the bacteria needed for good oral
ecology and may worsen gum problems in the long run (as will repeated
rinsing with hydrogen peroxide).
• Try to avoid oral hygiene products
that contain artificial colors, flavors, sweeteners, alcohol, or
talc; these are often sources of gum irri tation in people with
CFIDS.
• Do not have all your fillings
removed to eliminate potential leakage of mercury. While mercury
poisoning resembles CFIDS in many ways, the two should not be
confused. Elimination of numerous fillings is expensive, laborious,
and thoroughly stressful, requiring use of anesthetics and other
chemical substances that may cause harmful effects to a compromised
immune system. Patients with silver amalgam fillings who believe
their removal may be helpful should first have a hair test to check
for elevated mercury concentration; then have the fillings removed
over time taking care not to release mercury-containing filling
fragments into the mouth (dentists use a rubber dam for this
purpose). Be forewarned that, although mercury is certainly toxic, it
is not likely that the small quantity of mercury that can leak from
fillings will cause the myriad, persevering symptoms of CFIDS. The
small number of people with CFIDS who have had fillings removed have
not reported improvement. A few have felt worse for days to several
weeks afterward because of the exhausting nature of extensive filling
removal and replacement.
PAIN
Pain is nearly universal in CFIDS,
although the frequency and degree may vary enormously. However, pain
as a predominant symptom may overshadow all others. The deep,
burning, relentless pain felt by so many people with CFIDS can be
unbearable. Pain can also become a source of great frustration when
its source is not clear. Doctors who do not see any cause for pain
may dismiss the experience as "all in your head" or refer
you to a psychiatrist, a situation deeply distressing for patients
with chronic pain.
The experience of pain is completely
subjective. Pain cannot be measured objectively, nor can pain levels
be predicted by standard judgments of injury or trauma. The mechanism
through which people feel pain is neurologic. Pain receptors in the
skin (substance P, prostaglandins, bradykinin) respond to stresses
such as heat, pressure, and tissue injury and re lay pain messages to
the brain through the nerves. The pain signal is eventually relayed
to the thalamus, where it is differentiated into heat, cold, or
pressure pain. The degree of pain a person feels after receiving the
stimulus (the pain threshold) is completely individual and depends on
the ex tent to which chemical messengers that relay the pain signals
to the thalamus are counteracted by endorphins. Endorphins, which are
chemically similar to morphine, are the body's own painkillers. When
few endorphins are released, the experience of pain is much greater.
The origins of chronic pain in CFIDS
are thought to be neurologic, either generated by increased
irritability of the central nervous system, leading to overproduction
of pain message chemicals (substance P has been implicated in
fibromyalgia), to lack of counterregulation by endorphins, or
excitement of the thalamus (damage to the thalamus can produce
chronic burning pain). The increase in cytokine production (notably
alpha interferon) that accompanies CFIDS further complicates matters
be cause interferon binds to opioid receptors, making it more
difficult for endorphins to block pain.
The principal areas in which chronic or
recurring pain is experienced in CFIDS are muscles, joints, head, and
digestive system organs (see specific discussions for additional
information).
TREATMENT TIPS
Pain is such an essential and primeval
part of our physiologic and emo tional makeup that it is literally
impossible to ignore. Chronic pain is incapacitating and may lead to
the feeling that life is no longer worth living. Therefore, treatment
of pain should not be neglected.
• Pharmaceutical pain treatments
usually recommended for people with CFIDS include nonsteroidal
anti-inflammatory drugs (NSAIDs), acetaminophen (Tylenol), Ultram,
and narcotic agents. A number of people have also reported pain
relief with use of antidepressant drugs, calcium channel blockers,
nitroglycerin, Diamox, and Vistaril.
• Supplements that have been reported
helpful in controlling pain in CFIDS include malic acid, magnesium,
and evening primrose oil.
• Manual techniques for relieving
pain include gentle massage, chiropractic, transcutaneous electrical
nerve stimulation (TENS), low level laser therapy, and acupuncture.
• Effective mind-body techniques that
alleviate neurologic pain include hypnosis, meditation and relaxation
techniques, and biofeedback.
An interesting observation for
protracted pain was made by a former marathon runner with CFIDS who
experienced relentless, severe pain. A single shot of Demerol, given
in the context of a medical procedure, relieved her pain for 8
months. She believes that the drug broke the neurologic cycle of
pain. When strong measures are indicated, this type of treatment may
be worth consideration.
SEE
• Digestive Disturbances, Headaches,
Joint Pain, Muscle Problems.
• Chapter 4: Antidepressant Drugs,
Calcium Channel Blockers, Diamox, Nitroglycerin, Pain Relievers.
• Chapter 5: Essential Fatty Acids,
Malic Acid, Minerals (magnesium).
• Chapter 6: Acupuncture,
Biofeedback, Chiropractic, Hypnosis, Massage, TENS.
• Chapter 7.
PREMENSTRUAL SYNDROME
Premenstrual syndrome (PMS) is a common
hormonal disturbance that affects 70% to 90% of women in the United
States at one time or another during their reproductive lives,
according to Harvard professor and gynecologist Dr. Joseph Mortola.
However, only 40% of women with PMS experience monthly symptoms. PMS
can produce a plethora of symptoms, including weight gain, backache,
acne, breast tenderness, sore throat, joint pain, swollen ankles,
insomnia, cravings for sweets and starches, headache, irritability,
anxiety, fatigue, lethargy, depression, and cystitis, among others.
In some women, a few of these symptoms may predomi nate. For example,
in some women PMS is manifested as profound depression or outbursts
of temper. Others experience weight gain, breast pain, and edema
primarily. Although PMS may constitute nothing more than minor
aggravation for some, in about 10% of the women who experience PMS,
symptoms can be overwhelming, necessitating treatment of some kind.
In the CFIDS population this percentage may be higher. Many women
with CFIDS report either new onset of PMS or a sudden worsening of
symptoms. In addition, a number of women with CFIDS bear a double
burden because they not only experience PMS symptoms but an
exacerbation of CFIDS symptoms during this time as well.
There are three main patterns typical
of PMS: (1) symptoms appear at ovulation (about 14 days before
menstruation) and do not diminish until the end of menstruation; (2)
symptoms appear at ovulation, then ease, only to reappear a few days
before menstruation; and (3) symptoms appear a few days before
menstruation and ease at onset. In all cases, the time after
menstruation and before ovulation brings relief. For women with the
first pattern this relief may occur for a scant week. PMS is not
limited to one or another of these patterns, and women may experience
several, depending on the severity of the illness.
PMS is generally attributed to an
imbalance in the hormones responsible for the onset of the luteal
(post-ovulation) phase of the menstrual cycle. The delicate
orchestration of the hormones produced by the hypothalamus, pituitary
gland, and ovaries enables the complex processes of fertility that
occur at ovulation.
At ovulation, a woman experiences a surge of luteinizing hormone (LH) from the pituitary gland, which signals an egg to make its journey from the fallopian tube to the uterus. At that point, the two primary female hormones, estrogen and progesterone, are released, signaling the pituitary to stop producing luteinizing hormone. Levels of these hormones remain high until just before the onset of menstruation, when their sudden drop allows the lining of the uterus to slough off and menstruation begins. In some women the levels of hormones responsible for the processes involved in ovulation and menstruation do not operate in concert. As noted earlier by Dr. Leon Israel (Journal of the American Medical Association, 1938) and more recently by Dr. Katherine Dalton, many women who experience the myriad symptoms associated with PMS have an inadequate amount of progesterone during the luteal phase. They believe the overabundance of estrogen in relation to progesterone causes PMS. However, hormonal deficiencies may not be the only precipitating factor. Sensitivity to some hormones, even in normal amounts, can cause symptoms in some women. And, it is important to remember that the endocrine hormones have effects on the immune system as well.
At ovulation, a woman experiences a surge of luteinizing hormone (LH) from the pituitary gland, which signals an egg to make its journey from the fallopian tube to the uterus. At that point, the two primary female hormones, estrogen and progesterone, are released, signaling the pituitary to stop producing luteinizing hormone. Levels of these hormones remain high until just before the onset of menstruation, when their sudden drop allows the lining of the uterus to slough off and menstruation begins. In some women the levels of hormones responsible for the processes involved in ovulation and menstruation do not operate in concert. As noted earlier by Dr. Leon Israel (Journal of the American Medical Association, 1938) and more recently by Dr. Katherine Dalton, many women who experience the myriad symptoms associated with PMS have an inadequate amount of progesterone during the luteal phase. They believe the overabundance of estrogen in relation to progesterone causes PMS. However, hormonal deficiencies may not be the only precipitating factor. Sensitivity to some hormones, even in normal amounts, can cause symptoms in some women. And, it is important to remember that the endocrine hormones have effects on the immune system as well.
Estrogen receptors have been found in
both animal and human thymus tissue, indicating a direct relationship
between the immune system and the female sex hormone. Indeed, in a
number of studies, estrogen generally depressed cell-mediated
immunity (T cell function), even while elevating antibody responses
to some antigens. This means allergic responses increase in the
luteal phase, as cell-mediated immunity decreases.
Estrogen also reduces natural killer cell activity, aids in the secretion of interleukin-1 and interleukin-6, and can influence the action of CD8 antigen, or T suppressor cells. These, in turn, have direct effects on hypothalamic and nervous system function. It is interesting that estrogen seems to be related to many of the prominent immune system abnormalities found in CFIDS.
Estrogen also reduces natural killer cell activity, aids in the secretion of interleukin-1 and interleukin-6, and can influence the action of CD8 antigen, or T suppressor cells. These, in turn, have direct effects on hypothalamic and nervous system function. It is interesting that estrogen seems to be related to many of the prominent immune system abnormalities found in CFIDS.
In PMS, like CFIDS, the complex
interaction between the immune, endocrine, and nervous systems has
gone awry. In the light of these findings, it should not be
surprising that autoimmune diseases predominate in women.
TREATMENT TIPS
PMS treatment varies according to the
type and severity of symptoms.
- Vitamin supplementation is widely used for PMS in which depression and irritability predominate. Because vitamin B deficiency can cause overproduction of estrogen, supplementation with vitamin B complex accompanied by an additional dose of vitamin B6 (pyridoxine) may be useful. Pyridoxine is usually administered in doses smaller than 100 mg to avert peripheral nerve injury (characterized by tingling in the extremities). The P5P form is the most easily absorbed. Vitamin A is reputed to be helpful for PMS-related agitation and insomnia, but as of yet no studies support these claims. Optivite, a supplement developed especially for women with PMS, is available in health food stores.
- Small doses of Prozac taken a few days before menstruation have been reported to ease PMS-related depression.
- Magnesium may be useful for alleviating mood swings, muscle aches, nervous tension, bloating, and breast tenderness. Dr. Guy Abraham and associates have directed studies in Los Angeles that show that women with PMS have lower levels of magnesium than those who do not. Whole grains, green leafy vegetables, legumes, seeds, shellfish, and mangoes all have high amounts of magnesium. Incidentally, so does chocolate, which may explain why so many women with PMS crave chocolate. Magnesium supplements of up to 360 mg can be taken.
- For sweet and carbohydrate cravings, edema, and hypoglycemia-type symptoms, a modified hypoglycemic diet seems helpful. Dr. Ronald Norris, senior consultant to the PMS Program, Inc., in Chapel Hill, North Carolina, recommends eating six small meals a day and limit ing total protein intake to 20% of total daily calories. He also recommends increasing complex carbohydrates, eliminating sugar and refined carbohydrates, and reducing salt.
- Increasing intake of linoleic acid (found in safflower oil, evening primrose oil, borage oil, and linseed oil) can help reduce edema, cravings for sweets, and blood sugar-related problems. Results are fairly rapid (1 to 3 months.
- Cutting back on salt and drinking diuretic herbal teas (cornsilk, for example) can help relieve edema.
For severe PMS, Dr. Norris recommends a
direct hormonal approach. He administers progesterone to women in
whom deficiency of this hormone is implicated. He cautions that
progesterone must be administered in its pure form (identical to the
progesterone produced naturally in the body) to avoid side effects.
The cream Progest (Transitions for Health; 800-888-6814) is also used
by some alternative health care practitioners to the same end.
Progest includes among its ingredients Mexican wild yam, a plant that
contains a naturally occurring progesterone. Application of the
cream, starting at ovulation, seems to help some women with PMS
symptoms. Most alternative health care practitioners recommend taking
evening prim rose oil along with using the cream.
The Chinese herb Dong Quai is reputed
to have a positive effect in female hormone balance.
Antihistamines seem to alleviate some
PMS symptoms in women who are prone to allergies. It could be that,
because allergies exacerbate PMS, antihistamines act to reduce the
compounding effects of histamine on related PMS symptoms.
Last, but not least, women with PMS
should keep a calendar of their cycle. From ovulation to menstruation
they are more susceptible to allergic reactions, less tolerant of
stress, and much less capable of handling emotional upset. The second
half of the cycle is not the optimal time to schedule stressful
meetings, try new treatments, or make major changes in a
relationship. An awareness of when PMS occurs makes it possible to at
least avoid known pitfalls.
FURTHER READING
- Lauersen, Niels H, and Stukane, Eileen. PMS and You: What It Is, How to Recognize It, and How to Overcome It. New York: Simon & Schuster, 1983.
- Norris, Ronald V, with Sullivan, Colleen. PMS/Premenstrual Syndrome. New York: Rawson Associates, 1983.
SEE
• Chapter 4: Antidepressant Drugs,
Antihistamines.
• Chapter 5: Essential Fatty Acids,
Herbs, Minerals, Vitamins.
• Chapter 6: Acupuncture.
SECONDARY INFECTIONS
Increased susceptibility to secondary
infections is a problem for a significant proportion of the CFIDS
population. (About a third of CFIDS pa tients, however, report that
they "never catch anything.") Some people find that during
flu season they inevitably contract whatever "bug" is going
around. In addition to catching the seasonal varieties of colds and
flu, they also are more susceptible to other kinds of infections,
such as upper respiratory tract or urinary tract infections, topical
fungal infections, and recurring shingles. As if to add insult to
injury, all of these infections last longer, occur more frequently,
and, worst of all, may spark CFIDS relapses, usually concurrently or
just after the initial infection. This is true even in cases in which
prior immunity has been established. Different people tend to have
different sensitivities. One may be plagued with recurring upper
respiratory tract infections (particularly common in children) and
another may have frequent bladder infections. Many infections seem to
affect historically weak areas, that is, areas that have in the past
been prone to infection or injury. Former smokers often develop
respiratory tract infections, those with a history of allergies have
an inordinate number of sinus infections, and those who have had many
bladder problems may develop interstitial cystitis. The primary cause
of recurring infections seems to be linked to immune system
dysregulation.
Researchers in this area agree that
people with CFIDS suffer from a variety of immune system
malfunctions. Most of the immune system testing that has been done
over the past decade has revealed a number of immune system
abnormalities, including low numbers of natural killer cells, excess
cytokine production (alpha interferon, interleukins, and tumor
necrosis factor), and lowered cell-mediated immunity. Unlike many
other immune-related ailments, however, CFIDS does not seem to affect
the immune system consistently. Dr. James McCoy, cancer and CFIDS
researcher in Baton Rouge, Louisiana, has found that CFIDS patients
tend to have fluctuating B and T cell proliferation rates; that is,
immune system cells tend to multiply either faster or slower than
normal (this type of measurement would relate to the actual function
of the immune system more than to mere cell count). For example, B
cells may replicate at an abnormally high rate during one stage of
the illness, while T cells do not. The converse may be true at a
different stage. It is not only possible, but likely, that a per son
with CFIDS will have several immune system changes over the course of
the illness, at times with symptoms associated with lowered immunity
(increased susceptibility to flu) and at other times with symptoms
associated with a heightened immune system response (CFIDS Chronicle,
Fall 1993).
Regardless of the specific immune
system abnormalities a person may undergo at any given time, certain
problems tend to occur repeatedly in the CFIDS population as a whole.
VIRAL INFECTIONS
Frequent occurrence of colds, flu, and
upper respiratory tract infec tions is related to immune system
dysregulation and, as a consequence, these illnesses do not respond
well to over-the-counter remedies (which, in any case, are not
designed to alter the course of an illness). People with recurring
viral infections report that injections of gamma globulin and
Kutapressin have helped lessen the frequency and severity of these
infections. People who have been exposed to measles or chickenpox for
the first time, however, must work with their doctor to check the
progress of the disease before it gets fully under way. Acyclovir
taken within 72 hours of the first sign of chickenpox can check
development of the disease. Large doses of vitamin A taken within 24
hours of onset also help lessen the severity of measles, flu, and
other infectious viral diseases.
TREATMENT TIPS
A first course of action is to avoid
situations or circumstances that may lead to greater risk for
infection. For those who catch flu and colds, it is wise to avoid
exposure to people who are ill, young children, crowded, confined
areas (airplanes, movie houses), and other environments that might
lead to greater exposure to germs. Because most colds are spread by
hand-to-mouth contact, keeping hands clean (soap-and-water is
sufficient) also reduces the risk of contagion. Sambucol, an herbal
remedy, is reported to be effective against flu and colds. It can be
purchased in liquid form or as lozenges. Unlike many pharmaceutical
products, Sambucol is safe for use in children. Other herbal remedies
include echinacea, goldenseal, and the antiviral agent St. John's
wort.
Some people find that high doses of vitamin C are helpful to limit the duration of a cold. The homeopathic remedy oscillococcinum has also been reported as helpful. For top ical infections, the best course of action is to keep the affected area clean and dry and apply an over-the-counter antifungal ointment (such as Tinactin) once a day for 14 days. Tea tree oil, available in most health food stores, is also an effective topical antifungal agent. People with other kinds of infections should avoid anything that exacerbates symptoms and follow the treatment advice for the particular problem (see Candida, Oral Problems, Shingles, Sinusitis, Urinary Tract Problems).
Some people find that high doses of vitamin C are helpful to limit the duration of a cold. The homeopathic remedy oscillococcinum has also been reported as helpful. For top ical infections, the best course of action is to keep the affected area clean and dry and apply an over-the-counter antifungal ointment (such as Tinactin) once a day for 14 days. Tea tree oil, available in most health food stores, is also an effective topical antifungal agent. People with other kinds of infections should avoid anything that exacerbates symptoms and follow the treatment advice for the particular problem (see Candida, Oral Problems, Shingles, Sinusitis, Urinary Tract Problems).
SEE
• Chapter 4: Antiviral Agents, Gamma
Globulin, Kutapressin.
• Chapter 5: Herbs, Minerals (zinc),
Vitamins.
SEIZURES AND SEIZURE ACTIVITY
Although the incidence of seizures is
rare in CFIDS, seizure-like episodes, especially during the first few
months after onset, are not uncom mon. These seizures do not usually
involve loss of consciousness, however, and so may not be recognized.
Often the seizure is described as starting with a "wave" of
bad feeling accompanied by feelings of intense discomfort or fear.
This last component may lead doctors to misdiagnose the patient's
experience as a "panic attack."
Seizures and seizure activity are
characterized by a sudden burst of electrical activity in the brain.
The discharge can occur in both hemispheres, producing a generalized
seizure (grand mal) with myoclonus (jerks), or localized in one area
of the brain, producing a partial (focal) seizure. Seizures generally
occur when the brain is either fully active (pro ducing beta waves)
or in a state of light sleep (producing theta waves).
The reasons for the sudden neuronal
discharge are not entirely understood. However, many neurologists
believe that seizures are caused by an imbalance in neurotransmitter
activity. Neurotransmitters deliver only two types of message: fire
or cease fire. The neuroexcitatory chemicals induce the neuron to
release its electrical charge and the inhibitory chemicals prevent
the neuron from firing. Seizures can be attributed to an im balance
in the two types of neurotransmitters leading to excess nervous
system activity.
Dr. Paul Cheney has presented a
hypothesis concerning neural activity in CFIDS. He believes people
with CFIDS have excitatory neurotoxicity, or increased neuronal
firing brought about by irritation of the nerve cells in the brain
(due, in this case, to increased amounts of the cytokine alpha
interferon). Dr. Cheney proposes that the overstimulation is caused
by the predominance of the primary neuroexcitatory chemical
N-methyl-D-aspartate (NMDA), which is normally in balance with the
primary neuroinhibitor GABA (gamma-aminobutyric acid) (CFIDS
Chronicle, Spring 1994; CFIDS Chronicle, Spring 1995). The imbalance
can create many of the brain disturbances that produce some of the
most debilitating symptoms of CFIDS, such as constant pain, insomnia,
intolerance to stimuli of all kinds, and exhaustion. Given this
explanation of how CFIDS affects the nervous system, it is easy to
see how seizures might occur as part of the illness.
In accord with Dr. Cheney's hypothesis,
seizures should be expected to be localized to one area of the brain
(alpha interferon seems to primarily affect the limbic system). True
to expectation, the type of seizure experienced by most people with
CFIDS is partial, involving neuronal discharge in the limbic system
or neighboring temporal lobes. However, some sei zures do not fall
into this category but seem to involve other parts of the brain. It
is worth mentioning that even though a patient may experience
seizure-like symptoms, electroencephalographic (EEC) findings are
almost invariably normal. An EEC tracing shows only electrical
signals from the outer portion of the cerebral cortex. Any unusual
electrical activity in deep structures of the brain (such as the
hypothalamus) is not recorded (as is the case with many types of
epilepsy that demonstrate normal EEC findings).
ABSENCE SEIZURES (PETIT MAL)
Absence epilepsy, during which a person
may be conscious but not aware of his or her actions, is common in
CFIDS. Absence seizures generally do not last long, from a few
seconds to a few minutes at most. In periods of absence, a person may
continue with an activity (such as driving) as though partially
asleep. One woman remarked that she often found herself in her
driveway at home without the slightest recollection of how she got
there. In general, absence seizures involve a lack of coordination
between the part of the brain that controls awareness and the cortex.
SIMPLE PARTIAL SEIZURES
Simple partial seizures do not involve
loss of consciousness, but produce altered sensations, perception,
mood, or body function. Parietal lobe disturbances can be experienced
as tingling in the face and extremities, jerking or stiffening in one
area of the body, or feeling odd, crawling sensations. One can also
see flashing lights or other visual disturbances or hear things
(hallucinations). Changes in perception of time and memory result
from temporal lobe imbalances.
"SENSORY STORMS"
Dr. Luis Leon-Sotomayor, the
cardiologist who documented the 1965 CFIDS epidemic in Galveston,
Texas, described a type of neurologic dysfunction that he called a
"sensory storm." These storms affect the autonomic nervous
system (regulated by the hypothalamus). A person experiencing a storm
may first see an aura or sense that something very bad is about to
happen. Storms produce sweating, pallor or flushing, elevated blood
pressure, slowed respiratory rate, tachycardia, dizziness, and the
feeling that one is about to lose consciousness. These autonomic
storms are terrifying, but the effects generally pass within an hour.
After such an experience, a person may feel lingering tiredness or
malaise. Dr. Byron Hyde has observed that storms tend to occur
spontaneously during the first few weeks of CFIDS (although they can
repeat at specific times of day), then slowly pass as the illness
progresses. A milder version may be ex perienced during relapses and
after periods of stress.
GRAND MAL SEIZURES
A small percentage of people with CFIDS
experience grand mal seizures. The generalized electrical discharge
characteristic of the grand mal seizure generates both motor
disturbances and loss of consciousness. A person who experiences a
grand mal seizure may experience a warning sign or feeling (aura)—a
bad smell, a peculiar physical sensation, or a strong emotion such as
fear. It is essential for anyone who has experienced a grand mal
seizure to consult a neurologist.
TREATMENT TIPS
Two medications sometimes prescribed to
treat symptoms of CFIDS, Klonopin and Diamox, have an effect on
partial seizures involving myoclonus.
Nutritional supplements that aid in
controlling seizures include manganese, which helps to correct the
biochemical imbalance that results from seizures; taurine, an amino
acid that helps slow nerve impulses; vitamin B6, important for
nervous system regulation; and zinc, magnesium, and GABA in small
amounts.
People who have warnings of impending
seizures or seizure-like episodes, either in the form of a rapidly
escalating sense of urgency, surges of strange sensations, intense
fear or rage, "spaciness," or any kind of sudden perceptual
disturbance (such as a strong disagreeable smell), can sometimes
prevent their full manifestation by immediately withdrawing from all
sources of stimulation and entering into a relaxed state through
meditation, relaxation exercises, or self-hypnosis techniques. This
has the effect of changing the brain wave frequency to alpha waves.
Once the electrical frequency of the brain waves has shifted, the
seizure often is prevented (seizures occur during beta or theta wave
frequencies). This technique is effective for seizures with obvious
triggers (flickering lights, television, emotional upsets, and excess
stimulation of any kind).
Avoiding stressors is essential for
people with any kind of seizure. People who have experienced seizures
must also be meticulous about avoiding the neurotoxins found in
pesticides and other chemical products because of their potential
seizure-inducing capacity. Prescription drug package inserts should
also be examined for side effects and cautions. Wellbutrin, a
medication sometimes prescribed to treat symptoms of CFIDS, is
contraindicated in people who experience seizure activity.
FURTHER READING
Hyde, Byron M, and Jain, Anil. Clinical
Observations of Central Nervous System Dysfunction in
Post-Infectious, Acute Onset ME/CFS. In Hyde, Byron M, ed. The
Clinical and Scientific Basis of ME/CFS. Ottawa, Ontario: Nightingale
Research Foundation, 1992.
SEE
• Chapter 4: Antidepressant Drugs,
Benzodiazepines (Klonopin), Diamox.
• Chapter 5: Amino Acids (taurine),
Butyric Acid, Minerals, Vitamins.
• Chapter 6: Biofeedback, Meditation.
• Chapter 7.
SHINGLES
A number of people with CFIDS suffer
from recurring shingles. Shingles is an infection from the
herpesvirus, varicella zoster, the same virus responsible for
chickenpox. After a person has chickenpox, the virus lies dormant and
can be reactivated by another illness or immune system depression
(radiation, cancer therapies, steroid treatments, immune sys tem
illnesses). The reactivated virus attacks a nerve root in the brain
or spinal column and follows the course of that nerve outward to the
skin, where chickenpox-like blisters erupt. The first sign of
shingles can be an itching or stinging sensation on the skin,
followed by intensification of pain, and finally a blistery rash. The
rash can appear on any part of the body and is characteristically
one-sided (left or right). The effects of shingles can be minimized
if treated within the first 72 hours. A person who feels pain,
itching, or tingling in a specific area that is followed by a
one -sided blistery rash should see a doctor immediately.
TREATMENT TIPS
The treatment of choice for shingles is
acyclovir (Zovirax), which, if taken early enough, can alleviate the
worst symptoms. Famvir is used for the same purpose. If the pain
persists after the initial infection (longer than a month), the
resulting condition is known as postherpetic neuralgia. The sharp
electric pain caused by postherpetic neuralgia is difficult to treat,
but in some cases responds to antidepressant drugs. Zostrix, which
can be purchased over the counter in cream form, is also now
available for postherpetic neuralgia. Antihistamines may relieve
itching. For numbness, Thomas Thomsen, author of Shingles, recommends
a vibrator. This advice has a sound basis in fact because the sense
of touch operates largely through vibration. To heal blisters,
oatmeal, baking soda, corn starch, or cold compresses can be used.
Tea tree oil can help prevent infection of healing blisters. Other
treatments include Kutapressin, which can curtail outbreaks of
shingles; lysine, an amino acid that halts herpesvirus replication;
and colloidal silver, a natural antibiotic agent.
SINUSITIS
The sinuses are air-filled cavities
located behind and around the nose and eyes. Each sinus is connected
to the nasal passage by a thin duct. These ducts can be easily
blocked, making drainage difficult and eventually leading to
irritation, inflammation, and infection. Air pollution, cigarette
smoke, dry or cold air, dental problems, bacteria, and viruses can
all con tribute to sinus problems. It is noteworthy that sinus
problems were rated the most common chronic disease in the United
States in 1981 by the National Center of Health Statistics—perhaps
a testimony to growing en vironmental pollution.
Inflamed or infected sinuses can cause
a wide range of symptoms, including headache, congestion, stuffiness,
dizziness, nausea, tender cervical lymph nodes, sore throat, a
feeling of facial pressure, "heavy head," and fa tigue.
Sinus pain can also mimic dental pain. Of these symptoms, the most
frequently addressed is sinus headache. The sinus headache differs
from the pressure or vascular headache in that it is felt mainly
around the face and eyes. It can last for hours or even days. Sinus
headaches become sharply worse with sudden increases in pressure to
the region; the simple motion of bending over, air travel, a long car
trip, or a change in barometric pressure can all spark intense face
and head pain. The extraordinary fa tigue associated with sinus
problems ("nasal fatigue") has been well documented over
the course of the century, receiving mention from a number of
physicians from the late 1800s to the present.
Patients with CFIDS seem to be
particularly vulnerable to sinus prob lems. The large proportion
(some say as high as 75%) of allergy-related problems alone in this
population seem to implicate the sinuses as a major source of trouble
for CFIDS patients. Even those who do not show overt signs of allergy
can have multiple sinus-related problems (headaches, increased
chemical sensitivities). Some of these problems may be related to
impaired immune system function, which for many is the defining
feature of CFIDS. Indeed, as Dr. Alexander Chester of Georgetown
Medical Center has pointed out, sinusitis may be a precipitating
factor in some cases of CFIDS. Dr. Chester has proposed that, as in a
similar case in which an ap parent outbreak of multiple sclerosis
followed sinusitis, viral diseases may be activated by a nasal
mechanism. He suggests that in cases for which there are obvious
signs of nasal involvement (acute onset following an upper
respiratory tract infection, allergies, fluctuation of symptoms with
weather changes), treating a possible underlying nasal disorder may
produce substantial relief of headache, sleep disorder, mood swings,
and fatigue.
TREATMENT TIPS
Although many cases of sinusitis are
not bacterial in origin, and can be resolved with home treatments,
sinusitis caused by bacterial infections can have serious
consequences. Yellow or dark nasal discharge, severe sinus pain, or
fever require a visit to the doctor. Bacterial infections are treated
with antibiotic drugs.
When taking antibiotics, remember to supplement with acidophilus or some other probiotic (see Chapter 5) to minimize potential side effects (the most problematic of which is Candida over growth). For chronic or persistent nonbacterial sinusitis, the following tips and suggestions may be useful:
Saline nasal sprays are helpful in keeping nasal passages moist. They wash out mucus, dust, viruses, bacteria, and other sinus irritants and help reduce swelling. (Dry nasal passages are much more susceptible to infections, irritation, and subsequent inflammation.) Small, inex pensive bottles of premixed solution (Ayr, SalineX, Ocean Spray) are available in any pharmacy. Spraying may be repeated as often as needed throughout the day.
When taking antibiotics, remember to supplement with acidophilus or some other probiotic (see Chapter 5) to minimize potential side effects (the most problematic of which is Candida over growth). For chronic or persistent nonbacterial sinusitis, the following tips and suggestions may be useful:
Saline nasal sprays are helpful in keeping nasal passages moist. They wash out mucus, dust, viruses, bacteria, and other sinus irritants and help reduce swelling. (Dry nasal passages are much more susceptible to infections, irritation, and subsequent inflammation.) Small, inex pensive bottles of premixed solution (Ayr, SalineX, Ocean Spray) are available in any pharmacy. Spraying may be repeated as often as needed throughout the day.
Nasal irrigation is helpful for more
severe cases and, unlike some other treatments, has the benefit of
being both inexpensive and completely without side effects. To make
the irrigating solution, add 1/4 to 1/2 teaspoon of salt and a tiny
pinch of baking soda to 1 cup of lukewarm water. Completely fill a
large all-rubber ear syringe (available in most pharmacies). Leaning
forward over the sink, pinch one nostril closed, insert the syringe
into the open nostril, and gently squeeze the bulb, swishing the
solution around the inside of the nose. Repeat the procedure for each
nostril until you have used the entire cup of solution. (The solution
may run out of both nostrils or the mouth. Although this may be a bit
messy, the relief provided by irri gation is well worth it.)
Moist, warm air often alleviates
sinusitis. Even standing in a shower for 5 minutes or breathing steam
from a pot of boiling water can be helpful. Vaporizers and steam
inhalers can also be purchased. The CFIDS and Fibromyalgia Health
Resource (800-366-6056) sells a relatively inexpensive compact steam
inhaler that is convenient for use in the home or when traveling. A
contoured face mask allows direct flow of temperature-controlled
steam. Eucalyptus, peppermint, or clove essential oil (one drop is
sufficient) can be added to the water to help clear sinuses. These
oils (available at most health food stores) can also be rubbed around
the nostrils.
Proper hydration is important so
remember to drink lots of pure water.
Avoid alcohol and milk, as these tend
to aggravate sinus problems. Milk thickens mucous discharge, making
it more difficult to keep the nasal passages clear.
Supplements and herbs normally
recommended for sinus problems include garlic (to help fight Candida
and bacterial infection), vitamin A (to help repair mucous
membranes), vitamin C and zinc (immune system stimulants), echinacea
(an herb that acts as an immune system stimulant), and goldenseal
root (available as a powder to be applied topically. Mix 1/2
teaspoonful with a drop or two of water to form a paste, spread
lightly over the sinus area before bed, and wash off in the morning.
Place a cloth over your pillow to prevent staining.
Apply for up to three nights.)
Goldenseal is a powerful antimicrobial agent and should not be taken
internally, even though it is common practice, because of potential
harmful effects on the central nervous system.
Sinusan, a homeopathic remedy that has
been helpful for many people, can be purchased at most health food
stores. Nonsteroidal anti-inflammatory drugs (NSAIDs) (aspirin and
others), as opposed to simple analgesics (such as Tylenol), can be
useful to reduce inflammation and pain.
Patients with allergies usually benefit
from prescription nasal sprays (Nasalcrom, Nasalcort). Although these
contain cortisone, the fact that they are applied topically lowers
the risk of immune system suppression normally associated with
extended use of cortisone treatments.
People with and without allergies
should be careful to avoid potential sinus irritants and allergy
triggers (air contaminants, sprays, fumes, dust, molds, pollen,
dander). An air filter for the bedroom can be a worthwhile investment
if sinus problems are severe. Air travel is especially problematic
for people with sinus problems. Most doctors, in fact, recommend
against air travel if an acute infection is present. For short-term
relief, a decongestant spray such as Afrin may be useful. These
sprays help open nasal passages, but should not be used for more than
a day or two because they can become addictive. Excessive drying of
the nasal passages also leads to greater risk of infection. Saline
sprays can also mitigate some of the effects of poor air quality and
airplane cabin pressure changes.
FURTHER READING
- Chester, Alexander. Chronic Fatigue of Nasal Origin: Possible Confusion With Chronic Fatigue Syndrome. In Hyde, Byron M, ed. The Clinical and Scientific Basis of ME/CFS. Ottawa, Ontario: Nightingale Research Foundation, 1992.
- Ivker, Robert S. Sinus Survival: The Holistic Medical Treatment for Allergies, Asthma, Bronchitis, Colds, and Sinusitis. New York: Putnam Publishing Group, 1995.
SEE
• Allergies, Candida, Secondary
Infections.
• Chapter 4: Antihistamines.
• Chapter 5: Herbs, Probiotics,
Vitamins.
• Chapter 6: Aroma Therapy,
Homeopathy.
SKIN, HAIR, AND NAIL PROBLEMS
Skin problems are fairly common in
CFIDS. Most are benign and self-limiting. Often patients don't even
mention them to their doctors.
PALLOR. Pallor, although one of the few
objective physical signs of CFIDS, is the symptom least observed by
patients themselves. People with CFIDS are ghostly pale during the
initial phase and during relapses. The whiteness of the skin is
striking and can be perceived by anyone. Pallor is due to slowed
blood flow.
RASHES. The rash most typical of CFIDS
is lace-like and covers the face and chest. Some doctors have
observed that it resembles the rash characteristic of lupus. Rashes
are often experienced by those who are prone to allergies and can
represent an allergic reaction to any substance consumed (urticaria
or "hives") or touched (contact dermatitis). Some likely
sources of contact dermatitis include acid foods (oranges, tomatoes),
plant oils, permanent press bedding (treated with formaldehyde), and
synthetic clothes (chemical sensitivity). Rashes can also appear
after ingestion of certain medications. In his book, Chronic Fatigue
Syndrome: A Victim's Guide to Understanding, Treating, and Coping
With This Debilitating Illness, Gregg Fisher describes breaking out
into hives after taking penicillin (which he explains is a classic
reaction in people with infectious mononucleosis) and abdominal welts
after taking acyclovir. Most skin rashes can be resolved by avoiding
irritants and allergens.
DRY, PEELING SKIN. Dry skin results
from loss of moisture in the outer layers of the skin. Dryness can be
caused by dry air, harsh soaps, sun, fuzzy or woolen clothing,
irritants (such as detergents not rinsed completely from clothes and
sheets), and systemic conditions. Dry skin may also result from low
thyroid function, which is not unusual in CFIDS. Paradoxically, a
number of people say they have simultaneously dry and oily skin.
However, as dry skin is not due to oil loss but to lack of water in
the skin, it is quite possible to have an overproduction of oil due
to hormonal changes while experiencing dryness due to malfunction in
dermal moisture regulation.
When people with CFIDS experience
endocrine swings (irregular hormonal output), alternation between dry
and oily skin results. Some people also notice that their skin peels
(especially on the face) as though they have sunburn, even though
they are spending all of their time indoors. Peeling skin can be a
sign of zinc or vitamin B6 deficiency, both of which are common in
CFIDS. If low thyroid production is determined through appropriate
endocrine tests, dry skin will improve with thyroid support. If
nutritional deficiencies are suspected, skin will improve with
appropriate dietary supplements, particularly vitamin B, zinc, and
vitamin A. Topical treatments such as commercial lotions and creams
are best avoided in patients who are prone to acne or hives because
they can clog pores and may cause allergic reactions. The best
remedies are to avoid harsh soaps, such as soaps with deodorants, and
use a pure bath oil to aid the skin in retaining moisture. Pure soaps
and bath oils that do not contain a lot of chemical additives can be
found in health food stores. Dry brushing of the skin with a soft,
natural bristle brush, reputed to in vigorate the skin, has helped
some people with CFIDS.
ACNE. Women with CFIDS are particularly
prone to acne (especially around the hairline, back of the neck, and
chin) before menstruation. These pimples usually disappear with the
onset of menstruation. Endocrine fluctuations resulting from
hypothalamus dysregulation are most likely the cause of these
periodic breakouts. Acne can also be exacerbated by stress because
stress hormones stimulate the production of male-type sex hormones,
which in turn leads to overproduction of skin oil. Certain
medications, including low-dose birth control pills, cortisone,
antiepilepsy medications, and vitamin B12, can exacerbate acne as
well. Good diet, vitamin supplementation, thorough cleaning with
mild, easily rinsed cleansers, avoidance of creams, makeup, and skin
irritants, and adequate intake of water all help reduce acne.
Medication is seldom needed because acne tends to be transient.
HYPERSENSITIVITY. Many people report
that they cannot stand to be touched in some places or that certain
textures, types of clothing, or temperatures bother them. Like all
the other senses, touch becomes hyperacute in CFIDS. Even slight
pressure can be quite uncomfortable. Sensitivity to heat and cold
also increases with CFIDS. People with allergic responses will be
hypersensitive because of the effects of histamine (histamine
sensitizes nerve endings). Antihistamines may help reduce skin
sensitivity in these cases.
SPONTANEOUS BRUISING. Some people wake
up in the morning to discover they have one or more dark bruises
unrelated to previous injury. Sometimes bruising is related to
potassium depletion, especially if the bruises appear after exposure
to hot weather or periods of adrenal stress. In CFIDS it could be
related to a number of factors, including altered red blood cell
morphology, potassium depletion, and vitamin deficiencies. The
possibility of dehydration should also be considered. If present,
liquids should be increased. Water or juices can be blended with a
little salt, sugar, and baking soda to increase retention.
PARESTHESIAS. Tingling, numbness,
itching, prickling, crawling, and stinging sensations on the skin are
common throughout CFIDS. Some paresthesias are related to nervous
system activity, others are not. Spontaneous hyperventilation, which
sometimes occurs in the acute stage, produces tingling in the neck
and around the face. Itching can be the result of an allergic
reaction. Dr. Felix Sulman has observed that stinging sensations (as
though from an insect) and prickling can be produced by serotonin, an
irritant that can produce skin responses similar to those of
histamine. Although there is no treatment for most of these
sensations, paresthesia associated with allergic reactions improves
with antihistamines.
LOSS OF FINGERPRINTS. The flattening of
fingertip ridges is part of the normal process of aging, usually
occurring in the seventh decade. In people with CFIDS, however, this
process seems to be accelerated. Dr. Philip Nelson, of Sarasota,
Florida, studied a group of 165 CFIDS patients in whom he observed
that a flattening of ridges occurred as early as the fifth decade.
Fingerprint loss seems to predominate on the left hand and usually
begins with the smallest finger. Flattening of the ridges is
generally thought to reflect depletion of collagen in the skin.
Fingerprint loss has been observed only in protracted cases.
HAIR
The chief hair problem in CFIDS is hair
loss. Normally, 50 to 120 hairs are lost each day. More than that
(more than a tablespoon of hair removed from your hairbrush) is
considered hair loss. Hair loss can be patchy (alopecia areata) or
can be manifested as general thinning. Sometimes hair loss is slight
and can go relatively unnoticed. Hair loss in CFIDS is often due to
endocrine changes (such as hypothyroidism) and is usually not
permanent. However, sudden loss of hair may be related to medications
(notably Tagamet). Consuming excessive amounts of vitamin A also can
lead to hair loss. People who are losing hair should use only mild
shampoos and discuss thyroid tests with their doctor. Vitamin B and
supplements that help increase circulation to the scalp such as CoQ10
or gingko may also be helpful.
NAILS
Nail problems in CFIDS are usually not
as dramatic as skin and hair problems. The most common are increased
brittleness, bluish nail beds, and vertical ridges. Nails are made up
of a soft protein called keratin, a substance composed largely of
sulfur (which keeps nails hard). Nails become brittle and break or
chip easily as a result of keratin deficiency or when the water
content of the nail is decreased. Both causes are implicated in
CFIDS. Longitudinal ridges have also been noted in many people with
CFIDS. Ridges running up the length of the nail are often related to
ane mia, but are also associated with vitamin A deficiency and flu.
A bluish nail bed is a sign that too little blood is being delivered to the nail. The nail depends on blood supplied by capillaries in the nail bed that give the nail its pinkish color. When the blood supply is diminished, nails turn blue and fail to grow. Dr. Alexander Gilliam noted in the 1934 CFIDS outbreak in Los Angeles that both bluish nails and slow nail growth (usually on one hand) were common. The best treatment for nails is to avoid contact with cleaners and other chemicals, keep them trimmed (soak them first to avoid chipping), and make sure nutrition is adequate. Calcium supplements will not help nails to become stronger because the nail plate contains very little calcium.
A bluish nail bed is a sign that too little blood is being delivered to the nail. The nail depends on blood supplied by capillaries in the nail bed that give the nail its pinkish color. When the blood supply is diminished, nails turn blue and fail to grow. Dr. Alexander Gilliam noted in the 1934 CFIDS outbreak in Los Angeles that both bluish nails and slow nail growth (usually on one hand) were common. The best treatment for nails is to avoid contact with cleaners and other chemicals, keep them trimmed (soak them first to avoid chipping), and make sure nutrition is adequate. Calcium supplements will not help nails to become stronger because the nail plate contains very little calcium.
SLEEP DISORDERS
Sleep disturbances are so common in
CFIDS that some doctors will not even make the diagnosis if a patient
reports having normal, restful sleep. Nearly every CFIDS patient
reports some trouble sleeping. Usually problems vary between insomnia
and excessive nonrestful sleep. Some sleep patterns are fairly
consistent. One person cannot fall asleep before 3:00 am "no
matter what." Another can't fall asleep for a few days, then
sleeps too much for a few days, then wakes up repeatedly during the
night. Every once in a while a person may be surprised by what feels
like a normal night's sleep, only to have the insomnia return with a
vengeance the fol lowing night. Although the disturbances can take
many forms, the outcome is always the same—waking up tired.
Nonrestorative sleep is a hallmark of CFIDS and is a condition that
acts as a catalyst for other symptoms. Because poor sleep exacerbates
other symptoms (pain, emotional swings, flu-like symptoms, fatigue),
it is a focal point for treatment for most CFIDS doctors.
Any chronic alteration in normal sleep
patterns is referred to as a sleep disorder. Common sleep disorders
include insomnia (inability to fall or stay asleep), malsomnia
(excessive light sleep or broken sleep), hypersomnia (excessive
sleep), excessive rapid eye movement (REM) sleep (pro longed or
hypnogogic sleep), and nightmares. Although most people experience
sleep disturbances at one time or another, whether due to illness,
pregnancy, emotional upset, or injury, relatively few have long-term
alterations of sleep patterns. When they do, underlying physiologic
causes should always be suspected. Normal sleep occurs in four
stages, each of which is characterized by a distinct brain wave
pattern. The first stage of sleep is light sleep, which is
characterized by a reduction in the alpha waves characteristic of the
waking state and an increase in theta waves (4 to 7 Hz). In the
second and third stages, wave forms gradually slow and deepen until,
by the fourth stage, the sleeper is producing more than 50% delta
waves (3 Hz or less). In a normal sleeping adult, all four stages of
sleep occur within approximately 90 minutes, followed by REM sleep,
or dreaming. The entire cycle is repeated three or four times during
the night. Each time, stage four sleep shortens and REM sleep
lengthens, which is why the deepest sleep is at the start of the
night and the most vivid dreams occur before awaking.
Most researchers agree that the sleep
disturbance in CFIDS is caused by an alteration in the normal brain
wave patterns required for deep, restful sleep. Dr. Russell Poland
has proposed that in CFIDS the normal pattern of sleep phases is
interrupted by alpha wave spikes (around 10 Hz); that is, when you
should be in deep, restoring stage four sleep, your brain waves are
acting as though you are awake (CFIDS Chronicle, Summer 1993). This
is why so many people with CFIDS do not feel refreshed no matter how
much they sleep and why others wake so often.
Another CFIDS anomaly is the presence of excess theta waves, which cause the sleeper to remain in a light sleep state. Dr. Jay Goldstein has theorized that the brain wave disturbances are the result of alterations in hypothalamic function, the thumb-sized sector of the brain that regulates sleep (CFIDS Chronicle, Fall 1991). The cause of the dysregulation may be attributable to the action of excess cytokines such as alpha interferon. Additional sources of sleep problems include pain, drops in blood pressure dips, irregular heartbeat, and sinus congestion. Decreased blood sugar levels can also cause insomnia. As blood sugar levels drop during the night, the adrenal glands release cortisol, the "fight-or-flight" hormone. The startle reaction produced by the sudden spurt of adrenal hormone awakens the sleeper and prevents a re turn to sleep until the blood sugar level is raised again.
Another CFIDS anomaly is the presence of excess theta waves, which cause the sleeper to remain in a light sleep state. Dr. Jay Goldstein has theorized that the brain wave disturbances are the result of alterations in hypothalamic function, the thumb-sized sector of the brain that regulates sleep (CFIDS Chronicle, Fall 1991). The cause of the dysregulation may be attributable to the action of excess cytokines such as alpha interferon. Additional sources of sleep problems include pain, drops in blood pressure dips, irregular heartbeat, and sinus congestion. Decreased blood sugar levels can also cause insomnia. As blood sugar levels drop during the night, the adrenal glands release cortisol, the "fight-or-flight" hormone. The startle reaction produced by the sudden spurt of adrenal hormone awakens the sleeper and prevents a re turn to sleep until the blood sugar level is raised again.
INSOMNIA OR DIFFICULTY INITIATING AND
MAINTAINING SLEEP
In the initial or acute stages of CFIDS
and during severe relapse, most people have great difficulty falling
asleep. Typically it takes several hours to fall asleep, although
some people may not sleep until close to dawn or not at all. People
may find themselves either awaking several times during the night or
waking once and not being able to go back to sleep. Common wake-up
times are between 11:00 pm and 12:00 midnight, 3:00 and 4:00 am, and
early dawn. A combination of tricyclic antidepressants and
benzodiazepines often is recommended for people who wake frequently
in the night. People who regularly cannot fall asleep until dawn may
benefit from melatonin, a pituitary hormone that regulates diurnal
cycles.
HYPERSOMNIA
Excessive sleep or the inability to
stay awake commonly occurs during the acute stage and may diminish as
the illness progresses. Hypersomnia is generally more common in
children than in adults. The hypersomniac may awaken briefly but will
fall asleep shortly thereafter, sometimes at the table or wherever he
or she has been recently engaged in activity. Hypersomnia is most
often caused by a dysfunction in the posterior hypothalamus and upper
part of the mid-brain. Prozac and other mild stimulants are often
prescribed to people who have hypersomnia.
LIGHT SLEEP
Sleep that is too light or unrefreshing
is typical of CFIDS and is proba bly due to the interference of alpha
waves during deep sleep (perhaps stemming from acetylcholine
deficiency). Alpha waves cause the sleeper to be too alert during
sleep and may cause waking by allowing too much sensory information
to be processed by the brain. Sometimes sleep may be combined with a
state of wakefulness to produce a kind of half-sleep. The feeling of
being neither asleep nor awake can be extremely uncomfortable.
DYSANIA
Dysania refers to a period lasting
between 1 and 3 hours after awakening in which a person is too
exhausted to get out of bed. These hours of "morning fog"
are typical of CFIDS and are common in all stages of the illness.
MYOCLONUS
Some people are wakened by strong
involuntary jerks (myoclonus) of the arms, legs (restless leg
syndrome), or entire body. These in turn can trigger a startle
reaction (pounding heart), making return to sleep difficult.
DREAMS AND EARLY WAKING STATES
Nightmares are common in people with
CFIDS, as are vivid, disturb ing, thematic dreams. These dreams often
awake the sleeper, leaving a per sistent feeling of discomfort that
may last well into the day. Conversely, many people also experience a
complete lack of dreams or a sense that their dreams are vague and
disjointed. This state of dreamlessness may last for months.
Sometimes a person may awaken feeling disoriented or feel semiawake
for a period of time after waking. Some people also experience a
frightening inability to move any part of their body for a few
minutes after waking, even after becoming fully conscious.
TREATMENT TIPS
A lot can be done to improve sleep.
Pharmaceutical recommendations include low doses of Klonopin, a
benzodiazepine, and Sinequan, an anti-depressant, taken together.
Klonopin is rapid-acting and helps induce sleep and Sinequan helps
maintain sleep. Many people with CFIDS-related insomnia have found
this combination helpful (although people who are sensitive to
antidepressants might want to try other treatments first). Ambien, a
sedative-hypnotic, is a new medication for insomnia that does not
affect sleep cycles, as do benzodiazepines and antidepressants.
Tylenol PM also can help induce drowsiness, especially if
fibromyalgia-type symptoms are present. Antihistamines such as
Benadryl may induce sleep (although antihistamines can also produce
the opposite effect in some people, making them feel jittery). As
always, start with a very small amount of the drug at first to check
for sensitivity.
Supplements that may be helpful include
magnesium, calcium, vitamin B complex, and melatonin. Patients have
reported that magnesium taken before bedtime acts as a muscle
relaxant, which helps them sleep. Calcium appears to have a similar
effect. Vitamin B complex also can help induce sleep, especially if
there is a deficiency, although it should be noted that those
vitamins produced from brewer's yeast can have the opposite effect in
people sensitive to yeast products. Inositol can also be taken
separately to help induce sleep, although in some people with severe
insomnia it may produce a rather light, unrefreshing sleep. People
with sleep cycle prob lems (falling asleep at dawn or sleeping only
during the day) have found that melatonin, a pineal gland hormone,
works well. Recent research also suggests that galanthamine, a
selective acetylcholinesterase inhibitor, may correct sleep
disturbance by increasing the amount of acetylcholine in the brain.
Because royal jelly contains natural acetylcholine, this nutritional
product may be helpful for some people.
Herbs that effectively induce sleep
include valerian (can be upsetting to the stomach and should be taken
with a little milk), hops, passion flower, chamomile (not for those
sensitive to ragweed), and skullcap. All can be blended in a tea or
taken singly.
Aroma therapy works well for some
people. A drop of clary sage or jas mine essential oil on a
handkerchief next to the bed produces a sedative effect.
Those who wake up because of a decrease
in blood sugar levels should eat something (milk or tea with a little
honey or cereal). They probably can get back to sleep when the blood
sugar level returns to normal. Grandma's cure for insomnia—a glass
of warm milk at bedtime—also may help some people fall asleep. Warm
milk contains high amounts of serotonin, which is why nursing babies
often doze off before they're done feeding. Carbohydrates, such as
bread or crackers, also increase the amount of serotonin in the
brain.
Salt sometimes helps restore sleep in people who experience insomnia as a result of low blood pressure.
Salt sometimes helps restore sleep in people who experience insomnia as a result of low blood pressure.
Night sweats are typical of the initial
or acute stages of CFIDS or relapse and as part of premenstrual
syndrome (PMS). Night sweats can be drenching or can involve only the
upper torso and neck. Keeping a change of nightclothes nearby can
help minimize the disruption caused by having to change clothes
during the night. Using light layers of bedclothes, which can be
easily thrown off, is also helpful.
Last, but not least, stress must be
reduced. Although CFIDS insomnia is not caused by stress, it is
certainly aggravated by it. Worrisome or exciting projects should not
be undertaken after dinner. A relaxing bath about an hour before
bedtime or some light fiction are helpful for creating a restful
state. The warm bath signals the body to cool down, which helps the
person fall asleep. The rhythmic eye movements needed to read help
signal the mind to produce slower brain waves. Watching television
should be avoided if someone is sensitive to the effects of
overstimulation. (The rapid frame changes, which force the eyes to
refocus every few seconds, are arousing and may inhibit sleep onset.)
If reading is not an option, listening to a tape may help induce
sleep (this also works for night wakings). The act of listening
changes neurotransmitter activity to induce a restful state (as
anyone who has dozed through a boring lecture can attest). A tape
recorder by the bed with a tape of soothing music or someone telling
a calming story might help someone who wakes up in the night to try
to stay calm. The more aroused and upset a person gets, the harder it
will be to fall back asleep.
Be aware that skipping a night of rest
to force the body into sleep is not a good idea. The person simply
becomes even more exhausted and finds it harder to sleep the second
night. Remember, the CFIDS sleep disorder is not caused by bad
habits. It is caused by brain disturbances. Rest is permissible
whenever the body allows it. Also, be aware that the long-term use of
tranquilizers can be disruptive of normal sleep cycles. These drugs
should be used judiciously and under the careful supervision of your
doc tor. CFIDS patients may need smaller doses than normally
prescribed.
FURTHER READING
Orr, William C, Altshuler, Kenneth Z,
and Stahl, Monte L. Managing Sleep Complaints. Chicago: Year Book
Medical Publishers, 1982.
SEE
• Chapter 4: Antidepressant Drugs,
Antihistamines, Benzodiazepines, Central Nervous System Stimulants,
Pain Relievers.
• Chapter 5: Amino Acids, Herbs,
Melatonin, Minerals (calcium, magnesium), Royal Jelly, Vitamins.
• Chapter 6: Acupuncture, Aroma
Therapy, Biofeedback, Hypnosis, Meditation.
• Chapter 7.
URINARY TRACT PROBLEMS
Bladder problems are not uncommon in
CFIDS. Dr. Jay Goldstein re ports that some 20% of his patients
experience pain on urination. Prob lems may include the need to go to
the bathroom frequently (polyuria), difficulties urinating (dysuria),
and the painful, aching, or burning sensa tion that are typical
symptoms of inflammation of the urinary tract (cysti tis). Although
both men and women can experience urinary difficulties, the origins
of the problems can be somewhat different. Because of anatomical
differences in urinary tract structure, cystitis is more infrequent
in men than in women. However, men may experience urologic problems
due to inflammation and infection of the prostate gland
(prostatitis).
CYSTITIS
Cystitis, although usually referred to
as a bladder or urinary tract infection, is not limited to bacterial
causes. It also can be related to an allergic response, chemical
poisoning, congenital defects, or hormonal fluctuations. The
distinction between the common urinary tract infection caused by
overgrowth of bacteria (often Escherichia coli) in the urinary tract
and the noninfectious bladder disorder known as interstitial cystitis
is especial ly important because treatments for each of these
disorders differ radical ly.
In You Don't Have to Live With Cystitis!, Dr. Larrian Gillespie attributes interstitial cystitis to loss of the protective lining (glycosaminoglycans, or GAG layer) that normally insulates the bladder tissue from its contents. When the GAG layer is eroded (which Dr. Gillespie claims may be caused by excessive or inappropriate use of antibiotics, radiation, or chemical exposure), painful, burning urination results. Once the GAG layer has been compromised, the bladder may become repeatedly irritated by the release of certain neurotransmitters (notably serotonin) that keep the bladder in its raw, painful state. The symptoms of interstitial cystitis can be so severe that a person can qualify for disability on this basis alone.
In You Don't Have to Live With Cystitis!, Dr. Larrian Gillespie attributes interstitial cystitis to loss of the protective lining (glycosaminoglycans, or GAG layer) that normally insulates the bladder tissue from its contents. When the GAG layer is eroded (which Dr. Gillespie claims may be caused by excessive or inappropriate use of antibiotics, radiation, or chemical exposure), painful, burning urination results. Once the GAG layer has been compromised, the bladder may become repeatedly irritated by the release of certain neurotransmitters (notably serotonin) that keep the bladder in its raw, painful state. The symptoms of interstitial cystitis can be so severe that a person can qualify for disability on this basis alone.
People who have frequent symptoms of
cystitis but have negative urine cultures may have interstitial
cystitis and should follow the suggestions below.
TREATMENT TIPS
Treatment for bladder problems varies
according to type. Medical treatments for interstitial cystitis
require a diagnosis. Securing a diagnosis for interstitial cystitis,
however, is not simple. It may be necessary to un dergo cystoscopy or
biopsy, painful procedures that involve threading a small tube
through the urethra to examine or take tissue samples from the
bladder wall. Because most tests for interstitial cystitis are
invasive and uncomfortable, Dr. Gillespie makes some simple
recommendations for short-term relief of symptoms.
In the case of interstitial cystitis
acidity worsens the condition. (Dr. Gillespie likens drinking
cranberry juice for cystitis to throwing gasoline on a fire.) Baking
soda acts to make the urine more alkaline, which relieves burning
pain. Dr. Gillespie recommends drinking a teaspoon of baking soda in
water when symptoms are first noticed. In a few hours, repeat us ing
half a teaspoon of trisodium compound (Tri-Salts), which are released
more slowly into the system.
To dilute the urine, at least 10
glasses of water should be drunk during the day. If herbs can be
tolerated, horsetail or corn silk tea helps flush the bladder.
Acid foods and foods high in the amino
acids which eventually form serotonin and norepinephrine can irritate
the bladder lining. The following foods should be avoided:
Acid Foods
Alcoholic beverages
Apples
Cantaloupes
Carbonated drinks
Chilies, spicy foods
Citrus
Coffee
Cranberries
Grapes
Guava
Lemons
Peaches
Pineapple
Plums
Strawberries
Tea
Tomatoes
Vinegar
Foods High in Tyrosine, Tyramine,
Tryptophan, and Aspartate
Avocados
Cranberries
Prunes
Aged cheeses
Fava beans
Raisins
Bananas
Lima beans
Rye bread
Beer
Mayonnaise
Saccharine
Brewer's yeast
NutraSweet
Sour cream
Canned figs
Nuts
Soy sauce
Champagne
Onions
Vitamins buffered with aspartate
Chicken livers
Pickled herring
Wine
Chocolate
Pineapple
Yogurt
Not everyone notices complete relief of
all symptoms by avoiding these foods; however, a substantial number
of Dr. Gillespie's patients have obtained partial or significant
relief. It may not be necessary to avoid all of these foods; perhaps
only the very acidic foods such as citrus will trigger symptoms.
Trial and error, along with keeping a food and symptoms diary, can
help determine which of these foods to avoid. In addition, some dyes,
additives, and chemical agents commonly found in food products can
trigger symptoms. These include tartrazine (yellow dye No. 5),
monosodium glutamate (MSG), sodium benzoate, and benzyl alcohol.
Carefully read labels on foods and medications. Acid-free coffee and
teas are available for tea and coffee lovers who can tolerate
caffeine (call 800-TEA-LEAF).
Vitamin B6, if tolerated, helps heal
the bladder. It helps prevent tryptophan metabolites in urine from
converting to free radicals and can convert other amino acids into
free radical scavengers, thus lessening damage to the lining of the
bladder. This may be the only B vitamin the more sensitive patients
with interstitial cystitis can tolerate (the fermenting process used
to formulate other B vitamins can cause bladder irritation in some
patients). P5P is a well-tolerated form of vitamin B6. Dosage should
not exceed 50 to 100 mg/day to avoid creating dietary deficiency of
vitamin B complex.
Dimethylsulfoxide (DMSO) is an
industrial solvent derived from wood. Its only use approved by the
Food and Drug Administration (PDA) is for treatment of interstitial
cystitis. DMSO is instilled into the bladder through a catheter.
Heparin, bicarbonate of soda, or a steroid (such as Kenalog) may be
added to DMSO to enhance its anti-inflammatory prop erties. DMSO,
alone or in combination, is believed to stabilize the bladder lining
and provide a medium for the cells to begin self-repair. This
treatment must be done in a urologist's office because the procedure
requires sterile conditions. The drugs used also require a
prescription. People who are highly allergic should approach DMSO
with caution because it causes the release of histamine.
Elmiron has recently been approved by
the PDA for general use. This drug reportedly has been quite
successful in treating interstitial cystitis.
Treatments for bacterial infections of
the urinary tract include Macrodantin, a urinary antiseptic, and
antibiotic drugs. In all cases, bub ble baths, bathing in
contaminated water, synthetic underwear, and tight pants should be
avoided. Pyridium can be taken for acute pain.
Caution: Patients with a diagnosis of
cystitis should always request a urine culture. "Routine"
antibiotic therapy without a confirmed bacterial infection may
substantially worsen interstitial cystitis and, in any case, will not
help treat it.
MORE INFORMATION
Interstitial Cystitis Association of
America
PO Box 1553
Madison Square Station
New York, NY 10159
800-HELP-ICA (800-435-7422) (toll-free
telephone)
212-979-6057 (local telephone)
212-677-6139 (fax)
www.ichelp.com (website)
The association can help you find a doctor in your area who will treat interstitial cystitis; they also publish a newsletter that contains useful treatment information and resource materials.
The association can help you find a doctor in your area who will treat interstitial cystitis; they also publish a newsletter that contains useful treatment information and resource materials.
FURTHER READING
- Chalker, Rebecca, and Whitmore, Kristene. Overcoming Bladder Disorders. New York: Harper & Row, 1990 (available from Interstitial Cystitis Association of America, $14.00).
- Gillespie, Larrian. You Don't Have to Live With Cystitis! New York: Avon Books, 1986 (to order direct, call 800-238-0658).
SEE
• Chapter 4: Antidepressant Drugs
(Elavil), Antihistamines (Atarax and Vistaril).
• Chapter 5: Herbs.
PROSTATITIS
The prostate is a small gland, roughly
the size of a large chestnut, that surrounds the neck of the bladder
and the urethra. Although the principal function of the prostate
gland is to produce the fluid that comprises most of the semen, its
location ensures that problems that arise in this gland will cause
bladder symptoms. Pressure from inflammation of the prostate, whether
from bacterial or viral infection, excessive heat, radiation, or
chemicals, causes pain and difficulty initiating or stopping urine
flow. Infections of the prostate (and urinary tract) also produce a
slight watery discharge (usually observed in the morning), an itching
feeling inside the penis and discomfort while urinating, and pain in
the perineal area. Acute bacterial prostatitis also can cause fever
and lower back pain.
Dr. Byron Hyde, in his observations of
CFIDS outbreaks, has noted that early in the illness
pseudoprostatitis was observed, often in quite young men (The
Clinical and Scientific Basis of ME/CFS, 1992). This implies that
many of the urinary problems that beset men with CFIDS are not due to
specific infection. However, any of the symptoms associated with
prostatitis require consultation with a urologist. One male patient
mentioned that, in his case, a prostate infection seemed to have
triggered CFIDS. Given the increased susceptibility to infections
experienced by many people who contract CFIDS and the fact that
inflammation is a common problem throughout the course of the
illness, problems in this area always should be thoroughly
investigated by a competent physician.
TREATMENT TIPS
Because infection and inflammation of
the prostate gland produce similar symptoms, doctors sometimes have
difficulty making a differential diagnosis based on symptoms alone.
Bacterial and viral infections of the prostate, however, can be
detected by means of urinalysis or examination of prostatic fluid.
Nonspecific bacterial prostatitis usually is treated with
tetracycline. Chronic bacterial prostatitis is treated with a
combination of antibiotics. (Nonbacterial prostatitis is not treated
with antibiotics.) Sometimes muscle relaxants are used to relieve
spasms in the muscles of the pelvic floor. Hot sitz baths and the
occasional use of tranquilizers are also recommended. Rarely, in
cases where the pain seems to be related to inflammation in the pubic
bone, nonsteroidal anti-inflammatory drugs (NSAIDs) have been
prescribed. Nutritional recommendations for prostate support include
zinc (deficiency has been linked to some forms of prostatitis),
essential fatty acids (important in prostate function), magnesium and
calcium, vitamin A and vitamin E, and prostate glandular extracts,
which can be found in health food stores.
FURTHER READING
Rous, Stephen. The Prostate Book: Sound
Advice on Symptoms and Treatment. New York: W.W. Norton & Co.,
1988.
VISION AND EYE PROBLEMS
Vision and eye problems in CFIDS cover
a broad range. About 75% of people with CFIDS experience some
difficulty with vision. Light sensitivity is nearly universal, at
least at some stage in the illness. Because the optic nerve is so
long (it traverses the entire length of the brain to process visual
information), vision problems can originate in a number of areas of
the brain. Most researchers agree that in CFIDS the problems probably
stem from the area at the top of the brain stem (the midbrain) or in
the hypo-thalamus (which controls pupil dilation). Eye problems in
CFIDS can be both neurologic (focus problems) or mechanical (dryness,
tearing), al though most are probably related to nervous system
dysregulation. Eye problems in CFIDS tend to be transient and,
although irritating, benign.
PHOTOPHOBIA
Many people experience extreme
sensitivity to light, especially in the acute or initial stages of
CFIDS. The cause of this sensitivity is a contradictory dilation of
the pupil (usually on only one side), rather than the usual
narrowing, when subjected to a light source. The excessive influx of
light causes pain and a spontaneous impulse to shield the eyes from
damage. Wearing dark sunglasses and keeping curtains drawn over
windows helps ameliorate light sensitivity.
FLOATERS AND SPOTS
Specks or dots that seem to float
across the field of vision are common in acute phases of CFIDS. They
are most noticeable against a light background and tend to follow
movement of the eye. Floaters are caused by the normal condensation
of collagen within the eye and are harmless, requiring no treatment.
Floaters or spots accompanied by light flashes or loss of peripheral
vision need to be investigated, however, because they may be
indicative of inflammation or damage to the retina.
TEARING AND DRY EYE
People with CFIDS report both excessive
tearing and dry, irritated eyes, frequently in alternation. The
periodic dry, burning eyes (keratitis sicca) common in CFIDS can lead
to conjunctivitis (pink eye), in which the eye turns pink and
releases a sticky discharge. It should be noted that the
conjunctivitis experienced by many people with CFIDS is rarely the
result of bacterial infection. In most cases, conjunctivitis results
from excessive dryness, airborne allergies, or rubbing (due to
itching). People who are prone to dry, burning, itchy eyes, or
conjunctivitis, can benefit from artificial tears. Persistent dry eye
can also be an indication of Sjogren's syndrome, an autoimmune
disease that causes all mucous membranes to dry (see discussion of
Sjogren's syndrome). In about half of all diagnosed cases, Sjogren's
syndrome accompanies other connective tissue disorders; thus it may
be worth requesting an antinuclear antibody test if symptoms are
unusually persistent.
SLUGGISH FOCUS AND DOUBLE AND BLURRED
VISION
Seeing double (diplopia) can be
disconcerting. Fortunately, it is usually transitory, as is blurred
vision. People with CFIDS also notice that it takes longer to focus
the eyes, particularly when changing focus from near to far objects.
All of these difficulties are most likely caused by nervous system or
muscle coordination problems, in which the normally fine-tuned
response between the small muscles controlling the lens and the brain
is not synchronized. The result is that when the lens of the eye
overreacts to stimuli, the normal corrective mechanisms that act to
straighten the eye fail to op erate as quickly as they should. An
alteration in brain signals also can lead to uncoordinated eye
tracking (one pupil dilates or contracts at a different rate from the
other). The outcome is short-term blurring, double vision, and slow
focus. All of these problems are exacerbated by tiredness and
im prove with rest.
TUNNEL VISION
Sometimes people with CFIDS experience
loss of peripheral vision so severe that it appears as though they
are looking through a tunnel. Tunnel vision may occur concurrently
with loss of peripheral vision, making tasks such as driving risky.
NIGHT BLINDNESS
Night blindness is common in people who
also have other visual disturbances. Night vision can decrease to the
extent that a person cannot manage a trip to the bathroom at night.
Leaving a night light on can remedy this problem.
DEPTH-OF-FIELD LOSS
People with vision problems commonly
experience difficulties in tasks that require relocating objects
because they have lost the ability to judge distance. As a
consequence, they may mean to place a glass on a counter but miss it
by an inch, walk into doorjambs, stumble on uneven sidewalks, have
difficulty calculating the distance between stairs (which leads to a
lot of anxiety about falling), and have problems judging the speed of
oncoming traffic. Depth-of-field loss also causes visual confusion
when looking at repeating objects such as stairs (particularly if
they are moving, as on an escalator), oriental rug patterns, and
other dense, repetitive designs. When depth-of-field loss is severe,
objects can appear two-dimensional.
NYSTAGMUS
Dr. Alfredo Sadun, a
neuroophthalmologist at the University of Southern California, has
observed nystagmus (small, rapid eye movements) in one fourth of
patients with CFIDS. Nystagmus is rare (5%) in the general population
and usually indicates an underlying neurologic problem. Dr. Sadun has
inferred from this and other vision problems common to CFIDS that
people with nystagmus may have a brain stem inflam mation in the
midbrain, which would cause dysfunction of the brain cells associated
with vision.
SJOGREN'S SYNDROME
Sjogren's syndrome is an autoimmune
disorder that affects some 2 to 4 million patients in the United
States, 90% of whom are women. In Sjogren's syndrome, the
moisture-producing glands in the body, particularly those in the eyes
and mouth, are attacked by the immune system. Typical symptoms
include dry eyes and mouth, leading to blurred vision, eye
dis comfort, photophobia, hoarseness, and difficulty swallowing.
Primary Sjogren's syndrome is diagnosed
in the absence of other autoimmune or connective tissue disorders.
Secondary Sjogren's, the type patients with CFIDS are likely to
contract, is accompanied by other illnesses that affect connective
tissue (for example, rheumatoid arthritis). About 50% of patients
with Sjogren's syndrome have the secondary type. Diagnosis of
Sjogren's syndrome is made on the basis of blood tests that detect
autoantibodies, reduced tear production in the eyes, and taking a
detailed history of symptoms.
TREATMENT TIPS
A combination of vision and eye
problems can make highly visual tasks such as reading or driving
virtually impossible. Watching television, with its rapid shifts of
scene and pulsating light effects, becomes particularly excruciating
with vision problems. Dr. Alfredo Sadun recommends that people with
focus problems (double vision, slow focus, poor depth percep tion,
uneven tracking) avoid the use of bifocal eyeglasses because they
make inordinate demands on the musculature of the eyes. He recommends
separate glasses for near and far sight. People who have never worn
glasses may find that purchasing glasses to alleviate focus problems
does not help. Because most eye symptoms are transient, a person may
have se vere problems one month and rush to buy glasses, only to find
that vision has become completely normal the next month. Symptoms
that persist or worsen over time, however, should be investigated by
an ophthalmologist.
Dr. David Browning, an ophthalmologist
who practices in Charlotte, North Carolina, has pointed out that many
vision problems can be exacerbated with use of psychoactive drugs
(such as Sinequan and Xanax). Because these drugs are commonly
prescribed for many individuals with CFIDS, people should be aware of
potential visual side effects and exercise caution when driving or
performing other demanding or dangerous tasks. It should be noted,
however, that some people with CFIDS experience improvement in vision
problems while taking Klonopin. Vision problems in CFIDS are rarely
due to vitamin A deficiency, yet some people report im proved eye
function after taking beta carotene (either in supplement form or as
carrot juice). Eyebright capsules and bilberry, available at health
food stores, are two other common herbal remedies for eye problems.
Treatments for Sjogren s syndrome
include moisture replacement therapies, nonsteroidal
anti-inflammatory drugs (NSAIDs), and steroids (to downregulate
immune system activity). Many patients recommend Bion Tears, an
artificial tear solution that contains no preservatives or dyes and
is available over the counter at most drugstores.
MORE INFORMATION
Sjogren's Syndrome Foundation, Inc.
333 N. Broadway, Suite 2000
Jericho, NY 11753
800-475-6473 (toll-free telephone)
516-933-6365 (local telephone)
516-933-6368 (fax)
http://www.sjogrens.com (website)
Publishes a newsletter and markets The
Sjogren's Syndrome Handbook, a guidebook for diagnosis and treatment.
Annual membership: $25 in U.S., $30 in Canada, $35 over seas.
Handbook: nonmembers, $29.95 plus $2.50 for shipping; members,
$19.95.
FURTHER READING
Hyde, Byron M. The Clinical and
Scientific Basis of ME/CFS. Ottawa, Ontario: The Night ingale
Research Foundation, 1992.
WEATHER SENSITIVITY
It is common knowledge among people
with CFIDS that weather changes produce a general worsening of
symptoms. People in the same geographic area often exchange
empathetic phone calls just before storms, cold fronts, and other
climate changes. In situations where more than one member of a family
is ill, the response to weather may be particularly dramatic because
all ill members experience an exacerbation of symptoms
si multaneously.
Fully one third of the general
population may be sensitive to weather changes, according to studies
performed at Hebrew University in Jerusalem. The weather sensitive
commonly experience symptoms such as muscle pain, aching joints,
insomnia, irritability, and the "blahs" a day or two before
the weather changes.
The worst weather for the sensitive indi vidual is characterized by a falling barometer and high humidity. The rea sons for the mysterious clairvoyance of those who seem to know when the weather is going to change may have to do with neurochemical changes stimulated by radiowaves sent out by advancing fronts.
The worst weather for the sensitive indi vidual is characterized by a falling barometer and high humidity. The rea sons for the mysterious clairvoyance of those who seem to know when the weather is going to change may have to do with neurochemical changes stimulated by radiowaves sent out by advancing fronts.
Studies directed by Dr. Felix Sulman,
head of the Bioclimatology Unit at Hebrew University, demonstrated
that people who reported sensitivity to weather changes had unusually
high amounts of serotonin and histamine in their urine a day or two
before a weather change. Histamine is an inflammatory agent released
during allergic reactions. Serotonin, a neurotransmitter and
vasoconstrictor, is also an irritant and can be released in the body
during emotional stress. According to Dr. Sulman, excessive amounts
of serotonin, like histamine, can produce agitation, insomnia,
irritability, runny or stuffy nose, inflammation of the eyeballs and
lids, shortness of breath, sore throat, edema (in hands and feet),
migraine headache, nausea, dizziness, palpitations, flushes
accompanied by sweating or shivering, diarrhea, and the constant urge
to urinate.
Dr. Sulman maintains that the "sferics," or radiowaves, released as a consequence of the in creased electrical activity preceding a front, produce positive ions that in turn act to stimulate the release of serotonin and histamine. He also speculates that weather sensitivity may be genetically adaptive because in creased moodiness might have served as a warning to get back to shelter as quickly as possible. Animals may be subject to the same mechanisms. It has often been observed that their uncanny foreknowledge of coming storms leads them to seek shelter before the weather changes.
Dr. Sulman maintains that the "sferics," or radiowaves, released as a consequence of the in creased electrical activity preceding a front, produce positive ions that in turn act to stimulate the release of serotonin and histamine. He also speculates that weather sensitivity may be genetically adaptive because in creased moodiness might have served as a warning to get back to shelter as quickly as possible. Animals may be subject to the same mechanisms. It has often been observed that their uncanny foreknowledge of coming storms leads them to seek shelter before the weather changes.
People who are weather sensitive may
also react to changes in temperature. Dr. Sulman's group found that,
in addition to increased histamine levels, hot weather produced
decreased excretion of adrenal hormones (cortisol) signaling adrenal
exhaustion. This reaction is perhaps prompted by stimulation of the
hypothalamus, which is sensitive to heat. With prolonged hot weather,
the symptoms of adrenal exhaustion become evident: low blood
pressure, fatigue, listlessness, depression, confusion, difficulty
performing mental tasks, and hypoglycemia. In some individuals the
period of exhaustion may be preceded by transient hyperarousal of the
thyroid (particularly at the onset of hot, dry weather), causing
overactivity, in somnia, irritability, restlessness, palpitations,
sweating, and diarrhea. Cold weather can produce similar effects.
Many people with CFIDS and fibromyalgia
note a definite worsening of symptoms, including anxiety, myalgia,
headache, inflammation, and insomnia just before storms and the
passing of weather fronts, particularly during conditions of high
positive ions (low barometer and high humidity). Many also note a
worsening of symptoms during hot weather. We are not aware of anyone
with CFIDS who has been tested for serotonin, histamine, or adrenal
hormone levels in the urine before a storm or during hot or cold
weather so it cannot be certain that altered hormone levels cause the
weather sensitivity experienced by people with CFIDS. However, many
of Dr. Sulman's findings corroborate what is known about hormonal
ir regularities caused by CFIDS.
Dr. Sulman has noted that prolonged hot
weather stimulates the hypothalamus, a brain structure that seems to
act as a focal point for many CFIDS-related problems and can
eventually lead to adrenal exhaustion. The adrenal irregularities
common in CFIDS (as noted by Dr. Mark Demitrack and colleagues) may
be responsible for unusually rapid depletion of adrenal hormones and
ensuing malaise brought about by heat. Increased histamine levels
also have profound implications for the substantial number of people
with CFIDS, who may also experience oversensitivity to histamine
itself (CFIDS Chronicle, Summer 1993). Dr. Sulman's findings also
predict higher reactivity to weather changes in women, who produce
far fewer adaptive stress hormones than men and more histamine and
serotonin in response to weather stress.
A number of people with CFIDS report
worsening of depression during the winter. Seasonal affective
disorder (SAD) is a medically recognized condition in which the
decreased amount of light during the winter months triggers mood
changes. Some patients have found that SAD treatments (exposure to
full-spectrum light from full-spectrum lightbulbs, lightboxes, and
spending time outdoors) may help alleviate symptoms.
TREATMENT TIPS
To minimize the effects of impending
storms, Dr. Sulman recommends avoiding sources of positive ionization
(forced-air heating and cooling, friction between synthetic fabrics,
air pollution) as much as possible. Exposure to negative ions is also
helpful, although this solution is difficult to implement.
Negative-ion machines, because they produce ozone and nitrous oxide,
are not recommended. Some people have observed that their symptoms
improve during a stay by the ocean, where negative ionization is
high, but this is not a practical solution for most. Some essential
oils reputed to increase the effectiveness of negative ions are
cypress, lemon, orange, bergamot, pine, bois de rose, cedarwood,
grapefruit, pettigraine, patchouli, and sandlewood. For people with
SAD, full-spectrum lightbulbs and lightboxes can be purchased from
the CFIDS and Fibromyalgia Health Resource (800-366-6056).
Other suggestions that Dr. Sulman makes
to increase adrenal hormones and minimize the effects of heat and
impending weather changes include low levels of monoamine oxidase
inhibitors (MAOIs) and serotonin blockers. In CFIDS, however, these
drugs should be used with cau tion because they entail risks that may
outweigh their potential value.
For people sensitive to humidity, it
may be worthwhile to purchase a dehumidifier for the bedroom.
Air-conditioning systems also reduce the amount of humidity inside
the house. Although Dr. Sulman cautions against forced-air cooling,
sometimes the relief brought by the decrease in humidity offsets any
negative effects of the machinery. For all types of weather
sensitivity, it is important to be aware of impending storms and
fronts. Listen to weather forecasts and keep a log of symptoms before
weather changes to see which ones produce the most severe effects.
Plan to take it easy on those days.
FURTHER READING
Sulman, Felix G. Short- and Long-Term
Changes in Climate. Boca Raton, Fla.: CRC Press, 1982.
WEIGHT LOSS OR GAIN
Weight fluctuations are common in CFIDS. These changes can be dramatic, with a sudden gain or loss of 10 pounds or more in less than a week. In long-term cases, weight problems may be demonstrated as a tendency to gain weight easily.
There are many competing theories to
explain weight fluctuation in people with CFIDS. Increases and
decreases in weight can occur as the result of faulty cell
metabolism, immune system overactivation, hypothyroidism or
hypoadrenalism, loss of appetite due to excess catecholamine
production (adrenaline), gastrointestinal upset, and carnitine
deficiency. Hypothalamic dysregulation is another prime reason for
weight problems. The hypothalamus controls thyroid and adrenal
function. It is a potent regulator of the immune system and also
regulates appetite. Studies performed in rats some 50 years ago
demonstrated that damage to the ventromedial hypothalamus resulted in
obesity, whereas electrical stimulation to the same region produced
anorexia. More recent research has proposed that alterations in
neurotransmitter activity in the hypothalamus, specifically
norepinephrine, are ultimately responsible for appetite. Since
hypo-thalamic dysfunction is central in mediating other CFIDS
symptoms, there is good reason to suspect its involvement in appetite
disorder and weight problems associated with the illness.
WEIGHT LOSS
The sudden weight loss common to the
acute stages of CFIDS can be dramatic. First, surface fat reserves,
then muscle seem to disappear daily. The reasons for the weight loss
are multiple. Some symptoms common in the acute stage (loss of
appetite, gastrointestinal upset, changes in taste perception,
exhaustion, difficulty swallowing, nausea, vomiting) result in
serious reduction in caloric intake. Lowered intake reduces the
supply of available vitamin B complex, which in turn diminishes
appetite. As intake is further reduced, deficiencies become
established, leading to continua tion of the vicious cycle. Lack of
food intake is not the only reason people lose weight in this stage.
Immune system overactivity, in particular the expression of tumor
necrosis factor (TNF), a cytokine released by activated T cells,
causes severe weight loss. Dr. Nancy Klimas has found increased
expression of tumor necrosis factor in patients with CFIDS (Journal
of Chronic Fatigue Syndrome, 1995). In theory, the acute stage of the
illness, when the immune system is overactive, may produce sudden
weight loss due to the increased production of tumor necrosis factor.
This is true even for patients who eat copious amounts of food.
TREATMENT TIPS
Treatments that have been helpful in
acute-stage weight loss include alpha ketoglutarate (a citric acid
metabolite that halts wasting syndrome), L-carnitine, vitamin B
complex, and general nutritional supplementation. Ensure, protein
powders, and shakes are also effective in increasing weight.
Antidepressants, mild tranquilizers (benzodiazepines),
stress-reduction techniques (hypnosis, meditation) may all help
increase appetite.
WEIGHT GAIN
A number of theories have been proposed
for the weight gain typical of many people with CFIDS. One is that in
some people thyroid function is reduced, leading to generally slower
metabolism, constipation, drowsiness, and a tendency to gain weight.
Another theory is that along with altered cell metabolism comes an
inability to utilize fat and carbohydrates. The well-known
L-carnitine deficiencies observed in CFIDS seem to bear this theory
out. The inability to utilize carbohydrates could feasibly lead to
their storage as fat in the body. Reduced levels of glucose resulting
from in sufficient carbohydrate metabolism can produce carbohydrate
craving. The late-afternoon sugar and starch cravings experienced by
so many people with CFIDS can lead to overeating and the consequent
storage of underutilized carbohydrates as fat (although not all those
who experience cravings gain weight). A third theory proposes that
the weight gain in CFIDS is largely due to edema, that is, water
weight. According to this theory, water weight buildup is due to
adrenal insufficiency, with adrenal hormones the agents responsible
for regulating water retention. Because secondary adrenal
insufficiency has been noted in CFIDS, this theory also seems
relevant.
One of the biggest problems associated
with weight gain is loss of self-esteem. Patients who, in addition to
their illness, have to cope with a change in appearance may feel
unattractive. Sometimes it helps to remember that the increase in
weight is not due to poor eating habits or laziness but is a symptom
of an illness. As the illness recedes and other symptoms wane, weight
tends to return to normal.
TREATMENT TIPS
The weight loss drugs, fenfluramine
plus phentermine (Fen-phen) and dexfenfluramine (Redux) have recently
been banned by the Food and Drug Administration (PDA). These drugs
decrease carbohydrate and sugar cravings by altering levels of
serotonin and dopamine, two neurotransmitters that affect appetite.
Weight loss medications do not increase metabolic rate, nor do they
"melt fat off your body." In addition, they can be
dangerous. Patients with CFIDS should avoid weight loss drugs because
side effects can be severe. Side effects include pulmonary
hypertension, dry mouth, diarrhea, weakness, sleepiness, dizziness,
and gastrointestinal pain. Ephedrine, an herb currently being
marketed as "herbal Fen-phen," can produce similar side
effects (see Chapter 5: Herbs).
Some central nervous system stimulants
such as Lonamin can also help in weight reduction. Lonamin activates
dopamine in the brain, which may produce unpleasant side effects such
as insomnia, agitation, and restlessness. Prozac, an antidepressant
sometimes prescribed for people with CFIDS, depresses the appetite
and can indirectly cause weight loss. Maintaining good dietary habits
is essential. Pay careful attention to eating a wholesome, nutritious
diet, even within the confines of food restrictions (see Chapter 9).
Some clinicians recommend taking the supplement L-carnitine for
weight loss. L-Carnitine helps convert fat into muscle, which is
beneficial for people who gain a lot of weight while ill. However, it
should also be noted that a few patients with CFIDS, particularly
those with low-weight problems, have gained weight while taking
L-carnitine supplements. It is possible that L-carnitine acts to
normalize weight. The mineral chromium may help curb sugar cravings,
as can the amino acid L-glutamine.
People who are taking antidepressants
should note that a number of these drugs, including monoamine oxidase
inhibitors (MAOIs) and tricyclic drugs, can cause weight gain. Sudden
weight gain after taking these medications should be reported to your
physician. People with persistent weight gain should undergo tests
for thyroid hormone insufficiency.
FURTHER READING
Wurtman, Judith J. The Serotonin
Solution. New York: Fawcett Columbine, 1996 (provides an interesting
and informative discussion of the role of serotonin in carbohydrate
crav ings; several chapters outline diet recommendations for specific
problems).
PART III TREATMENT OPTIONS
The following chapters summarize the
treatments currently used for CFIDS and its major symptoms. For the
sake of convenience, they are divided into three categories.
1. Pharmaceutical agents (Chapter 4)
include all prescription and over-the-counter drugs currently
recommended by CFIDS clinicians. All of these treatments must be
supervised by a physician, regardless of whether a prescription is
required. The information in this chapter can be used to make
preliminary investigations of medications referred to in the CFIDS
literature, to increase knowledge of medications suggested by
physicians, or to inform physicians about currently used CFIDS
medications. The Directory of Prescription Drug patient assistance
program lists companies that participate in providing prescription
drugs for patients who cannot afford them (800-762-4636).
2. Nutritional supplements and
botanical agents (Chapter 5) can be purchased without a prescription
from health food stores, mailorder vitamin suppliers, and some
drugstores and supermarkets. The information in this chapter can be
used to plan any treatment protocol designed with a nutritionist,
chiropractor, osteopath, neuropath, herbalist, or physician.
3. Alternative and complementary
medical and supportive therapies (Chapter 6) are often useful in
treating CFIDS, Many, such as acupuncture, require the services of
trained practitioners. This chapter also presents information about
many of the supportive therapies that have been used successfully to
alleviate symptoms of CFIDS. The fact that these treatments are
presented in separate chapters does not mean they must be kept
separate in practice. Most CFIDS clinicians use an eclectic approach,
freely combining nutritional supplements, complemen tary and
alternative medical practices, and traditional drug-oriented
medicine. Most patients with CFIDS use the same strategy, changing
back and forth from prescription drugs to supportive therapies to
home remedies. With the plethora of symptoms and the ever-changing
nature of CFIDS, flexibility is the best policy.
TREATMENT TIPS
- Start small. People with CFIDS tend to be sensitive to many medica tions. By starting with small doses, the risk of negative reactions is minimized. A patient can always build up to a larger dose. CFIDS clinicians nearly always start patients on a much lower than normal dosage for prescription medications.
- Go slow. Try one treatment at a time. Otherwise it will be impossible to identify which treatment was effective and which was not. Remember, many treatments, especially nonpharmaceutical treatments, may require several weeks to have an effect.
- Recycle. Throughout the different stages of the illness, treatment strategies need to change. What was not effective at an earlier stage in the illness may be helpful at a later one. Don't throw away supplements or pharmaceutical agents. Store them in the refrigerator, but remember to check the expiration dates before using them.
We hope that somewhere among these
pages will be a remedy that alleviates your worst symptom, or that
helps you progress so that you can see the light at the end of the
tunnel. Remember, keep trying. In the world of CFIDS treatments,
persistence pays.
Pharmaceuticals and Prescription Drugs
Ampligen
Antidepressant Drugs Antifungal Agents
Antihistamines Antiviral Agents Benzodiazepines Beta Blockers
Calcium Channel Blockers (Nicardipene,
Nimodipine, Nifedipine, Verapamil)
Central Nervous System Stimulants
(Cylert, Ritalin, Dexedrine, Lonamin)
Cytotec
Diamox
Diamox
Flexeril
Florinef
Gamma Globulin
Guaifenesin
Hydrocortisone
Kutapressin
Naltrexone
Nitroglycerin
Oxytocin
Pain Relievers
Pentoxifylline
Tagamet and Zantac
Transfer Factor
AMPLIGEN
DEFINITION. Ampligen (poly I:poly C12U)
is a mismatched double-stranded RNA (ribonucleic acid) with
immune-modulatory and antiviral properties. Because Ampligen has not
yet been approved by the Food and Drug Administration (PDA), its use
to date has been experimental.
BACKGROUND. In the early 1980s a
molecule called Poly(I)-Poly(C) was discovered to inhibit tumor
growth and stimulate interferon production. As a result, it was used
in a number of cancer trials. However, it was found that the
substance was toxic and made patients quite ill with serious side
effects. While Poly(I)-Poly(C), the parent of Ampligen, is extremely
toxic, the toxicity decreases significantly when the structure of the
RNA is altered. Fortunately, the effectiveness of the new substance
remains intact despite the change in structure.
In 1987 Ampligen was used
experimentally in a small group of patients with AIDS (acquired
immunodeficiency syndrome). The positive results of this trial seemed
to confirm the claim that Ampligen is believed to augment natural
killer cell function and influence 2-5A synthetase pathway. This
pathway is vital in the defense against viral infections. According
to Dr. Robert Suhadolnick of Temple University in Philadelphia, there
are defects in key components in the antiviral system in some CFIDS
patients, the most notable of which are low latent 2-5A synthetase
and upregulated RNase (ribonuclease) L activity (Journal of
Interferon and Cytokine Re search, 1997). Ampligen is thought to help
correct both of these defects.
USES IN CFIDS. In August 1988, Dr.
Daniel Peterson, a pioneer in CFIDS treatment, was the first
physician to use Ampligen in an extremely ill patient with CFIDS.
Because of the severity of the patient's illness, Dr. Peterson was
able to obtain permission from the PDA to use Ampligen under
compassionate care status. The results were impressive and
encouraging. One year into therapy the patient had recovered
near-normal function in some areas and demonstrated a 46-point
increase in IQ. This justified the next pilot study by Dr. Peterson,
as well as several other formal studies conducted independently.
At the 1990 CFIDS Conference in
Charlotte, North Carolina, and at the Cambridge Symposium, Dr.
Peterson reported positive results after treating 15 patients with
Ampligen. At the end of 24 weeks, most of the patients demonstrated
increased performance status (Karnofsky scores) and exercise
tolerance (as measured by treadmill testing). Cognitive improvement
was demonstrated by improved memory and increased IQ scores. No
significant toxicity was reported. Ampligen's antiviral properties
were confirmed by evidence that human herpesvirus 6 reactivation was
absent after treatment and abnormal components of the 2-5A pathway
returned to normal range. It is of interest that of the two or three
patients who did not respond to Ampligen therapy, the only
significant pretreatment difference was measurable differences in
2-5A synthetase pathways.
The encouraging results of the small
study by Dr. Peterson paved the way for a larger PDA-approved
double-blind study in 1991 involving 92 patients in four U.S. cities.
Again the results were encouraging. Many of the participants had been
severely disabled before treatment and required assistance for simple
daily activities. More than half of those in the study who received
Ampligen demonstrated improvement and many were able to carry out
daily activities with minimal assistance.
A study in Brussels, Belgium, presented
at the 1996 American Association for Chronic Fatigue Syndrome (AACFS)
Conference, to evaluate the safety and efficacy of intravenously
administered Ampligen also showed encouraging results. Eleven
patients with myalgic encephalomyelitis (ME) (as CFIDS is called in
Belgium) were given intravenous Ampligen twice a week for 24 weeks.
The Belgian physicians reported that at the end of 24 weeks, all 11
experienced some improvement. In addition, no adverse effects to
treatment were noted. These positive results paved the way for
expanded trials currently being conducted in Belgium.
PROTOCOL. Because this drug is in the
experimental phase, treatment protocols are still evolving.
Ampligen is quite fragile, which makes administration difficult (it must be given intravenously). Two intravenous injections a week are given over a 9- to 16-month period. Longer courses of treatment seem to produce longer lasting results.
Ampligen is quite fragile, which makes administration difficult (it must be given intravenously). Two intravenous injections a week are given over a 9- to 16-month period. Longer courses of treatment seem to produce longer lasting results.
PROS AND CONS. The CFIDS community is
watching the evolving status of Ampligen with great interest. As one
of the few drugs that has been held out as a possible cure for CFIDS,
Ampligen may hold great promise for the future. Its rate of success,
at least in clinical trials, is to date unequalled by any other
treatment. Dr. Kenny DeMeirleir claims that close to 80% of his
patients reported "complete clinical recovery" after taking
an extended course of treatment. Patients report improvement in
overall function, energy levels, cognitive performance, and some have
been able to return to work.
Although test results are encouraging,
it is important to note that Ampligen is not a surefire cure. The
percentage of patients who demonstrate substantial improvement with
the drug has yet to be determined. Side effects are not uncommon.
Patients who have taken the drug report that they felt worse
initially and that it took some time before the side effects
(dizziness, nausea) were no longer felt. Dr. Peterson reported at the
1990 CFIDS Conference that some patients experienced an
interferon-like reaction, with headaches, myalgias, and rarely, hair
loss. A puzzling effect noted by Dr. Paul Cheney was that although
patients report overall lessening of symptoms, particularly cognitive
symptoms, they do not necessarily equate this lessening of severity
to "feeling good" (CFIDS Chronicle, Phy sicians Forum,
1991).
AVAILABILITY AND COST. Currently,
Ampligen is available in the United States on an experimental basis
only to a limited number of patients. Dr. Patricia Salvato, Dr.
Daniel Peterson, and Dr. Charles Lapp are among a select number of
physicians in the United States who have completed the necessary
paperwork to begin treating patients meeting specific age and
severity of illness criteria. As the program gets underway, more
patients may gain access to the drug. Meanwhile, physicians
interested in treating patients with Ampligen can apply to HemispherX
Biopharma (formerly HEM). Canadian physicians can request Ampligen
for their pa tients using the Emergency Drug Release Program. In
Belgium, Ampligen is being administered to patients with CFIDS by Dr.
DeMeirleir at the University of Brussels.
At present, Ampligen is quite
expensive. A single infusion costs $140. At this rate, 1 year of
treatment will cost over $14,500. Patients must pay for the cost of
the treatment because Ampligen is available on a cost recovery basis
only. If Ampligen is approved by the PDA after additional
double-blind studies are completed, the cost may be covered by
insurance.
MORE INFORMATION
http://www.helixbio.com
http://www.cais.net/cfs-news/ampligen.htm
These websites provide up-to-date
information about the current status of Ampligen and other related
compounds such as Oragen.
ANTIDEPRESSANT DRUGS
DEFINITION. Antidepressant drugs are a
class of pharmaceutical products used to alleviate or prevent
symptoms of depression by influencing neurochemistry.
BACKGROUND. It is estimated that one in
four women and one in ten men can expect to experience at least one
episode of mood disorder in the course of a lifetime. The prevalence
of mood disorders has prompted a boom in research and, as a result,
several new drugs have been approved in recent years that provide
relief from depression.
In the late 1950s, the first
antidepressants, monoamine oxidase inhibitors (MAOIs), were developed
to treat depression and severe panic disorder. They operate by
inhibiting the action of monoamine oxidase, the enzyme that breaks
down epinephrine (adrenaline), norepinephrine (noradrenaline),
serotonin, and other monoamines. In the late 1960s, a new type of
drug, the tricyclic antidepressant, was introduced. The tricyclics
increased amounts of serotonin and norepinephrine in the brain. In
1987, Prozac (fluoxetine), a new neurochemical modulator, was
approved by the Food and Drug Administration (PDA). Prozac is one of
the family of drugs known as selective serotonin reuptake inhibitors
(SSRIs). These act directly on a brain cell's ability to reabsorb
serotonin, a neurotransmitter involved in many neurologic functions,
including sleep, digestion, blood flow, and, of importance, mood
elevation.
Although antidepressants were developed
to treat mood disorders such as anxiety and depression, clinicians
have found that the symptoms of many chronic illnesses seem to
respond to antidepressant therapy. Anti-depressants have been used to
treat chronic pain syndromes, migraine headaches, bladder and urinary
problems, and bulimia.
USES IN CFIDS. Patients with CFIDS
often are dismayed and concerned when their physicians suggest an
antidepressant. It appears they are being diagnosed with depression,
which, although sometimes a symptom of CFIDS, is clearly not the
underlying cause. Antidepressants do have a place in the treatment of
a number of CFIDS symptoms. They have proven helpful in improving
sleep, energy levels, and cognitive impairment, as well as
alleviating pain and perhaps even enhancing immune function.
Although there are various
antidepressants to choose from, not all patients with CFIDS respond
to these medications. Often CFIDS patients with sensitivities to
medications cannot tolerate any antidepressant, even in the smallest
doses. In a survey of patients with chemical sensitivities conducted
by a DePaul University research team, more than 50% of respondents
reported negative effects of antidepressants. Dr. Fred Friedberg,
author of Coping With Chronic Fatigue Syndrome: Nine Things You Can
Do, also found that a substantial proportion (about one third) of 249
patients with CFIDS reacted negatively to antidepressants. It is
important for physicians and patients to remember that CFIDS patients
usually require much lower doses of these medications than other
patients, and therefore the dose prescribed should be one tenth or
less (depending on the sensitivity of the patient) of the standard
dose.
In his book, The Doctor's Guide to Chronic Fatigue Syndrome, Dr. David Bell, pediatric CFIDS specialist, states that giving patients with CFIDS a standard dose of antidepressants can virtually serve as a diagnostic test for the illness; most patients are immobilized by it. Antidepressants can provide some degree of symptomatic relief to many patients. It is important, however, to be attentive to side effects, which frequently mimic the symptoms of the disease itself. Excessive fatigue and drowsiness, headaches, nausea, diminished libido, insomnia, and agitation can either be due to the effects of the drug or to the illness itself so it is important to be observant and increase the dosage cautiously.
In his book, The Doctor's Guide to Chronic Fatigue Syndrome, Dr. David Bell, pediatric CFIDS specialist, states that giving patients with CFIDS a standard dose of antidepressants can virtually serve as a diagnostic test for the illness; most patients are immobilized by it. Antidepressants can provide some degree of symptomatic relief to many patients. It is important, however, to be attentive to side effects, which frequently mimic the symptoms of the disease itself. Excessive fatigue and drowsiness, headaches, nausea, diminished libido, insomnia, and agitation can either be due to the effects of the drug or to the illness itself so it is important to be observant and increase the dosage cautiously.
TRICYCLIC ANTIDEPRESSANTS
NOTE: Tricyclic antidepressants
increase the amount of norepinephrine in the brain. They cannot be
given in conjunction with MAOIs because of the risk of producing
dangerously high blood pressure.
Sinequan
Sinequan (doxepin), one of the most
commonly used medications in the treatment of CFIDS, is of major
benefit in treating sleep disturbance. It is believed that Sinequan
may help correct the slow-wave sleep defect found in CFIDS and
fibromyalgia. Improvement in the sleep disturbance often brings an
increase in energy levels. Reduction in the pain associated with
CFIDS and fibromyalgia is also noted after treatment with Sinequan.
Many patients with CFIDS also report improvement in allergies as a
result of Sinequan's histamine-blocking properties. Because general
improvement has been noted in immune function, it has been speculated
that Sinequan at low doses may function as an immune modulator.
PROTOCOL. Low doses (2 to 10 mg) of
Sinequan, taken 1 to 2 hours before bedtime, are usually prescribed
to treat CFIDS symptoms. Liquid formulations allow for even smaller
doses.
PROS AND CONS. Side effects include
weight gain, constipation, and dry mouth. Many patients with CFIDS
report excessive sedation or a drugged feeling and therefore cannot
tolerate treatment. Paradoxically, some feel depressed after taking
the drug (but not before). However, most people report improved
quality of sleep, better endurance, and energy. While some patients
experience daytime sedation during the first few days, this problem
usually resolves rapidly. Benefits are often noted fairly quickly,
within a few days to weeks.
AVAILABILITY AND COST. Sinequan is inexpensive ($5 to $30 per month, depending on the dose) and is available by prescription in generic and brand-name formulations.
Elavil
Elavil (amitriptyline) is beneficial in
treating pain, sleep disturbance, headaches, and gastrointestinal
problems and may be recommended if Sinequan produces excessive
sedation. In addition, Elavil is often helpful in treating
interstitial cystitis, a disorder that affects many women with CFIDS.
Some interstitial cystitis symptoms that may respond to Elavil are
frequent urination and bladder and pelvic pain. Dr. Alan Wein, a
urologist who specializes in treating interstitial cystitis, has
noted that Elavil is effective in nearly 50% of his patients,
probably because of its antihistamine properties.
PROTOCOL. Dosage varies, but generally
10 mg or less nightly is prescribed to minimize side effects.
PROS AND CONS. The side effects of
Elavil are similar to those of Sinequan, although exacerbation of
muscle weakness in CFIDS seems to be more common with Elavil than
with other antidepressants. Benefits are noted quickly. On the
negative side, some patients have had to discontinue the drug because
of weight gain, dry mouth, or palpitations.
AVAILABILITY AND COST. Elavil is
available by prescription and is inexpensive. The generic drug costs
about $7 for a 30-day supply, compared with about $14 for the
brand-name drug.
Pamelor (nortriptyline), Norpramin (desipramine), and Tofranil (imipramine)
Pamelor (nortriptyline), Norpramin
(desipramine), and Tofranil (imipramine) are sometimes used in
patients with CFIDS. They are helpful in treating fatigue, pain,
sleep disturbance, and anxiety. Their main side effects are similar
to those of other tricyclic antidepressants.
SELECTIVE SEROTONIN REUPTAKE INHIBITORS
NOTE: SSRIs must not be taken within 14 days of discontinuing MAOIs.
Prozac
The first SSRI to be approved in the
late 1980s, Prozac (fluoxetine) differs from earlier antidepressants
in that its mode of action is more specific. It works directly on
altering the level and action of serotonin only (the tricyclic
antidepressants inhibit uptake of norepinephrine as well). The SSRIs,
also referred to as second-generation antidepressants, are often
prescribed in place of tricyclic antidepressants because they have
fewer side effects. Unlike other antidepressants, SSRIs do not cause
sedation. In fact, Prozac can often act as a stimulant to increase
energy. Nor do they cause the dry mouth, palpitations, and dry cough
that are common with use of the tricyclic drugs.
USES IN CFIDS. Dr. Nancy Klimas, CFIDS
specialist and immunologist at the University of Miami, has studied
the effect of SSRIs on the immune system. At the 1990 CFIDS
conference in Charlotte, North Carolina, Dr. Klimas reported that
more than half of 25 CFIDS patients given Prozac for 3 months showed
moderate to marked improvement. Improvements in the number of natural
killer cells seem to indicate that Prozac (and other
serotonin-influencing drugs) may have a modulating effect on the
immune system.
PROTOCOL. When used in CFIDS, Prozac is
generally given in considerably smaller dosage (2 to 10 mg, taken in
the morning) than the standard dose used to treat depression.
PROS AND CONS. Prozac is effective in
treating the fatigue of CFIDS, the hallmark symptom of the syndrome.
Other symptoms that may respond to treatment are pain, cognitive
dysfunction, and sometimes exces sive sleep. The drug is also helpful
in treating the physiologic depression that may accompany CFIDS as a
result of metabolic changes, as well as the secondary depression that
stems from the devastating experience of having a chronic,
debilitating illness. An additional benefit is that, unlike the
tricyclic antidepressants, Prozac does not cause weight gain. Some
people have reported substantial improvement with Prozac. One patient
reported that within a few weeks he was much better and has since
been looking for part-time work. Another woman claimed she would have
had to leave her job without Prozac. Others find it gives them an
all-around boost and helps control mood swings. However, an equal
number of people are unable to tolerate the side effects of Prozac
and have stressed emphatically that they will never try it again.
Reports of anxiety, agitation, and even excessive sedation (a paradoxical reaction not uncommon in CFIDS patients) are common. One woman said her fatigue while taking Prozac was so profound, it seemed she could not remember her own name. People who have difficulty sleeping almost universally report worsening of in somnia. In addition, many clinicians advise their patients who have been taking MAOIs to allow a longer than usual interval (up to 5 weeks) before taking Prozac. This drug's long half-life may also require a longer interval after discontinuation before starting new antidepressant treatments.
Reports of anxiety, agitation, and even excessive sedation (a paradoxical reaction not uncommon in CFIDS patients) are common. One woman said her fatigue while taking Prozac was so profound, it seemed she could not remember her own name. People who have difficulty sleeping almost universally report worsening of in somnia. In addition, many clinicians advise their patients who have been taking MAOIs to allow a longer than usual interval (up to 5 weeks) before taking Prozac. This drug's long half-life may also require a longer interval after discontinuation before starting new antidepressant treatments.
It is worth noting that Prozac has
received more than its share of publicity—good and bad—in recent
years. It has been praised as a miracle drug by some and labeled a
danger to society by others, capable of inciting homicidal and
suicidal rages. Although Prozac may have settled into its rightful
place in medicine—as a new and sometimes effective weapon against
depression, anxiety, obsessive-compulsive disorder, and bulimia—
its effectiveness in CFIDS is still open to debate. A recent
double-blind study conducted by Dr. J.H. Vercoulen of the University
Hospital of Nijmegen in The Netherlands concluded that fluoxetine (20
mg/day) had no beneficial effect on fatigue or any other symptoms of
CFIDS (Lancet, 1996). Despite conflicting reports, Prozac is still
one of the more frequent ly prescribed antidepressants.
AVAILABILITY AND COST. Prozac is
available in liquid to allow smaller doses. There is no generic
formulation. The cost can range from $10 to $100 per month, depending
on the dose prescribed. Insurance usually covers the cost.
FURTHER READING
Kramer, Peter. Listening to Prozac. New
York: Penguin Group, 1993 (a best-selling nonfictionbook).
Zoloft and Paxil
Zoloft (sertraline) and Paxil
(paroxetine) are two newer drugs that are similar to Prozac, but
because they are associated with fewer side effects, they may be more
easily tolerated. Both drugs have a shorter half-life than Prozac
does. Both have been used to treat CFIDS and have demonstrated
effectiveness in treating symptoms such as fatigue, cognitive
dysfunction, mood swings, pain, sleep disorders, and immune
dysfunction. One patient reported that after taking Paxil for 3
months she felt stronger and was sleeping better than she had for
years. Another patient believed Zoloft en abled her to recover enough
to seek part-time work. Along with Prozac, Zoloft is effective in
treating the depression that may accompany CFIDS. A few patients have
mentioned that they felt as bad while taking these drugs as they did
with other antidepressants, reminding us that many patients cannot
tolerate any of these drugs. For these patients, alternative
treatments have been suggested, including vitamins, amino acids,
herbs, and other complementary therapies.
MONOAMINE OXIDASE INHIBITORS
Nardil and Parnate
Nardil and Parnate
MAOIs are used much less frequently
than other antidepressants to treat CFIDS. The side effects
associated with Nardil (phenalzine) and Parnate (tranylcypromine) can
be severe. An additional drawback is the dietary restrictions that
accompany MAOI use. Foods that contain the amino acid tyramine (aged
cheese, yogurt, wine, avocado, among many others) must be avoided to
prevent severe hypertensive crisis. Because these foods are so
common, patients may find compliance difficult. Some patients with
CFIDS have found MAOIs effective. Others have reported ill effects.
One patient believed an MAOI may have contributed to a prolonged
relapse, producing even greater neurologic and cognitive problems
than she had experienced before.
OTHER ANTIDEPRESSANTS
Wellbutrin
Wellbutrin
Not a tricyclic antidepressant, SSRI,
or MAOI, Wellbutrin (bupropion) frequently is used to treat the
fatigue associated with CFIDS. Many physicians who specialize in the
treatment of CFIDS have prescribed Wellbutrin when Prozac or Zoloft
failed, and find it of great benefit in improving energy and
controlling mood. In some patients, Wellbutrin does not produce the
side effects noted with other antidepressants. The drug may be taken
alone or with other tricyclic antidepressants to improve sleep.
Because Wellbutrin is a nonsedating antidepressant, side effects can
be similar to those of Prozac (jitters, anxiety, insomnia). The
biggest drawback to the use of Wellbutrin is the risk of seizures.
PROTOCOL. The standard initial
prescribed dose is 75 mg daily. CFIDS patients may wish to start with
a lower dose to check for tolerance.
AVAILABILITY AND COST. A 1-month supply
costs about $24. Wellbutrin is not yet available in a generic
formulation.
Desyrel
Among the most sedating
antidepressants, Desyrel (trazodone) is often used to treat insomnia.
It is not, however, as helpful as many of the other antidepressants
in treating anxiety and depression in CFIDS. Some patients report
improved sleep with a low dose of Desyrel, but experience severe
orthostatic hypotension with higher doses. Side effects include
dizziness, nervousness, tremors, weakness, tinnitus, nausea, dry
mouth, constipation, sexual dysfunction, and sweating.
PROTOCOL. The prescribed dose in CFIDS
is generally 25 to 50 mg at bedtime.
AVAILABILITY AND COST. A 30-day supply
of the generic drug (50 mg) costs about $17.
Effexor
When approved for commercial use,
Effexor (venlafaxine) received a remarkable amount of publicity and
was touted as a newer and better Prozac. Effexor is chemically
unrelated to the other antidepressants and has a unique mode of
action, blocking serotonin, norepinephrine, and dopamine reuptake.
However, effects of the drug in CFIDS have been less than dramatic.
No patient in our survey noted any substantial improvement or
benefit. One patient felt more anxious and jittery. Another
complained of recurring cold sores, which disappeared when the drug
was discontinued. Dr. Jay Goldstein commented that, while Effexor may
have been marketed as "the best thing since sliced bread,"
his experience was to view it as another alternative treatment rather
than the most effective anti-depressant (CFIDS Chronicle, Physicians
Forum, Fall 1993). Dr. Goldstein reports nausea and hypertension as
possible side effects. As more CFIDS specialists experiment with this
drug, reports may be more favorable.
ANTIFUNCAL AGENTS
DEFINITION. Antifungal drugs are used
to treat Candida albicans infection and other fungal infections.
Nystatin
In the 1940s two scientists found a
bacterium in soil that could inhibit the growth of other molds
(including Candida albicans). They named the substance nystatin,
after New York State, where it was discovered. The drug was patented
in the 1950s and for the next 20 years nystatin was primarily used in
suppositories to treat vaginitis. It was popularized in the early
1980s when studies by several clinicians chronicled the successful
treatment of chronic candidiasis (systemic yeast infection) with
nystatin. Candidiasis produces extreme fatigue, depression, muscle
pain, and concentration problems, among other symptoms (see Chapter
3: Candida).
USES IN CFIDS. When many cases of what
was then called chronic Epstein-Barr virus infection (now CFIDS)
appeared in the 1980s, patients began searching for any effective
treatment for the symptoms that plagued them. The alternate diagnosis
of Candida infection, whether considered as the cause or an effect of
CFIDS, led many patients to experiment with antifungal regimens.
Although some physicians consider Candida treatments controversial
and without scientific basis, many CFIDS clinicians use nystatin and
other antifungal agents to treat CFIDS. Dr. Murray Susser and Dr.
Michael Rosenbaum, among other physicians, use antifungal medications
when symptoms of Candida infection are present along with a medical
history of antibiotic or steroid use that may have contributed to
Candida overgrowth. As an additional aid to determining whether an
antifungal regimen might be helpful, a number of physicians use blood
tests to measure Candida antibodies in the blood stream.
PROTOCOL. Many CFIDS physicians suggest
using the powdered form of nystatin, citing that it works better than
the pill form and is more pure (free of dyes or additives). The usual
dose is 500,000 to 1,000,000 units, four times a day. Lower doses may
be used initially to prevent die-off reactions. In Chronic Fatigue
Syndrome and the Yeast Connection, Dr. William Crook notes that
flush, fever, and agitation may indicate that the dose is too high.
Indications that the dose is too small include excessive fatigue,
cold, and achiness.
PROS AND CONS. Nystatin is considered
safe, with few side effects. A surprisingly large number of the
patients surveyed reported that nystatin (in combination with dietary
changes and nutritional supplements as part of Candida control) has
helped improve symptoms of CFIDS. Patients often report increased
energy, improved immune function, and better overall health after
taking nystatin. Some symptoms (thrush, gastrointestinal complaints)
respond quickly to treatment, but it can take weeks or months before
overall improvement is observed.
While a number of patients note steady
improvement over time, others experience no benefit after long trials
of nystatin, and still others are not able to tolerate the drug at
all. One patient reported an extreme allergic reaction to nystatin.
Those who have a negative reaction, however, can often tolerate other
antifungal medications. It is important to note that with antifungal
medications the phenomenon of "die-off" may create
problems; that is, as the antifungal medications kills the yeasts,
they secrete toxins into the body and symptoms may worsen initially.
Symptoms of die-off include increased fatigue, muscle aches, and
headaches. It can be difficult to differentiate between symptoms that
could be due to die-off, intolerance for the drug, or perhaps a "bad
CFIDS day."
AVAILABILITY AND COST. Nystatin is
available over the counter in suppository form to treat vaginitis and
is widely available in creams for topical use. It is available in
pill form by prescription at most pharmacies, but the powdered form
is difficult to find. Pharmacies that carry the powdered form are
Apothecary (800-869-9160) and Willner Chemists (800-633-1106). Pills
or powder may cost $30 to $50 a month. Insurance cover age varies.
Diflucan
Diflucan (fluconazole), an antifungal
introduced in the United States in 1990, is extremely valuable in
treating the life-threatening Candida infections that sometimes occur
in immunocompromised patients, such as those with AIDS (acquired
immunodeficiency syndrome) or advanced cancer.
Diflucan differs from nystatin in that
it is absorbed through the intestinal wall and traverses the blood
stream, thereby penetrating anywhere excessive yeast colonization is
found. Therefore, in theory at least, Diflucan may be more beneficial
than nystatin to treat systemic or pervasive yeast infections.
USES IN CFIDS. Many clinicians have
found Diflucan beneficial for treating CFIDS symptoms. A respected
CFIDS specialist, Dr. Carol Jessop, a one-time skeptic of Candida as
a symptom of CFIDS, has used antifungal therapies when patients have
symptoms suggestive of Candida overgrowth. She has stated that,
although other agents may be of benefit, Diflucan was her treatment
of choice. Dr. Jessop found that because Diflucan penetrates the
central nervous system, her patients experienced improvement in
cognitive problems. This was not the case with nystatin or Nizoral.
Dr. Jay Goldstein, on the other hand, has reported only limited
success with Diflucan. He prescribes it chiefly to treat gastric
disturbances (CFIDS Chronicle, Physician's Forum, Spring 1991).
PROTOCOL. Some physicians prescribe 200
mg for 1 week, followed by 100 mg for 3 to 6 weeks. A reevaluation is
recommended after that time.
PROS AND CONS. Diflucan is usually well
tolerated. The principal side effects are nausea and other
gastrointestinal complaints. It works very quickly and patients will
usually see improvement within a few days to weeks. Diflucan is
extremely expensive, thereby prohibitive for some pa tients.
AVAILABILITY AND COST. Diflucan is
available by prescription. The cost may range from $250 to $600 a
month, depending on the dosage. Insurance plans usually cover the
cost (if your insurance does not include Diflucan to treat CFIDS, you
may qualify for a compassionate free supply; contact Pfizer, Inc.,
Roerig Division; 800-869-9979).
Nizoral
Nizoral (ketoconazole) is somewhat
similar to Diflucan but is used less frequently because of its
serious side effects, including liver toxicity and endocrine system
disturbances. Although the drug is effective and inexpensive, many
physicians are cautious about prescribing it. Patients taking Nizoral
generally undergo blood tests, including liver profile, every 30
days. Nizoral is available by prescription. A 30-day supply generally
costs about $30.
Sporanox
Sporanox (itraconazole), the newest
antifungal drug to be approved by the PDA, is rapidly gaining
popularity as an effective antifungal agent. Like Diflucan and
Nizoral, Sporanox is used to treat systemic Candida overgrowth. It is
slightly less expensive than Diflucan and, because it is less toxic
to the liver, is safer than Nizoral. Sporanox also is used to treat
infections that are resistant to other therapies. Some patients who
have found little benefit from Diflucan have noted improvement with
Sporanox. The drug is generally well tolerated. The most common side
effects are transient nausea and headache. Doses range from 100 to
200 mg/day. The cost is $135 to $200 a month, depending on the
prescribed dosage. Because the capsules contain chemical dyes,
patients with chemical sensitivities can place the Sporanox in a
dye-free capsule.
ANTIHISTAMINES
DEFINITION. Antihistamines are a class
of drugs that appear to compete with histamine for cell receptor
sites on effector cells, thereby blocking the effects of histamine.
BACKGROUND. Antihistamines have been
used for many years to treat allergies and allergic reactions. Some
antihistamines are also used to treat motion sickness and mild
Parkinson's disease.
USES IN CFIDS. Because many patients
with CFIDS have allergies (usually preceding but sometimes developing
after the onset of CFIDS), antihistamines are often prescribed for
relief of seasonal and general symptoms. Antihistamines are also of
benefit in treating many other symptoms of CFIDS, including insomnia,
bladder problems (interstitial cystitis), anxiety, and muscle pain.
Benefits are noted rapidly, usually within 24 hours to a few weeks.
The side effects produced by antihistamines are generally minor,
although some patients with CFIDS report heart palpitations.
Claritin and Hismanal
Claritin (loratadine) and Hismanal
(astemizole) are useful in the treat ment of the symptoms of seasonal
allergies, such as runny nose, sneezing, itching, and watery eyes.
They have the distinction of being nonsedating, which may be of value
in some patients with CFIDS. Some patients have reported that,
although they are usually sensitive to medications, Claritin has
brought great relief from hay fever symptoms, without adverse
effects.
AVAILABILITY AND COST. Claritin and
Hismanal are available by prescription, and generally cost about $60
to $65 for a 30-day supply. Claritin (10 mg) is one of the most
expensive antihistamines, at about $70 for a 30-day supply. Insurance
plans usually cover prescription antihistamines.
Benadryl
Benadryl (diphenhydramine) is useful
for treating hives, seasonal allergies, upper airway congestion, and
severe allergic reactions (anaphylactic shock). The drug is very
sedating and can be used as a sleep aid for CFIDS-related insomnia if
taken at bedtime. Like the other antihistamines, Benadryl is not
addictive, and thus may offer a good alternative to habit-form ing
sleeping pills. However, as Dr. David Bell points out in The Doctor's
Guide to Chronic Fatigue Syndrome, Benadryl can lose effectiveness
with continuous use for longer than a few weeks and therefore may be
better used only occasionally. One woman noted that, although
Benadryl ensures a good night's sleep, she rotates it with a
benzodiazepine so that she does not develop a tolerance to either
drug (see Benzodiazepines). Although Benadryl is generally well
tolerated, adverse reactions (notably agitation and tachycardia) have
been reported. It is important to check with a physician before
trying it, especially if you are prone to heartbeat irregularities.
Benadryl is inexpensive, costing less
than $10 per bottle or package. It is also available as a dye-free
pill and in liquid form, which may be of benefit to CFIDS patients
with chemical sensitivities. Benadryl can be purchased without a
prescription.
Chlor-Trimeton
A patient with long-term CFIDS wrote of
her positive experience using Chlor-Trimeton (chlorpheniramine
maleate) (CFIDS Chronicle, Winter 1994). She reported that a dose of
2 mg improved her sleep and she felt "less miserable in the day.
There was less aching, less fatigue, a little more mental clarity."
After the drug effect reached a plateau, she increased the dose and
noticed that all her symptoms improved, not just sleep distur bances.
Other patients have also reported similar benefits. Chlor-Trimeton is
available over the counter.
Atarax and Vistaril
Atarax and Vistaril (hydroxyzine) have
a wide range of uses in treating CFIDS symptoms. Dr. Paul Cheney
prescribes Vistaril to treat muscle pain (CFIDS Chronicle, Spring
1995). Two physicians who specialize in treating interstitial
cystitis, Dr. Grannum Sant and Dr. Theoharis Theoharides of Tufts
University, have published several papers detailing the effectiveness
of Atarax and Vistaril. Dr. Theoharides noted that several patients
given hydroxyzine experienced improvement in urinary frequency and
bladder pain. He theorizes that this drug may inhibit secretion of
mast cells, a type of cell involved in allergic reactions that may be
responsible for many symptoms in interstitial cystitis. Dr.
Theoharides states that other antihistamines do not seem to be
effective in treating interstitial cystitis (Seminars in Urology,
1991). The initial dosage is 25 mg a day, which can be slowly
increased to 100 mg. Daytime sedation, the most common side effect,
generally disappears in a few days.
Because Atarax and Vistaril are not a cure for interstitial cystitis, symptoms often recur after discontinuation of the drug. However, the success rate is high and the risks low, compared with many other invasive therapies for interstitial cystitis. Several of our survey respondents have used Atarax to treat bladder problems, with good results. One patient, however, could not tolerate the sedative effect and another reported that she developed an intolerance to Atarax after a few months. Another patient reported that the drug simply stopped working after several months.
Because Atarax and Vistaril are not a cure for interstitial cystitis, symptoms often recur after discontinuation of the drug. However, the success rate is high and the risks low, compared with many other invasive therapies for interstitial cystitis. Several of our survey respondents have used Atarax to treat bladder problems, with good results. One patient, however, could not tolerate the sedative effect and another reported that she developed an intolerance to Atarax after a few months. Another patient reported that the drug simply stopped working after several months.
AVAILABILITY AND COST. Atarax and
Vistaril are available by prescription, in brand-name or generic
formulations. These drugs are inexpensive. Thirty tablets of the
lowest strength (10 mg) generic drug costs about $6.
Antivert
Antivert (meclizine) is used to treat
vertigo, dizziness, and motion sickness. In CFIDS, it is frequently
prescribed to treat vertigo associated with CFIDS as well as balance
problems, nausea, motion sickness, and Meniere's disease. Antivert is
safe to use. The most common side effect is excessive sedation.
Brand-name or generic formulations are available by pre scription.
The usual dosage is 25 mg one to three times a day. The cost, about
$10 a month, is covered by most health insurance plans.
ANTIVIRAL AGENTS
DEFINITION. Antiviral agents are a
group of drugs used to inhibit the replication of viruses.
Acyclovir
In the early 1980s, acyclovir (Zovirax)
was hailed as one of the first drugs proven effective against genital
herpes. Although later shown to be not as universally helpful as
researchers first thought, acyclovir does re lieve the severity,
duration, and frequency of outbreaks for many patients with genital
herpes. Acyclovir is not a cure for the infection because it does not
kill the virus but merely inhibits its ability to replicate. In
addition to treating herpesvirus, which causes genital herpes,
acyclovir has been used with some success to treat other types of
herpesvirus infections, such as chickenpox (varicella zoster virus),
shingles (herpes zoster), cytomegalovirus (CMV), and infectious
mononucleosis (Epstein-Barr virus), among others.
USES IN CFIDS. In the mid-1980s,
Epstein-Barr virus was thought to be the cause of the illness now
known as CFIDS. Because Epstein-Barr virus is one of the
herpesviruses, it was logical for acyclovir to be used to treat cases
of what was then called chronic Epstein-Barr virus or chronic
mononucleosis. At that time, physicians using acyclovir noted
symptomatic improvement in many of their patients. However, the first
formal study was not completed until 1988, when Dr. Steven Straus of
the National Institutes of Health (NIH) headed a double-blind,
placebo-controlled study to determine the effectiveness of acyclovir
against CFIDS. Dr. Straus' results revealed no difference between the
placebo group and patients given acyclovir (New England Journal of
Medicine, 1988). Notwithstanding these inconclusive results, many
physicians familiar with CFIDS continue to prescribe acyclovir,
citing both their success rate and the flawed methods of Dr. Straus'
study as justifications. Dr. Charles Lapp, for example, reported
"remarkable results with this medication." Other physicians
also recommend acyclovir, especially in the presence of high titers
of herpesvirus, recurrent shingles, or other clinical evidence of
viral infection (CFIDS Chronicle, Spring 1991).
PROTOCOL. The oral form is most
commonly recommended because intravenous injections carry some risk
of toxicity. Daily doses range from 800 to 4000 mg divided throughout
the day. Topical creams or ointment can be applied directly to the
skin to treat surface blisters and other lesions. Despite the
associated risks, patients with acute infections may require
intravenous administration. Because resistance can develop, 30- to
60-day intervals between courses of therapy are recommended to ensure
continued effectiveness.
PROS AND CONS. Acyclovir, while not a
cure for CFIDS, may lessen the viral load in patients with CFIDS who
demonstrate a lot of viral activity (high titers of herpesvirus,
recurrent flu-like symptoms, shingles). A number of patients with
CFIDS have reported success with acyclovir in controlling shingles
and eliminating chronic sore throat. In their book, CFIDS, An Owner's
Manual, Barbara Brooks and Nancy Smith reported success with
acyclovir, claiming it to be the most important component of their
respective treatments. Positive results are far from universal,
however. An equal number of patients with CFIDS report little or no
benefit, even after months of trial. For those who do receive some
benefit, the results are generally short-lived. Many patients must
take the drug daily to see any re sult at all. Acyclovir, although
usually well tolerated, produces some com mon side effects, notably
lightheadedness, nausea, and headache. Patients with kidney disease
should not take acyclovir.
AVAILABILITY AND COST. Oral acyclovir
is available by prescription. Because a generic formulation is not
available, the drug is quite costly. Depending on the prescribed
dose, a month's supply may cost upward of $200 or $300. Insurance
plans sometimes cover the cost (Burroughs-Wellcome, the manufacturers
of Zovirax, have a program for patients without insurance or with
other financial hardship; call 800-722-9294 for information).
Famvir
Famvir (famcyclovir) is a newly
approved medication with antiviral activity against herpesviruses,
particularly herpesviruses 6 and 7, two viruses that play an
important role in CFIDS. Technically, Famvir is a prodrug; that is, a
substance that is converted into an active drug once in the body.
Famvir functions the same as Zovirax, but with fewer side effects.
There is some indication that it may be more effective, as well.
Currently, only a few CFIDS clinicians prescribe Famvir so not much
information is available as to its effectiveness in treating CFIDS.
Famvir is available by prescription. This drug is expensive. A 1
-month supply can cost as much as $500, de pending on the dosage.
Amantadine
Amantadine (Symmetrel) is prescribed
for viral infections (type A influenza virus) and Parkinson's
disease. It acts by blocking the penetration of cell membranes by the
infectious material from viruses. As an antiviral agent, it is of no
benefit unless administered at the onset of infection. In patients
with CFIDS who cannot tolerate flu shots, amantadine might be a good
alternative, especially for those patients susceptible to frequent
episodes of influenza. In CFIDS, its most common use is not as an
antiviral agent but as a stimulant. It is used to treat fatigue and
lethargy in mild cases. Common side effects include insomnia,
confusion, headaches, and dizziness. Amantadine interacts with
antidepressants and antihistamines. Some patients with CFIDS cannot
tolerate this drug so the initial dose should be small. Amantadine is
available by prescription. A 1-month supply of the generic amantadine
costs approximately $12.
BENZODIAZEPINES
DEFINITION. Benzodiazepines are central
nervous system depressants.
BACKGROUND. The benzodiazepines are a
group of drugs used to treat anxiety, skeletal muscle spasm,
insomnia, and panic. Their calming effect is produced by a general
slowing of the central nervous system. Within a decade of their
introduction on the market, they had become one of the most
frequently prescribed medications in the United States and, by the
late 1980s, more than 10% of the U.S. population had taken some form
of tranquilizer.
Although the benzodiazepines do not
pose as many problems as the major tranquilizers, they too produce
tolerance and dependence if used over a long period of time.
Benzodiazepines can be classified into two main groups, depending on
their half-life (how long it takes to clear half the drug from the
body). In general, the shorter acting benzodiazepines (with a
half-life of 4 to 20 hours) are more habit forming than those with a
longer half-life (24 to 72 hours). In cases where dependence
develops, doses should be tapered off slowly to avert withdrawal
symptoms (anxiety, jitters, insomnia, confusion, sweating, heart
palpitations, and depression).
USES IN CFIDS. The benzodiazepines are
frequently prescribed, often in combination with a small dose of
antidepressant, to treat insomnia. The logic behind prescribing both
drugs is that one gets you to sleep and the other keeps you asleep.
The majority of CFIDS physicians also recommend some form of
benzodiazepine for patients with panic disorder or agitation due to
upregulation of the sympathetic nervous system. It is important to
note that benzodiazepines are usually prescribed in small doses to
treat CFIDS. Normal doses of these drugs can produce paradoxical
reactions, creating the very symptoms the drug is supposed to
control. Even tiny doses can produce adverse reactions in patients
hypersensitive to chemicals and drugs. It may be worthwhile to do a
toothpick test (crush the pill and take only what clings to the end
of a moistened toothpick) before embarking on a full program.
Klonopin
Klonopin (in Canada, Rivotril)
(clonazepam) acts directly on the limbic system, thalamus, and
hypothalamus to produce anticonvulsant effects. It has been used
since the late 1970s to control seizures. Klonopin is easily absorbed
through the digestive tract and has a half-life of 24 to 72 hours.
Effects are noticeable within 20 minutes and can last for 12 hours.
USES IN CFIDS. Klonopin is the most
widely recommended benzodi azepine for patients with CFIDS. It is
usually taken in conjunction with Sinequan to control insomnia. A
number of patients have reported that Klonopin helps improve
cognitive symptoms, particularly poor concen tration and "brain
fog." Some patients also report that Klonopin helps al leviate
flu-like achiness.
PROTOCOL. The dose recommended to treat
CFIDS-related insomnia is low, generally 0.5 to 1 mg taken before
bedtime.
PROS AND CONS. The side effects of
Klonopin are mild, especially compared to those of some of the other
benzodiazepines. Some patients with CFIDS, however, experience
sedation, excessive thirst, depression, and gastrointestinal upset
even with small doses. If taken for longer than a month, Klonopin
should not be discontinued suddenly. On the posi tive side, Klonopin
appears to be well tolerated by many patients with CFIDS.
AVAILABILITY AND COST. Klonopin is
available by prescription. A 30-day supply of the generic drug
(clonazepam, 0.5 mg) costs about $24. The cost is usually covered by
insurance (but check for time limitations).
Valium
Valium (diazepam), an antianxiety drug,
was introduced in the United States in 1963. It acts by depressing
the area of the central nervous system that controls the emotions
(limbic system). It is also used as an anticonvulsant in patients
with epileptic seizures and to relieve skeletal muscle spasms. Side
effects from long-term use can include depression, drowsiness,
lethargy, fainting, slurred speech, tremor, blurred or double vision,
gastrointestinal disorders, nausea, and respiratory depression. It
has a half-life of 20 to 50 hours. Onset occurs within 30 minutes to
an hour, with peak action in 1 to 2 hours.
USES IN CFIDS. Valium is less
frequently recommended than Klo nopin, nevertheless some people have
found it to be very effective. In most cases, Valium is used for
insomnia. It is taken just before bed. As with Klonopin, it should be
taken at the lowest possible dose. If side effects or tolerance
develop, Valium should be eliminated by slowly tapering off the dose.
AVAILABILITY AND COST. Valium is
available by prescription. A 1-month supply (30 tablets) of the
generic drug at the lowest dose (2 mg) costs about $11.
Xanax
Xanax (alprazolam) was introduced in
1982 to treat anxiety, muscle spasms, and insomnia. It is also widely
prescribed to treat panic attacks, agitated depression, and phobias.
Xanax is more rapidly metabolized and eliminated than other
benzodiazepines and causes less "hangover." It has a
half-life of 12 to 15 hours, rapid onset (about 15 minutes), and its
peak ac tion occurs within 1 to 2 hours.
USES IN CFIDS. Because Xanax acts so
quickly, it is usually recom mended to treat panic and anxiety
attacks. It is not often prescribed for persistent insomnia, although
it may be recommended on a short-term, Xanax should be taken at the
lowest possible dose. It is not recommended as a daily medication,
but only as needed to alleviate the effects of panic or anxiety due
to overactive nervous system responses.
AVAILABILITY AND COST. Xanax is
available by prescription. It is in expensive; a supply of 30 tablets
of the generic drug at the lowest dose (0.25 mg) costs about $7
BETA BLOCKERS
DEFINITION. Beta blockers slow heart
activity by interfering with adrenal hormones.
BACKGROUND. Beta blockers are used
primarily to treat angina and high blood pressure and to control
irregular heartbeat in damaged hearts. They can also be used to
prevent migraine headaches, control ocular fluid pressure, and reduce
anxiety. Beta blockers work by occupying the specific receptors in
the heart, airways, and blood vessels (beta: and beta2 adrenergic
receptors) designed to receive the stimulating neurohormone,
norepinephrine. By preventing the action of norepinephrine, beta
blockers reduce the force and rate of heartbeats and prevent dilation
of blood vessels surrounding the brain and of the airways leading to
the lungs. The action of most beta blockers makes them useful for
treating neurally mediated hypotension (NMH), an abnormal reflex
interaction between the heart and brain. Patients with NMH experience
sudden drops in blood pressure, leaving them feeling faint and weak.
Beta blockers are used to help main tain constant blood pressure in
NMH.
USES IN CFIDS. Beta blockers have been
prescribed to treat idiosyn cratic heart problems (palpitations,
mitral valve prolapse, and rapid or irregular heartbeat) and, in some
circumstances, anxiety and headaches. Beta blockers are also used to
treat low blood pressure common in CFIDS because researchers at Johns
Hopkins University have published findings that seem to demonstrate a
link between CFIDS and NMH. Although NMH does not cause CFIDS,
treating it may help to alleviate some of the more troubling symptoms
of CFIDS.
PROTOCOL. The beta blockers recommended
in NMH are propranolol and atenolol (Tenormin). These are normally
prescribed as part of a program that includes increased intake of
dietary salt and Florinef (fludrocortisone), a steroid drug (see
Florinef). Beta blockers should not be taken with any food, drug, or
other medication that contains caffeine or alcohol because the
combination may increase heart rate or blood pressure.
PROS AND CONS. Recently, a Johns
Hopkins University study has created quite a stir in the CFIDS
community (Journal of the American Medical Association, 1995). Of the
22 patients with CFIDS and NMH treat ed in this study, nine reported
full recovery and seven noted some improvement. (However, not all of
these patients received beta blockers; some were given only
Florinef.) These initial results were encouraging. However, symptoms
of CFIDS do not always respond favorably to beta blockers. Some
patients report little or no effect and others observe that symptoms
have actually worsened. Moreover, long-term and severe cases have not
shown substantial improvement using this regimen.
Beta blockers can cause orthostatic
hypotension (the feeling of fainting on standing), fatigue,
dizziness, lightheadedness, depression, and headaches. In at least
one patient with CFIDS, the beta blocker Sectral (acebutolol) caused
NMH to progress to postural orthostatic tachycardia syn drome (POTS),
a much more serious disorder, which left him bedridden for months. An
additional consideration for those who have taken beta blockers for a
long period of time is that the drug should not be discontinued
suddenly but should be tapered off gradually over several weeks to
avert irregularities in heart rate. People with poor circulation in
the arms and legs, a frequent problem in CFIDS, are also cautioned
not to take beta blockers because these drugs make the problem worse.
AVAILABILITY AND COST. Beta blockers
are available by prescription. The cost ranges from $10 to $30 a
month and usually is covered by insurance.
CALCIUM CHANNEL BLOCKERS
(Nicardipene, Nimodipine, Nifedipine,
Verapamil)
DEFINITION. Calcium channel blockers
inhibit the transmembrane influx of calcium ions into cardiac and
smooth muscle.
BACKGROUND. Calcium channel blockers
work by preventing calcium ions from entering smooth muscle cells.
Calcium is especially impor tant for the functioning of these cells
and specialized cells in the heart. When calcium levels are lowered,
the result is a relaxation of blood vessels, allowing an increased
supply of blood and oxygen to the heart while decreasing its work
load. As a consequence of their effect on blood vessels, calcium
channel blockers are useful in treating cardiovascular disorders,
such as angina (chest pain) and coronary artery disease, and to lower
blood pressure. These drugs also may improve exercise capacity and
subsequently reduce the need for surgery in patients with cardiac
problems.
USES IN CFIDS. At the 1990 CFIDS
conference in Los Angeles, Dr. Ismael Mena presented evidence of
cerebral dysfunction in patients with CFIDS. Using neurologic
spectroscopic scanning techniques, Dr. Mena re ported that 71% of
CFIDS patients have low blood flow (hypoperfusion) in the temporal
lobe of the brain. He further reported that after treatment with
calcium channel blockers, some of these patients exhibited clinically
improved cerebral blood flow (CFIDS Chronicle, Spring/Summer 1990).
A number of CFIDS clinicians have noted
improvement in cognitive function in patients given calcium channel
blockers. Cardene also is helpful in treating migraine-type
headaches. Dr. Jay Goldstein also observed improvements in cognitive
function and energy level in patients given calcium channel blockers.
He has also noted increased exercise tolerance, de creased tender
point sensitivity, and alleviation of panic disorder with nimodipine.
In October 1994, Dr. Robert Keller, Medical Director of the Center
for Special Immunology in Miami, reported improvement of symptoms in
25 patients with CFIDS after treatment with the calcium channel
blocker verapamil. Within 1 month of finding the optimal dose of
verapamil, patients reported improvement in fatigue, memory, and
myalgia. Dr. Keller also reported a decrease in the number of
activated T cells, demonstrating that calcium channel blockers may
have some immunomodulatory properties.
PROTOCOL. The most commonly prescribed
calcium channel block ers in patients with CFIDS are nimodipine,
nicardipene, and verapamil. Doses must be individualized for each
patient, but generally are quite low:
- Nimodipine 30 mg, 2 or 3 times daily
- Nicardipene 20 mg, 2 or 3 times daily
- Verapamil 120 to 240 mg, taken nightly
PROS AND CONS. Symptomatic relief can
be obtained quickly with calcium channel blockers; therefore a trial
is often worthwhile in many cases, even in the absence of a
single-photon emission computed tomography (SPECT) scan. Improved
cognitive function, fewer headaches, increased energy, and decreased
muscle spasms have all been reported with use of these drugs.
Although calcium channel blockers can be effective for some of the
more problematic CFIDS symptoms (cognitive dysfunction), side effects
can be a problem. The most common are lowered blood pressure (which
can be serious if blood pressure is already low), severe pressure
headaches, dizziness, gastrointestinal problems (diarrhea,
constipation), and weakness. In addition, hypertensive effects can be
exaggerated by concomitant use of other drugs that affect blood
pressure, such as beta blockers. Tagamet (cimetidine) also increases
the effects of calcium channel blockers. The use of calcium channel
blockers requires close supervision by a physician.
AVAILABILITY AND COST. Calcium channel
blockers are available by prescription. Nimodipine is expensive,
costing almost $5 per pill, or more than $300 a month. Nicardipene
and verapamil are much less expensive, about $30 a month.
CENTRAL NERVOUS SYSTEM STIMULANTS
(Cylert, Ritalin, Dexedrine, Lonamin)
DEFINITION. Central nervous system
(CNS) stimulants are a class of drugs that, much like the
amphetamines, speed CNS responses by releasing stored norepinephrine
from nerve terminals in the brain.
BACKGROUND. Prescription CNS stimulants
were first promoted in the 1950s as a treatment for hyperactivity,
attention deficit disorder (ADD), and narcolepsy. They also gained
popularity as weight-loss drugs. Although routinely prescribed for
children with ADD, the use of CNS stimulants in children has been the
focus of much controversy since the 1980s, when they received a great
deal of adverse publicity.
USES IN CFIDS. CNS stimulants are
generally used to increase energy and cognitive function in CFIDS.
The drugs most commonly recommended for CFIDS patients are Cylert (pemoline) and Ritalin (methylphenidate), although Dexedrine (dextroamphetamine) is also sometimes prescribed, Lonamin (phentermine), a mild CNS stimulant that activates dopamine in the brain, is sometimes recommended in CFIDS patients with hypersomnia or significant cognitive impairment. The mild stimulation induced by a low dose of any of these drugs can often dispel feelings of lethargy and "brain fog" and, because effects are so immediate, they can act as a "quick fix" in an emergency. While there is great appeal in seeing immediate improvement in energy levels and cognitive function, most CFIDS clinicians prescribe these drugs with caution. A number of CFIDS clinicians believe that the disabling fatigue of CFIDS may be a protective mechanism. Therefore, creating energy artificially may in the long run cause relapse and may even exacerbate the disease process.
The drugs most commonly recommended for CFIDS patients are Cylert (pemoline) and Ritalin (methylphenidate), although Dexedrine (dextroamphetamine) is also sometimes prescribed, Lonamin (phentermine), a mild CNS stimulant that activates dopamine in the brain, is sometimes recommended in CFIDS patients with hypersomnia or significant cognitive impairment. The mild stimulation induced by a low dose of any of these drugs can often dispel feelings of lethargy and "brain fog" and, because effects are so immediate, they can act as a "quick fix" in an emergency. While there is great appeal in seeing immediate improvement in energy levels and cognitive function, most CFIDS clinicians prescribe these drugs with caution. A number of CFIDS clinicians believe that the disabling fatigue of CFIDS may be a protective mechanism. Therefore, creating energy artificially may in the long run cause relapse and may even exacerbate the disease process.
PROTOCOL. Dosage varies according to
the individual needs of the patient, as determined by a physician.
Patients with CFIDS, however, are advised to start with the smallest
dosage to avert the negative effects of overstimulation. Dexedrine,
for example, is prescribed at the lower than usual dose of 5 to 10
mg. Lonamin dosage varies between 15 and 30 mg (taken in the
morning).
PROS AND CONS. Stimulants, while
appearing to provide more energy, tax the system. As a consequence,
they are beneficial only if the system is strong to begin with.
Whereas CNS stimulants have been effective in some patients, they are
of modest to little benefit for others. Some patients even report
feeling much worse. It appears that the less ill the patient the
better the response. The boost received from these drugs may enable
patients with mild symptoms to work full-time or part-time. One
patient surveyed, in fact, believed Cylert had been the only
medication he had tried in 3 years that had had any beneficial
effect.
Most people use Cylert and Ritalin only "as needed" to provide extra energy on particularly long or important days. The most common side effects are anxiety, excitation, insomnia, gastrointestinal problems, dizziness, headache, palpitations, dry throat, appetite loss, and hypertension. As with other medications that affect the CNS, some patients experience a paradoxical reaction of extreme fatigue and weakness. Drug interactions are numerous, including anti-depressants (especially MAOIs), anticonvulsants, and caffeine. As with MAOIs, foods high in tyramine should be avoided (see Chapter 3: Urinary Tract Problems, Cystitis). CNS stimulants are contraindicated in patients with cardiovascular disease or hyperthyroidism.
Most people use Cylert and Ritalin only "as needed" to provide extra energy on particularly long or important days. The most common side effects are anxiety, excitation, insomnia, gastrointestinal problems, dizziness, headache, palpitations, dry throat, appetite loss, and hypertension. As with other medications that affect the CNS, some patients experience a paradoxical reaction of extreme fatigue and weakness. Drug interactions are numerous, including anti-depressants (especially MAOIs), anticonvulsants, and caffeine. As with MAOIs, foods high in tyramine should be avoided (see Chapter 3: Urinary Tract Problems, Cystitis). CNS stimulants are contraindicated in patients with cardiovascular disease or hyperthyroidism.
AVAILABILITY AND COST. CNS stimulants
are available by prescription, either as brand-name or generic drug.
Most are inexpensive. Cylert and Ritalin, for example, cost $20 to 50
per month. Insurance usually re imburses the cost.
CYTOTEC
DEFINITION. Cytotec (misoprostol) is a
synthetic prostaglandin El analogue that replaces depleted gastric
prostaglandins.
BACKGROUND. Cytotec is routinely used
to prevent gastric ulcers in elderly or debilitated patients who are
receiving nonsteroidal anti-inflammatory drug (NSAID) therapy. In
these patients, the action of natural prostaglandins (hormone-like
substances that regulate inflammation, blood vessel dilation, and a
host of other physiologic responses) are blocked.
USES IN CFIDS. Cytotec is primarily
recommended for patients suffering from leaky gut. It is believed the
drug actually helps "patch" the damaged lining of the small
intestine, thereby reducing symptoms associated with food
sensitivities.
PROTOCOL. Physicians recommend taking
four 100 ug tablets a day (one with each of three meals and one
before bedtime). When reducing dosage, the bedtime dose should be the
last tablet eliminated.
PROS AND CONS. Cytotec has relatively
few side effects. Many pa tients who have tried Cytotec report an
increase in the number of foods they can tolerate and a decrease in
related gastrointestinal symptoms. One patient with severe food
intolerance noted sustained improvement even after eventually
discontinuing Cytotec. The most common side effects are diarrhea,
flatulence, nausea, headache, and, rarely, vaginal bleeding. If side
effects last longer than a week or are severe, the dosage should be
lowered. Cytotec is contraindicated in pregnant women because it may
induce miscarriage.
AVAILABILITY AND COST. At the highest
recommended dosage (four per day), a month's course of Cytotec costs
about $108. Cytotec is available by prescription and the cost is
covered by most insurance plans. Uninsured patients may meet the
manufacturer's criteria for its "Patients in Need" program
and qualify for a free supply (contact Searle, 5200 Old Orchard Rd.,
Skokie, IL 60077; 800-542-2526).
DIAMOX
DEFINITION. Diamox (acetazolamide) is a
diuretic drug.
BACKGROUND. Diamox was introduced in
1953 as a diuretic. Because it reduces intraocular pressure, it is
used to treat glaucoma and can also be used to treat edema,
high-altitude sickness, and as an anticonvulsant. Diamox blocks the
action of carbonic anhydrase, an enzyme that helps form hydrogen and
bicarbonate ions from carbon dioxide and water. It promotes excretion
of sodium, potassium, water, and bicarbonate. By blocking carbonic
anhydrase in the central nervous system and increasing carbon dioxide
tension, Diamox also helps decrease abnormal neuronal discharge that
may lead to convulsions.
USES IN CFIDS. Because it increases
cerebral blood flow, Diamox is used to treat cognitive dysfunction,
as well as pressure headaches and balance problems. Patients taking
Diamox often report increased energy.
PROTOCOL. Diamox usually is prescribed
at 250 mg to be taken two or three times a day. As with other
medications, however, physicians sometimes wish to begin with a lower
dose. Because Diamox is a diuretic, potassium supplementation or
potassium-rich foods (bananas and apricots) may be necessary. Diamox
can be taken with food to lessen the chance of nausea or stomach
irritation.
PROS AND CONS. For severe,
hard-to-treat cognitive problems, Diamox can be a real boon. Diamox
acts quickly; therefore, a long trial is not necessary. On the
negative side, it can create metabolic acidosis, weakness, skin
tingling, loss of appetite, and near-sightedness; may cause allergic
reactions in persons allergic to sulfa drugs; and may activate gout
or cause syndromes similar to lupus if taken for extended periods.
Diamox can potentiate the effects of tricyclic antidepressants.
AVAILABILITY AND COST. Diamox is
available by prescription only. It is inexpensive. A 1-month supply
costs $11 (generic drug) and $35 (brand-name drug).
FLEXERIL
DEFINITION. Flexeril (cyclobenzaprine)
is a muscle relaxant used to treat pain and skeletal muscle spasms.
BACKGROUND. Flexeril is closely related
to the tricyclic antidepressants such as Elavil and Tofranil. It
blocks nervous system impulses from the spinal cord to skeletal
muscle.
USES IN CFIDS. Flexeril is a commonly
prescribed medication that can be extremely beneficial in treating
the fibromyalgia component of CFIDS. It may also help treat insomnia
because it is sedating.
PROTOCOL. For muscle pain, 10 mg one to
three times a day is recom mended. To treat insomnia, take 5 to 10 mg
at bedtime.
PROS AND CONS. Flexeril is an older
drug with a good safety record and minimal side effects. The most
common side effects are excess sedation and dry mouth. Flexeril is
most useful during episodes of muscle or back pain. In addition, it
may relieve insomnia in persons unable to tolerate other sleep
medications. Flexeril is not addictive, as is the case with many
sleeping pills, but it may lose its effectiveness over time. Flexeril
is contraindicated in patients who have taken an MAOI within 14 days,
have a history of heart arrhythmias, or are taking anticholinergic
drugs because of its adverse anticholinergic effects.
AVAILABILITY AND COST. Flexeril is
available by prescription, in ge neric or brand-name formulations.
The drug is inexpensive. A 1-month supply is $20 and is covered by
most insurance policies.
FLORINEF
DEFINITION. Florinef (fludrocortisone)
is the acetate salt of a synthet ic steroid with a mineralocorticoid
activity.
BACKGROUND. Florinef was developed to
help the body retain salt, which otherwise would be passed in the
urine. Because it has mineralocorticoid activity, its effects are
limited to regulation of electrolyte and water balance. It has none
of the anti-inflammatory effects of prednisone and no effect on blood
sugar levels, as does cortisone.
USES IN CFIDS. Florinef has received
considerable attention as a CFIDS medication as a direct result of
the highly publicized Johns Hopkins study of neurally mediated
hypotension (NMH). In NMH, sudden decrease in blood pressure leads to
fainting (syncope), lightheadedness, trouble concentrating, and
dizziness. As nearly all of the CFIDS patients in the Johns Hopkins
study tested positive for NMH, researchers have been hopeful about
treatments that would address this particular symptom. Florinef,
because of its ability to increase sodium retention, helps to raise
blood pressure. In so doing, many symptoms associated with decreased
blood pressure can be relieved.
PROTOCOL. A full dose of Florinef is
one 0.1 mg tablet taken nightly. Most physicians currently working
with CFIDS patients recommend starting at a low dose (one fourth
tablet for four consecutive nights) to avert any possible drug
reactions. The dose can be increased incrementally to a half tablet
for 4 days, three fourths of a tablet for 4 days, and finally a full
tablet. One patient noted that Florinef must be taken exactly every
24 hours or symptoms return; thus a rigid schedule is advised once
the med ication is started.
A potassium supplement is advised
because Florinef causes the body to excrete more than the usual
amount of potassium. In addition, plenty of fluids should be consumed
while taking this medication. The side effects of headache or
stomachache can be lessened when Florinef is taken with a full glass
of water. The small amount of lactose in Florinef may cause some
discomfort to those who are lactose intolerant or allergic to milk
protein.
PROS AND CONS. Although Florinef has
been highly touted as a broad-spectrum CFIDS treatment, CFIDS
specialists have pointed out that the overall success rate is not
high with this drug.
Florinef can produce serious side
effects, the most common of which are high blood pressure and
depression. Some patients experience such se vere side effects that
treatment with Florinef becomes untenable. Midodrine (Amatine), a
newly approved drug, has proved effective in treating orthostatic
hypotension. However, patients in a double-blind study also
experienced significant numbers of adverse effects (Journal of the
Ameri can Medical Association, 1997). Although midodrine is not
widely used in the CFIDS community, a few patients have reported no
benefit. Some pa tients have turned to alternative treatments such as
licorice (which can mimic the action of steroids).
Before embarking on a course of
treatment with Florinef or its substi tutes, patients are advised to
undergo thorough testing to confirm NMH. Because these drugs affect
blood pressure, treatment must be closely su pervised by a physician.
AVAILABILITY AND COST. Florinef is
available by prescription. A 30-day supply of 0.1 mg tablets costs
about $14.
SEE
• Chapter 5: Herbs (licorice).
GAMMA GLOBULIN
DEFINITION. Gamma globulin is a
fraction of human blood that con tains pooled antibodies.
BACKGROUND. Gamma globulin, or
immunoglobulin, is a blood product pooled from many donors and
processed so that it contains a high concentration of immunoglobulin
G (IgG) and other antibodies that mit igate against and prevent
certain diseases. Gamma globulin has been in use for more than 40
years to prevent hepatitis, particularly in health care workers, as a
prophylactic during epidemics of measles and rubella, and as an
immune modulator in Kawasaki syndrome and in myasthenia gravis (a
disease that affects the muscles).
USES IN CFIDS. Gamma globulin is one of
the earliest CFIDS treat ments. The rationale behind the use of gamma
globulin is twofold. First, it was thought that if CFIDS were caused
by a virus, particularly a common virus that most of the general
public had been exposed to (such as Epstein-Barr virus), gamma
globulin would contain certain antibodies to fight the virus. Second,
certain patients with CFIDS had demonstrated deficiency of IgG
subclasses and it was proposed that gamma globulin could correct this
deficiency. While gamma globulin has sometimes been helpful in
treating CFIDS, it is not easy to determine why. There is no proof of
a specific causative virus as of yet and it seems that patients who
demonstrate IgG deficiency do not always respond better to gamma
globulin therapy than do those without IgG deficiency. Several
studies, both controlled and open, have been completed in the United
States and other countries with inconclusive results.
• In 1986, Dr. James Oleske and
colleagues from the New Jersey School of Medicine in Newark conducted
an open trial of 12 patients with chronic Epstein-Barr virus
infection (CFIDS) with IgG or IgG sub class deficiency. These
patients underwent intravenous gamma glob ulin therapy for 1 year.
Symptoms improved in eight and showed no improvement in four, but did
not worsen in any patients.
• Also in 1986, Dr. Richard DuBois of
Atlanta, Georgia, reported the results of a double-blind controlled
study of patients with chronic mononucleosis syndrome (CFIDS) treated
with intramuscular gam ma globulin. Symptoms in 52% of the patients
who received gamma globulin improved after treatment.
• In 1988, Dr. Phillip Peterson of
the University of Minnesota headed a double-blind controlled trial of
intravenous gamma globulin in 30 patients with CFIDS. Patients
received an infusion of gamma globu lin every month for 6 months. Of
these 30 patients, 12 (40%) had low IgG concentrations and 29 (9%)
had a viral onset. Given the immunologic deficiencies, a presumed
viral component, and a severely affected group of patients, the
results fell short of expectations. No significant difference was
demonstrated between the placebo and drug responses.
• In 1991, Dr. Denis Wakefield of
Sydney, Australia, concluded a study of 49 patients with CFIDS
enrolled in a double-blind placebo-con trolled study of intravenous
gamma globulin. Twenty-three patients received gamma globulin
infusions over 90 days, with encouraging results. Symptoms in 10
patients improved. In addition, several im mune parameters tested
showed improvement after treatment. Some side effects were reported,
but they may have been due to the high dose of gamma globulin. Dr.
Wakefield and his colleagues reported interest in undertaking a
larger trial with a lower dose of gamma globulin.
• In 1997, Australian pediatrician
Dr. K.S. Rowe published the results of a study of 70 adolescents
(ages 12 to 18 years) with chronic fatigue syndrome who received
intravenous gamma globulin therapy. After 3 months of treatment,
significant improvement was noted, but there were some side effects.
PROTOCOL. Intravenous gamma globulin
may be infused once a month for 6 months or longer. Intramuscular
gamma globulin can be in jected once or twice a week for 6 weeks,
after which the patient is re assessed.
PROS AND CONS. Many leading clinicians
continue to use gamma globulin therapy, with varying degrees of
success. Gamma globulin is not usually a first-line treatment and is
often used after other therapies have been attempted. Dr. Paul Cheney
uses both intramuscular and intravenous gamma globulin, with
different rates of success. He has stated that intra venous gamma
globulin may be more effective than intramuscular gamma globulin
(CFIDS Chronicle, Spring 1995). However, he found intramuscu lar
gamma globulin, which is much less costly than intravenous gamma
globulin, particularly useful in helping reduce the frequency of
upper res piratory tract infections in some patients. Dr. Murray
Susser and Dr. Michael Rosenbaum, authors of Solving the Puzzle of
Chronic Fatigue Syn drome, state that, although CFIDS is a complex
disease that requires an integrative approach, if they had to choose
the single most effective treat ment, it would be gamma globulin.
Only a few of our survey respondents
found some relief from gamma globulin therapy. The more severely ill
patients noted improvement of al most all symptoms (cognition,
energy, and mood). They were not cured, but were able to increase
their level of activity. Several patients noted little or no benefit.
No side effects were reported in our survey, but headaches,
dizziness, and nausea are mentioned in the CFIDS literature,
particularly if the dose is high or the rate of infusion is too fast.
A number of patients with CFIDS have
expressed concern about the safety of gamma globulin, inasmuch as it
is a blood product. Most physi cians believe it is safe because, to
date, there is no record of anyone con tracting human
immunodeficiency virus (HIV) from gamma globulin therapy. However, in
early 1994 there were reports in newspapers concern ing batches of
gamma globulin overseas that were contaminated with hepatitis C
virus. In May 1994, however, a new manufacturing process for
intravenous gamma globulin was developed that inactivates any viral
contaminants. Gamma globulin therapy is now considered safe.
Never theless, it is important to carefully discuss the risks and
benefits with a physician.
AVAILABILITY AND COST. Gamma globulin
is obtained through a physician and is usually administered in the
office. Intravenous infusions are costly and can be as much as $1000
per infusion. Some insurance com panies reimburse the cost if the
claim carefully documents specific im mune dysfunction such as IgG
subclass deficiency or hypogamma globulinemia. Intramuscular gamma
globulin is much less costly, generally less than $100 per injection.
GUAIFENESIN
DEFINITION. Guaifenesin is an
expectorant that helps clear mucus from congested passageways by
increasing production of respiratory tract fluids.
USES IN CFIDS. Guaifenesin, an
expectorant that is the primary active ingredient in many cough
syrups, may seem an unlikely candidate as a CFIDS treatment. However,
some years ago Dr. Paul St. Armand at the University of California at
Los Angeles observed that this medica tion helped his patients with
fibromyalgia. From his observations, Dr. St. Armand speculated that
patients with fibromyalgia and CFIDS might have an inherited
metabolic defect that causes faulty excretion of phosphates.
According to Dr. St. Armand, if phosphate accumulates in the
mitochon dria of cells, then adenosine triphosphate (ATP) and energy
production are impaired. The accumulation of phosphates also leads to
increased cal cium within the cells, possibly creating the tender
points so commonly seen in fibromyalgia. It appeared to Dr. St.
Armand that this defect in phosphate excretion could account for the
symptoms of fibromyalgia and CFIDS. In support of his theory, Dr. St.
Armand observed that gout med ications, which increase excretion of
both uric acid and phosphate, also produced positive results,
although they were not as well tolerated or as ef fective as
guaifenesin.
PROTOCOL. For people with CFIDS,
guaifenesin LA (long acting) is usually prescribed. It can be
purchased in pill form, without added anti-histamines or
decongestants. Dr. St. Armand recommends an initial dosage of 300 mg
of pure guaifenesin twice a day. If that proves ineffective, the
dosage is increased to 600 mg twice a day. About 30% of his patients
may require higher doses. Dr. St. Armand has observed that 2 months
of treatment reverses a year of illness, which should provide a
baseline for calculating how long the medication may be needed (a
person who has been ill for 4 years will need 8 months of treatment).
Dr. St. Armand caution that, for guaifenesin to be effective,
salicylate must not be used (salicylate or salicylic acid ingredients
are in Pepto-Bismol, Ben-Gay, Myoflex Creme, aspirin, Alka-Seltzer,
cosmetics, plant-containing shampoos and conditioners, plant-derived
vitamins, and herbal remedies). Dr. St. Armand also recommends that
patients take a calcium and magnesium supplement with meals to block
absorption of phosphates in food.
PROS AND CONS. Few controlled studies
have been performed to confirm or disprove the effectiveness of
guaifenesin in treating symptoms of CFIDS so commentaries on this
drug are anecdotal. One patient with long-term CFIDS reported
dramatic symptomatic improvement with guaifenesin (Mass CFIDS Update,
Summer 1996). She began taking guai fenesin in 1994 to treat a
stubborn bout of bronchitis and was surprised to note a number of
other symptoms began improving. After several months she noticed she
was beginning to have clusters of "good days" and that her
pain was "almost nonexistent." She also noted improvements
in cognitive function, energy, and vision.
Although few side effects are directly
attributable to guaifenesin, CFIDS symptoms may initially worsen.
Often a patient may feel much worse for the first 2 to 4 months of
treatment. Dr. St. Armand warns that this treatment "takes
confidence and strength" because results may not be seen for
several months. He also warns that patients with both fibromyalgia
and hypoglycemia will not notice any improvement with guaifenesin
treatment unless the hypoglycemia is corrected (see Chapter 3:
Hypogly cemia for dietary and other recommendations). Although Dr.
St. Armand believes the long-term benefits are worthwhile for
patients with fibromyalgia, many patients with CFIDS may be wary of
risking relapse.
Patients interested in trying
guaifenesin should also note that, although Dr. St. Armand claims
significant improvement among his patients, stud ies have not
replicated his results. A double-blind controlled study con ducted at
the Oregon Health Sciences University by Dr. Robert M. Bennett and
Dr. Sharon Clark found no difference between the guaifenesin and
placebo groups after a year of treatment. Neither did they find an
increase in urinary excretion of phosphates, which seems to undercut
the basis for guaifenesin's (theoretical) mode of action. In light of
these findings, it is apparent that guaifenesin's role in the
treatment of fibromyalgia and CFIDS is yet to be determined.
AVAILABILITY AND COST. Guaifenesin is
available by prescription. Although it is also found in many
over-the-counter cough syrups, these may contain other active
ingredients, as well as alcohol, dyes, and flavor ing. A month's
supply costs about $26 (generic drug) and $36 (brand-name drug) and
is usually covered by insurance.
MORE INFORMATION
Paul St. Armand, M.D.
4560 Admiralty Way, Suite 355
Marina del Rey, CA 90292
Copies of papers on fibromyalgia: "One
Disease-Two Names," "Hypoglycemia," and
"The Use of Uricosuric Agents in
Fibromyalgia" for clinicians.
HYDROCORTISONE
DEFINITION. Hydrocortisone is a
glucocorticoid hormone excreted by the adrenal cortex in response to
stress, inflammation, and low blood sug ar levels.
BACKGROUND. Cortisone and
hydrocortisone are two adrenal hor mones that have numerous effects
on body functions, including reduction of inflammation and
maintenance of sodium and potassium balance and blood sugar. They
have profound effects on protein and carbohydrate me tabolism.
Cortisone is used medically to treat inflammatory conditions such as
rheumatoid arthritis, lupus, and allergies.
USES IN CFIDS. Whether cortisone or
hydrocortisone should be used to treat CFIDS is a topic of much
debate among CFIDS clinicians. Recent studies performed by Dr. Mark
Demitrack and colleagues showing en docrine system deficiency along
the hypothalamic-pituitary-adrenal axis (HPA axis) seem to indicate
chronic adrenal insufficiency in patients with CFIDS (Journal of
Clinical Endocrinology and Metabolism, 1991). The low levels of
cortisol found in some CFIDS patients, combined with increased or new
inflammatory responses (allergies, irritable bowel syndrome, and
rheumatic conditions), also seem to point to the use of cortisol as a
poten tially effective treatment. However, not all clinicians agree
that treatment with hydrocortisone is beneficial. Cortisone is an
immune system suppres sant and, in cases in which the immune system
is already compromised, its effects could be disastrous. Clinicians
who are critical of cortisone's useful ness as a CFIDS treatment
point out that glucocorticoids are best used as a short-term
treatment for severe allergic reactions. Long-term use may
ex acerbate the disease process.
PROTOCOL. Hydrocortisone (cortisone,
cortisol) may be given as a single injection of 100 mg or less to
treat severe allergic response or in acute cases of CFIDS when
immediate intervention is required. It may also be administered in
low doses (5 to 20 mg) on a daily basis.
PROS AND CONS. Cortisone is a naturally
occurring chemical. How ever, its use, especially on a long-term
basis, carries significant risk. When the body registers the presence
of cortisone, the adrenal glands decrease production. Over a long
period of time, the adrenal glands may fail to pro duce
glucocorticoids altogether, making the patient entirely dependent on
a drug source for this essential hormone. In addition to the risk of
depen dency and adrenal failure, the dosage must not be excessive, or
Cushing's syndrome may eventually develop, with tendencies for
obesity, hyperten sion, osteoporosis, and mental disturbances. Side
effects of even small dos es of cortisol may include headache,
gastrointestinal disturbances, insom nia, and weakness. On the
positive side, single ("pulse") administrations of cortisol
can be lifesaving for patients with severe allergic reactions or
acute-onset CFIDS. To date there are not enough data regarding small,
regularly administered doses to draw any conclusion. Hydrocortisone
is contraindicated in systemic fungal infections.
AVAILABILITY AND COST. Cortisone is
available by prescription, in generic and brand-name formulations.
The cost ranges from $15 to $30 a month, depending on the dosage.
KUTAPRESSIN
DEFINITION. Kutapressin is a peptide
and amino acid solution derived from porcine (pig) liver.
BACKGROUND. In the late 1920s, it was
discovered that liver helped patients with acne vulgaris. As a result
of this observation, attempts were made to isolate the active factor
from liver. Not until the 1940s was activi ty demonstrated in a
specially purified liver fraction. Subsequent refine ments in
isolation of the active material led to the introduction of
Kuta pressin. Since then, Kutapressin has been used to treat poison
ivy, hives, eczema, severe sunburn, herpes zoster, and other
dermatologic condi tions. According to Dr. Thomas Steinbach,
Kutapressin was used decades ago to treat neurasthenia, a condition
that bore a remarkable resemblance to CFIDS. Dr. Steinbach observes
that Kutapressin's antiviral and anti-inflammatory properties make it
an effective treatment for infectious mononucleosis.
USES IN CFIDS. Kutapressin's value as a
CFIDS treatment did not be come generally known until Dr. Thomas
Steinbach and Dr. William Hermann used Kutapressin successfully in
the early 1980s to treat shingles and what was then referred to as
Epstein-Barr virus reactivation (CFIDS Chronicle, Summer 1990).
Because of Kutapressin's excellent safety record and the positive
results in treating Epstein-Barr virus infection, they conducted an
informal unblinded study of some 270 patients with CFIDS. The results
were impressive. Of the study participants, 75% showed im provement,
and in some cases marked improvement, after only 40 injec tions of
Kutapressin. Even more promising was that many of these patients had
been ill with CFIDS for more than 5 years. The study riveted the
at tention of CFIDS clinicians because no drug treatment to date had
pro duced such impressive results.
A second study published by Dr. Steinbach and Dr. Hermann demonstrated the same impressive results (as presented at the International CFIDS Conference, Albany, N.Y., 1992). Of the 130 pa tients who participated in the second study, 85% reported notable or marked reduction of symptoms while receiving Kutapressin injections. Of 111 patients who reported significant reductions in symptoms, 103 noted results within 6 months of treatment. As a result of these studies, many CFIDS clinicians began to incorporate Kutapressin in their treatment plans, particularly when there is evidence of viral activity (high titers of human herpesvirus 6 and high interferon levels).
A second study published by Dr. Steinbach and Dr. Hermann demonstrated the same impressive results (as presented at the International CFIDS Conference, Albany, N.Y., 1992). Of the 130 pa tients who participated in the second study, 85% reported notable or marked reduction of symptoms while receiving Kutapressin injections. Of 111 patients who reported significant reductions in symptoms, 103 noted results within 6 months of treatment. As a result of these studies, many CFIDS clinicians began to incorporate Kutapressin in their treatment plans, particularly when there is evidence of viral activity (high titers of human herpesvirus 6 and high interferon levels).
Because the underlying cause of CFIDS
remains unknown, it is diffi cult to determine why Kutapressin has
such dramatic effect. Some re searchers have theorized that
Kutapressin must have both antiviral and immunomodulatory properties
to simultaneously curtail viral reactiva tion and the characteristic
immune system overreaction typical in CFIDS. Kutapressin's role in
suppressing viral activity is fairly well documented.
A study published by Dr. D.V. Ablashi and colleagues proved that Kuta pressin is a potent inhibitor of herpesvirus 6 in vitro without causing cell damage (In Vivo, 1994). A later study conducted in 1996 by Dr. E. Rosenfeld and colleagues found that Kutapressin was also effective against Epstein-Barr virus (In Vivo, 1996). However, its role in immunomodulation remains speculative. Dr. Steinbach and Dr. Hermann postulated that Kutapressin may act to mediate the action of lymphokines, the immune system chemicals that are thought responsible for many of the symptoms characteristic of CFIDS.
A study published by Dr. D.V. Ablashi and colleagues proved that Kuta pressin is a potent inhibitor of herpesvirus 6 in vitro without causing cell damage (In Vivo, 1994). A later study conducted in 1996 by Dr. E. Rosenfeld and colleagues found that Kutapressin was also effective against Epstein-Barr virus (In Vivo, 1996). However, its role in immunomodulation remains speculative. Dr. Steinbach and Dr. Hermann postulated that Kutapressin may act to mediate the action of lymphokines, the immune system chemicals that are thought responsible for many of the symptoms characteristic of CFIDS.
PROTOCOL. The original protocol
developed by Dr. Steinbach and Dr. Hermann consists of a daily
intramuscular injection of 2 ml of Kuta pressin for 25 days followed
by 2 ml injections every other day for 25 days, followed by 2 ml
injections three times a week for several months.
Currently, Dr. Steinbach is prescribing
daily injections of 2 ml of Kuta pressin, tapering off after a
6-month period to one injection a week, using natural killer cell
function as a treatment guideline.
A 23-gauge 1-inch-long needle is
recommended for deep intramuscu lar injection. Dr. Steinbach also
administers vitamin B12 shots as an impor tant therapeutic adjunct.
He prefers that the first few injections be given in the office,
after which the patient is instructed in how to administer the
in jections at home. Follow-up is on a monthly basis.
PROS AND CONS. Kutapressin, although
quite effective for some pa tients, is not universally helpful. Not
everyone has achieved the remarkable success rate reported by Dr.
Steinbach and Dr. Hermann. Kutapressin can involve a lot of time and
money, with little gain. To that end, many patients do not continue
with it for 6 months if they have noted no results after 3 or 4
months. Most patients who have benefited from it note an immediate
cessation of sore throats, a reduction in flu-like feelings, pain,
and fatigue, and improvement in energy level. One patient who had
been bedridden became self-sufficient after treatment with
Kutapressin. Many others have reported decreased duration and
severity of episodes of flu, increased en ergy and stamina, and a
feeling of overall improvement with Kutapressin.
Gregg Fisher, in his book Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS, states that he and his wife, both CFIDS patients, experienced notable im provement with Kutapressin. He further adds that it was the first medica tion that genuinely helped them both. Although Kutapressin is considered safe, it does produce a few minor side effects initially, but which usually pass quickly after the first few injections are given. In most patients, side effects subside within the first 20 days of treatment. A small number of pa tients, however, may feel worse. People with allergies to pork and women who are pregnant should not take Kutapressin.
Gregg Fisher, in his book Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS, states that he and his wife, both CFIDS patients, experienced notable im provement with Kutapressin. He further adds that it was the first medica tion that genuinely helped them both. Although Kutapressin is considered safe, it does produce a few minor side effects initially, but which usually pass quickly after the first few injections are given. In most patients, side effects subside within the first 20 days of treatment. A small number of pa tients, however, may feel worse. People with allergies to pork and women who are pregnant should not take Kutapressin.
AVAILABILITY AND COST. Kutapressin is
available by prescription only. It costs between $90 and $140 per 20
ml vial (10 injections). A full 6-month course of treatment costs
between $700 and $900. Many insurance companies cover the cost;
however, some companies consider Kutapressin an experimental drug and
do not cover the cost.
NALTREXONE
DEFINITION. Naltrexone (Trexan or
ReVia) is an opioid antagonist.
BACKGROUND. Because naltrexone binds to
opioid receptors in the nervous system, it is used to block the
effects of narcotics. As a conse quence, it has been useful for
treating drug dependency. Naltrexone (ReVia) has recently been
approved by the PDA to help treat alcohol ad diction as well.
Naltrexone is also useful in a number of medical condi tions,
including Alzheimer's disease, bulimia, and multiple sclerosis.
USES IN CFIDS. CFIDS clinicians have
expressed interest in naltrexone, especially in light of findings
regarding naltrexone's effect on T and B cells as well as natural
killer cells. Dr. Susan Levine, a well-known CFIDS expert affiliated
with Mt. Sinai Hospital, New York, explains the rationale for the use
and success of naltrexone. "Naltrexone can act to counteract
some of the negative effects of excess stimulation by endorphins,
such as diminished immune function, and may help to improve cognition
and listlessness" (CFIDS Chronicle, January/February 1989).
(Endorphins are naturally occurring substances present in high
concentrations during var ious illnesses, including viral and
autoimmune disease.) One study by Dr. Levine provided encouraging
results. Cognitive symptoms improved in six of ten CFIDS patients
treated with 5 mg naltrexone. No clinically impor tant side effects
were observed. Other physicians continue to prescribe nal trexone to
treat cognitive disorders.
PROTOCOL. Dosage ranges from 5 to 50
mg. Lower doses usually are most effective.
PROS AND CONS. A few people have found
naltrexone of minimal or modest benefit. One patient believed
naltrexone improved memory; an other felt less fatigue and less body
achiness. However, side effects typical ly include anxiety, insomnia,
and headache.
AVAILABILITY AND COST. Naltrexone is
available by prescription. The cost is approximately $150 for a
30-day supply of 50 mg tablets and less for lower doses. Insurance
coverage may vary; check with your carrier.
NITROGLYCERIN
DEFINITION. Nitroglycerin is a nitrate
commonly used to relieve an gina.
BACKGROUND. Nitroglycerin is one of the
oldest drugs in continual use, having been used for more than 100
years to treat angina. It is a va sodilator; that is, it causes
relaxation of the blood vessels. This in turn in creases the supply
of blood and oxygen to meet the needs of the heart.
USES IN CFIDS. Nitroglycerin has been
used primarily to treat fibromyalgia-type pain in people with CFIDS,
although it has other uses as well. At the 1992 CFIDS conference in
Albany, New York, Dr. Jay Goldstein reported that nitroglycerin not
only relieved pain but often helped allevi ate many other symptoms
associated with low blood flow (hypoperfusion) in the brain. After
initiating nitroglycerin treatment, Dr. Goldstein's pa tients
reported a decrease in headaches, sore throat, irritable bowel-type
symptoms, anxiety, and depression. They also noted increased energy
and improved cognition. A point of great interest regarding
nitroglycerin as a CFIDS treatment is that some patients with
concurrent multiple chemical sensitivities report improvement in
symptoms.
PROTOCOL. Because nitroglycerin affects
the heart, it is best to deter mine a specific dose with your
physician (individual requirements vary). Dr. Goldstein prescribes
sublingual nitroglycerin, generally 0.04 mg (more information on Dr.
Goldstein's protocol can be obtained from CFIDS Chronicle, which
provides a transcript on nitroglycerin, or by reading Dr. Goldstein's
book, Chronic Fatigue Syndrome: The Limbic Hypothesis).
PROS AND CONS. In marked contrast to
other CFIDS medications, nitroglycerin acts very quickly. Improvement
in symptoms can be noted within minutes, making them easy to
evaluate. Benefits can be global; energy, pain, cognitive function,
and mood may improve significantly. However, side effects are common.
The most frequent problems are re duced blood pressure, fainting,
dizziness, and headache. For this reason, nitroglycerin is usually
administered while the patient is sitting. Patients with migraine
headaches should not take this drug because it will worsen the
condition. An additional drawback to nitroglycerin is that it loses
its effectiveness over time. Dr. Goldstein states, "The most
vexing problem in my use of nitroglycerin has been the development of
tolerance, which is sometimes extremely rapid, occurring even after
the first dose" (CFIDS Chronicle, Summer 1993). Concurrent use
of any drug that lowers blood pressure or alcohol will exaggerate the
hypotensive effect of nitroglycerin.
AVAILABILITY AND COST. Nitroglycerin is
available by prescription, in pill or patch formulation. It can be
purchased as a generic drug or any of more than two dozen brand-name
drugs. Nitroglycerin is inexpensive; 100 pills cost less than $10.
Insurance usually covers the cost.
OXYTOCIN
DEFINITION. Oxytocin is a hormone
produced in the posterior lobe of the pituitary gland.
BACKGROUND. Oxytocin is a pituitary
hormone that stimulates uter ine muscle contraction and sensitizes
nerves. It also controls microcirculation in the brain. Oxytocin is
naturally produced in large quantities dur ing childbirth, lactation,
in response to certain stressors (hypoglycemia, exercise,
hypothermia), and during sexual intercourse. Its most common medical
use has been as an aid in stimulating contractions during labor.
Oxytocin is also used to control
postpartum uterine bleeding. The neurotransmitter dopamine stimulates
oxytocin production.
USES IN CFIDS. CFIDS clinician, Dr.
Jorge Flechas, suggests that pa tients with CFIDS might well have a
deficiency in oxytocin (CFIDS Chron icle, Spring 1995). Dr. Flechas
bases his theory on the fact that CFIDS pa tients have lower levels
of two other hormones, corticotropin-releasing hormone (CRH) and
arginine vasopressin (AVP), which are coexpressed with oxytocin in
the same region of the brain. He points out that many of the symptoms
of CFIDS (pain, loss of libido, sleep disturbances, low exer cise
tolerance, circulatory problems, and metabolic disorders) could be
generated by oxytocin deficiency. Several CFIDS clinicians, including
Dr. Flechas and Dr. Jay Goldstein, use oxytocin to treat CFIDS
symptoms. They have reported increased stamina, decreased pain, and
improved cog nitive function in those patients who have used it. In
his book, Betrayal by the Brain, Dr. Goldstein has also noted a
decrease in fibromyalgia pain, anxiety, depression, and perhaps even
food allergies.
PROTOCOL. Oxytocin may be administered
orally, sublingually, or as an intramuscular injection.
PROS AND CONS. Because use of oxytocin
to treat CFIDS symptoms is new, little information is available as to
its efficacy. Side effects, most commonly associated with the
injectable forms of oxytocin, can be seri ous, and include nausea,
irregular heartbeat, changes in blood pressure, convulsions,
headache, weight gain, dizziness, difficulty breathing, and mental
disturbances. Any side effects should be reported to your physi cian.
Pregnant women should not take oxytocin.
AVAILABILITY. Oral oxytocin (Pitocin,
Syntocinon) is available by pre scription only.
PAIN RELIEVERS
NOTE: Most analgesics are available
over the counter, but it is still impor tant to discuss dosage and
side effects with your physician, especially if any of these
medications are taken regularly.
DEFINITION. Analgesics are agents that
diminish pain.
BACKGROUND. Pain killers work by
blocking the body's production of hormones that send pain messages to
the brain (prostaglandins) or by occupying the sites that receive
those messages. The two general types of analgesics are nonnarcotics,
which block chemical production, and nar cotics, which block
reception in the brain. Nonnarcotic pain killers include aspirin and
other salicylates, acetaminophen (Tylenol), and nonsteroidal
anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil, Motrin).
Narcotic pain killers include the opiates and opioids, such as
codeine, Darvon or Wygesic (propoxyphene), Demerol (meperidine), and
mor phine. Because narcotics are habit-forming, they are used on a
short-term basis only. A number of prescription analgesics contain a
combination of nonnarcotic and narcotic pain killers. The most common
combinations contain codeine and acetaminophen or aspirin. These
drugs are used when pain persists or is not relieved by other
nonnarcotic or narcotic drugs.
Aspirin
Aspirin is classified as a nonsteroidal
anti-inflammatory drug (NSAID) because it reduces inflammation. It
blocks pain by inhibiting the enzyme cyclooxygenase, which helps the
body produce inflammation-causing prostaglandins. The main active
ingredient in aspirin is acetylsalicylic acid, a chemical that was
first derived from willow bark.
USES IN CFIDS. Aspirin is recommended
for those CFIDS patients with continual or severe joint and muscle
pain. In his book, The Doctor's Guide to Chronic Fatigue Syndrome,
Dr. David Bell notes that aspirin is beneficial for CFIDS patients
with "prominent joint and muscle pain, headache, lymph node pain
and general aching, and is less effective in pa tients with prominent
fatigue, nausea, and neurologic symptoms."
PROTOCOL. Aspirin can be taken as
needed to prevent or treat pain. Dr. Bell suggests that some patients
with intractable pain may benefit from daily use of aspirin. To avoid
stomach upset, aspirin should be taken with food or in buffered form.
As with other drugs, it is best to begin with a small dose to assess
tolerance.
PROS AND CONS. Although aspirin is
generally regarded as safe, fre quent use can lead to a number of
side effects, including tinnitus (ringing in the ears), nausea, and
heartburn. If aspirin is taken on a regular basis, an antiulcer
medication (such as Zantac or Tagamet) may also be recom mended to
protect the lining of the stomach. Patients with a history of
ul cers, gastroesophageal reflux, or other gastrointestinal problems
should avoid aspirin. Aspirin should not be given to children because
it can cause Reye's syndrome.
AVAILABILITY AND COST. Aspirin is
available over the counter at any pharmacy and most supermarkets. It
is inexpensive. Check the label care fully because some aspirin
brands contain other potentially irritating in gredients, such as
caffeine.
NSAIDs
Nonsteroidal anti-inflammatory drugs
(NSAIDs) act by inhibiting prostaglandin production. Like aspirin,
they reduce inflammation, pain, and fever. Unlike aspirin, which is
cleared from the body quickly, NSAIDs have a long half-life and thus
require less frequent administration. Their lower dosage leads to
fewer side effects.
USES IN CFIDS. NSAIDs are recommended
to treat recurring pain in muscles and joints. Many patients with
CFIDS who have chronic acute pain prefer ibuprofen (Advil, Motrin)
over other pain medications.
PROTOCOL. NSAIDs are generally taken as
needed. Patients should start with a small dose to assess tolerance.
PROS AND CONS. Because all NSAIDs can
produce gastrointestinal problems, caution must be exercised.
Buffered or enteric-coated drugs help protect the stomach lining. The
medication should always be taken with food. Finally, patients should
be alert for signs of gastrointestinal dis tress (heartburn, reflux,
pain).
AVAILABILITY AND COST. NSAIDs are
available over the counter. The most common is ibuprofen (Advil,
Motrin). Prescription NSAIDs in clude Clinoril, Feldene, and
Tolectin. Intramuscular Toradol may be pre scribed for severe pain.
NSAIDs are generally more expensive than aspirin or acetaminophen.
Acetaminophen
In contrast to those NSAIDs that work
by inhibiting prostaglandin production, acetaminophen (Tylenol) acts
in the brain, where it blocks the perception of pain. As a
consequence, acetaminophen is not of particular benefit in treating
joint or muscle pain due to inflammation. Its primary uses in CFIDS
are to relieve headache and generalized achiness and to re duce
fevers.
PROS AND CONS. Acetaminophen does not
cause stomach irritation, as do aspirin and other NSAIDs. However, a
number of patients with CFIDS find they can tolerate only low or
infrequent doses. An additional and serious problem associated with
acetaminophen is that high doses can lead to liver damage—as can
any dose of this drug taken with alcohol. If signs of liver
malfunction develop (jaundice or pain under the right side of the rib
cage), acetaminophen should be discontinued immediately.
AVAILABILITY AND COST. Acetaminophen is
available over the coun ter in brand-name and generic formulations.
Ultram
Ultram (tramadol) is a new, centrally
acting analgesic. Its mode of ac tion is not yet fully understood,
but, much like acetaminophen, it is be lieved to act on pain
receptors in the brain.
USES IN CFIDS. Ultram has been
prescribed to treat muscle and fibromyalgia-type pain.
PROS AND CONS. Some patients report
that Ultram is the most ef fective medication for pain and that it
also helps relieve insomnia and fa tigue. The drug is reputedly
nonaddictive, although some patients have re ported tolerance to the
drug. Ultram acts quickly and does not seem to produce as many side
effects as other pain medications, although some pa tients have
reported headaches. This drug is contraindicated in patients with
seizure disorders and those taking monoamine oxidase inhibitors
(MAOIs).
AVAILABILITY AND COST. Ultram is
available by prescription only. Dosage varies, but the manufacturer
recommends a maximum of 50 mg every 4 hours. Depending on dosage and
frequency, a month's supply could cost as much as $100. No generic
formulation is available.
NARCOTICS
The subset of CFIDS patients with
severe, burning, intractable pain that does not respond to other
treatments may need stronger medications. In these cases, narcotics
(codeine, hydrocodone, Demerol, Darvon, Tylenol with codeine) may be
recommended. Although effective, narcotics are ad dictive and
therefore should be used only when other pain treatments have failed
to alleviate pain.
PROS AND CONS. Narcotics offer
immediate and sometimes total re lief from certain types of pain.
Some CFIDS patients with fibromyalgia re port that a single injection
of Demerol may relieve pain for up to 6 months. The reasons for this
are not clear, but for some patients breaking the cycle of pain
reception in the brain seems to have decided long-term effects.
Narcotics can be used only infrequently and in small doses because
the risk of addiction is high. The most common side effects are
drowsi ness, mood changes, and constipation. Codeine also causes
stomach upset.
The higher the dose, the more serious
the side effects. High doses, for ex ample, may cause breathing
problems; therefore, patients with a history of respiratory problems
should exercise caution or avoid narcotics entirely.
PENTOXIFYLLINE
DEFINITION. Pentoxifylline (Trental) is
a hemorrheologic agent de rived from xanthine.
BACKGROUND. Pentoxifylline improves
capillary blood flow by in creasing the flexibility of red blood
cells and lowering blood viscosity. This double action enables blood
cells to squeeze through tiny capillaries with greater ease.
Traditionally, pentoxifylline is used to treat vascular diseases,
especially those that inhibit blood flow.
USES IN CFIDS. Some clinicians have
recommended pentoxifylline in CFIDS to increase blood flow to the
brain. Single-photon emission com puted tomography (SPECT) scans
consistently reveal lowered blood flow in patients with CFIDS. In
theory, pentoxifylline should resolve that prob lem. Pentoxifylline
may also address another blood problem common to CFIDS. Dr. L.O.
Simpson, a pathologist from the University of Otago Medical School in
Dunedin, New Zealand, discovered that patients with CFIDS have
irregularly shaped red blood cells, which makes it more diffi cult
for blood cells to pass through capillaries. Dr. Simpson believes the
de creased cerebral blood flow in CFIDS is the consequence of
abnormally shaped blood cells. Many of the symptoms of inadequate
blood supply such as lightheadedness, vertigo, and cognitive problems
might be allevi ated if blood flow is increased.
PROTOCOL. The usual recommended dose is
400 mg three times a day, with meals. Patients with CFIDS may want to
begin with a lower dose to assess sensitivity.
PROS AND CONS. CFIDS patients who have
benefited from pentoxi fylline report dramatic improvement in
cognitive function. One man who was in danger of losing his job
because of problems of concentration and memory reported that
pentoxifylline restored his cognitive function to normal.
Pentoxifylline should not be used by those who cannot tolerate
stimulants. Xanthine, from which pentoxifylline is derived, is
closely relat ed to caffeine. Pentoxifylline is contraindicated in
patients with peptic ul cers and those at risk for hemorrhage.
AVAILABILITY AND COST. Pentoxifylline
is available by prescription. A month's supply costs about $55.
TAGAMET AND ZANTAC
DEFINITION. Tagamet (cimetidine) and
Zantac (rantidine) are histamine H2 receptor antagonists that inhibit
acid secretion in the stomach.
BACKGROUND. Before Food and Drug
Administration (PDA) ap proval of Tagamet in 1977, the pain resulting
from duodenal ulcers was nearly impossible to treat with standard
medications. While not a cure, Tagamet is thought to allow ulcers to
heal by blocking acid secreted by the stomach in response to
histamine. Millions of patients now take Tagamet (and Zantac,
approved in 1983) and a substantial number have obtained significant
relief from pain. Tagamet, Zantac, and two other approved H2
blockers, Axid (nizatidine) and Pepcid (famotidine), are also
prescribed to treat heartburn and gastritis.
In the early 1980s, Dr. Jay Goldstein
used Tagamet to treat infectious mononucleosis (confirmed by monospot
test, enlarged spleen, and other clinical findings consistent with
the diagnosis) in a college student. The symptoms resolved within 24
hours. Dr. Goldstein's rationale for treat ment was based on the fact
that Epstein-Barr virus, which causes mono nucleosis, is a
herpesvirus and, in most herpes infections, there is an in creased
number of T suppressor cells. It had been recently demonstrated that
T suppressor cells had H2 receptors on their surfaces, and it was
thought that the cells were activated by histamine. Dr. Goldstein
theorized that perhaps the T cells could be inactivated by Tagamet,
an H2 blocker. His theory appears to have validity, as Dr. Goldstein
reports positive results in 90% of cases of mononucleosis treated
with Tagamet. He has received positive feedback from physicians
around the United States who have replicated his results (CFIDS
Chronicle, 1988 Compendium).
USES IN CFIDS. In 1985, Dr. Goldstein
began to see his first cases of what was then called chronic
Epstein-Barr virus infection (now CFIDS). Using the same logic that
he used to treat mononucleosis, Dr. Goldstein gave his patients
Tagamet and Zantac. He has found over the course of years that at
least 20% of patients with CFIDS have responded favorably to
treatment with H2 blockers. Although the cause of CFIDS remains
unde termined, it is known there is activation of T suppressor cells,
probably due to viral activity. It is believed that H2 blockers have
a modulatory effect on the immune system in that they probably
inhibit overproduction of lymphokines responsible for some of the
flu-like symptoms of CFIDS.
Several leading CFIDS clinicians,
including Dr. Charles Lapp, use H2 blockers to treat gastrointestinal
symptoms as well as for immune system modulation. Dr. Murray Susser
and Dr. Michael Rosenbaum use H2 block ers to treat immune system
dysfunction.
PROTOCOL. Whereas some patients take
only low doses of these H2 blockers (even a sliver of a pill can be
effective, according to Dr. Goldstein) others take the standard
prescribed dose for ulcers:
Tagamet 300 to 400 mg, one or more
tablets per day Zantac 75 to 300 mg/day.
PROS AND CONS. H2 blockers work rapidly
and results can often be seen in less than 2 weeks, thereby making a
trial worthwhile. Many patients have reported a variety of benefits.
A few of our survey respondents with allergies felt much better
overall after taking Zantac and several found sig nificant relief
from digestive disturbances as well. Two respondents report ed that
Tagamet gave them more energy and lessened the weak, achy feel ing of
CFIDS. Another respondent thought Zantac relieved bladder pain due to
interstitial cystitis, perhaps because it blocked stomach acid. Many
acidic foods cause bladder disorders (see Chapter 3: Urinary Tract
Prob lems).
Dr. Goldstein has noted that some
patients feel nervous and agitated while taking Tagamet. Other
clinicians believe H2 blockers cause depres sion (a less common side
effect according to the Physicians Desk Refer ence). Because Tagamet
may interact with and increase blood concentra tions of many drugs,
some of which are commonly prescribed in CFIDS (antidepressants and
benzodiazepines), it is important to advise your physician of all
medications you are taking. Zantac may be prescribed more frequently
than Tagamet to treat symptoms of CFIDS because it is less
interreactive with other medications and may pose less risk for side
ef fects.
AVAILABILITY AND COST. Tagamet and
Zantac are available by pre scription. The cost may range from $40 to
$100 per month, depending on the dose, and is usually covered by
insurance. Pepcid AC and Zantac 75 are available over the counter.
The cost of Pepcid AC is approximately $7.50 for a package of 18
tablets, 10 mg strength.
TRANSFER FACTOR
DEFINITION. Transfer factor, an extract
from peripheral blood lym phocytes (white blood cells) of a healthy
donor, facilitates the transfer of T cell-mediated immunity from one
person to another.
BACKGROUND. Transfer factor has been
used for more than 40 years to transfer immunity from a presumably
healthy donor to a recipient. It has been used to treat viral,
parasitic, and bacterial infections, as well as certain autoimmune
diseases and cancers. Distinctive types of transfer fac tor may be
used, depending on the condition being treated. Nonspecific transfer
factor from a pool of healthy donors may be used for immune sys tem
modulation. Disease-specific transfer factor is used to treat a
specific virus or infection, such as herpesviruses or human
immunodeficiency virus (HIV). In addition, donor-specific or
dedicated donor transfer factor can be obtained from a relative or
other household member.
USES IN CFIDS. Transfer factor, at
least in theory, would appear to be valuable as a primary therapy in
CFIDS. Because the cause of the disease is still unknown, it has been
difficult to find a universally effective treatment. Transfer factor
is considered adaptogenic; that is, it can boost a deficient immune
system or, conversely, can downregulate the immune system in certain
autoimmune conditions. This makes it an ideal immunomodulator in
CFIDS. However, as the following data reveal, reports of the efficacy
of transfer factor have been conflicting.
• At the May 1994 CFS/ME conference
in Dublin, Ireland, information was presented regarding a study of 20
patients with CFS treated with oral transfer factor by Dr. Giancarlo
Pizza and colleagues from Bologna, Italy. Of the 20 patients,
improvement was noted in 12 and remission was observed in two. There
were no significant side effects. This oral form of transfer factor
was specific for Epstein-Barr virus, cytomegalovirus, human
herpesvirus 6, and herpes simplex virus. Despite these positive
findings it is important to note that it is diffi cult to accept the
premise that a combination of a few known viruses would help the vast
majority of CFIDS patients, some of whom may not have these viruses
present or may have other viruses not being addressed by this
specific transfer factor.
• Dr. Perry Orens of Great Neck, New
York, reported a positive experi ence with transfer factor (CFIDS
Chronicle, Fall 1993). With Dr. Hugh Fudenberg, a leading
international expert on transfer factor, Dr. Orens used injectable,
donor-specific transfer factor to treat symptoms of CFIDS in nine
patients. The results were complete re mission in two patients,
marked improvement in two, partial im provement in two, and no
improvement in three.
• In 1991, Dr. Denis Wakefield of
Australia reported the results of an extensive double-blind study of
transfer factor. Of 90 patients with CFIDS, 46 received the transfer
factor and 44 received a placebo. Twenty-five patients received
specific transfer factor donated by a family member and 21 received
transfer factor from an unrelated donor (a healthy control).
Follow-up 3 months later showed no dif ference in quality of life,
immunologic assessment, or activity levels.
It was concluded that neither specific
nor nonspecific transfer factor were of benefit. It is important to
note that the treatment consisted of only eight injections, given
over the course of a month. It is possible that the short duration of
treatment affected the outcome.
PROTOCOL. Transfer factor may be given
in oral or injectable form. It may take at least 6 months before
improvement is noted.
PROS AND CONS. Because transfer factor
is not widely used to treat CFIDS, it is difficult to assess its
efficacy. It is worth noting that when transfer factor is effective,
the results are global, with significant improve ment of symptoms. In
The Type I/Type 2 Allergy Relief Program, Dr. Alan Levin wrote of his
extensive experience with transfer factor. After using it to treat
severe allergic conditions in more than 300 patients, he reported a
68% success rate, with miraculous results in some patients. However,
he pointed out some serious side effects, including heart or muscle
malfunc tion, temporary or permanent brain damage, and aggravated
vasculitis, and recommended that transfer factor should probably be
used only in pa tients with incapacitating symptoms. Other physicians
do not share Dr. Levin's enthusiasm or success rate, however, and a
number of CFIDS pa tients have reported not only lack of improvement
but even a worsening of allergic-type symptoms, even after lengthy
treatments with transfer factor. In fact, treatment surveys conducted
by De Paul University and indepen dent researchers have shown that
about a third of those who try transfer factor consider it "harmful."
In sum, there are many drawbacks to use
of transfer factor: (1) it is not widely available and is considered
an experimental treatment; (2) it is cost ly and not usually covered
by insurance; (3) many patients and physicians have raised questions
about its safety and side effects; and (4) because it is a blood
product, the risks of disease transmission should not be ignored,
although donors are extensively screened and the transfer factor
under goes a filtration process that should eliminate viruses. Side
effects of treat ment may vary. Dr. Pizza notes that fatigue, sore
throat, fever, and headache may occur within the first few days of
treatment, but these re solve quickly. These side effects might be
the result of immune system ac tivation in response to transfer
factor.
AVAILABILITY AND COST. Transfer factor
therapy for CFIDS is not widely available. Currently, Dr. Hugh
Fudenberg of Spartanburg, South Carolina, Dr. Lewell Brenneman of San
Francisco, and Dr. Giancarlo Pizza of Bologna, Italy, are using
transfer factor. A CFIDS specialist should be able to refer you to
other physicians who use this therapy. Currently, the cost of
injections is approximately $250 per month.
5
Nutritional Supplements and Botanicals
Alpha Ketoglutarate
Amino Acids
Antioxidants
Bioflavonoids
Blue-Green Algae
Butyric Acid
CoQ10
DHEA
Entero-Hepatic Resuscitation Program
Essential Fatty Acids
Glucosamine Sulfate
Herbs
LEM
Malic Acid
Melatonin
Minerals
NADH
Probiotics
Probioplex
Pycnogenol
Royal Jelly
Sambucol
Vitamins
ALPHA KETOGLUTARATE
DEFINITION. Alpha ketoglutarate is an
ionic form of alpha ketoglutarate acid, an intermediate in the
tricarboxylic cycle (Krebs cycle).
BACKGROUND. Alpha ketoglutarate
fulfills a vital role in the metabo lism and utilization of
carbohydrates, proteins, and long-chain fatty acids. Its best known
function is as a component of a number of energy-produc ing cycles at
the cellular level. The first of these, the Krebs cycle, breaks down
and transforms citric acid through a series of enzyme-controlled
re actions to produce adenosine triphosphate (ATP), a crucial energy
source for many cell processes. Alpha ketoglutarate, as an early
intermediate in the Krebs cycle, forms the basis for all further
transformations. It is also re quired for catabolism of many amino
acids, another process that generates energy. Another important
function of alpha ketoglutarate involves the formation of
nonessential amino acids (amino acids that are biosynthesized in the
body), notably glutamate and, through its action, proline, alanine,
aspartic acid, and asparagine.
USES IN CFIDS. Alpha ketoglutarate is
used as a short-term energy en hancer and for Krebs cycle support in
patients with CFIDS. Because of its essential role in energy
production and carbohydrate metabolism, it may be useful as a general
CFIDS treatment as well. Patients with low levels of alpha
ketoglutarate (as confirmed by an Organic Acids Test) have noted
significant improvement in energy levels with alpha ketoglutarate
supple mentation.
PROTOCOL. Suggested dosage of alpha
ketoglutarate is one or two 300 mg capsules per day, which can be
taken with meals. Because of its location in the Krebs cycle, alpha
ketoglutarate is generally more effective if taken with other Krebs
cycle supports such as vitamin C, B vitamins, essential fatty acids
(evening primrose oil, borage oil, or fish oil), magnesium,
nu tritional supplements, and NAC (N-acetyl-L-cysteine).
PROS AND CONS. Because alpha
ketoglutarate is not a stimulant but works through natural metabolic
pathways, it is a relatively risk-free source of energy. People who
take alpha ketoglutarate usually do not "crash" afterward.
It has no reported side effects at recommended doses. Results tend to
be less dramatic than those obtained with CoQ10, howev er, which may
make this product less attractive to those who want a greater boost.
AVAILABILITY AND COST. Alpha
ketoglutarate is sold in many health food stores and by mail-order
vitamin suppliers. One bottle of Alpha KG+ (Metabolic Maintenance
Products; 800-772-7873), a quality, hypoallergenie brand that
contains no preservatives, additives, colorings, or fillers, costs
about $10 and lasts 1 month at the highest recommended dosage.
AMINO ACIDS
DEFINITION. Amino acids are
nitrogen-containing chemical units (amines) that, bound together,
make up protein.
BACKGROUND. The amino acids, in various
combinations, form the hundreds of types of proteins present in every
living organism. These pro teins are essential for nearly all
processes that induce cell growth and re pair, as well as for
continued maintenance of every body tissue, organ, and structure
within the body. Amino acids link together to form tens of thou sands
of proteins and enzymes, each of which has a specific function. They
can also perform as individual units. Single amino acids can act as
neurotransmitters or as precursors to neurotransmitters in the
central nervous system. Therefore, not only are they responsible for
providing and main taining the very substance of which we are made,
but also for the commu nications system that enables us to plan,
dream, think, feel, and direct our every action.
There are 20 primary amino acids. About
80% are produced in the liv er and the remaining 20% must be obtained
from food. Whether an amino acid can be produced within the body is
what distinguishes the essential from nonessential amino acids. The
essential amino acids (those that must be obtained from food sources)
are arginine, histidine, isoleucine, leucine, lysine, methionine,
phenylalanine, threonine, tryptophan, and valine. Nonessential amino
acids include alanine, glutamine, asparagine, glycine, proline, and
serine. Given the countless functions that amino acids per form, a
protein shortage or congenital defect in amino acid synthesis can
lead to problems that involve every system in the body.
USES IN CFIDS. Specific amino acids,
both essential and nonessential, have been recommended as treatments
by a number of CFIDS clinicians. Their applications include mediation
of hyperactive nervous system re sponses, repair of leaky gut and
other intestinal disturbances, and regula tion of the CFIDS metabolic
dysfunction that results in loss of cellular en ergy.
In CFIDS there is an imbalance in amino
acid ratios. Dr. Alexander Bralley and Dr. Richard Lord have noted
that people with CFIDS com monly have deficiencies in tryptophan,
phenylalanine, taurine, isoleucine, and leucine. They also have found
lower than normal amounts of arginine, methionine, lysine, threonine,
and valine in a smaller number of CFIDS patients. It is significant
that the most common deficiencies are of phenylalanine and tryptophan
because these two amino acids are precursors to the catecholamines
and serotonin, neurotransmitters that are closely in volved with
sleep function, stress responses, and regulation of pain and mood.
Dr. Scott Rigden has also noted that many of their patients with metabolic abnormalities have an imbalance in amino acid ratios. The im plication is that, for these patients, amino acids may be either synthesized or utilized at a slower rate or appear in such disequilibrium that they no longer function together with full efficiency (perhaps giving a clue to the origins of the collagen formation problems and enzyme disturbances common in many patients with CFIDS).
Dr. Scott Rigden has also noted that many of their patients with metabolic abnormalities have an imbalance in amino acid ratios. The im plication is that, for these patients, amino acids may be either synthesized or utilized at a slower rate or appear in such disequilibrium that they no longer function together with full efficiency (perhaps giving a clue to the origins of the collagen formation problems and enzyme disturbances common in many patients with CFIDS).
Amino acid supplementation has recently
received some attention as a specific CFIDS treatment. Using an amino
acid analyzer to measure specif ic imbalances, Dr. Bralley and Dr.
Lord tailored a supplement to correct amino acid deficiencies. In a
study of 25 CFIDS patients, they found that correcting specific amino
acid imbalances resulted in 50% to 100% im provement in symptoms
(Journal of Applied Nutrition, 1994). The greatest effect was noted
in energy levels. Two patients who had had CFIDS symp toms for 15
years experienced dramatic improvement. Patients also re ported
improvement in cognitive function and elimination of "brain
fog." It should be noted that single amino acids taken as
dietary supplements may not be well tolerated by patients with
serious metabolic disturbances.
Carnitine
Carnitine (L-Carnitine) is a betaine,
one of the methyl group donors. It is crucial for the transport of
long-chain fatty acids into the mitochondria of cells, which provides
energy to skeletal and heart muscle. Carnitine also aids in reducing
toxic buildup of organic acids, which are a natural by product of
cell metabolism. Carnitine deficiency produces fatigue, muscle
weakness, malaise, exercise intolerance, heartbeat abnormalities, and
tis sue acidosis. Carnitine deficiency can result from congenital
metabolic de fects and some antibiotic therapies.
USES IN CFIDS. Japanese researchers
have shown that CFIDS patients have a deficiency in intracellular
levels of acylcarnitine. They found no de ficiency in serum levels of
free carnitine, however, indicating the deficien cy is not the result
of lack of carnitine in the system but of its derivative.
Acylcarnitine deficiency can be expected to produce not only the
fatigue and weakness characteristic of interruption in mitochondrial
processes but also the malaise typical of autointoxication. Dr.
Hiroko Kuratsune and colleagues discovered that in their sample group
of 38 CFIDS patients, low levels of acylcarnitine covaried with the
severity of the illness (Clinical Infectious Diseases, 1994). As
symptoms improved, so did acylcarnitine levels. In a recent study
comparing amantadine and carnitine, Dr. Audrius Plioplys and Dr.
Sigita Plioplys found "statistically significant clinical
im provement" after 8 weeks of treatment (Neuropsychobiology,
1997).
PROTOCOL. Carnitine can be taken in
liquid or pill form as an over-the-counter nutritional supplement or
as a prescription medication. As a food supplement, the general
recommended dosage is 1000 mg/day taken with a meal. The prescription
medication Carnitor (levocarnitine) can be taken as a tablet, liquid,
or injections. The recommended oral dosage of liquid Carnitor is 50
mg/day in divided doses, taken with meals, and of tablets is 330 mg
three times a day. The liquid is better tolerated than the pill form
although patients with chemical sensitivities should note that the
liquid drug also contains artificial flavors, colors, preservatives
(methylparaben), and sucrose.
PROS AND CONS. Carnitine as a food
supplement is widely available. The only side effect reported is
weight change (gain or loss). Patients have reported increased muscle
function, decreased weakness, and overall im proved stamina and
well-being after 1 to 2 months of carnitine supple mentation. In some
cases, the benefits remained even after finishing the course of
treatment. Side effects of Carnitor include diarrhea, upset stom ach,
and body odor. The manufacturers recommend taking divided doses with
meals to avoid stomach upset.
AVAILABILITY AND COST. A 12 oz bottle
of the liquid nutritional sup plement Mega L -Carnitine (made by Twin
Labs) can be purchased over the counter at most vitamin and health
food stores for about $20. At the recommended dosage of 1 tablespoon
a day, the bottle will last for 1 month. A 1-month supply of
prescription tablets (Carnitor) costs about $79.
Glutamine
Glutamine is a nonessential amino acid
used to treat sugar craving, fa tigue, peptic ulcers, and personality
disorders. When converted to glutamic acid, it acts as an excitatory
neurotransmitter in the brain. In the intesti nal tract, glutamine
strengthens the gut's function as an immune barrier by supporting the
production of secretory immunoglobulin A (slgA) and maintains the
structure, metabolism, and function of the mucosal lining of the
intestines. Glutamine can help heal injured gut mucosa after surgery
and, in a high percentage (92%) of patients, completely heals ulcer
damage. Glutamine is an important detoxifying agent for ammonia, a
neurotoxin and one of the toxic by-products of protein metabolism.
USES IN CFIDS. Glutamine is primarily
used to treat leaky gut because it is so important in
gastrointestinal growth and function. Clinicians rec ommend 1000 mg
of glutamine daily, divided into equal doses (patients with many
sensitivities may want to test a very small amount of this amino acid
before taking the full dose). A number of CFIDS patients have noted
improvement in gut function and increased food tolerance with this
treat ment. Side effects from this amino acid are relatively rare;
the most com mon are lethargy and depression. Glutamine in tablet
form is fairly inex pensive. A 100-tablet bottle (500 mg) costs less
than $15. The cost of the powdered form (for those who need a higher
dose) is about $29 for a 280 gm jar (Cambridge Neutraceuticals;
800-265-2202).
Glutathione
Glutathione, a tripeptide composed of
glycine, cysteine, and glutamic acid, is found in high concentrations
in every tissue in the body. It is a powerful antioxidant and
detoxification agent, protecting the body against damage from oxygen
radicals such as hydrogen peroxide and superoxide. It also helps
reduce injury caused by radiation, chemotherapy, heavy met als
(mercury), and drugs (including cigarettes and alcohol). NAC
(N-acetyl-L-cysteine), a precursor to glutathione, is an antidote to
acetaminophen poisoning and helps deter the toxic effects of
naphthalene, benzene, and anthracine.
USES IN CFIDS. Glutathione is used
primarily as an antioxidant and as an aid in detoxification. Because
a number of CFIDS patients have low glutathione levels, this peptide
is increasingly gaining attention among CFIDS clinicians as a means
to combat some of the symptoms associated with impaired
detoxification processes. The important role it plays in liver
function makes it particularly useful for patients with numerous
sensitivi ties, allergy-type reactions, and autointoxication symptoms
(malaise, headache, muscle pain). Dr. Paul Cheney has noted a
striking improve ment in patients' symptoms, especially headache,
within days of initiating glutathione treatment. Because glutathione
is poorly absorbed in the gut, he recommends reduced glutathione
(CFIDS Chronicle, Spring 1995). Initial doses are high, from 150 to
425 mg three times a day. After a short time, doses can be reduced to
75 to 150 mg three times a day and main tained at those levels.
Glutathione is available from health food stores and mail-order
suppliers. A bottle of 60 reduced glutathione capsules (100 mg) costs
about $21.50. Capsules should be taken with meals to avoid stomach
upset.
Lysine
Lysine is needed for bone growth in
children and to maintain nitrogen balance in adults. It also aids in
the production of antibodies, hormones, and enzymes and helps in
collagen formation, muscle building, and tissue repair. Lysine
deficiency can result in hair loss, anemia, bloodshot eyes, loss of
energy, and irritability.
USES IN CFIDS. Lysine is recommended
chiefly because of its ability to inhibit reproduction of
herpesviruses (herpes simplex virus, varicella zoster virus, human
herpesvirus 6, and Epstein-Barr virus), which require arginine in
order to reproduce. Lysine's structure is similar enough to arginine,
however, that herpesviruses can be fooled into using lysine instead.
Since the virus cannot use lysine for replication, once the lysine is
used, the virus loses its ability to reproduce, effectively halting
the spread of the infection. Some CFIDS doctors recommend lysine to
treat frequent out breaks of cold sores (herpes simplex) or shingles
(herpes zoster).
PROTOCOL. Dr. Charles Lapp recommends 1
to 2 gm of lysine, taken daily with meals (CFIDS Chronicle, March
1991). Foods high in arginine, such as chocolate, nuts, raisins,
whole wheat, cereal, and brown rice, should be avoided. Side effects
of lysine can include dizziness, sweating, nausea, appetite loss, and
difficulty swallowing. Lysine should be discon tinued if these
symptoms develop. Lysine is available in most health food stores and
can be purchased inexpensively. Most brands retail for less than $10
for a 100-capsule bottle (500 mg).
Taurine
Taurine acts as a building block for
all other amino acids and conse quently is present in every cell in
the body. It is a prime component of bile (thus aiding in fat
digestion and vitamin absorption) and is found in high concentrations
in heart muscle, white blood cells, and the central nervous system
(CNS). Anxiety, hyperactivity, and poor brain function are related to
taurine deficiency. Taurine can be synthesized in the body from
cysteine, with the aid of vitamin B6.
USES IN CFIDS. Dr. Majid AM, author of
The Canary and Chronic Fatigue, makes extensive use of taurine as an
antioxidant and has reported excellent results in treating fatigue
and chronic constipation. He recommends a dosage of 250 mg/day, along
with magnesium and potassium. Taurine may also be of benefit in
treating hyperactive nervous system re sponses. Because taurine slows
CNS impulses, it may help relieve symp toms such as insomnia,
anxiety, and restlessness. Taurine can be purchased in most health
food and vitamin stores and costs less than $10 a bottle.
ANTIOXIDANTS
DEFINITION. Antioxidants are a group of
vitamins, minerals, and en zymes that help protect cells from free
radical damage.
BACKGROUND. Antioxidants have long been
used as preservatives be cause of their ability to retard the
oxidation that causes oils to become ran cid. However, they have come
under increasing scrutiny over the past few years for their medical
value. The same process that allows them to prevent oils from
becoming rancid also protects the body from damage caused by free
radicals. Free radicals are atoms or groups of atoms that have lost
an electron. These molecules containing unpaired electrons are highly
unsta ble and can easily pick up other elements, causing volatile
reactions. When large numbers of free radicals are formed, whether
from exposure to radi ation, toxic chemicals, or rancid oils, or
because of prolonged illness and immune activation, significant
damage can result. When dangerously high levels of free radicals are
present, changes in protein structure can result. The body may
identify the altered proteins as foreign elements and launch an
immune system attack.
The body has its own defenses against
excess free radical formation. The group of biochemicals known as
antioxidants are found abundantly in nature in the form of vitamins,
minerals, and enzymes. The most wide ly used antioxidants are
vitamins A, C, and E, gamma-linoleic acid (GLA), the amino acids
cysteine and glutathione, the mineral selenium, the en zyme
superoxide dismutase (SOD), CoQ10, and the bioflavonoids in
pycnogenol, milk thistle, and gingko (see specific discussions of
these agents).
Antioxidants operate in concert to
prevent free radical damage. A sin gle antioxidant, once it has
neutralized the free radical, can itself cause cell damage. The
action of other antioxidants is necessary to return antioxi dants to
their reduced state, in which they can continue to scavenge free
radicals. Therefore, antioxidants should be taken in combination
rather than single forms. An article in The New England Journal of
Medicine re ports that heavy smokers in Finland who took very high
doses of the an tioxidant beta carotene had a higher rate of lung
cancer than those taking a placebo (CFIDS Chronicle, Spring 1995).
However, when beta carotene was combined with vitamin E, this was not
the case.
USES IN CFIDS. Patients with CFIDS
demonstrate evidence of consid erable free radical formation, which
means some form of antioxidant ther apy should be included in any
treatment program. Orthomolecular clini cians recommend a
broad-spectrum approach, as opposed to single-sup plement therapy.
Pycnogenol is a particularly potent antioxidant, but not always well
tolerated. Grape seed extract can be used as a substitute. Vitamin E,
because it is the only fat-soluble antioxidant, is particularly good
in combination with other antioxidants such as selenium, beta
carotene, and vitamin C.
BIOFLAVONOIDS
DEFINITION. Bioflavonoids are
glycosides (sugars) derived from cit rus, paprika, and other plants,
which serve to protect capillaries. Although formerly known as
"vitamin P," bioflavonoids are not vitamins.
BACKGROUND. Bioflavonoids were first
extracted from paprika in 1936 by a scientist who claimed that the
substance had a greater effect than vitamin C in reducing capillary
bleeding. It was later shown that the sub stance, or rather
substances, helped maintain capillary strength by inhibit ing
permeability of the walls (rather than maintaining the actual
structure, as does vitamin C). This may be because bioflavonoids
inhibit oxidation of epinephrine (adrenaline), the hormone directly
responsible for capillary wall integrity.
Bioflavonoids enhance absorption of vitamin C and, when taken together, can help protect and preserve capillaries, increase circula tion, prevent cataracts, and produce a mild antibacterial effect. Dietary sources include buckwheat, black currants, peppers, blue-green algae, and the white part of citrus peel. Some bioflavonoids are hesperidin, rutin, and quercetin.
Bioflavonoids enhance absorption of vitamin C and, when taken together, can help protect and preserve capillaries, increase circula tion, prevent cataracts, and produce a mild antibacterial effect. Dietary sources include buckwheat, black currants, peppers, blue-green algae, and the white part of citrus peel. Some bioflavonoids are hesperidin, rutin, and quercetin.
USES IN CFIDS. The bioflavonoid in
widest use among patients with CFIDS is quercetin. It is chiefly used
to treat asthma and allergies. Quer cetin has properties similar to
those of antihistamines and can inhibit mast cell production, two
functions that together can curb many allergic responses. Quercetin
is also reported to help relieve muscle pain, particu larly along the
upper back and shoulders.
PROTOCOL. Bioflavonoids may be taken
through indirect dietary sources such as blue-green algae or directly
in pill form. Quercetin needs to be taken with bromelain, an enzyme
found in pineapple, because it is so poorly absorbed. Dr. James
Balch, author of Prescription for Nutritional Healing, recommends
1000 to 2000 mg one to three times a day to prevent or lessen the
severity of asthma attacks and allergies.
PROS AND CONS. A number of
allergy-prone patients with CFIDS have noted that allergy symptoms
subside with quercetin. For patients with many allergies, this may
provide overall improvement because allergy symptoms can cause
systemic problems. The primary side effect is that high doses may
cause diarrhea.
AVAILABILITY AND COST. Quercetin is
available from health food stores and most vitamin catalogs. A
3-month supply may cost as little as $15. The CFIDS and Fibromyalgia
Health Resource (800-366-6056) mar kets a 100-tablet bottle of a
quercetin-bromelain combination (also con tains vitamin C and
magnesium) for about $30.
BLUE-GREEN ALGAE
DEFINITION. Blue-green algae (Aphanizon
flos-Aquae) is a microor ganism found in lakes and oceans and in
soil.
BACKGROUND. In evolutionary terms,
blue-green algae is one of the oldest plants on Earth. It is also the
most self-sufficient, needing only wa ter, sunlight, and air to
flourish. Blue-green algae is considered by some to be nature's ideal
food. It contains all of the essential amino acids, beta carotene, B
complex vitamins (especially vitamin B12), and other vitamins and
minerals. Much like related "green" products that have been
popular in the past (chlorella, spirulina, barley green, and green
magma), blue-green algae contains high amounts of chlorophyll.
However, unlike most other green supplements, blue-green algae
contains choline, a precursor of the neurotransmitter acetylcholine.
Blue-green algae is reputed to improve memory and concentration,
enhance immune system function, and in crease energy.
USES IN CFIDS. Blue-green algae has
recently become popular in the CFIDS community as an energy booster.
People with CFIDS have reported that blue-green algae tablets give
them greater stamina, more energy, and greater resistance to stress.
PROTOCOL. The generally recommended
dosage is three to six 250 mg tablets a day. Patients should start
with the lowest dose and increase it incrementally. Patients with
food sensitivities may want to start with a half-tablet or
quarter-tablet.
PROS AND CONS. Blue-green algae seems
to work quickly. A number of patients with CFIDS have reported good
results within a day or two. Some patients have noted that whereas a
moderate dose (two to four tablets per day) gives them energy, the
maximum dose (five or six tablets per day) keeps them up at night.
Many patients also report headaches and an overall worsening of
symptoms. The Food and Drug Administration (PDA) has received
complaints of side effects (nausea, diarrhea, numb ness, and
headaches). Although the PDA is not certain that blue-green al gae is
the cause of these symptoms, some experts believe the algae may be
contaminated with neurotoxic substances or other algae that may be
toxic to the liver (Health, 1997). Severely ill patients may want to
delay trying this product until later.
AVAILABILITY AND COST. Blue-green algae
is available from health food stores, mail-order vitamin suppliers,
and private distributors (who often charge more and may market impure
products). The CFIDS and Fibromyalgia Health Resource (800-366-6056)
markets a bottle of 120 tablets (250 mg) for $24. At a dose of four
tablets a day, a bottle lasts a month. Klamath, the brand most often
recommended, retails a 130-tablet bottle (500 mg) for $36. Discounts
are possible through L&H Vitamins (800-221-1152).
BUTYRIC ACID
DEFINITION. Butyric acid (butanoic
acid) is a short-chain saturated fatty acid found naturally in the
human intestine and in butter fat.
BACKGROUND. Short-chain fatty acids
(volatile fatty acids) are pro duced in the colon as natural
by-products of the bacterial fermentation of fiber. These fatty acids
provide an energy source for the mucosal cells of the lining of the
colon, enabling them to check the proliferation and estab lishment of
pathogens (such as Salmonella and Candida) and allowing greater
absorption of magnesium and vitamin K. Deficiency of these fatty
acids results in absorption problems, diarrhea, and, over the long
term, colitis. Of the three fatty acids found in all mammals
(butyrate, acetate, and proprionate), butyrate is the preferred
energy substrate. It stimulates the normal proliferation of mucous
cells, enabling greater efficiency of all colonic functions. Butyric
acid has been used successfully to treat Candida overgrowth (yeast
infection), cancer, ulcerative colitis, and nonspecific in flammatory
conditions of the colon. It is one of the treatments recom mended for
leaky gut and for alleviating food sensitivities.
USES IN CFIDS. The use of butyric acid
in CFIDS has been limited, probably because few clinicians other than
nutritionists and oncologists are familiar with its potential value.
Of the few patients with CFIDS who have tried butyric acid, however,
none has reported side effects other than transitory queasiness.
General improvement in digestion, reduction in leaky gut symptoms,
and increased food tolerance have all been noted. Although butyric
acid is recommended for treating digestion disorders, it may also
have a positive effect on some neurologic problems associated with
CFIDS.
Dr. Cheney proposes that an imbalance in the actions of the neuroexcitatory chemical NMDA (N-methyl-D-aspartate) and the neuro-inhibitor GABA (gamma amino butyric acid) may lead to many of the troubling neurologic symptoms experienced by patients with CFIDS (in somnia, intolerance of sensory stimuli, seizure-like activity, pain) (CFIDS Chronicle, Spring 1995). For many patients, downregulation of the NMDA receptors, accomplished with small doses of Klonopin (clonazepam), mag nesium, Nimotop (nimodipine), melatonin, or calcium channel blockers, leads to general improvement of all symptoms. Butyric acid, because it forms a component of GABA, may also rectify some of this proposed neurochemical imbalance by increasing the amount of neuroinhibitory action in the brain.
Dr. Cheney proposes that an imbalance in the actions of the neuroexcitatory chemical NMDA (N-methyl-D-aspartate) and the neuro-inhibitor GABA (gamma amino butyric acid) may lead to many of the troubling neurologic symptoms experienced by patients with CFIDS (in somnia, intolerance of sensory stimuli, seizure-like activity, pain) (CFIDS Chronicle, Spring 1995). For many patients, downregulation of the NMDA receptors, accomplished with small doses of Klonopin (clonazepam), mag nesium, Nimotop (nimodipine), melatonin, or calcium channel blockers, leads to general improvement of all symptoms. Butyric acid, because it forms a component of GABA, may also rectify some of this proposed neurochemical imbalance by increasing the amount of neuroinhibitory action in the brain.
PROTOCOL. Butyric acid is usually taken
orally. The suggested dose is one or two capsules with each meal.
PROS AND CONS. Butyric acid is
inexpensive, safe, and does not re quire a prescription.
AVAILABILITY AND COST. ButyrEn
capsules, marketed by Allergy Research Group (800-782-4274), are
hypoallergenic, containing no yeast, wheat, corn, soy, dairy
products, or artificial colors or resins. They are buffered with
calcium and magnesium. They are available from nutrition ists and
some specialized vitamin stores. One bottle of 100 capsules costs
about $17.
CoQ10
DEFINITION. CoQ10 (ubiquinone) is a
fat-soluble coenzyme found in the mitochondria of most mammal cells.
BACKGROUND. CoQ was first discovered by
R.A. Morton, a bio chemist who gave it the name ubiquinone after its
ubiquitous presence in nearly all living things. "Co"
stands for coenzyme (a vitamin-like sub stance), "Q" for
quinone (the group of organic chemicals to which CoQ belongs), and
"10" for the number of isoprene units that characterize the
particular CoQ found in animal cells. CoQ10 is vital in electron
transport, the intracellular function that ultimately provides the
energy necessary to sustain life. CoQ10 is also a powerful
antioxidant and is important in immune system function. The Japanese
have successfully used CoQ10 to treat gum disease, heart disease, and
high blood pressure, and to enhance the ef fectiveness of the immune
system. Research performed in Japan and else where indicates that
CoQ10 can be of benefit in treating allergies (owing to its ability
to block the effects of histamine), asthma, candidiasis, obesity,
diabetes, and mental function diseases such as Alzheimer's disease
and can slow the aging process (CoQ10 levels decline with age).
USES IN CFIDS. CoQ10 is one of the most
frequently recommended supplements for the treatment of CFIDS-related
fatigue because of its im portance in the production of adenosine
triphosphate (ATP), the cellular source of energy. In addition to
reducing fatigue, CoQ10 may alleviate muscle weakness and pain. It is
also one of the few supplements that seems to reduce cognitive
dysfunction. Its role as a free radical scavenger may lead to
improvement in immune responses in patients with CFIDS. Although its
effects as a natural antihistamine have not yet been specifical ly
explored in CFIDS, patients with allergies may benefit from CoQ10.
PROTOCOL. CoQ10 can be taken in a
single dose or divided into two 100 mg doses taken at different times
during the day. The normal recom mended dose is between 50 and 200
mg/day. Sublingual troches, reputedly more effective against
cognitive dysfunction, may be taken at higher doses. Oral CoQ10,
although primarily absorbed by the digestive tract and liver, is also
effective for some patients. The oral dosage varies, but is usually
25 to 50 mg/day.
PROS AND CONS. CoQ10 is a supplement
with few side effects. Responses to it are far from uniform, however.
A significant number of pa tients, particularly those with
fibromyalgia, find that CoQ10 increases their energy over the course
of the day. Others, however, report that CoQ10, while giving them an
initial energy boost, also increases insomnia and causes jitters.
Some people report, paradoxically, that CoQ10 increas es exhaustion,
although this effect may be more common in the acutely ill than in
those with stable symptoms.
AVAILABILITY AND COST. CoQ10 can be
purchased at most health food stores. High-grade brands are preferred
because CoQ10 deteriorates rapidly when exposed to heat and light.
The CFIDS and Fibromyalgia Health Resource (800-366-6056) retails
sublingual CoQ10 (50 mg) for $25.45. High-potency sublingual troches
are available by prescription through specialized compounding
pharmacies. These can be requested in pure form, without added
flavoring or coloring. A package of 24 sublin gual troches costs
about $54. These have a 30-day shelf life so must be used within a
month. Sun-Ray Supply (800-437-1765) markets an over-the-counter form
of sublingual CoQ10 with a 2-year shelf life. (These may be more
appropriate for patients who take smaller doses over a longer time.)
A 30-day supply of 200 mg troches costs $43.95. CoQ10 is not usually
cov ered by insurance because it is classified as an experimental
therapy. High amounts of CoQ10 occur naturally in fatty saltwater
fish, especially mack erel, salmon, and sardines.
DHEA
DEFINITION. DHEA
(dehydroepiandrosterone) is a naturally occur ring adrenal hormone.
BACKGROUND. DHEA, a hormone produced in
the adrenal cortex, generates the sex hormones estrogen and
testosterone. It is the most com mon hormone in the blood and is
found in greatest concentrations in the brain. Perhaps because DHEA
levels decrease with age, it has been called "the fountain of
youth." Preliminary research has provided evidence that DHEA may
help the elderly by strengthening bones and muscles, decreas ing
joint pain, and improving sleep and mood. In addition to influencing
hormone production, DHEA has several effects on immune system
func tion, not the least of which is the regulation of lymphokine
production. A study conducted in 1993 by researchers at the
University of Tennessee showed that DHEA decreases the amount of
circulating interleukin-6 (a potent bone resorber) and enhances the
function of natural killer cells. Because of these and other immune
system-enhancing properties, DHEA has been used to treat systemic
lupus and AIDS.
USES IN CFIDS. Inspired by mounting
evidence of adrenal cortical hypofunction in CFIDS, clinicians have
begun testing for blood levels of DHEA in CFIDS patients and have
discovered lower than normal levels. Based on these results, low
doses of DHEA have been administered in hopes of raising immune
function and normalizing the metabolic and en docrine disturbances
that commonly accompany CFIDS. It is believed that DHEA could also
act as an antiviral agent because testosterone, a DHEA derivative,
has demonstrable antiviral effects.
PROTOCOL. The usual dosage of DHEA is
25 to 100 mg/day, although a number of clinicians report good results
with smaller doses. Dr. Majid Ali states that he frequently
prescribes DHEA in doses of 50 mg taken on alternating days for up to
several months. In contrast, Dr. James McCoy has found that smaller
doses (10 mg or less) are equally, if not more, effec tive than
larger doses (CFIDS Chronicle, Fall 1993). He recommends start ing at
one tenth the normal dose to minimize the chance of negative
reactions. Many patients with CFIDS confirm that the smaller doses
(10 mg) work well for them.
PROS AND CONS. Patients with CFIDS have
reported weight loss, in creased energy, improved cognitive function,
and better immune system responses with DHEA. However, a number of
patients have reported heart palpitations, jitters, and altered
mental and emotional states. Dr. Paul Cheney points out that DHEA is
often most beneficial in mild CFIDS and notes that even in cases
where DHEA deficiency can be documented, ad ministration of this
hormone has caused severe relapse in some of his more severely ill
patients (CFIDS Chronicle, Spring 1995). It is important to remember
that even though DHEA is a natural substance, it is still a powerful
hormone. Hormones, because they are released directly into the blood
stream, produce profound metabolic effects, not all of which are
in tended. Like other steroid or hormone treatments, DHEA is not
without some risk and must be approached with caution.
AVAILABILITY AND COST. DHEA can be
synthesized from wild yam and other roots and thus is fairly easy to
produce commercially. It can be purchased through mail-order catalogs
and at most health food stores. Some patient-recommended brands are
available from Pure Encapsu lations (800-753-2277) and AMNI
(800-356-4791). A single bottle gener ally lasts 1 to 3 months,
depending on the dose taken, and costs $15 to $30.
One of the natural precursors to DHEA,
pregnenolone, also seems to produce positive results in patients with
CFIDS. Patients report increased energy, enhanced mental clarity, and
general improvement after taking pregnenolone. The dosage is 10 mg
every other day in patients younger than 50 years and 20 mg every
other day in patients over 50 years old. Pregnenolone can be
purchased from the CFIDS and Fibromyalgia Health Resource
(800-366-6056).
ENTERO-HEPATIC RESUSCITATION PROGRAM
DEFINITION. The Entero-Hepatic
Resuscitation Program is a dietary supplementation plan designed to
support and increase efficient function ing of the intestines and
liver.
BACKGROUND. The Entero-Hepatic
Resuscitation Program is basi cally a modified diet plan accompanied
by a powdered nutritional supple ment (UltraClear) that was designed
to improve liver and gastrointestinal function. The program was
developed to assist patients with compromised digestion, liver
detoxification system impairment, and cellular metabolic
abnormalities. The main theory behind the program is that these
patients have similar problems in removing toxins, whether
originating from out side sources or from the metabolic waste
produced naturally in the body. As these toxins build up, a number of
symptoms develop (gastrointestinal problems, fatigue, skin problems,
malaise, weakness, insomnia, and poor concentration), indicating that
the body's natural systems of detoxifica tion are not functioning
properly. The Entero-Hepatic Resuscitation Program, in combination
with an elimination diet, is designed to help re build or support the
major organs responsible for detoxification and di gestion. Once
these are restored to full function, they will be able to speed the
process of elimination and reduce the number of metabolic poisons
that result from faulty or incomplete digestion. The program
accomplish es this by providing the specific nutrients the body needs
to ensure smooth functioning and repair of intestinal mucosal linings
and by enhancing liv er function with liver enzymes.
USES IN CFIDS. Dr. Scott Rigden has
designed a program specifically for patients with CFIDS (CFIDS
Chronicle, Spring 1995). It is based on the principle that, because
of underlying metabolic abnormalities, most pa tients with CFIDS are
unable to effectively clear toxins from their systems, resulting in
what amounts to a perpetual condition of self-poisoning. Dr. Rigden
attributes many CFIDS symptoms, including cognitive problems,
depression, fatigue, weight gain, sleep disorders, and recurrent
yeast infec tions, to faulty detoxification originating in the liver
and intestines. He backs up his theory with study results from his
own patients that show not only impaired elimination pathways but
also marked improvement in those patients who have completed one of
two entero-hepatic resusci tation programs. Those patients who would
best benefit from entero-hepatic resuscitation are those who
experience recurrent gastrointestinal problems; have food, chemical,
or environmental sensitivities; demon strate abnormal findings on
liver function tests; or have chronic headache or muscle and joint
pain.
PROTOCOL. The Entero-Hepatic
Resuscitation Program can be ad justed to fit specific needs and
symptoms. To this end, Dr. Rigden uses two programs, tailored to the
degree of severity and type of symptoms of each patient. One program
utilizes UltraClear Sustain, a supplement that con tains Jerusalem
artichoke flour; the other utilizes UltraClear, which does not.
Severity of illness or gastrointestinal problems are measured by
means of liver function tests, detoxification pathways, and the
Metabolic Screening Questionnaire (MSQ), a self-administered
questionnaire de signed to rate symptom intensity and frequency
duration (for a copy of the MSQ, send a self-addressed stamped
envelope to The CFIDS Associ ation of America, PO Box 220398,
Charlotte, NC 28222-0398).
Dietary restrictions vary according to
the severity of symptoms, but all patients are encouraged to avoid
alcohol, caffeine, sugary foods, fatty foods, processed foods, and
foods that may provoke allergic reactions (wheat, barley, rye, oats,
and, for some patients, dairy products or meat), as well as any foods
to which there are suspected sensitivities. Among those who begin the
program, Dr. Rigden notes that many experience temporary worsening of
gastrointestinal symptoms 2 to 3 days into the program, but this
passes within 2 weeks. To avert the transient problems associated
with the program, patients are advised to take the supplement with a
meal and to divide it over the day in small amounts. In addition, all
participants in the program are urged to drink 2 quarts of pure water
daily.
PROS AND CONS. Although Dr. Rigden
points to a very high success rate (80%) in the 200 patients in his
study, the program may not be appro priate for many in most need of
its benefits. Patients who have numerous food sensitivities, for
example, may not be able to follow the dietary re strictions required
by the program. Dr. Rigden also notes that patients with leaky gut
may have to heal the mucosal membrane before embarking on
entero-hepatic resuscitation. In addition, Dr. Rigden's success in
pa tients who have either been ill for long periods of time or have
significant impairment in niitochondrial function (resulting in many
amino acid ab normalities) is less than encouraging.
Dr. Rigden remarks that in severely ill patients (those who have urinary sulfate/creatine ratios less than 1) this program may actually make symptoms worse. Dr. Paul Cheney has also noted that patients with low glutathione levels may have a severe relapse because UltraClear acts as a liver stimulant. Stimulating the liver increases the demand for glutathione, which in patients who already have glu tathione deficiency, may worsen autointoxication. This program works best in patients who have been moderately to mildly ill for less than 3 years. This does not preclude other patients from trying it. Success rates may be diminished among those who have been ill for longer than 3 years, but some benefits may be seen and, in those with chronic digestive prob lems, may well be worthwhile. However, supervision by a physician or nu tritionist and prior testing for glutathione levels are a must in these cases.
Dr. Rigden remarks that in severely ill patients (those who have urinary sulfate/creatine ratios less than 1) this program may actually make symptoms worse. Dr. Paul Cheney has also noted that patients with low glutathione levels may have a severe relapse because UltraClear acts as a liver stimulant. Stimulating the liver increases the demand for glutathione, which in patients who already have glu tathione deficiency, may worsen autointoxication. This program works best in patients who have been moderately to mildly ill for less than 3 years. This does not preclude other patients from trying it. Success rates may be diminished among those who have been ill for longer than 3 years, but some benefits may be seen and, in those with chronic digestive prob lems, may well be worthwhile. However, supervision by a physician or nu tritionist and prior testing for glutathione levels are a must in these cases.
AVAILABILITY AND COST. UltraClear
products are available through nutritionists, physicians, and other
health care providers. They are rarely distributed through health
food stores. UltraClear and UltraClear Sustain can be directly
purchased at a discount from L&H Vitamins (800-221-1132). One
29.4 oz jar of UltraClear Sustain costs $42. Seven jars are need ed
to complete the 3-month program. One 32.6 oz jar of UltraClear powder
costs $50.20. Additional information is available through Health
Comm, Inc. (206-851-3943).
Caution: Because of the possibility of
severe side effects, the program must be supervised by a physician.
MORE INFORMATION
The CFIDS Chronicle, Spring 1995 issue
contains an article describing Dr. Rigden's Entero-Hepatic
Resuscitation Program. The CFIDS Chronicle, Fall 1993 issue includes
Dr. Cheney's report on the general suitability of entero-hepatic
programs for patients with CFIDS.
ESSENTIAL FATTY ACIDS
DEFINITION. Essential fatty acids are
fats (lipids) that are important in a number of physiologic
processes. They cannot be produced by the body and therefore must be
obtained through dietary sources.
BACKGROUND. The two most important
types of essential fatty acids are omega-3 and omega-6. Omega-3 fatty
acids are found in fish oil (espe cially cold water fish) and
flaxseed oil (linseed oil). Omega-6 fatty acids are found in many
plant oils, including evening primrose oil, borage oil, and black
currant oil.
Essential fatty acids are vital to a
number of physiologic processes, such as regulating cholesterol
levels, keeping the skin moist and supple, and producing
prostaglandins (hormone-like substances that affect a variety of body
functions). Essential fatty acids are also indispensable in
maintaining the structure and function of cell membranes.
Several factors can affect fatty acid
metabolism. Poor diet, stress, dia betes, excessive alcohol intake,
radiation, and viral infections can disrupt the metabolism of
essential fatty acids, making it difficult for the body to produce
fatty acid metabolites in sufficient quantities. In such cases,
sup plementation may be necessary to prevent deficiency states.
Supple mentation with essential fatty acids has improved such diverse
conditions as premenstrual syndrome (PMS), heart disease, rheumatoid
arthritis, multiple sclerosis, hyperactivity in children, and
mononucleosis.
USES IN CFIDS. In 1987, Dr. Peter
Behan, a professor of Clinical Neurology in Glasgow, Scotland, found
that patients with CFIDS had a disorder in fatty acid metabolism. Dr.
Behan surmised that the disorder was the result of chronic viral
infection, much like mononucleosis, a pro longed illness that also
produces abnormal serum fatty acid concentration. He conducted a
double-blind trial using a fatty acid supplement (Efamol) that
contains both omega-3 and omega-6 fatty acids (Acta Neurologica
Scandinavica, 1990). After 16 weeks of treatment, an astounding 85%
of patients showed marked improvement, primarily in the areas of
fatigue, dizziness, headaches, depression, and muscle pain. Since
then, a number of other researchers have confirmed Dr. Behan's
findings, making essential fatty acids one of the most highly
recommended supplements for treating CFIDS.
PROS AND CONS. Essential fatty acids
are an effective, readily avail able, and relatively inexpensive
supplement. Of the many supplements currently marketed, essential
fatty acids are among the most widely used in CFIDS. They produce
relatively few side effects. People with schizophre nia, however,
should not take evening primrose oil because it may interact with
phenothiazine drugs (antipsychotics) and precipitate temporal lobe
epilepsy.
EVENING PRIMROSE OIL
Evening primrose oil is the most
popular and perhaps most effective of the omega-6 essential fatty
acids. It comes from the evening primrose (Oenothera), a lovely
yellow flower that grows wild along roadsides. The seeds contain
large amounts of GLA (gamma-linoleic acid), a linoleic acid
metabolite. Evening primrose oil has been used to help alleviate the
symp toms of premenstrual syndrome (PMS), menstrual cramps, and
arthritis, often with dramatic results. It may even lessen the
symptoms of endometriosis.
Patients with CFIDS have reported
increased energy, improvements in skin disorders (eczema, acne, dry
skin), and decreased mood swings. Side effects, although uncommon,
include headache, nausea, mild intestinal discomfort, and, rarely,
weight gain.
The brand recommended by most patients
and clinicians, Efamol, is produced in Great Britain and marketed in
the United States by Murdock Pharmaceuticals. A bottle of 90 capsules
(500 mg) costs $20.95. Other brands available in the United States
can also be purchased through health food stores or the CFIDS and
Fibromyalgia Health Resource (800-366-6056), which markets its own
brand for the reasonable price of $18 per bottle (100 softgel
capsules). The dosage is two to six capsules a day. Efamol Marine, a
blend of 80% evening primrose oil and 20% fish oil, was used by Dr.
Behan in his study. The dosage for Efamol Marine is eight cap sules a
day for up to 12 weeks, after which the dose can be reduced. Efamol
Marine costs $15 to $30 a month, depending on the dosage.
BORAGE SEED OIL
Borage seed oil, made from the borage
plant, contains the highest GLA content of any currently available
seed oil, up to four times more than the GLA content of evening
primrose oil. Patients who have gained little ben efit from or cannot
tolerate evening primrose oil because of food sensitiv ities often
take borage oil with good results. The recommended dose is lower than
for evening primrose oil, only one to three capsules a day. GLA-240
(Metabolic Maintenance) costs $17.50 per bottle (60 softgel capsules)
and is available in health food stores. Another brand, Max GLA, is
available from the CFIDS and Fibromyalgia Health Resource
(800-366-6056) and costs about $20 for a bottle of 60 softgel
capsules.
FISH OILS
The oil derived from deep-sea fish
(sardines, mackerel, salmon, and herring) is the richest source of
omega-3 fatty acids. Four ounces of salmon can contain as much as
3600 mg of omega-3 fatty acids (compared with 300 mg in the same
amount of cod). Fish oil capsules have been par ticularly helpful in
treating fibromyalgia, often providing immediate relief from pain.
Fish oil is so effective that some physicians suggest it in place of
Advil (ibuprofen) for pain from inflammation. Because of its
anti-inflam matory properties, fish oil can also be used to treat
arthritis and colitis. The only side effect reported is indigestion.
High-quality brands of fish oils are
available from Kyolic and Cardio vascular Research Ltd. Plain cod
liver oil is not recommended because the amount needed to provide
sufficient fatty acids might lead to an overdose of vitamin A. Fish
oils can range in price from $5 to $15 for a month's sup ply,
depending on the brand, and can be purchased in health food stores or
through vitamin catalogs. The usual dose is one to four capsules a
day.
FLAXSEED OIL
Flaxseed (linseed) is a good plant
source of omega-3 fatty acids. It is also high in magnesium and zinc,
two important factors in fatty acid me tabolism, as well as B complex
vitamins, protein, and potassium. Flaxseed oil is low in saturated
fat and calories and contains no cholesterol. It has a delicious
nutty flavor and can be added to salad dressings or sprinkled over
vegetables.
Flaxseed is high in alpha-linoleic acid
(ALA), which the body converts to eicosapentaenoic acid (EPA) and
docosahexaenoic acid (DHA), the two fatty acids found in fish oils.
Some clinicians prefer flaxseed oil to fish oil because it is lower
on the food chain and thus contains fewer fat-soluble contaminants.
Fish oils, as opposed to vegetable oils, also contain large amounts
of vitamin A, which can be toxic in excessive amounts.
Flaxseed oil can be purchased in health
food stores and is inexpensive. At 1 to 3 tablespoons a day, a
month's supply costs $5 to $10. Flaxseed oil must be stored in the
refrigerator to avoid rancidity. It should not be used for cooking.
FURTHER READING
Graham, Judy. Evening Primrose Oil.
Rochester, Vt.: Healing Arts Press, 1987.
Rudin, Donald O, and Felix, Clara, with
Schrader, Constance. The Omega-3 Phenomenon. New York: Avon Books,
1987.
GLUCOSAMINE SULFATE
DEFINITION. Glucosamine sulfate is a
mucopolysaccharide made up of the sugar glucose and the amino acid
glutamine. Glucosamine sulfate is the synthetic form of glucosamine,
a naturally occurring amino acid com pound found in the joints.
BACKGROUND. Glucosamine sulfate has
been used for many years in Europe, Asia, and the Philippines to
treat osteoarthritis. It appears to stim ulate the synthesis of
connective tissue and cartilage by aiding in the pro duction of
glucosaminoglycans and proteoglycans, the key building blocks of
cartilage. Because glucosamine is also one of the main components of
the synovial fluids that cushion joints and surrounding tissues, it
has been used to treat degenerative joint diseases. It also may have
anti-inflammato ry properties, thereby lessening the need for
anti-inflammatory pain med ications.
USES IN CFIDS. Because glucosamine
sulfate has only recently gained public attention, it is difficult to
determine how useful it may be for people with CFIDS. Its mode of
action indicates that, in theory, it may be of ben efit to patients
with joint pain, fibromyalgia, or interstitial cystitis.
PROTOCOL. Dr. Jason Theodasakis, author
of The Arthritis Cure, sug gests taking glucosamine sulfate with
chondroitin, another mucopoly saccharide, for maximum benefits. His
daily dosage recommendations are based on patient weight:
• Less than 120 pounds: 1000 mg
glucosamine sulfate plus 800 mg chondroitin
• 120 to 200 pounds: 1500 mg
glucosamine sulfate plus 1200 mg chondroitin
• 200 pounds or more: 2000 mg
glucosamine sulfate plus 1600 mg chondroitin
Other health care providers believe
glucosamine sulfate is effective alone, although some recommend the
addition of bromelain, an enzyme derived from pineapple, to help
maximize its effects. Standard adult dos age as indicated by the
manufacturer is one or two tablets three times a day. Health effects
should be noticed within 6 to 8 weeks. If no benefits are apparent by
then, glucosamine sulfate should be discontinued.
PROS AND CONS. Glucosamine sulfate is
generally considered safe and is well tolerated by most patients.
However, some may be allergic to its source (usually crustacean
shells). Patients taking blood thinners should consult with their
physician before taking glucosamine sulfate because many of the
mucopolysaccharides inhibit platelet formation.
AVAILABILITY AND COST. Glucosamine
sulfate is available from health food stores and mail-order
distributors. The Bronson mail-order brand (800-235-3200) retails for
$14.99 (60 600 mg tablets). The CFIDS and Fibromyalgia Health
Resource brand (800-366-6056) retails for $22.95 (90 tablets). Health
food stores also market glucosamine sulfate.
HERBS
DEFINITION. Medicinal herbs are plants
taken orally as teas or tinc tures or applied topically as poultices.
BACKGROUND. Plants have always been
used as remedies, which makes herbal treatment the earliest form of
medicine. (The earliest human graves contain remnants of medicinal
flowers.) Even animals eat certain plants when they become ill.
Throughout the ages, people have used herbal remedies for an
assortment of problems and, until the nineteenth century, herbs were
the treatment of choice for most common ailments. Herbs are so
ubiquitous that they are regarded as folk remedies. The con temporary
medical world, as a consequence, has largely excluded them from
scientific investigations, with the exception of the Chinese, who
take herbs quite seriously. The government of China has funded
research to study the chemical components, action, and efficacy of a
number of herbs.
USES IN CFIDS. A large number of
patients with CFIDS symptoms use herbs regularly, as herbal
substitutes for caffeine-laden coffee and teas or as adjuncts to
other therapies. Although many find that a particular herb is helpful
for a specific symptom, most report that herbs have limited value in
treating CFIDS over the long term. It should be noted, however, that
pa tients who have tried Chinese herbs (usually on the recommendation
of an acupuncturist) generally report a higher rate of success.
PROTOCOL. Although herbalists recommend
blending herbs for max imum effect, patients with CFIDS frequently
have had poor responses to multiple-herb blends. For CFIDS symptoms,
herbs are best taken singly in teas or tinctures. Teas are prepared
according to the part of the plant used. One teaspoon of herb leaves
is steeped in 2 cups of boiling water for 15 or 20 minutes or 1/2
teaspoon of herb root or bark is boiled in 2 cups of wa ter. One to 2
cups of tea per day can be taken for up to 2 weeks. After that, the
herb loses its potency. Tinctures are usually purchased from health
food stores. Because they are quite strong, tinctures are usually
taken a few drops at a time in water. For chronic symptoms, teas are
advised. Short-term problems (flu, toothache, etc.) are best treated
with tinctures. Note: Most tinctures are prepared in an alcohol
medium. People with CFIDS are advised to "flash off" the
alcohol by adding the tincture to hot water.
PROS AND CONS. Herbs are inexpensive,
safe, and readily available. However, it is always best to purchase
them from a health food store. Culinary herbs from the grocery store
are usually treated, seldom organic, and have little medicinal worth.
The advantage of herbs for many people with drug and chemical
sensitivities is that they can produce the desired therapeutic
effects without damage. This is not to say that negative reac tions
are not possible. People with bladder problems (interstitial
cystitis), gastrointestinal symptoms, or migraine headaches may find
that all herbs produce adverse side effects.
In general, patients with CFIDS should
avoid herbs classified as stimu lants (ephedra, lomatium, and
ginseng) because these can overtax the adrenal glands. Ephedra (ma
huang), used to treat bronchial infections, is a powerful stimulant
and can cause high blood pressure, palpitations, and even stroke.
Ginseng and lomatium, although not as strong as ephedra, can produce
similar reactions in the very ill. Echinacea, because it is an
im mune system stimulant, might best be avoided by those who are
severely ill. Some herbs such as goldenseal and St. John's wort must
be used with caution. The antiviral herb, St. John's wort, acts like
a monoamine oxidase inhibitor (MAOI) and must be treated with the
same care as the drug. (The newsletter of the Center for Specialized
Immunology reported a seri ous reaction in a patient who took St.
John's wort concomitantly with an antidepressant.) Chapparal and
comfrey have caused liver problems in some people who took too high a
dose. In addition to the herbs mentioned, there are many others that
can provide temporary, safe relief from numerous CFIDS symptoms.
Those interested in pursuing herbal reme dies should read about herbs before embarking on an herbal therapy pro gram or should consult with an herbalist.
Those interested in pursuing herbal reme dies should read about herbs before embarking on an herbal therapy pro gram or should consult with an herbalist.
ASTRAGALUS
Astragalus (Astragalus membranaceous)
root has been popularized as an immune system modulator. It reputedly
enhances immune system function when it is deficient and
downregulates it when overactive. It is also thought to increase
energy, stamina, and well-being and supports adrenal gland function.
Some use it as a digestive aid. The effects of astragalus are not
dramatic in most people, but some CFIDS patients have noted increased
energy after taking tincture of astragalus.
CHAMOMILE
Chamomile (Matricaria chamomila
[German]; Anthemis nobilis [Ro man]) is a member of the daisy family.
It is currently one of the most pop ular herbs in the United States
and is widely used as an herb tea, in sham poos and soaps, and in
skin-care products. Chamomile has been known as a sedative and
antifever medicine since ancient times and was used by Greek and
Roman physicians to treat a variety of ailments. Contemporary
herbalists recommend chamomile to treat digestive problems and
ulcers, to prevent the spread of infections, and to reduce
inflammation. Because chamomile is an antispasmodic, it has also been
used to lessen the severity of menstrual cramps. Perhaps the most
interesting effect of this herb is its ability to stimulate the
immune system. British researchers discovered that chamomile
increases the number of macrophages and B lymphocytes. Some patients
with CFIDS have chamomile tea before bedtime to help with insomnia
and to alleviate gastrointestinal symptoms. In general, the herb is
well tolerated. Chamomile tea should not be boiled because boiling
makes the tea bitter. Those allergic to ragweed should avoid this
herb.
ECHINACEA
The roots of the purple coneflower
(Echinacea angustifolia, E. purpura) were used by Plains Indians as a
cure for all manner of infections. Although it has been relied on as
a topical wound healer since Colonial times, echinacea's antibiotic
properties have largely been unexplored until recently. Research
conducted in Germany in the 1950s through the 1980s revealed that
echinacea has broad antibiotic properties, much like peni cillin, due
to a substance (echinacein) that counteracts cell-penetrating
en zymes. In this manner, echinacea works to strengthen individual
cell de fenses. Echinacea also acts as an immune system stimulant.
Echinacea boosts the macrophage's ability to destroy germs. It
possesses antifungal as well as antibacterial properties. As an
antiviral agent, echinacea has been used effectively to treat
influenza and the common cold and to check herpesvirus infections.
People with CFIDS often use echinacea at the first sign of a cold or
flu to help lessen the severity of the illness and some even re port
lessening of all symptoms after using this herb. Because of its
im mune stimulating properties, however, echinacea may pose some
prob lems for CFIDS patients with upregulated immune systems.
Echinacea tinctures are more effective than pills or capsules. An
alcohol-free tincture should be used, however, because alcohol
dramatically lessens the potency of this herb. Dry echinacea root can
be purchased in health food stores and boiled to make tea.
GARLIC
The earliest medicinal description of
garlic (Allium sativum) dates from 3000 BC. Garlic was even found in
the tomb of King Tut. It has been used to treat headache, insect
bites, menstrual disorders, intestinal worms, tumors, and heart
disease. Garlic is a powerful antibiotic and antiprotozoan agent. It
kills intestinal parasites, destroys the bacterium that causes
tuberculosis, and can be used against various funguses, including
Candida albicans. Daily ingestion of as little as half a clove of
garlic can lower cho lesterol. Some people with CFIDS tend to be
sensitive to garlic in both its raw and cooked forms. Enteric,
deodorized garlic pills can reduce intesti nal upset. A commonly
recommended brand of deodorized garlic in cap sules, Kyolic, is
widely available from health food stores.
GINGER
Ginger (Zingiber officinale) was used
by the ancient Greeks as a diges tive aid. It is still used as an
antidote for motion sickness, nausea, and nu merous digestive
disturbances. It soothes smooth muscles, making it use ful for
alleviating menstrual cramps as well. Ginger can be taken in capsule
form or boiled to make tea. Ginger root is available from grocery or
health food stores. Ginger powder, however, as found in the spice
section of a grocery store, should not be used as a medication
because it is usually irradi ated. Excessive amounts may cause mild
headache. Some people with CFIDS find ginger difficult to tolerate.
GINGKO
Gingko (Gingko biloba) is a Chinese
herb that has been used tradition ally as an elixir to promote
longevity. Studies have shown that gingko, by increasing blood flow
to the brain, helps reduce the risk of stroke. It also can
dramatically improve memory and reaction time. In Europe, gingko is
used as a conventional drug for treating short-term memory loss,
head ache, tinnitus, vertigo, and depression. Patients with CFIDS
generally use gingko to improve cognitive function. It is taken
either in capsule or tinc ture form. Although gingko is usually well
tolerated, some patients with CFIDS have reported increased fatigue.
Excessive doses can cause irritabil ity, restlessness, nausea, and
diarrhea.
GINSENG
Ginseng (Panax schinseng [Chinese
ginseng]; Eleutherococcus senticoc-cus [Siberian ginseng]) is an
ancient tonic and stimulant. Although it pos sesses enormous
therapeutic potential for common ailments, it is usually not
recommended to patients with severe CFIDS. Ginseng stimulates the
adrenal glands and can increase production of interferon. Because
most patients with CFIDS have excessive interferon production and
endocrine abnormalities, ginseng may increase symptoms.
GOLDENSEAL
Goldenseal (Hydrastis canadensis) is a
North American herb known best for its antibiotic properties.
Berberine, a substance found in goldenseal, kills many of the
bacteria that cause diarrhea, as well as the proto zoa that cause
amoebic dysentery and giardiasis. It has been used against cholera
bacteria and as a treatment for throat, sinus, and topical bacterial
infections. People with CFIDS generally use goldenseal to treat
sinusitis and canker sores. It should be used with caution, however.
Excessive or lengthy (more than 10 days) treatment can lead to
neurologic disturbances and gastrointestinal upset. The safest way to
take goldenseal is externally as a paste spread directly over the
sinuses or other affected area. Goldenseal should not be used during
pregnancy because it stimulates uterine con tractions.
GOTU KOLA
Gotu kola (Centella asiatica;
Hydrocotyle asiatica) (also known as sheep rot, Indian pennywort,
marsh penny, and water pennywort) was originally used in Sri Lanka as
a promoter of longevity. It is a member of the Umbelliferae family,
which also includes carrots, parsley, dill, and fennel. Despite the
similarity in name, gotu kola is not related to the stimulant kola.
In small amounts, gotu kola is taken as a tonic and in larger amounts
as a sedative. Gotu kola traditionally has been used in the treatment
of lep rosy, but it is also noted for its ability to promote blood
circulation. Gotu kola has been used to increase memory and mental
function by increasing circulation to the brain.
LICORICE
Licorice (Glycyrrhiza glabra) has long
been known as one of nature's most potent healing herbs. It is a
popular ingredient in many Chinese herbal remedies and has been used
to treat cough, sore throat, ulcers, arthritis, herpes infections,
and hepatitis. When combined with other herbs, licorice can increase
their effectiveness. In CFIDS, licorice is reputed to alleviate
symptoms associated with adrenal insufficiency (intolerance to heat,
cold, noise, and other stimuli, low blood pressure, faintness)
because the action of licorice's main active chemical, glycyrretinic
acid (GA), resembles that of the adrenal hormone aldosterone.
The glycyrretinic acid in licorice helps the body retain salt (and water) and ultimately may help raise blood volume and pressure. Because low blood pressure is a problem for many patients with CFIDS, licorice could prove beneficial, especially for those who are sensitive to the drugs normally recommended to correct low blood pressure. In addition, licorice raises serum cortisol levels (commonly low in CFIDS) and stimulates natural killer cell ac tivity.
The glycyrretinic acid in licorice helps the body retain salt (and water) and ultimately may help raise blood volume and pressure. Because low blood pressure is a problem for many patients with CFIDS, licorice could prove beneficial, especially for those who are sensitive to the drugs normally recommended to correct low blood pressure. In addition, licorice raises serum cortisol levels (commonly low in CFIDS) and stimulates natural killer cell ac tivity.
Dr. Riccardo Baschetti claims that
dramatic improvement in CFIDS symptoms can be seen after taking
licorice for just 3 days (New Zealand Medical Journal, 1995). He
recommends 2.5 gm of licorice root a day, in extract or capsules
dissolved in milk. The milk enhances the aldosterone-like effects of
the licorice.
Dr. Peter D'Adamo, a naturopath who also uses licorice to treat symptoms of CFIDS, suggests 1/4 teaspoon (2 gm) of solid licorice extract one to three times a day. He recommends his patients take 500 mg of the amino acid methionine and 99 mg of potassium supple ment three times a day along with the licorice to counteract any potassium and sodium imbalances. Patients who have taken licorice report increased energy levels and improvement in symptoms of hypoglycemia; some have noticed that its effectiveness wanes after a few months.
Dr. Peter D'Adamo, a naturopath who also uses licorice to treat symptoms of CFIDS, suggests 1/4 teaspoon (2 gm) of solid licorice extract one to three times a day. He recommends his patients take 500 mg of the amino acid methionine and 99 mg of potassium supple ment three times a day along with the licorice to counteract any potassium and sodium imbalances. Patients who have taken licorice report increased energy levels and improvement in symptoms of hypoglycemia; some have noticed that its effectiveness wanes after a few months.
Naturopaths warn that, because of its
steroid-like qualities, it is impor tant to monitor licorice intake.
Too much licorice, especially without potassium supplementation, can
cause serious side effects. If high blood pressure, headaches,
lethargy, and water retention develop, the dosage should be decreased
immediately. Patients taking drugs that could interact with licorice,
such as heart medications, MAOIs, or diuretics, should con sult with
their physician before embarking on a licorice protocol.
The solid licorice root extract used by
Dr. D'Adamo is manufactured by Scientific Botankals in Seattle
(206-527-5521). It is also available from Willner Chemists in New
York (800-633-1106) for $14 for a 4 oz bottle. Because of its
steroidal effects, licorice supplementation should be super vised by
a physician.
LOMATIUM
Lomatium is a North American herb
reputed to have antiviral proper ties. It has been used to treat
influenza, colds, and diseases such as measles. A number of patients
who have tried lomatia extract have felt overstimulated. Some have
experienced malaise, insomnia, and jitteriness after as lit tle as
one drop. Reports from the late 1980s stated that some CFIDS
pa tients have developed severe allergic reactions while taking this
herb.
MILK THISTLE
The active ingredient in milk thistle
(Silybum marianum), silymarin, appears to have a remarkable effect on
the liver. It stimulates liver cells to regenerate and is effective
in treating jaundice and cirrhosis. Silymarin in creases the content
of liver glutathione, a tripeptide that activates liver en zymes. As
a consequence, milk thistle also helps protect the liver from
tox ins, including poisonous mushrooms, and various petrochemicals.
For CFIDS patients with mild liver dysfunction, milk thistle may
provide some relief. It should be used with caution, however, because
some patients have reported a worsening of symptoms.
UVA URSI
A member of the Ericaceae family, uva
ursi (Arctostaphylos uva ursi) has been used for more than 100 years
as a urinary tract antiseptic. Once in the urinary tract, the arbutin
in uva ursi is transformed into an antiseptic agent, hydroquinone.
This herb also contains diuretic chemicals (ursolic acid) and
astringents. However, uva ursi is effective against urinary tract
infections only if the urine is alkaline; therefore, citrus fruits
(including tomatoes), vitamin C, and acidic foods should be avoided
immediately be fore and after taking it.
VALERIAN
Valerian (Valeriana offidnalis) has
long been used as a tranquilizer and to treat epilepsy, nervousness,
anxiety, insomnia, headache, and intestinal cramps. During World War
I, it was routinely taken to relieve the "over wrought nerves"
brought on by artillery bombardment. Valerian is used extensively in
Germany, where it is the active ingredient in more than 100
over-the-counter sleep aids. The active ingredients in valerian are
chemi cals known as valepotriates, which are found in highest
concentrations in the roots of the plant. Patients with CFIDS take
valerian primarily as a sleep aid. It can be taken as a tea or in
capsule form, but because of its odor, capsules are usually
preferred. Valerian should be taken with a little milk or food to
prevent stomach upset.
FURTHER READING
Castleman, Michael. The Healing Herbs.
Emmaus, Pa.: Rodale Press, 1991 (a well-orga nized introduction to
herbs and their uses)
LEM
DEFINITION. LEM (Lentinus edodes
mycelium) is an extract made from the immature shiitake mushroom.
BACKGROUND. Although shiitake mushrooms
have long been appre ciated in the East for culinary purposes, they
have recently gained atten tion for their medicinal value. Numerous
studies, mostly conducted in Japan, have demonstrated that LEM
increases immune system function by stimulating production of
lymphocytes and macrophages, the immune system's defense against
bacteria, viruses, and tumor cells. LEM may also interfere with the
action of reverse transcriptase (an enzyme that aids in viral
replication) and block cell receptor sites of viruses. Owing to these
properties alone, LEM shows promise in treating cancer, diseases
related to immune system dysfunction, and viral infections.
USES IN CFIDS. Most patients with CFIDS
use LEM as a general treat ment for lethargy, weakness, and
exhaustion, the hallmark symptoms of CFIDS. A number have reported
improvement in stamina, energy, and strength, decreased diarrhea, and
increased white blood cell count after taking LEM.
PROTOCOL. LEM is taken in tablet form,
at a suggested dose of nine tablets a day. As with other medications,
patients with CFIDS should start with smaller doses and gradually
increase to the full dose.
PROS AND CONS. LEM is one of the few
botanical products that af fects CFIDS as a whole. A number of
patients report general improvement and lessening of some of their
worst symptoms.
LEM may provoke a severe allergic
reaction in patients with allergies to mushrooms, molds, and other
funguses (common in systemic Candida in fection). Those with
recurring yeast infections, athlete's foot, or thrush should probably
delay trying LEM until these problems are resolved.
AVAILABILITY AND COST. LEM is imported
from Japan, where the extraction process has been patented, and is
not widely available in the United States. LEM is expensive enough to
rule it out for many people. The CFIDS and Fibromyalgia Health
Resource (800-366-6056) markets a qual ity brand at a cost of $65 for
a bottle of 180 tablets. At the maximum dose, this lasts 3 weeks.
MALIC ACID
DEFINITION. Malic acid, an intermediate
of the Krebs cycle, aids in the production of adenosine triphosphate
(ATP).
BACKGROUND. Malic acid is found
primarily in apples and pears, as well as other fruits. It helps in
the breakdown and utilization of fats and glucose in muscle tissue,
even in low oxygen conditions.
USES IN CFIDS. Because of the prominent
role malic acid plays in the energy-producing Krebs cycle, a
deficiency can lead to inadequate break down of glucose in muscle
tissue, with resulting buildup of lactic acid and other toxins.
Increased amounts of malic acid should relieve many of the symptoms
associated with tissue acidosis (spasms, cramps, and burning pain). A
number of CFIDS physicians recommend malic acid combined with
magnesium to treat fibromyalgia-like symptoms. Dr. Guy Abraham, Dr.
Jorge Flechas, and Dr. I. Jon Russell have found improvement in pain
with supermalic, a combination of malic acid and magnesium (Journal
of Rheumatology, 1995).
PROTOCOL. As with other supplements,
physicians recommend start ing with the lowest dose, one tablet daily
taken with food and water, to check for possible sensitivities. The
dosage can be increased gradually to between 6 and 12 tablets daily,
depending on tolerance. If gastrointestinal problems develop, the
dosage should be decreased. Although results may be experienced
within a few days, most physicians recommend a trial of at least 2
months.
PROS AND CONS. Malic acid as a dietary
supplement is relatively risk free. The only reported side effect
seems to be diarrhea, most likely due to the added magnesium. Several
survey respondents reported almost imme diate positive results from
malic acid. One patient reported complete ces sation of leg spasms,
allowing her to rest better. Others have reported less muscle pain
and more stamina.
AVAILABILITY AND COST. Malic acid is
available without prescription from most health food and vitamin
stores. It can also be purchased through the CFIDS and Fibromyalgia
Health Resource (800-366-6056) (Ultra ATP+, 1500 mg of malic acid
plus magnesium hydroxide) for $16.95 for a bottle of 180 tablets.
MELATONIN
DEFINITION. Melatonin is a hormone
produced by the pineal gland.
BACKGROUND. In the past few years,
melatonin has been touted as the new wonder aid for chronic insomnia,
which affects as many as one third of all people in the United
States. Recent studies released by the Massachusetts Institute of
Technology showed that it took less than half the time for volunteers
given melatonin to fall asleep than those given a placebo. Subjects
given melatonin also tended to sleep about twice as long as those
given placebo and woke without the hangover normally associat ed with
sleeping pills.
Melatonin is a naturally occurring
hormone produced in the pineal gland, the brain's "master
gland." It is derived from serotonin, one of the brain's most
important neurotransmitters. Serotonin, a neurochemical de rived from
the amino acid tryptophan, is converted by enzymes sensi tive to the
diurnal cycle of darkness and light into melatonin. Melatonin,
because it is produced in the part of the brain that regulates
diurnal rhythms, is essential for maintaining normal sleep patterns.
Large amounts of melatonin are produced in children, which is one
reason why they sleep so much. As we age, melatonin levels decrease,
making it more difficult for the elderly to sleep through the night.
Disruption of both melatonin and serotonin production has been
implicated in seasonal af fective disorder, the treatment of which
involves increasing melatonin lev els through exposure to
full-spectrum light. Low melatonin and serotonin levels have also
been implicated as contributing factors to depression. Currently,
physicians are exploring the use of melatonin as an antiaging factor.
It is possible that supplementation with melatonin in the elderly
will help correct the disturbed sleep, poor immune response, and
dimin ished capacity for tissue repair typical of the aging process.
USES IN CFIDS. Sleep disturbance is one
of the primary symptoms of CFIDS. Many patients experience persistent
insomnia throughout the illness. Even after a full night's rest,
patients with CFIDS awaken tired. Many clinicians believe that
treating the CFIDS sleep disorder is of pri mary importance because
it also results in lessening of many other symptoms. However, owing
to the prevalence of drug and chemical sen sitivities in the CFIDS
population, it is not always easy to find a safe, effective means of
obtaining a good night's rest. Melatonin may offer an alternative.
PROTOCOL. While product labels usually
recommend one to two tablets (3 to 6 mg) taken before bedtime,
studies at the Massachusetts Institute of Technology indicate 0.3 mg
daily is sufficient to raise blood levels to normal. MIT researcher,
Dr. Richard Wurtman, claims that seri ous side effects can be
produced by taking standard doses, which can raise blood levels to
more than 10 times the norm. Dr. Charles Lapp finds that dosage is
highly individualized. He recommends starting with as little as 0.1
mg taken a half-hour before bedtime and increasing the dose until the
desired effect is achieved. He also has observed that synthetic (not
from animal sources) and sublingual forms of melatonin are safest and
most ef fective (MEssenger, 1997).
PROS AND CONS. A number of CFIDS
patients have reported that melatonin has given them their best
night's sleep in years. Melatonin works quickly (generally within an
hour). However, it can lose its effective ness over time. After
working beautifully for a few weeks or months, it can suddenly stop
providing the desired results. Some people report paradoxi cal
reactions, such as feeling more awake or experiencing partial or
light sleep states. The reason melatonin works for some but not for
others may have to do with individual biorhythms. Chronobiologist
Benita Middleton and her colleagues at the University of Surrey,
England, have discovered that the effectiveness of melatonin varies
according to daily temperature fluctuations (Discover, 1997). Those
whose temperatures rose later in the day experienced extremely
fragmented sleep. It is possible that patients with CFIDS whose
temperatures rise in the evening may not respond well to melatonin.
Excessive doses of melatonin can cause
jitteriness and headaches. A few female patients may experience
hormonal disturbances (early onset of pe riods). Interactions with
antidepressant drugs such as Prozac, Elavil, or Zoloft and the pain
medication Ultram have been reported. People taking antidepressants
should discuss the risks and benefits of melatonin with their
physicians because it may be contraindicated. Preexisting depression
may be worsened by melatonin.
AVAILABILITY AND COST. Although it is a
hormone, melatonin is currently considered a nutritional supplement.
Consequently, it can be purchased over the counter from most health
food stores and vitamin cat alogs. The CFIDS and Fibromyalgia Health
Resource (800-366-6056) mar kets a bottle of 120 2.5 mg sublingual
tablets for $16. Allergy Research Group (800-782-4274) and KAL
(available through vitamin catalogs and health food stores) also sell
melatonin.
FURTHER READING
Bock, Steven, and Boyette, Michael.
Stay Young the Melatonin Way. New York: Dutton Press, 1995.
MINERALS
CALCIUM
Calcium is the most abundant mineral in
the human body. A 150-pound adult's body contains about 3 pounds of
calcium, 99% of which is found in the skeletal bones. The small
portion of calcium found in soft tis sues and body fluids is
essential for maintaining a number of important biochemical
functions, including regular heartbeat and transmission of nerve
impulses. Calcium also prevents muscle cramps and is vital for the
formation of healthy teeth and strong bones.
CFIDS patients may take calcium at
night to alleviate insomnia. It is also useful for treating muscle
spasms. Calcium supplements can be pur chased from health food
stores, through vitamin catalogs, and at some drugstores. The
recommended daily allowance for calcium is 800 mg/day. People
ingesting high amounts of protein or phosphorus may want to
sup plement their intake of dietary calcium because both protein and
phos phorus increase calcium excretion from the body. Good natural
sources of calcium are milk and other dairy products and green leafy
vegetables.
CFIDS patients taking verapamil (a
calcium channel blocker) to treat cognitive dysfunction need to be
aware that calcium supplements may interfere with the effects of this
medication. People with a history of kidney disease or kidney stones
should not take calcium supplements because the additional calcium
may exacerbate the condition.
CHROMIUM
Chromium is a trace mineral vital for
maintaining blood sugar and for metabolizing glucose, which makes
this mineral particularly valuable in treating both diabetes and
hypoglycemia. CFIDS patients who have taken chromium supplements have
noted decreased sugar craving and lessening of appetite surges. Some
have even felt mildly increased energy levels. Chromium can be
purchased from health food stores, through vitamin catalogs, and most
drugstores. It is inexpensive. A bottle of 100 200 ug tablets
(standard dosage) costs less than $10. Chromium is naturally pre sent
in corn, meat, and whole grains. Brewer's yeast is a rich source of
chromium.
MAGNESIUM
BACKGROUND. Magnesium is one of the six
major minerals classified as essential for human body functioning.
The average human body con tains about 25 gm of magnesium salts,
about half of which is stored in the bones and one fourth in muscle.
Only about 2% circulates freely in the blood. The rest is located
within the cells. Blood levels of magnesium are controlled by the
kidneys.
Magnesium is necessary for relaying
nervous system impulses and for normal metabolism of calcium and
potassium. Much like a vitamin, mag nesium functions as a coenzyme,
aiding in enzyme systems, storage and release of energy generated
from carbohydrates, and synthesis of proteins and DNA. Magnesium
deficiency can result in anorexia, nausea, learn ing disabilities,
personality changes, weakness, exhaustion, and muscle pain.
USES IN CFIDS. In early 1991, a team of
researchers (I.M. Cox, M.J. Campbell, and D. Dowson) published a
preliminary study on magnesium levels in CFIDS patients (Lancet,
1991). All 22 patients studied had re duced levels of serum
magnesium. They followed up their findings with a randomized clinical
study in which 15 of the patients received intramus cular injections
of magnesium sulfate every week for 6 weeks and 17 re ceived a
placebo. Of the 15 patients receiving magnesium, 12 reported
im provement in symptoms. Although this study has received subsequent
criticism (mostly because of study design flaws), magnesium is still
the most frequently recommended mineral supplement for patients with
CFIDS. It is chiefly used to relieve pain and muscle weakness and to
im prove stamina.
PROTOCOL. Magnesium can be administered
orally or by injection. Because oral magnesium is difficult to
absorb, the forms most frequently recommended are magnesium citrate,
magnesium oxide, and magnesium glycinate. Magnesium glycinate causes
the least intestinal upset. The usual recommended dosage is 200 to
400 mg/day taken with food, although CFIDS patients are cautioned to
start with a smaller dose and increase it gradually. A calcium
supplement should be taken along with magnesium to avoid creating a
mineral imbalance. Intramuscular injections of 1 gm of magnesium
sulfate (50%) can be administered once or twice a week. Because of
magnesium's effect on heart function, the first injection should be
performed in a physician's office.
PROS AND CONS. Most people who take
magnesium, whether oral or injected, report increased stamina and
energy. Many include better sleep as an additional benefit (most
likely due to magnesium's muscle-relaxing ef fects). The main
drawback of injected magnesium is that the injections are painful.
The simultaneous administration of vitamin B12or lidocaine helps
relieve the pain of the injection. Because magnesium is a cathartic,
high doses can cause diarrhea. In patients prone to gastrointestinal
upset, a low dose is normally recommended.
AVAILABILITY AND COST. Oral magnesium
is readily available from health food stores, vitamin catalogs, and
many drugstores. It is inexpen sive. A bottle of 250 tablets costs
less than $10. Magnesium sulfate injec tions cost $10 to $12 for a
6-week course.
COLLOIDAL SILVER
DEFINITION. Colloidal silver solution
is composed of ultrafine, non-soluble particles of silver suspended
in a liquid medium such as water.
BACKGROUND. Colloidal silver has long
been used as a germicide. In the early twentieth century, colloidal
silver was used in place of antibiotics. Silver was used orally,
intravenously, and intramuscularly (as an injection), as a throat
gargle, and in eyedrops. Colloidal silver has been used to treat such
varied maladies as tonsillitis, cystitis, ringworm, and dysentery.
Over the course of this century, antibiotics have replaced silver as
drugs of choice, although silver nitrate is still used to prevent eye
infections in new born infants.
USES IN CFIDS. Some patients with CFIDS
report that colloidal silver helps control recurring infections,
particularly in the mouth. Silver may be of benefit in treating
Candida infection, sinusitis, sore throat, and canker sores.
PROTOCOL. Dosage varies, depending on
the concentration of the product used.
PROS AND CONS. It appears that low
doses of silver are fairly safe. However, argyria (grayish skin
discoloration) may develop when excessive doses of silver are
ingested. Because most reports concerning the benefits of silver are
anecdotal, patients are cautioned to exercise judgment before
choosing silver over a medication whose mode of action and
recommend ed dosage are better known.
AVAILABILITY AND COST. Colloidal silver
may be purchased from most health food stores and mail-order
distributors. It costs $12 to $45 for a 2 to 4 oz bottle, depending
on the brand. Several multilevel or network marketing companies also
sell colloidal silver, but discretion is advised when purchasing from
unknown companies. Reputable brands such as Source Naturals
(800-815-2333) and Futurebiotics (available through health food
stores and vitamin catalogs) are preferred.
NOTE: Some of the colloidal minerals
distributed by multilevel mar keters contain arsenic and lead, which
are toxic even in small doses. While many people with CFIDS have
reported improvement in energy and sta mina after taking colloidal
minerals, caution should be exercised. Read la bels carefully!
FURTHER READING
Farber, Paul. The Silver Micro Bullet.
Houston, Tex.: Professional Physicians Publishing and Health
Services, 1977
ZINC
Zinc is a remarkably versatile mineral.
It plays an important role in the more than 70 enzyme systems that
regulate most metabolic processes. It stimulates digestion, aids in
extracting stores of vitamin A from the liver, helps maintain the
mucous lining of the mouth, throat, stomach, and in testines, is
vital for the normal growth of hair, skin, and nails, controls
sex ual maturation and fertility (zinc deficiency in men can lead to
infertility), and aids in the healing of wounds. It also helps
improve immune respons es, although excessive intake of zinc (more
than 50 mg) can suppress immune function. Many CFIDS patients take
zinc lozenges to help relieve sore throat and other viral symptoms.
Zinc is available from health food stores, vitamin catalogs, and some
drugstores. As with other mineral sup plements, it is not expensive.
One hundred 30 mg capsules can cost less than $5 and a bottle of 75
zinc lozenges costs about $8. The recommended daily allowance for
zinc is 15 mg. As excessive amounts of zinc can cause severe
gastrointestinal problems, zinc should be taken with food to avoid
stomach upset. Zinc is found naturally in pumpkin seeds, liver, egg
yolks, and seafood (especially oysters).
NADH
DEFINITION. NADH, the reduced form of
nicotinamide adenine dinucleotide (NAD), is a coenzyme found in all
living cells. It is also called coenzyme 1.
BACKGROUND. NADH was first discovered
in the 1930s by an American scientist who observed that NADH played
an essential role in the energy production of cells. Not until more
than 60 years had passed, however, did Dr. Georg Birkmayer, a
biomedical researcher from Vienna, Austria, develop a stable oral
form of NADH. Since then, a growing body of research documents that
NADH not only acts as a driving force in the production of cellular
energy but also acts as a potent antioxidant, is a key component of
DNA repair and cellular regeneration, and stimulates the production
of the neurotransmitters dopamine, noradrenaline, and serotonin.
Ongoing research in the United States and abroad may help define the
role of NADH in treating such degenerative neurologic conditions as
Alzheimer's disease and Parkinson's disease.
USES IN CFIDS. NADH may be of great
benefit in treating CFIDS. When NAD is oxidized (NAD+) in the cell's
mitochondria, energy is re leased. This energy is preserved in the
form of adenosine triphosphate (ATP), a substance required by all
energy-absorbing processes in the body.
Researchers have proposed that NADH may
help correct the metabolic defect in CFIDS that inhibits the
production of ATP. Because low ATP pro duction means less energy,
clinicians believe NADH may alleviate CFIDS-related exhaustion and
may also improve cognitive function. The three neurotransmitters
stimulated by NADH serve critical functions in the cen tral nervous
system: dopamine is important for short-term memory; no radrenaline
contributes to alertness; and serotonin has a pronounced ef fect on
mood and regulates sleep.
In March 1996, the Food and Drug
Administration (PDA) approved clinical trials of NADH in CFIDS
patients at the Georgetown Medical Center. Studies began in mid-1996
under the direction of Dr. Harry Preuss, Department of Nephrology,
and Dr. Joseph Bellanti, Director of Georgetown's International
Immunology Center. The studies are now closed and the CFIDS community
awaits word of the results.
PROTOCOL. The suggested dosage of NADH
is 2.5 to 10 mg/day, al though some people report taking as much as
15 mg. It should be taken first thing in the morning on an empty
stomach (about 20 minutes before your first meal).
PROS AND CONS. NADH works rapidly.
Benefits may be noticed within days to weeks. One patient reported
that it was moderately to mild ly helpful, "making bad days
somewhat less bad and good days somewhat better" (CFIDS
Chronicle, Summer 1996). Another CFIDS patient who has had an
excellent response to NADH reported increased energy, stamina,
concentration, and overall improvement in symptoms.
AVAILABILITY AND COST. NADH is
classified as a supplement and therefore does not require a
prescription. However, it is not yet widely available in health food
stores. There are only a handful of manufacturers. The brand most
widely recommended is Enada (Menuco Corp.; 800-636-8261), which costs
$50 to $120 a month, depending on the dosage. The CFIDS and
Fibromyalgia Health Resource (800-366-6056) also markets NADH for
$23.
PROBIOPLEX
DEFINITION. Probioplex is a
whey-derived product that concentrates the active globulin (immune)
proteins in cow milk.
BACKGROUND. Probioplex is a source of
secretory IgA, the immunoglobulin found in external secretions.
Secretory IgA is produced in the mucous lining of the intestines and
is essential both for maintaining the gut barrier and for "tagging"
unfriendly organisms in the gastrointesti nal tract. It is used in
the treatment of leaky gut, ulcers, and damage to gut mucosa.
Secondary benefits include increased immune system efficiency,
reduction of yeast overgrowth, and control of enteric viral and
bacterial infections.
USES IN CFIDS. Probioplex is
recommended for treating digestive tract problems, particularly leaky
gut, irritable bowel syndrome, gas, and food sensitivities. It may
serve as a substitute for L -glutamine for those who cannot tolerate
amino acids as it performs a similar function. Probioplex also
stimulates the growth of helpful bacteria in the intestines, making
it a useful corollary treatment for Candida overgrowth (systemic
yeast infection), common in CFIDS. The secondary benefits of
improving immune system function are also highly relevant for
patients with CFIDS.
PROTOCOL. Probioplex is a powder that
can be mixed with water or juice. Nutritionists recommend 1/2
teaspoon two to three times a day for 3 to 4 weeks. After that, the
dosage should be reduced to 1/4 teaspoon once or twice a day and
discontinued when benefits are no longer noticeable. Reported
benefits include reduced abdominal pain due to gas, reduced bloating,
relief of constipation, reduced food reactivity, and improved sleep.
PROS AND CONS. Probioplex is safe, easy
to use, relatively inexpen sive, and is available without
prescription. It resists digestion in the stom ach and small
intestine and so may be taken with meals. However, because it is a
whey product, persons with milk allergies or sensitivities may not be
able to tolerate it. Probioplex also contains rice maltodextrin,
which may limit its value for those with rice allergies as well.
AVAILABILITY AND COST. Probioplex is
available from nutritionists and specialized vitamin stores. A 75 gm
bottle (a 2-month supply) costs about $20.
PROBIOTICS
DEFINITION. Probiotic bacteria,
primarily Lactobacillus acidophilus and Bifidobacterium bifidus, aid
in many digestive processes and help maintain balance in the
intestines.
BACKGROUND. Digestive tract bacteria
(intestinal flora) have evolved within humans to aid in completing
the breakdown and absorption of many foods. Without the thousands of
"friendly" bacteria that inhabit the intestines,
malnutrition would develop no matter how much food was eat en. These
bacteria not only help in digestion, they are responsible for
man ufacturing many nutrients that are essential to survival, such as
the B vita min complex. Some bacteria, such as bifidus, live in the
small intestine; others, such as acidophilus, live in the large
intestine. As long as the intesti nal flora are working well, a
minimum of digestive problems can be ex pected. However, once the
function of friendly flora is upset, harmful bac teria can move in
and cause bloating, stomach upset, poor digestion, con stipation,
gas, and malabsorption problems. The most common sources of flora
upset are recurrent use of antibiotics, oral contraceptives, aspirin,
corticosteroids, poor diet, stress, and Candida infections. In these
cases, it may be necessary to use a probiotic supplement to
reestablish a healthy balance of intestinal flora.
USES IN CFIDS. Patients with
gastrointestinal symptoms or recur ring yeast infections, or who
regularly take antibiotics, nonsteroidal anti-inflammatory drugs
(NSAIDs), oral contraceptives, or cortisone are ad vised to use a
probiotic supplement. Products that contain bifidus seem to help with
leaky gut. Most patients with CFIDS who regularly take probiotics
report easing of gastrointestinal symptoms (especially gas and
bloating) and overall improvement in digestion.
PROTOCOL. Probiotics are sold in
different forms. Each should be tak en according to directions.
Enteric-coated tablets, for example, need to be taken only once a day
and can be taken with food because the enteric coat ing protects the
bacteria from being destroyed by stomach acids. Powdered forms and
capsules generally need to be taken an hour before meals or on an
empty stomach. Patients with altered intestinal flora as a result of
tak ing antibiotics need to take a probiotic supplement for a least 2
weeks after finishing the treatment to repopulate the intestines.
Single-strain varieties are reported to be more effective than
multiple strains.
PROS AND CONS. One of the main
advantages of probiotics is that they can be taken daily for months,
or even years, without causing any ad verse effects or loss of
benefits. They rarely cause side effects.
AVAILABILITY AND COST. Many good brands
of probiotic supple ments can be purchased from health food stores
and vitamin catalogs. Probiotics should be kept in a refrigerator
because the bacteria may be de natured by heat. Acidophilus can also
be found in foods such as yogurt and kefir, although these are used
more effectively to maintain intestinal bal ance once it has been
established. Foods such as miso and tofu can en hance bifidus growth,
as can a number of supplements that provide in testinal substrate in
which the bacteria can flourish, such as Probioplex,
fructo-oligosaccharides (FOS), biotin, and lipoic acid. Probiotic
supple ments are not expensive. A month's supply costs about $14.
PYCNOGENOL
DEFINITION. Pycnogenol
(proanthocyanadin) is an antioxidant de rived from pine tree bark or
grape seed.
BACKGROUND. Pycnogenol is a potent free
radical scavenger derived from botanical sources. Studies have shown
that, as an antioxidant, pycnogenol is up to 50 times more effective
than other antioxidants to clear free radicals created from chemical
sources (air pollution and food addi tives). It is 20 times more
effective than vitamin C to scavenge superoxide, hydroxyl, and
peroxide radicals. Pycnogenol is reported to enhance im mune system
function, increase energy, promote healing, and reduce aller gic
reactions. It is particularly effective in the brain.
USES IN CFIDS. Pycnogenol is frequently
recommended by CFIDS clinicians because it is generally better
tolerated than other commonly used antioxidants, such as vitamin C,
and may be more effective. Patients who have used pycnogenol report
small increases in mental and physical energy and better resistance
to bacterial and viral infections and stress.
PROTOCOL. The recommended dosage is one
to two tablets a day (25 mg), taken with meals with a glass of water.
AVAILABILITY AND COST. A bottle of 60
tablets costs $17 to $20 and can be purchased from health food stores
and vitamin catalogs. Bronson (800-235-3200) markets both pine and
grape extract pycnogenol for un der $20.
ROYAL JELLY
DEFINITION. Royal jelly is a thick,
milky substance secreted by young nurse honeybees to nourish the
young larvae in a colony, especially the queen larvae.
BACKGROUND. Royal jelly is one of
nature's most potent foods. It is rich in B vitamins (especially
pantothenic acid), biotin, folk acid, and inositol. It also contains
vitamins A, C, D, and E, seven minerals, 18 amino acids, fatty acids,
enzymes, and hormones and is the only natural source of
acetylcholine, the neurotransmitter that aids in memory.
Health-enhanc ing properties attributed to royal jelly range from
reducing cholesterol lev els to healing skin disorders.
USES IN CFIDS. Royal jelly has been
highly touted for use in CFIDS despite the fact that its mode of
action is not well understood. Royal jelly is a natural source of
acetylcholine, the neurotransmitter some researchers believe is
deficient in CFIDS, which may be why it is effective in some
pa tients with CFIDS. It also provides an easily tolerated form of B
vitamins. Many patients with CFIDS who need B vitamins cannot
tolerate yeast-based vitamin B products.
Steve Wilkinson, author of Chronic
Fatigue Syndrome: A Natural Heal ing Guide, claims that royal jelly
can help provide increased stamina and energy, greater mental
alertness, and relief from muscle problems. He states that in his
case the improvement in muscle pain was "dramatic" after
just a few weeks of taking royal jelly. A number of patients with
CFIDS have reported that royal jelly seems to increase their energy
and stamina. Some women have even reported normalizing of menstrual
cycles.
PROTOCOL. One manufacturer (Y & S
Royal Jelly Farm; 800-654-4593) recommends taking 1/4 teaspoon of
royal jelly daily on an empty stomach. When combined with honey (for
preservation), up to 2 tea spoons a day can be eaten. Royal jelly can
be taken for months. Some pa tients need 2 to 3 months before its
benefits can be felt. Pure royal jelly (not mixed with honey)
requires refrigeration because it spoils easily.
PROS AND CONS. Royal jelly is a safe,
inexpensive supplement that may provide some necessary nutrients.
Side effects from pure royal jelly have not been reported. However,
patients with CFIDS should be sure the royal jelly they use has not
been mixed with other products (ginseng, bee pollen) to avoid
possible allergic reactions to these additives.
AVAILABILITY AND COST. Royal jelly is
available in pure form as a thick liquid, in capsules, or mixed with
honey. A 4 oz jar of pure royal jelly costs about $75 and lasts 6
months at the recommended dosage (or about $12 a month). Less
expensive royal jelly capsules are available from most health food
stores. Montana Big Sky capsules retail at $10 a bottle. Because
royal jelly loses its potency when improperly handled or processed,
it may be worthwhile to buy the purest form available. The
refrigerated section of health food stores usually contains the most
potent royal jelly products.
SAMBUCOL
DEFINITION. Sambucol is an extract made
from the fruit of the European black elder tree (Sambucus nigra L), a
member of the Caprifoliaceae family.
BACKGROUND. Black elderberry has long
been used in Europe to make jams, jellies, soft drinks, and aromatic
wines. In addition to its pleas ant taste, elderberry is valued as a
rich source of B vitamins, bioflavonoids, and minerals such as
calcium and phosphorus. Medicinal use of black el derberry has been
documented as early as the fifth century BC, when the ancient Greeks
described it as a remedy for colds, flu, and upper respirato ry tract
infections. In the mid- 1980s, researchers found that two of the
ac tive ingredients in elderberry inhibited the replication of the
influenza virus by preventing the virus from entering cells.
In a continuation of this research, in
1992 a group of Israeli scientists and physicians formulated a black
elderberry syrup that acted successfully against the influenza virus
in a laboratory setting. Soon afterward, a dou ble-blind,
placebo-controlled study was conducted in patients with in fluenza in
southern Israel. The results of that study indicated that black
el derberry effectively reduced the duration and severity of
influenza infec tions. Flu symptoms (fever, cough, and muscle pain)
significantly im proved in 20% of the patients within 24 hours,
compared with 8% of the control group. Within 3 days, more than 90%
of the patients were symp tom free, compared with 6 or more days for
the control group. Preliminary results of further studies have also
shown that elderberry extract can act against herpesvirus and
Epstein-Barr virus.
USES IN CFIDS. The fact that Sambucol
has such a wide range of an tiviral effects may make it particularly
useful for the many patients with CFIDS who have frequent colds and
flu. It may also be valuable for those who demonstrate reactivation
of Epstein-Barr virus and other latent viruses, the effects of which
can lead to many of the symptoms typical of CFIDS. CFIDS patients
taking Sambucol noted overall improvement (Mass CFIDS Update, Fall
1995).
PROTOCOL. The recommended dosage of
Sambucol syrup is 4 tablespoons daily in adults and 1 tablespoon
daily in children younger than 12 years. Patients with CFIDS should
probably start with a smaller dose to check for tolerance. Sambucol
should be taken on a full stomach. Dairy products should be avoided
for 30 minutes before and after to avoid stom ach upset. The
manufacturers recommend refrigeration after opening.
PROS AND CONS. Sambucol is an
all-natural product, which is an ad vantage for patients with
chemical and drug sensitivities. There are no re ported side effects
or contraindications associated with its use. Although reports from
CFIDS patients have been scant, those who have tried it claim that it
hastens recovery from flu and colds. Sambucol is also safe in
chil dren, which is good news for parents of children with CFIDS
because so few effective pediatric medications are currently
available. One reported that Sambucol helped alleviate sore throat in
her child with CFIDS, usu ally within a day, with no side effects.
AVAILABILITY AND COST. Sambucol is
currently marketed in the United States, France, Israel, and South
Africa through health food stores and drugstores. The liquid extract
contains glucose and honey for sweet ening and raspberry extract to
enhance flavor. If a glucose-free product is desired, Sambucol is
available in lozenge form and as a liquid sweetened with sorbitol. A
4 oz bottle of liquid Sambucol or a bottle of 16 lozenges costs about
$13.
VITAMINS
DEFINITION. Vitamins are organic
(carbon containing) substances needed in tiny amounts to promote
biochemical reactions within living cells.
BACKGROUND. Vitamins, as independent
biochemical agents, were discovered around the turn of the century
when an English biochemist proposed that diseases such as rickets and
scurvy were most likely caused by a lack of "accessory food
factors" in the diet. After observing that these diseases could
be corrected by adding certain foods (whole rice, which is high in
vitamin B, to cure rickets; and oranges, an easy source of vitamin C,
to cure scurvy), scientists began to search for chemical compounds in
these foods that could produce such extensive changes in the body.
When these accessory food factors were finally isolated in food, the
name "vita-mine" was proposed (from the Latin vita,
necessary for life, and amine, a chemical substance containing
nitrogen). Later, when it was discovered that not all vitamins were
amines, the final "e" was dropped.
There are 13 known vitamins, all of
which act as catalysts, or more specifically, coenzymes; that is,
they initiate or speed chemical reactions in cells while remaining
unchanged. They accomplish their task mainly by combining with a
protein-containing apoenzyme (vitamins contain no protein) to form a
complete enzyme. The completed enzyme performs the role of
biochemical catalyst, enabling most of the body's vital cell
func tions to occur in an orderly and efficient manner. Without
vitamins, many essential cell functions would cease, resulting in any
number of vitamin deficiency-related diseases and problems. Most
vitamins must be obtained from food because the body rarely
manufactures them in adequate amounts (vitamin K is the exception).
USES IN CFIDS. Most CFIDS physicians
and clinicians include vitamin supplementation as a part of a general
treatment protocol. The reasons vi tamin supplementation is
considered such a central part of CFIDS treat ment are threefold.
First, the ill body consumes vitamins
much faster than the healthy body. Patients, particularly those with
long-term illnesses, need vitamins in amounts that exceed those which
can be derived from food, es pecially when (as in CFIDS) the illness
causes certain metabolic defects.
Second, at least 50% of patients with
CFIDS have absorption problems (leaky gut, low stomach acid
production, or other gastrointestinal difficul ties). When food is
improperly digested, vitamins are not extracted effi ciently,
sometimes not at all, necessitating some kind of supplementation.
Third, as has been pointed out by a
number of researchers, the particular nature of CFIDS immune system
activation prevents some vitamins from working properly. The excess
cytokine production that blocks vitamin C function, for example, is
justification enough for supplementation. The most frequently
recommended supplements, however, are not specific vit amins (except,
perhaps, vitamin C) but general wide-spectrum supple ments. CFIDS
clinicians usually recommend a quality, well-tolerated sup plement
such as Optivite, All 1, Solgar, Schiff, or Reliv, which can be
easily obtained from health food stores and vitamin catalogs (Reliv
is available through local distributors only; call 800-358-9283).
Benefits of vitamin supplementation generally are not apparent for
several weeks, but some seriously malnourished patients notice
significant effects within a few hours. Many CFIDS patients report
overall improvement in vitality, ener gy level, and stamina with
vitamin supplementation. Few report any ad verse effects (and these
are usually remedied by switching brands).
In addition to a wide-spectrum vitamin
supplement, many CFIDS physicians and clinicians recommend taking
extra amounts of specific vit amins for the purposes of providing
added antioxidant protection, for im mune system enhancement, or to
compensate for the functional deficits common to the illness.
Vitamins are easily obtained from supermarkets, health food stores,
pharmacies, or mail-order catalogs. They are inexpen sive, ranging
from $3 to $15 per bottle. Care should be taken to purchase
high-grade vitamins because the excessive heat and poor handling to
which low-grade vitamin products are exposed often cause fat-soluble
vitamins to become rancid and considerably reduce the efficacy of
water-soluble vitamins. With the exception of vitamin E, synthetic
vitamin prep arations are as effective as natural vitamins.
VITAMIN A
Vitamin A (retinol) plays a variety of
roles in human metabolism. It helps maintain the health of the skin
and all mucous linings of the body (stomach, intestines, bladder,
mouth, nose, throat, windpipe, and other air passages). It is
essential for vision. Vitamin A also increases resistance to
infections and is involved in the maintenance of the adrenal cortex,
where cortisol is formed.
USES IN CFIDS. Vitamin A is primarily
used to help maintain mucous membranes, which are often compromised
in CFIDS. Patients prone to in testinal, respiratory, or ear
infections also take vitamin A to maintain resistance. There have
been attempts in the past to redefine vitamin A as an "anti-infective
agent." However, because its protective capacity is limited to
bacterial infections of the mucous membranes, these have been
abandoned. The recommended daily allowance for vitamin A is 5000 IU a
day. Because vitamin A is fat soluble, it can be stored in the liver,
which means it can be taken less frequently in larger doses. A
physician or nutritionist should be consulted before taking larger
doses, however, to prevent possi ble negative reactions.
Vitamin A is available from health food
stores, many pharmacies, and some supermarkets. The form of vitamin A
most easily absorbed is micellized A, a liquid suspension sold in
health food stores. Vitamin A intake (unlike water-soluble vitamins)
must be monitored to prevent overdose. Loss of appetite,
irritability, widespread itching, headaches, and mouth ul cers are
all signs of vitamin A toxicity. The best natural sources of vitamin
A are animal products (liver, whole milk, butter, and cheese). Fish
liver contains huge amounts of vitamin A (200,000 to 1 million IU,
depending on the type). Pregnant women should not take more than 5000
IU of vita min A because higher doses have been associated with birth
defects.
BETA CAROTENE
Beta carotene is the precursor to
vitamin A. When foods containing beta carotene (yellow or orange
vegetables) are ingested, the liver converts the beta carotene to
vitamin A. Unlike vitamin A, however, it cannot be stored in the body
and therefore entails far fewer risks of toxicity, although its
function remains largely the same. Like vitamin A, beta carotene
strengthens mucous membranes. It also helps protect against skin and
lung cancer and improves the functioning of the thymus gland (where T
cells are produced). There is no recommended daily allowance for beta
carotene, but people who take large amounts often notice that certain
ar eas of their skin, particularly the palms and around the
fingernails, turn yellowish orange. This condition is called
carotenemia and, while benign, is a sign that too much beta carotene
is being consumed. Patients with di abetes or hypothyroid conditions
should avoid taking beta carotene be cause they cannot convert it to
vitamin A.
USES IN CFIDS. Beta carotene is one of
the vitamins mentioned by clinicians as having particular value in
CFIDS. Dr. Burke Cunha proposes that one of the chief benefits of
beta carotene for CFIDS patients lies in its ability to stimulate the
production of natural killer cells (CFIDS Chronicle, Fall 1993). He
found that among the majority of his patients who tested low in
natural killer cells (below 6%; the normal range is 6% to 22%), high
doses of beta carotene resulted in an increase in the number of these
cells. He also found less fatigue in these patients. (Patients with
normal num bers of natural killer cells before therapy showed less
improvement, however.) Dr. Cunha postulates that by increasing
natural killer cell produc tion, beta carotene may serve as an
effective antiviral agent. He recom mends a high dose (25,000 to
50,000 lU/day, depending on the patient's needs), but cautions that
high doses of beta carotene should not be taken for more than 3 weeks
to prevent carotenemia and vitamin A toxicity. Most clinicians
recommend a daily dose of 5000 to 10,000 IU in combina tion with
other antioxidants to prevent carotenemia.
VITAMIN B12
Vitamin B12 (cobalamin) is a member of
the B vitamin complex. It is naturally found in animal products and
is required for proper digestion, food absorption, protein synthesis,
metabolism of carbohydrates and fats, myelin synthesis, nerve
function, and activation of folic acid (used in the formation of red
blood cells). Its name is derived from cobalt, the mineral to which
this vitamin is bound. When cobalamin is ingested, contact with
stomach enzymes splits it apart, freeing it to join with a special
protein called "intrinsic factor," which is secreted by the
stomach lining. Only when vitamin B12 combines with intrinsic factor
can it be absorbed by the body. Because vitamin B12 is highly
unstable outside the body, two stable forms have been
developed—hydroxocobalamin and cyanocobalamin. Oral vitamin B]2
cannot be absorbed in malabsorptive states such as perni cious
anemia.
USES IN CFIDS. Although the traditional
use for vitamin B12 injections has been limited to the treatment of
anemia, Dr. Charles Lapp and Dr. Paul Cheney have observed that such
injections are highly beneficial to their CFIDS patients, even in the
absence of vitamin BJ2 deficiency or any sign of anemia. They report
that some 50% to 80% of their patients demon strate improved stamina
and energy with vitamin B,2 therapy (CFIDS Chronicle, Fall 1993). Dr.
Cheney was first motivated to include vitamin B12 in his general
treatment plan after seeing evidence that vitamin B]2 in jections had
been helpful in a number of nonanemic neuropsychiatric pa tients.
These patients had demonstrated some of the symptoms common to CFIDS
(paresthesia, sensory loss, loss of coordination, and mood swings),
all of which improved with vitamin BI2 injections. Dr. Cheney
theorized that vitamin B12 injections work so well among CFIDS
patients because the elevated rate of cytokine production in CFIDS
may be effec tively blocking vitamin B12 function in the body. In
this case, massive amounts of vitamin B12 would be needed to overcome
the functional defi ciency brought about by excess cytokine
production. Vitamin BJ2 may also help correct the red blood cell
membrane defects common in CFIDS, as observed by New Zealand
researcher Dr. L.O. Simpson (CFIDS Chronicle, Fall 1995).
Most patients who try vitamin B12
injections report favorable results. Common benefits are increased
energy, mental clarity, and stamina, usual ly lasting for several
days after a single administration. Because benefits may not be felt
for the first 3 weeks, a month's trial is generally recom mended.
Although vitamin B12 is fairly innocuous, some patients report side
effects. One noted a feeling of extreme lassitude followed by a
period of hyperactivity (resulting in sleeplessness). Some also
report local rashes, which diminish when dosage is reduced, and
various allergic reactions (in cluding diarrhea) to the preservatives
used in the solution. To avoid poten tial allergic reactions, a patch
test should be performed first. Adminis tration of the first
injection in a physician's office is also recommended in highly
allergic persons.
The dosage Dr. Cheney recommends is
2000 to 5000 ug/ml (in a 0.5 to 1.0 cc syringe) administered
subcutaneously or intramuscularly every 2 or 3 days. Other physicians
generally recommend 1000 to 2000 ug (1 to 2 cc syringe) one to three
times a week. High doses of vitamin B12 must be accompanied by a
multivitamin that includes the entire vitamin B com plex to avoid B
vitamin imbalances. This dosage can be tolerated over long periods,
although benefits can wane. In that case, a short period (1 to 2
weeks) without vitamin B12 injections is usually enough to
reestablish its efficacy. Most physicians prefer cyanocobalamin to
hydroxocobalamin (vi tamin B12a) because it is the most stable form
of vitamin B12. However, some patients who cannot tolerate
cyanocobalamin prefer the more ex pensive, and longer acting,
hydroxocobalamin.
Some advantages of vitamin B12 are that
it is relatively inexpensive (about $6 a vial), safe, and can be
self-administered, and the effects are generally felt quickly (within
12 hours). Injectable vitamin B12 is available by prescription. If
local pharmacies do not compound high-dose vitamin B12, it can be
ordered from Giant Genie Pharmacy (704-525-3956) or Pharmacy on the
Park (800-654-3115). Vitamin B12 injections are often covered by
insurance.
VITAMIN B COMPLEX
Many patients with CFIDS benefit from
taking a vitamin B complex formulation, either in accompaniment with
single B vitamins (to prevent imbalances) or alone. CFIDS patients
have reported improvement in ener gy levels, symptoms of premenstrual
syndrome (PMS), mood, and sleep disorders after taking vitamin B
complex. Most vitamin B complex formu lations include vitamins B1
(thiamine), B2 (riboflavin), B6 (pyridoxine, pyridoxal, and
pyridoxamine), B12 (cobalamin), niacinamide, pantothenic acid,
choline, inositol, vitamin C, and folic acid. People with allergies,
sys temic Candida infection, or digestive symptoms should avoid
yeast-based formulations, which may be poorly tolerated. Nature's
Life brand (avail able in health food stores) seems to be fairly well
tolerated by people with CFIDS and the CFIDS and Fibromyalgia Health
Resource (800-366-6056) also markets a non-yeast-based vitamin B
complex.
VITAMIN C
Vitamin C (ascorbic acid) is a
water-soluble antioxidant found in most raw fruits and vegetables. It
serves a number of vital functions in the body, including connective
tissue repair (especially collagen), maintaining heal thy teeth and
bones, promoting the synthesis of anti-inflammatory hor mones in the
adrenal glands, helping to produce the neurotransmitters serotonin
and norepinephrine, healing wounds, maintaining capillaries, healthy
adrenal glands, and ovaries, absorbing iron into the blood stream,
promoting efficient white blood cells, and maintaining cholesterol
bal ance. It is widely touted as a preventive for the common cold,
perhaps be cause vitamin C increases the production of interferon, an
antiviral cytokine. Animal experiments have shown that vitamin C has
other immune system-enhancing effects as well, increasing the body's
ability to fight off bacterial infections and promoting general
immunity. Patients with aller gies may want to take special note of
vitamin C's function as a natural antihistamine. A research team led
by the co-discoverer of vitamin C, Pro fessor Charles Glen King of
Columbia University, demonstrated as early as 1940 that it can both
prevent and moderate allergy symptoms. In addition to its other
wonderful properties, vitamin C is also a natural chelator, help ing
to remove heavy metals and toxins from the body.
Vitamin C is not stored in the body, as
are fat-soluble vitamins, and thus must be constantly replenished.
Smoking, drinking (alcohol), illness, and physical or emotional
stress all cause rapid depletion of vitamin C.
USES IN CFIDS. Vitamin C is the most
widely used of all vitamins, not just because of its role as an
antioxidant and free radical scavenger but also because of the
numerous other vital functions it performs. Of particular relevance
to patients with CFIDS is the role of vitamin C in maintaining
healthy capillaries. A number of researchers have remarked on the
poor circulation in patients with CFIDS, resulting in corollary
illness such as Reynaud's phenomenon. Even more critical is the
reduced blood flow to the brain, which is especially dependent on
capillary action for its blood supply. This function alone helps to
place vitamin C at the forefront of any vitamin therapy. However, its
role in collagen formation and tissue repair, its importance in
immune system function, and its place as an adrenal gland support do
much to explain why it is one of the most frequently rec ommended
CFIDS nutritional treatments.
Most nutritionists recommend taking
vitamin C to tolerance; that is, until the patient begins
experiencing diarrhea or burning urine. Consid ering the broad
spectrum of sensitivities among CFIDS patients, tolerance can vary
considerably. CFIDS clinicians generally recommend up to 2000 mg/day,
taken in divided doses initially. Because vitamin C is rapidly
ex creted in urine, this dosage may be broken up into smaller, more
frequent doses without any loss of efficacy. The most frequently
recommended form of vitamin C is ester C, which enters the blood
stream four times faster than regular forms of the vitamin and is
retained longer in tissues. It is buffered to prevent irritation to
the stomach and bladder. Nonetheless, some people with sensitive
stomachs have reported problems with ester C. For those with many
gastrointestinal symptoms, acid-free C powder may be more tolerable
(Allergy Research Group, 800-782-4274; and Bronson, 800-235-3200).
Nonacidic C powder has the advantage of being gentle on the stomach
and can be measured out in minute doses. Oral nonacid vita min C in
small doses is extremely safe, with virtually no side effects.
Nevertheless, it should be noted that some patients do not tolerate
vitamin C in any form or quantity. Vitamin C is one of the least
expensive vitamins and is widely available at most pharmacies, health
food stores, and many supermarkets.
Intravenous drip is another form of
vitamin C therapy used in CFIDS. Administering vitamin C directly
into the blood stream not only increases the rate at which it is
absorbed but enhances its role as a chelating agent. A number of
alternative health care practitioners in the United States and Mexico
use vitamin C drip to the exclusion of most other forms of CFIDS
therapy, claiming it can cause complete remission. Many patients have
be lieved that they made temporary, although much appreciated,
improve ment with vitamin C therapy, but rarely has anyone claimed
long-lasting effects. A few patients have reported worsening of some
symptoms, pri marily gastrointestinal and bladder problems, as a
result of vitamin drip therapy. Intravenous drip therapy should not
be administered daily and requires monitoring by a physician. The
charge for an intravenous drip is $70 to $125, depending on locale.
Insurance usually does not cover the cost.
VITAMIN E
Vitamin E (tocopherol) is an
antioxidant, fat-soluble vitamin found in butterfat, meats, vegetable
oils, and particularly wheat germ oil, from which this vitamin was
first isolated in 1936. Like other antioxidants, vita min E serves to
protect cell linings from damage caused by oxidation. It helps to
maintain red blood cell membranes and other cell tissues (even the
walls of the tiny structures within cells), ensures normal muscle
me tabolism, and protects essential unsaturated fatty acids and
vitamin A from destruction from oxidation. Vitamin E has protective
activity against methyl mercury toxicity and increases the activity
of glutathione. Zinc is needed to maintain proper levels of vitamin E
in the blood; thus, zinc de ficiency can lead to low vitamin E
levels.
USES IN CFIDS. Vitamin E is recommended
chiefly for its properties as an antioxidant. It does not appear to
have any specific immune-modulat ing or antiviral capacity. However,
its ability to strengthen cell walls and protect other vitamins from
destruction makes it desirable as an adjunct to other vitamin
therapies. Because it is fat-soluble, only minimal amounts are needed
to produce antioxidant benefits. The standard dosage, 400 IU of
natural vitamin E, taken daily with the largest meal is usually
recom mended for patients with CFIDS. If nausea, diarrhea, or
worsening of fa tigue or weakness ensue, the dosage should be
reduced.
6
Alternative and
Complementary Medical and
Supportive Therapies
Acupressure
Acupuncture
Aroma Therapy
Bach Remedies
Bed Rest
Biofeedback
Chelation Therapy
Chiropractic
Exercise
Homeopathy
Hydrotherapy
Hypnosis
Live Cell Therapy
Massage
Meditation
TENS
Visualization and Imagery
ACUPRESSURE
DEFINITION. Acupressure (or G-Jo), a
Chinese technique for the im mediate treatment of minor ailments, is
based on the same principles as acupuncture (see Acupuncture).
BACKGROUND. Acupressure was developed
to provide a fast remedy for various symptoms and ailments. Much like
acupuncture, it relies on stimulation of certain points on the
surface of the body to release chi, or life energy. The fingertips
are used to apply acupressure. Usually, light pressure for only a few
seconds is exerted with the tip of the thumb. Most points are located
by placing the fingers along easily identifiable body landmarks.
Distance between points is measured in fingerwidths. The technique is
easy to learn and requires relatively little exertion.
USES IN CFIDS. Acupressure can be used
for short-term relief of mild to moderate CFIDS symptoms, such as
minor aches and pains, insomnia, anxiety, shortness of breath,
nausea, headache, eyestrain, and tension.
Inner Wrist Point: For nausea,
insomnia, indigestion, and nervousness
Place your three middle fingers
crosswise along the inside of your wrist. The third finger should
align with the first crease that separates your hand from your wrist.
The inner wrist point is located directly under the index finger, in
the middle of your arm.
Inner Shoulder Point: For shortness of
breath, chest tension, coughing, and congestion
This point is located on the outer part
of the chest near the shoulder, four fin gerwidths above the armpit
and one fingerwidth toward the chest.
Lower Back Point: For general muscle
tension, anxiety, leg spasms, and insomnia
This point is located at the base of
the spine, approximately at the top of the hip bone, four
fingerwidths from the spine.
Feet Points: For fatigue, weakness, and
pain
The Chinese believe that the lines of
chi, which run throughout the body, end in the feet. For this reason,
the feet are a rich source of acupressure points for all kinds of
problems. Many people with CFIDS find that exerting pressure with the
tip of the thumb over the entire bottom of the foot provides relief
from generalized achiness.
FURTHER READING
Blate, Michael. The Natural Healer's
Acupressure Handbook. Falkynor Books, 1983.
ACUPUNCTURE
DEFINITION. Acupuncture is a
therapeutic technique in which small needles are inserted under the
skin at chi points to promote the repair and healing of major organs,
regulate body metabolism, and correct physical ailments that result
from imbalances in the flow of chi.
BACKGROUND. The Chinese invented
acupuncture sometime in the third millennium BC, but it was not
systematized until 200 BC, when the Hungdi Neiging Suwen (The Yellow
Emperor's Classic of Internal Disease) was written. Acupuncture is
based on the concept of chi, or vital or life en ergy. In the Chinese
conceptual system, chi flows along channels through out the body,
which can be felt at specific points. When a person is ill, these
points become tender. The acupuncturist can discern the nature of the
ill ness and treat it by finding the tender points and stimulating
them with small needles inserted just under the surface of the skin.
Many years of rigorous training, as
well as considerable talent, are required to be able to lo cate these
acupuncture points. Since the concept of vital energy, or "life
force," is entirely absent in European conceptions of illness,
it is difficult to say how acupuncture works. The system of meridians
does not correspond to the central nervous system (CNS) or any other
physiologic system, inso far as anatomists can determine.
There has been speculation that some of the effects produced by acupuncture may result from localized stimulation of cortisol or perhaps a kind of "distraction" of the CNS utilizing electrical fields or endorphins; the mechanism, however, is still not readily explained using the European model of the body. Acupuncture produces distinct ef fects in about 80% of patients, whereas 20% note no effect. The Chinese use acupuncture to treat any condition that is reversible. They also use it to block pain. Since the late 1950s, more than 600,000 operations have been performed in China using acupuncture analgesia.
There has been speculation that some of the effects produced by acupuncture may result from localized stimulation of cortisol or perhaps a kind of "distraction" of the CNS utilizing electrical fields or endorphins; the mechanism, however, is still not readily explained using the European model of the body. Acupuncture produces distinct ef fects in about 80% of patients, whereas 20% note no effect. The Chinese use acupuncture to treat any condition that is reversible. They also use it to block pain. Since the late 1950s, more than 600,000 operations have been performed in China using acupuncture analgesia.
USES IN CFIDS. About half of the
patients with CFIDS we surveyed had tried acupuncture, half of whom
reported positive results. Improve ments were noted in generalized
pain, eye pain, overall well-being, mental clarity, and energy. About
a third reported negative results, including over-stimulated immune
system, severe relapse, and intolerance. A smaller per centage
reported no results from acupuncture. Positive results are most
of ten obtained when the treatment focuses on specific problems such
as pain, insomnia, loss of appetite, or nausea. Negative results in.
many cases are due to the acupuncturist's mistaken idea that patients
with CFIDS have depressed immune systems and, as a consequence,
require immune system stimulation. In CFIDS, the excess stimulation
may cause a profound exac erbation of symptoms.
PROTOCOL. During acupuncture, the
patient lies on a table while the acupuncturist places small sterile
needles under the skin. (Needle inser tion is painless.) Usually the
acupuncturist will first "pulse" you, that is, measure the
flow of chi. The effectiveness of the treatment is determined by the
size of the bore of the needle, how long it is left in place, the
depth of penetration, how much it is moved, and how often the
treatment is re peated. Sometimes one treatment is all that is needed
to achieve the de sired effect. For complicated or severe problems,
therapy may be needed two or three times a week. Often acupuncturists
are trained in Chinese herbal medicine. Certain Chinese herbs may be
recommended as part of the acupuncture therapy. Moxa (herbal incense
sticks) is also used to pro vide localized heat. Many people with
CFIDS, particularly those with chemical sensitivities, cannot
tolerate the odor of Moxa. Be sure to discuss sensitivities with your
acupuncturist before Moxa treatments.
PROS AND CONS. Acupuncture generally
provides an alternative to drug treatment for pain. This may be of
particular value to patients with numerous allergies and
environmental sensitivities. However, acupunc ture is not necessarily
innocuous. An inexperienced or misinformed acupuncturist can provoke
a relapse. Check the acupuncturist's creden tials, how long he or she
has been practicing acupuncture, and whether he or she has any
experience with CFIDS. If possible, talk to another person with CFIDS
who has been a patient.
AVAILABILITY AND COST. Acupuncture is
available in most urban centers in the United States and is becoming
increasingly more so, owing to the recent attention given alternative
healing practices in the media. Fees vary, but most acupuncturists
charge $30 to $65 per treatment. Insurance may cover the cost,
especially if the acupuncturist is also a phy sician.
MORE INFORMATION
American Academy of Medical Acupuncture
5820 Wilshire Blvd., Suite 500 Los Angeles, CA 90036 213-937-5514
(telephone)
International Foundation of Oriental
Medicine 42-62 Kissena Blvd. Flushing, NY 11355 718-321-8642
(telephone)
AROMA THERAPY
DEFINITION. Aroma therapy involves use
of the distilled essential oils naturally found in plants for healing
and cosmetic purposes.
BACKGROUND. For centuries, aromatic
oils have been recognized for their medicinal properties. In biblical
times, oil of myrrh, which is a pow erful antiseptic, was revered for
its power to quickly heal surface wounds (hence the significance of
the gift of the Magi). When Tutankhamen's tomb was opened in 1922,
scent pots of frankincense were found. The range of uses for
essential oils appears limitless. Essential oils can be used to
induce sleep (jasmine), calm the nerves (valerian, clary sage), clean
wounds (lavender), reduce aches and pains (rosemary), relieve gas
pains (peppermint), and open respiratory airways (basil). The mode of
action of aromatic oils is complex. A single oil can produce a number
of different, and even opposing, effects. Lavender, for example,
sedates in small quantities but stimulates in larger quantities. It
is not known how plant oils pro duce these effects in people, but it
has been theorized that smell, our most primordial sense, stimulates
a complex set of central nervous system (CNS) reactions that can
culminate in emotional and physiologic changes. It is well-known that
the ketones, esters, aldehydes, and alcohols found in plant oils can
serve as insect repellents, fungicides, and bactericides. Many oils
also have hormone-like properties (for example, hops, fennel, and
anise contain estrogens).
Production of essential oils is a long,
arduous process involving oil-based extraction and repeated
distillation (alcohol is never used). It takes many pounds of
flowers, leaves, or bark to produce 1/3 oz of concentrated essential
oil, which is why only a drop or two produces the desired effect (and
also accounts for the expense).
USES IN CFIDS. Aroma therapy may hold
promise for the alleviation of some CFIDS symptoms because odors
readily cross the blood-brain barrier. Because the olfactory bulbs
tie in directly to the limbic system (that part of the brain that
processes emotion), essential oils may be useful in alleviating
emotional symptoms such as anxiety, anger, and fear. Es sential oils
can also be effectively used to relieve insomnia and muscle aches. A
number of patients who have tried aroma therapy have reported good
results in treating anxiety, "jitters," and insomnia, with
no negative side effects. To relieve chronic, severe stress, Valeric
Worwood, author of The Complete Book of Essential Oils and
Aromatherapy, recommends use of hypnotics such as narcissus
(hyperactivity), jonquil (anxiety), jasmine (de pression), carnation
or valerian (insomnia), and vanilla.
Oils that can help relieve muscle fatigue include rosemary, thyme, and marjoram. To treat in somnia, a blend of sandlewood, clary sage, lemon, and chamomile may be helpful. In Chronic Fatigue Syndrome: A Natural Healing Guide, Steve Wilkinson recommends the following oils to treat symptoms of CFIDS: lavender (tension), lemon (to calm the mind, night sweats), peppermint (fever, night sweats, digestive disorders), basil or orange (to lift the spirit), rosemary (lethargy), clary sage (invigoration), and geranium (sluggish ness, emotional upset).
Oils that can help relieve muscle fatigue include rosemary, thyme, and marjoram. To treat in somnia, a blend of sandlewood, clary sage, lemon, and chamomile may be helpful. In Chronic Fatigue Syndrome: A Natural Healing Guide, Steve Wilkinson recommends the following oils to treat symptoms of CFIDS: lavender (tension), lemon (to calm the mind, night sweats), peppermint (fever, night sweats, digestive disorders), basil or orange (to lift the spirit), rosemary (lethargy), clary sage (invigoration), and geranium (sluggish ness, emotional upset).
PROTOCOL. Essential oils are used by
the drop. (Measurements are precise, so you should have a "recipe."
Either consult a book on the topic or see an aroma therapist.) The
oils are not meant to be taken internally. They can be rubbed on the
skin (after thorough cleansing), inhaled, or floated in a bath. When
applied directly to the skin, they must be mixed with vegetable oil.
To make a rub for the skin, warm slightly 2 tablespoons of pure
vegetable oil (corn, safflower, sunflower, peanut, or soy oils are
all readily obtained and make good mediums) and add four or five
drops of essential oil (or of each of several oils if you are making
a blend). You can also run bath water and simply add the oils to it
before getting into the tub and soaking. One or two drops of lavender
is all that is needed for a relax ing bath. To treat insomnia, try
placing one or two drops of clary sage, jas mine, or any of the
hypnotics on a handkerchief and place it near your pil low. The oils
are strong, so not much is needed. Breathing the vapor from a single
drop of peppermint floated in a glass of hot water can relieve gas
pain instantly, and help clear the sinuses, too!
PROS AND CONS. Essential oils are
usually benign when used exter nally and in small amounts. Aroma
therapy can prove particularly useful for treating gastrointestinal
problems because the oils are not processed through the digestive
tract. Oils also may be a good therapy option for those who are
sensitive to chemicals because they generally do not provoke
reactions. Because the oils act synergistically, you may want to
purchase a book on aroma therapy for the most effective blends.
AVAILABILITY AND COST. Essential oils
can be purchased at health food stores. They are sold in 1/3 oz
quantities and range in price. One of the least costly (about $5 per
bottle), and perhaps most useful, is lavender. One bottle can last
for years. The more exotic and rare oils can cost $15 or more per
bottle.
MORE INFORMATION
For a list of registered aroma
therapists in the United States, write:
American Aromatherapy Association
PO Box 1222
Fair Oaks, CA 95628
American Aromatherapy Association
PO Box 1222
Fair Oaks, CA 95628
In Europe, write:
International Federation of Aroma Therapists
Department of Continuing Education, Room 8
Royal Masonic Hospital ;
Ravens Court Park
London W6 OTN, England
081-864-8066 (telephone)
International Federation of Aroma Therapists
Department of Continuing Education, Room 8
Royal Masonic Hospital ;
Ravens Court Park
London W6 OTN, England
081-864-8066 (telephone)
BACH REMEDIES
DEFINITION. Bach remedies involve use
of herbal essences (principal ly from flowers) to remedy specific
physical or psychological complaints.
BACKGROUND. Bach remedies were devised
by Dr. Edward Bach, a British bacteriologist, in the 1930s. In the
1920s, he proposed the theory that altered mental and emotional
states were brought about by disharmonies that could be corrected
with the use of plant essences. Dr. Bach collected these essences, at
first, by gathering the dew that had collected on the underside of
leaves and flower petals. Because this method proved ar duous, he
later tried putting plant parts in a bowl of pure spring water, which
he left in the sun for a few hours. He then preserved the water in
al cohol. To make his remedy, he took a few drops from the bottled
essence and added them to an ounce of pure water. He administered
four drops in a little water four times a day. By the time of Dr.
Bach's death in 1936, he had discovered 38 such herbal remedies. Dr.
Bach claimed that his flower remedies cured various common physical
ailments, but primarily the remedies were used to treat emotional
problems. For example, he treated fearfulness with mimulus,
obsessional thoughts with white chestnut, lack of faith with gentian,
and general ailments with a blend of five of the essences, which he
called "Rescue Remedy."
USES IN CFIDS. Some patients report
success using scleranthus to con trol night sweats. Given the low
risk associated with Bach remedies, scler anthus might be worth
trying if night sweats are severe or resistant to oth er treatment.
Rescue Remedy, a blend of several essences that alleviates many
symptoms simultaneously, is popular among those who use Bach remedies
to relieve stress and improve sleep.
PROTOCOL. Standard dosage is three to
seven drops placed under the tongue, or in a small glass of water,
taken four times a day.
PROS AND CONS. Bach remedies are
generally well tolerated. Patients who are highly reactive, severely
ill, or have multiple allergies may want to start with one drop. Keep
in mind that the more essences you use the less effective the mixture
will be. Try to focus on one or two problems rather than several.
AVAILABILITY AND COST. Bach remedies
can be purchased at most health food stores for less than $10 a
bottle or can be ordered through Ellon Bach.
MORE INFORMATION
Ellon Bach USA, Inc. 644 Merrick Road
Lynbrook, NY 11563 516-593-2206 (telephone)
BED REST
DEFINITION. Bed rest means lying down
and resting.
BACKGROUND. Resting was an integral
part of daily life until the last generation. The Spanish siesta, the
dinner hour, teatime, the evening cigar, and afternoon snooze all
acknowledged the need to take a break from long periods of activity.
Rest charges our batteries, so to speak. Bed rest was an essential
part of every therapy until the middle part of the twentieth
cen tury. Conscientious physicians (and mothers) have recognized
throughout the ages that the body needs adequate rest to recover from
daily wear and the insults of infectious disease. Given the frequent
occurrence of serious infectious diseases that characterized life in
the earlier part of this centu ry, the sickbed was a place where
everyone would no doubt spend time at some point in a lifetime. Since
the discovery of antibiotics, however, we have become rather
overconfident. We get sick, take a pill, and keep going. In
contemporary society, resting is regarded as a luxury rather than a
ne cessity, much to the detriment of our health. We seem to have
forgotten that the human body is material and, like any material
object, it wears down with continual use.
USES IN CFIDS. Virtually every CFIDS
patient recommends bed rest as an essential part of coping with the
illness. As one patient points out, "Nothing cures better than
rest." Resting seems obvious when you are tired, but all too
many times we "push on." Patients with CFIDS learn quickly
that pushing past their limit exacerbates symptoms. Both those who
are well into recovery and those who are recently ill learn this
lesson over and over again. Rest is essential.
PROTOCOL. There is a method to resting.
Simply lying down is not enough. In order for your body to rest, your
mind must rest, too. If you use rest time to study, or do taxes, or
some other task, you will not reap the benefits of rest. When you
rest, lie as comfortably as you can. Listen to re laxing music or do
relaxation exercises. Do nothing else. The important thing is to
allow your body some time for self-repair. Resting may be con sidered
"doing nothing" in our achievement-oriented world, but as
far as your body is concerned it is "work." Your body needs
rest to reestablish a normally functioning metabolism and immune
system. If you are severely ill or relapsed, you will need to rest
all the time. Even if you are nearly ful ly recovered, include rest
time during the day. Remember, rest time is not wasted time; it is
healing time.
BIOFEEDBACK
DEFINITION. Biofeedback is a technique
in which physiologic process es are monitored by computer to enable a
person to exercise control over previously unconscious body
functions.
BACKGROUND. Biofeedback is a relatively
new technique, although the concept of using the mind to control the
body is an ancient one. Tibetan lamas and Indian yogis achieve
tremendous control over uncon scious functions through the practice
of simple meditation techniques. In biofeedback, the patient actually
sees or hears a representation of brain waves. Different brain wave
patterns can be represented by fish swimming, abstract designs, or
music. The object is to change the pattern—make it grow or shrink,
make the fish swim faster, make the music play louder— through the
power of concentration.
Biofeedback has been a topic of great
interest in the medical communi ty since the 1950s. Biofeedback
devices have been used to help patients regulate heartbeat, eliminate
migraine headaches, and control elevated blood pressure. Ultimately,
any medical problem that is affected by stress hormones can be
influenced by biofeedback techniques. In CFIDS, biofeedback may be
useful in reducing symptoms exacerbated by dysregulation of the
hypothalamus-pituitary-adrenal axis because adrenal hor mones are
sensitive to brain wave output.
USES IN CFIDS. Myra Preston, Ph.D., a
biofeedback therapist practic ing in Charlotte, North Carolina, has
patented a neurofeedback technique that in some patients has resulted
in a significant decrease in cognitive problems (CFIDS Chronicle,
Winter 1996). She uses the basic biofeedback apparatus together with
an EEC to correct the excess delta wave (slow wave) anomaly found in
people with cognitive difficulties. Dr. Preston argues that when the
brain wave pattern reverts to normal, many cen tral nervous system
(CNS) symptoms will recede, including difficulty in concentrating,
headaches, and insomnia. Michael Tansey, a researcher in Somerville,
New Jersey, successfully used neurofeedback techniques to reduce
cognitive confusion, pain, headaches, and cold extremities in a CFIDS
patient who had had severe symptoms for 21/2 years (CFIDS Chronicle,
Fall 1993). He placed sensors along the top of the skull, just above
the supplemental motor area (SMA) of the brain, with the idea that
because that area controls limbic outflow and the flow of sensory
infor mation, resolution of abnormal brain waves in the SMA would
result in cessation of cognitive, verbal, and motor control problems.
PROS AND CONS. Biofeedback is safe and
effective for most people. Patients with CFIDS have successfully used
it to treat cognitive problems, headache, cold hands, and for
relaxation. Because the technique is noninvasive and seems to address
one of the core CFIDS problems, it may hold great promise for those
with severe CNS and cognitive problems.
AVAILABILITY AND COST. Myra Preston
charges $1100 for diagnostic tests, and $90 per session for 20 weeks
of twice-weekly sessions. Insurance often covers the cost.
MORE INFORMATION
American Association of Biofeedback
Clinicians 2424 Dempster Street Des Plaines, IL 60016 847-827-0440
(telephone)
Myra Preston, Ph.D. 10620 Park Road,
Suite 230 Charlotte, NC 28210 704-543-0427 (telephone)
CHELATION THERAPY
DEFINITION. Chelation therapy involves
use of intravenous EDTA (ethylenediaminetetraacetic acid) to bind and
remove metal molecules from the body.
BACKGROUND. Chelation was developed in
the late 1940s to treat lead poisoning. It had been discovered about
a decade earlier that EDTA, a synthetic amino acid compound, had the
ability to bind with calcium. (EDTA is, as a consequence, classified
as a calcium channel blocker.) The resulting calcium combinations
then bind with heavy metals in the blood stream and remove them by
way of the kidneys and bladder. Although the only approved use of
chelation in the United States is to treat lead poison ing, chelation
therapy has also been used to treat chronic degenerative dis eases
such as hardening of the arteries, diabetes, stroke, cataracts,
senility, Parkinson's disease, and osteoporosis.
USES IN CFIDS. Because of the American
Medical Association's reluc tance to accept chelation as a valid form
of treatment for conditions other than lead poisoning, no studies
from the United States support its use in CFIDS. However, Dr. E.G.
Boergman of South Africa reported a 100% im provement rate in 16
CFIDS patients using EDTA chelation (CFIDS Chronicle, Summer 1994).
One of Dr. Boergman's patients recovered total ly after 10 infusions.
The others reported 60% to 90% recovery from phys ical and mental
symptoms. (However, it is important to note that Dr. Boergman's study
was quite small and has not been replicated. Other pa tients have not
substantiated his claims.) In theory, chelation could offer
considerable benefit to patients in whom CFIDS was triggered by
exposure to pesticides or other toxic chemicals. In these cases,
chelation could re move heavy metals, which continue to cause
symptoms and exacerbate immune system irregularities.
PROTOCOL. To be effective, EDTA
chelation must be administered by intravenous drips. Each treatment
takes approximately 4 hours. The rec ommended frequency of treatment
is once a week. The main chelating in gredient used in this therapy
is EDTA, but other chelators such as vitamin C, vitamin A, and
selenium may be added to the infusion to boost the chelating power of
the mixture. Chelation can also be accomplished orally with natural
chelating agents such as vitamin C (4000 mg/day). Oral chelation
usually is not as effective as intravenous chelation.
PROS AND CONS. Side effects of
chelation include decreased blood pressure, hypoglycemia, joint pain,
fatigue, weakness (due to potassium depletion), and peeling of the
skin (due to decreased zinc and vitamin B6 levels). Because the
chelated compounds are excreted through the kidneys, chelation can
damage those organs. Chelation is contraindicated in pa tients with a
history of kidney, liver, or bladder disease (such as interstitial
cystitis). Chelation also depletes the body of vitamin B6 and
minerals such as potassium, zinc, magnesium, and chromium. In
patients with low con centrations of these vitamins and minerals, a
long course of chelation therapy can cause considerable damage.
Before starting chelation therapy, nutritional status should be
checked and corrected if necessary. In any case, nutritional
supplementation is necessary during chelation therapy. Be sure your
physician is familiar with the American College of Ad vancement in
Medicine protocol before chelation therapy is started.
AVAILABILITY AND COST. Each chelation
treatment costs $50 to $100, depending on where it is performed
(costs are higher on the east and west coasts) and whether other
supporting therapies are included. With addi tional tests and
supporting treatments, an entire course of treatment may cost more
than $1000. Insurance companies usually require a predetermi nation
for this treatment to establish "medical necessity," so
check with them first.
MORE INFORMATION
American Board of Chelation 70 W. Huron
Chicago, IL 60610 312-787-2228 (telephone)
American College of Advancement in
Medicine 23121 Verdugo Drive, Suite 204 Laguna Hills, CA 92653
800-532-3688 (toll-free telephone) 714-583-7666 (local telephone)
CHIROPRACTIC
DEFINITION. Chiropractic is the
technique of manipulating the spinal column and body joints to
alleviate back or joint pain.
BACKGROUND. Although hands-on
manipulation of the joints and spine was practiced in ancient Egypt
and Assyria, the technique was not popularized in the United States
until the late 1800s. The central premise of traditional chiropractic
is that subtle deviations of the spinal column, called subluxations,
can interfere with nerve transmissions causing various health
problems. The chiropractor, by manipulating the vertebrae back into
their normal position and giving recommendations about exercise and
posture improvement, can remove irritation to the nerves that may be
causing pain.
USES IN CFIDS. Chiropractic is normally
used to treat back and neck pain, although it also helps alleviate a
broad range of related symptoms such as insomnia, headaches, and
sciatica.
PROTOCOL. Most chiropractors like to
see their patients two or three times a week. In the majority of
patients, improvement is noted in 9 to 12 sessions.
PROS AND CONS. Results in CFIDS are
mixed. Some patients claim relief from headaches and muscle pain,
which, in turn, has helped them sleep. An equal number say
chiropractic worsened their pain. The muscles and other tissues
surrounding the spine are exquisitely sensitive. The tradi tional
form of chiropractic, in which the spine is abruptly "popped"
with a sharp hand movement, may place too much strain on these
tissues, caus ing injury. The pain generated by such treatment lasts
for days, sometimes weeks. Patients interested in trying chiropractic
for the first time might want to locate a more gentle form of
chiropractic (such as "network").
AVAILABILITY AND COST. Chiropractic
adjustments usually range be tween $25 and $45 per visit. Initial
visits, which may include taking a his tory and x-ray examination,
cost more, depending on the amount of time the chiropractor spends.
Many insurance companies cover the cost of chi ropractic treatment.
MORE INFORMATION
American Chiropractic Association 1701
Clarendon Blvd. Arlington, VA 22209 703-276-8800 (telephone)
Association for Network Chiropractic PO
Box 147 Yonkers, NY 10710 718-891-4077 (telephone)
EXERCISE
DEFINITION. Exercise includes any
systematic program of body move ment that is designed to strengthen,
tone, or stretch muscles.
BACKGROUND. Exercise has been an
important component of school health programs since the early 1960s
when President Kennedy called for a new era of "vigor."
Since then, exercise has become a perpetual preoccupa tion for
health-conscious Americans, many of whom incorporate jogging,
running, swimming, and regular visits to a health club into busy work
schedules. Moderate exercise produces many health benefits, such as
in creased strength and sense of well-being, lowered risk for heart
disease, re duced arthritic pain, increased mental alertness, and
improvements in di gestion and metabolism. For most people, exercise
is "good for what ails you."
The three basic types of exercise are
aerobic, subaerobic, and anaerobic. Aerobic exercise induces systemic
changes. In practical terms, aerobic ex ercise is any exercise that
lasts at least 12 minutes, involves deep breathing, and uses major
muscle groups (thighs and buttocks). Jogging and hiking are good
examples of aerobic exercise because they affect heart rate and
breathing and utilize major muscle groups. Some metabolic changes
that occur as a direct result of aerobic exercise are increased
utilization of oxy gen, increased production of ATP (adenosine
triphosphate), and increased utilization of the Krebs cycle
(tricarboxylic cycle).
Subaerobic exercise is what most
clinicians mean by "gentle" exercise, such as walking,
golfing, nonstrenuous hiking, light weight lifting, and swimming. All
of these can be done without pushing the heart rate past 50% of its
maximum capacity. None of these forms of exercise will pro duce
metabolic changes unless the person is out of shape or is ill.
However, they help build muscle strength and endurance. Subaerobic
exercise also elevates mood, improves cognition, enhances immune
system function, and improves circulation.
Anaerobic exercise is any form of
aerobic exercise that pushes heart rate to its limit. A runner who
reaches a point of breathlessness is running anaerobically. Metabolic
changes induced by anaerobic exercise are in creased production of
lactic acid (causing burning pain in muscles), low ered ATP
production, and decreased dependence on the Krebs cycle.
USES IN CFIDS. One of the ongoing
debates among CFIDS clinicians, as well as their patients, is whether
exercise is good or bad for patients with CFIDS. The Centers for
Disease Control and Prevention (CDC) maintains that patients with
CFIDS need to maintain a steady, low-impact exercise regimen to avoid
becoming deconditioned. Indeed, some physicians rec ommend exercise
as one of their chief CFIDS therapies. Other clinicians disagree,
noting that exercise is contraindicated in viral illnesses (witness
poliomyelitis). They point out that exercise intolerance is a
hallmark symptom of the illness and that symptoms invariably worsen
after any form of exercise.
Which position is correct? Both.
According to Dr. Charles Lapp, exer cise is the proverbial
"double-edged sword." On the positive side, people mention
that exercise increases their strength and helps keep them men tally
alert. It also seems to have beneficial effects on the immune system.
Some physicians believe gentle exercise can help reverse some of the
im mune system malfunction of chronic CFIDS.
Dr. Benjamin Natelson, of the New Jersey CFS Center, points out that natural killer cells decline with inactivity (CFIDS Chronicle, Winter 1996). He contends that with a "very, very gentle training program," immune markers may improve. On the negative side, single-photon emission computed tomographic (SPECT) scans have shown that in patients with CFIDS who exercise, brain blood volume is reduced 1 to 3 days after exercising. In patients who are acutely or seriously ill, this could have profoundly negative effects on immune and endocrine system regulation. In patients with CFIDS, exercise also lowers cortisol levels, which makes it more difficult for the body to control in flammation. In addition, it increases erratic breathing and leads to a rapid progression to anaerobic metabolism, which produces ammonia and lactic acid. These negative results are the opposite of what would normally be ex pected.
Dr. Benjamin Natelson, of the New Jersey CFS Center, points out that natural killer cells decline with inactivity (CFIDS Chronicle, Winter 1996). He contends that with a "very, very gentle training program," immune markers may improve. On the negative side, single-photon emission computed tomographic (SPECT) scans have shown that in patients with CFIDS who exercise, brain blood volume is reduced 1 to 3 days after exercising. In patients who are acutely or seriously ill, this could have profoundly negative effects on immune and endocrine system regulation. In patients with CFIDS, exercise also lowers cortisol levels, which makes it more difficult for the body to control in flammation. In addition, it increases erratic breathing and leads to a rapid progression to anaerobic metabolism, which produces ammonia and lactic acid. These negative results are the opposite of what would normally be ex pected.
In short, a simple answer to the
exercise question is, if you are severely or acutely ill, exercise
can make matters worse—in some cases, much worse. The time to
discuss an exercise program with your physician is when the illness
is stabilized and clear signs of recovery are noted.
PROTOCOL. Most CFIDS clinicians advise
a gradual reintroduction of exercise. Subaerobic exercise, that is,
exercise that does not cause the body to heat up or increase heart
rate, is often recommended. This form of exercise helps keep muscles
conditioned, increases stamina, and helps with blood circulation. It
also puts little strain on ATP production, making it appropriate for
people with CFIDS-induced metabolic disturbances. Walking and
swimming are probably the best forms of exercise for this purpose.
Patients who have been severely ill or have had relapses should begin
exercising at extremely low levels, walking slowly for 2 or 3 minutes
at most. The amount of time spent walking can be increased in gradual
increments over weeks or months (not days). It is good to begin
exercising only twice a week to make note of any negative effects
over the following 3 days (keep a diary).
Once you are able to walk for 6 or 7
minutes without feeling short of breath, you can consider
"weightless" weight training to strengthen specif ic sets
of muscles. CFIDS patients have had some success using
weight-lift ing equipment set at zero to help improve and tone
muscles that have been inactive for months or years.
Once you begin to exercise, it is
important to remember that you are not in a contest. How fast you go,
how many laps you swim, how many blocks you walk, or how many weights
you lift is not only irrelevant, but can be counterproductive. As
Dean Anderson, a former ski racer put it, "Most important was
learning to enjoy exercise without succumbing to the urge to 'train,'
which meant I had to give up on any idea of progress ing—of doing
more push-ups or of jogging farther or faster.... Had I set training
goals, as healthy people do, I would have invited not only a
suc cession of relapses, but also discouragement and perhaps
demoralization" (CFIDS Chronicle, Winter 1996). In other words,
learn your limits, which may very well fluctuate from day to day, and
stick to them.
FURTHER READING
Bailey, Covert. Smart Exercise. New
York: Houghton Mifflin Co., 1994.
RESOURCE
A videotape designed to provide gentle
conditioning and stretching for fibromyalgia pa tients has been
prepared by Dr. Robert Bennett and Dr. Sharon Clark. The cost is
$19.95 and can be purchased from:
The Oregon Fibromyalgia Foundation
1220 SW Yamhill, Suite 303
Portland, OR 97205
503-228-3217 (telephone)
HOMEOPATHY
DEFINITION. Homeopathy (from the Greek
homeos, similar, and pathos, suffering) is a system of medicine based
on the principal that "like cures like"; that is,
substances that produce symptoms similar to those manifested by the
illness will act as remedies for that illness.
BACKGROUND. The basic principles of
homeopathic medicine date from the fourth century BC, when
Hippocrates first articulated the idea that a remedy which produces
specific symptoms in a healthy person will cure the same symptoms in
a sick person. It was not until 1810, however, that homeopathic
remedies achieved wide popularity in Europe and America. In the early
part of the nineteenth century a young German physician, Dr. Samuel
Hahnemann, discovered that chinchona bark gave him malaria-like
symptoms. What surprised him was that chinchona bark was used to
treat malaria.
Over the years, Dr. Hahnemann experimented with a number of other plant extracts, drugs, and chemicals that produced symptoms of various illnesses. He discovered that minute quantities of these substances served to cure the illnesses whose symptoms they mimicked. Larger quantities of these plants were poisonous so Hahnemann devised a system of repeated dilutions, or titrations, to preserve effectiveness without injury to the patient. Homeopathic remedies are so diluted as to leave no perceivable trace of the original plants from which they are de rived. The effectiveness of the substance, even in molecular traces, is due to its ability to stimulate the body's natural healing mechanisms along certain specific lines, the symptoms produced by the remedy acting as a set of in structions to the immune system.
Over the years, Dr. Hahnemann experimented with a number of other plant extracts, drugs, and chemicals that produced symptoms of various illnesses. He discovered that minute quantities of these substances served to cure the illnesses whose symptoms they mimicked. Larger quantities of these plants were poisonous so Hahnemann devised a system of repeated dilutions, or titrations, to preserve effectiveness without injury to the patient. Homeopathic remedies are so diluted as to leave no perceivable trace of the original plants from which they are de rived. The effectiveness of the substance, even in molecular traces, is due to its ability to stimulate the body's natural healing mechanisms along certain specific lines, the symptoms produced by the remedy acting as a set of in structions to the immune system.
USES IN CFIDS. Homeopathic remedies
have been used successfully in CFIDS, although they may be better
used for treating specific or acute problems such as headache,
sinusitis, or insomnia than as a primary treat ment for CFIDS.
PROTOCOL. Classic homeopathic remedies
are usually taken either all at once or over a short time. Because
they are incompatible with allopath ic, or pharmaceutical, remedies,
you must make a choice as to which ap proach you think will work best
for you. You cannot take homeopathic remedies and drugs at the same
time, although you can try taking them se rially. The decision as to
which remedy is best is based on careful, lengthy evaluation of
symptoms by a homeopath, who must choose wisely because only a single
remedy is prescribed. Often the remedy will provoke a "healing
crisis" or worsening of symptoms, after which the homeopath will
re assess the situation and recommend a different remedy (or none, if
the problem is resolved).
Although classic homeopathy includes a
limited number of remedies (about 20), modern, "eclectic"
homeopathy can make use of hundreds of solutions. Homeopathic blends
and remedies for specific problems can also be purchased in health
food stores, although these tend to be less reli able. The dosage is
usually "as needed" or as indicated on the package. This
type of homeopathic remedy may be taken in conjunction with
pharma ceutical agents, which is an advantage for patients who must
take certain medications on a regular basis. Homeopathic remedies are
taken on an empty stomach in pill, liquid, or sublingual form.
PROS AND CONS. Homeopathic remedies are
generally less expensive (especially single-dose remedies) than drugs
and are usually regarded as having fewer side effects. Homeopaths
refer to these remedies as "sugges tions" that the body may
take or ignore. This may be true for the most part, but does not
always seem to be the case in CFIDS. The reason may simply be that
because homeopathic remedies stimulate the body to self-repair, they
can also stimulate the immune system. Because many CFIDS symptoms
seem to arise precisely because of an overactive immune sys tem, it
is possible that homeopathic remedies can exacerbate the problem.
Consult with a trained homeopath before embarking on this type of
ther apy.
AVAILABILITY AND COST. Homeopathic
remedies range from $10 to $25, although imported remedies (usually
German) can cost more. Office visits are comparable to those to a
physician and sometimes include the cost of the remedy. As some
homeopaths are also physicians, insurance may cover the cost of a
consultation.
MORE INFORMATION
International Foundation for Homeopathy
2366 East Lake Avenue E, Suite 301 Seattle, WA 98102 206-324-8230
(telephone)
National Center for Homeopathy 801 N.
Fairfax Street, Suite 306 Alexandria, VA 22314 703-548-7790
(telephone)
HYDROTHERAPY
DEFINITION. Hydrotherapy is the use of
water for healing.
BACKGROUND. The idea of using water to
heal is not new. For cen turies, people have immersed themselves in
therapeutic baths as a means to prevent and cure illness. The ancient
Romans and the Incas built sump tuous tiled baths to acknowledge the
importance placed on the restorative powers of water. Healing waters
can be found all over the world, from Lourdes in France to the Ganges
River in India. Spas and hot springs have long been popular in the
United States as well. Saratoga Springs, New York, and Hot Springs,
Arkansas, still enjoy a reputation for restoring health and vigor.
Although spas are no longer as popular as they were a century ago,
the effects of water on the body should not be underestimated. The
body is, after all, 70% water. Water, in one form or another,
supplies most of the nutrients our bodies need to maintain life. Our
permeable skin allows sub stances in mineral-rich water to pass into
our bodies. And various water temperatures and pressures can have a
profound effect on the way our me tabolism and immune system
function.
USES IN CFIDS. Warm-water baths can
help reduce pain associated with lactic acid buildup in muscle
tissues. This is the pain so often experi enced by patients with
fibromyalgia-like symptoms. The water tempera ture should be at about
body temperature. Many people have reported that warm-water baths
help loosen tight muscles, reduce leg pains, and in gen eral create a
feeling of relaxation.
Cool-water baths can also be
beneficial. One woman reported that a daily 20-minute bath at a very
cool 61° F (16° C) helped her feel better overall. The
effectiveness of this strategy is most likely due to the fact that
the body, when immersed in cold water, automatically shuts down the
blood supply to the skin, shunting it instead to vital organs. The
addition al blood supply to the brain, liver, and other organs
affected by CFIDS could theoretically have a profound impact on
reducing symptoms
.
.
Dr. Paul Cheney has also used
cool-water hydrotherapy with good re sults. Vertical immersion up to
the neck in water at about the temperature of a heated swimming pool
has reduced symptoms in a number of his pa tients. The rationale
behind this novel form of hydrotherapy is that the in creased
pressure at the feet forces lymphatic flow to reverse itself, up the
body to the thoracic duct (just below the left clavicle), where it is
infused into the blood stream. The presence of the extra lymph tissue
signals the immune system that cytokines are already circulating and
the immune system automatically downregulates. In patients
experiencing the effects of excess cytokine production,
downregulation of immune system chemicals can provide tremendous
relief. Whether due to the additional blood sup ply provided to vital
organs or to downregulation of the immune system, cool-water
hydrotherapy may offer considerable benefits to a number of people
with CFIDS.
PROTOCOL. Dr. Cheney's hydrotherapy
protocol requires almost complete immersion in water at 80° to 86°
F (swimming pool tempera ture). For the process to work, it is
important that the patient remain ver tical and immersed up to the
neck, which means a flotation device is nec essary. Initially,
immersion time is 15 minutes and is increased by 5 min utes per
session to 1 hour (at about 3 weeks). The entire treatment plan calls
for 16 weeks of hydrotherapy, with three sessions per week.
PROS AND CONS. Dr. Cheney's
hydrotherapy program may be a par ticularly good treatment option for
people with pain because it appears to have a positive effect in
relieving fibromyalgia-type symptoms. It seems to have minimal side
effects, although some severely ill patients have experi enced
temporary worsening or relapse of symptoms, no doubt due to the
increased concentration of cytokines in the blood stream. These
symp toms decrease over time. Patients who stopped treatment before
the 16-week period have had relapses. Once you embark on this
treatment, you are committed to finish it. Another problem that could
occur is chilling. Dr. Cheney recommends that if you start to shiver,
get out of the pool, but do not take a hot shower. If necessary,
purchase a wet suit to help maintain body heat.
AVAILABILITY AND COST. Most forms of
hydrotherapy are not ex pensive. Warm or cool baths, for example, can
be taken at home. A mem bership to a facility with a pool (such as a
club or a community center) may be necessary to follow Dr. Cheney's
hydrotherapy program, however. For his program, you will also need to
purchase a flotation device to rest on while you are in the water.
HYPNOSIS
DEFINITION. Hypnosis involves inducing
a trance-like state, some where between sleep and wakefulness, to
produce greater suggestibility in a patient.
BACKGROUND. Although the technique of
producing physiologic and psychological effects by means of deep
trances has been used by yogis, mystics, and oracles since earliest
times, it was not until the eighteenth century that Europeans
regarded the hypnotic trance as useful for medical purposes. In the
1760s, Franz Anton Mesmer popularized hypnosis in Europe via a series
of theatrical demonstrations of what he called "animal
magnetism." Mesmer believed that illness was the direct result
of an imbal ance in animal magnetism and that hypnosis could correct
these imbal ances. Because Mesmer's subjects did rather silly things
while "mesmer ized," hypnosis initially acquired the
reputation as a form of entertainment rather than a therapy. The
current practice of hypnosis has discounted Mesmer's theory of animal
magnetism and eliminated the theatrical as pects of hypnosis to
provide a unique means of influencing normally inac cessible
physiologic functions, namely, those controlled by the autonomic
nervous system. By accessing the body's ability to produce heat,
dilate or constrict blood vessels, speed or slow metabolism, and so
forth, the hyp notist can utilize the body's own mechanisms to
control pain, reduce anx iety, relieve phobias, and cure addictions.
USES IN CFIDS. Hypnosis can be
beneficial in reducing the effects of anxiety and stress brought on
by illness. It can also help increase blood flow to the brain,
thereby alleviating headaches, insomnia, and some cog nitive
problems. One person reported successfully breaking the smoking habit
through the use of hypnosis. Most describe hypnosis as "very
relaxing."
PROTOCOL. A standard visit to a
hypnotist involves evaluation of a particular problem (insomnia,
smoking, anxiety). After assessing the problem, the hypnotist will
ask you to sit back in a reclining chair and fo cus your eyes on a
point on the ceiling or a light while he or she speaks to you in a
low, monotonous voice. After a short time, your body will relax, and
the hypnotist will suggest that you close your eyes. While your eyes
are closed, the hypnotist will read from a script specifically
designed for your particular problem. After listening, you will be
asked to open your eyes on the count of 10 and come back to the
office setting. The hypnotist may ask you what you felt or "saw."
The visit usually takes 1 hour.
AVAILABILITY AND COST. Licensed
hypnotists generally charge $50 to $90 per hour session, depending on
their degree of training. Hypno therapists, who usually hold an
advanced degree in psychology, may charge more.
MORE INFORMATION
International Medical and Dental
Hypnotherapy Association 4110 Edgeland, Suite 800 Royal Oak, MI 48073
313-549-5594 (telephone)
or
1182 LyonRd.
Delta Vancouver, BC V4E 2S9
Canada 604-597-4264 (telephone)
LIVE CELL THERAPY
DEFINITION. Live cell therapy involves
implantation of healthy cells, usually derived from calf fetuses,
into humans to revitalize vital organs and reverse the course of
degenerative diseases.
BACKGROUND. Live cell therapy, or
cellular therapy, was devised in the 1930s by a Swiss surgeon, who
discovered that he could help regenerate organs that had been damaged
by disease and the aging process by inject ing cells obtained from
healthy unborn animals. (He used unborn animals to minimize the
effects of immune system rejection of foreign material.) The theory
behind the therapy is that cells from healthy organ tissues in jected
into the body will migrate to the same organ in the patient,
replac ing or rejuvenating damaged cells. Consequently, live cell
therapy is appro priate for treatment of diseases that affect
specific organs. Live cell therapy also enjoyed considerable
popularity among men who hoped to prolong sexual vitality and
youthful vigor. Notable among these were Winston Churchill, Dwight
Eisenhower, Charles DeGaulle, Charlie Chaplin, and Bob Hope. Live
cell therapy is currently unlicensed in the United States, but can be
obtained in clinics in Switzerland and Mexico.
USES IN CFIDS. Live cell therapy is one
of the CFIDS treatments of fered by the American Biologies Clinic in
Tijuana, Mexico, as well as other alternative health care clinics
abroad. In general, live cell therapy provides short-term relief of
some CFIDS symptoms, particularly exhaustion. Given the nature of the
therapy, however, it does not hold much promise for affecting the
general course of the illness.
PROTOCOL. Live cells are administered
by injection, usually once every few months. The cells to be injected
can come from any part of the endocrine or exocrine system of the
calf, but for CFIDS the recommended organs are the hypothalamus,
thymus, adrenal glands, brain, pituitary gland, intestines, and
umbilical cord.
PROS AND CONS. Some patients report
that live cell therapy helps provide an energy boost and improves
overall immune function. Patients who tend to be reactive, however,
have reported side effects such as sweat ing and heart palpitations.
Because live cell therapy is not available in the United States, it
can be expensive. Live cell therapy is short-lived, which means the
injections must be repeated to be effective. Injections are painful,
although not unbearable. Due to the unpredictability of its effect on
the immune system, some clinicians regard live cell therapy as
extreme ly risky in patients with CFIDS.
AVAILABILITY AND COST. Depending on
duration of treatment, live cell therapy can cost $500 to $2000.
Although it is not available in the United States, some extracts
(such as thymus) can be ordered from Canada and Germany.
MASSAGE
DEFINITION. Massage therapy involves
manipulation of soft tissue by rubbing, stroking, kneading,
compressing, or vibration.
BACKGROUND. Massage techniques are as
old and as varied as the cultures that originally devised them. As a
consequence, it is almost im possible to make a general description
of massage therapy. Some tech niques such as Swedish massage are
vigorous and cover the entire body. Others such as shiatsu apply
pressure to specific areas. All massage tech niques share the
principle that the body can be healed through mechanical means.
Massaging the body can produce profound metabolic changes. A vigorous
massage stimulates the sympathetic nervous system, which speeds up
the metabolism, increasing blood circulation, heart rate,
respi ration, and surface temperature. A light massage, especially
over the lower back, stimulates the parasympathetic nervous system,
decreasing heart rate and blood pressure and increasing digestive
action. Any relaxation of muscle knots and spasms enhances the
ability of the vascular system to cleanse the lymphatic system and to
clear stagnant tissue fluid, toxins, and the excess lactic acid
buildup that causes acidosis and muscle pain.
USES IN CFIDS. Most CFIDS patients use
massage to relieve the pain associated with fibromyalgia, headaches,
and muscle spasms. A number of patients have reported that firm
massage of the soles of the feet has a pro found beneficial effect
throughout the body.
PROS AND CONS. While it may seem like
the logical therapy for pain, a vigorous massage can paradoxically
make pain worse. A number of peo ple have reported worsened pain
after general massage. The reason for the aggravation of pain is
probably due to the practice of placing excessive pressure on nerve
endings to relieve knotty muscles. Nerve compression only exacerbates
the pain created by an already irritated nervous system. Vigorous
massage can also release accumulated toxins into the system. Patients
with CFIDS may feel general malaise after massage because of the
sluggish elimination of these toxins. On the other hand, gentle
massage is often beneficial. Those who want to try massage to treat
chronic or severe pain may want to consider starting with some of the
less vigorous tech niques. Vigorous massage is contraindicated in
patients with osteoporosis, hypertension, inflammation, arthritis,
varicose veins, thrombosis, aneurysm, skin, muscle, or bone disease,
unhealed bone fracture, torn liga ments, tendons, or muscles,
diabetes, tumors, and frostbite, and in preg nant women.
AVAILABILITY AND COST. Massages cost
$40 to $60 per hour. Some times massage schools offer less expensive,
apprentice rates. If performed by a licensed physical therapist, the
cost of massage may be covered by in surance (usually a physician
referral is required).
CRANIOSACRAL MASSAGE
Craniosacral massage is a gentle form
of massage focusing on the spinal cord and skull. It was developed in
the 1970s by an American os teopath, John Upledger, who noticed that
spinal fluid made rhythmic pul sations as it traveled up the spinal
column. He speculated that alterations in the pulses could be used
for diagnosis and devised a system by which ill nesses could be
treated by subtle readjustments. Craniosacral massage is used to
treat head injuries, learning difficulties, balance disorders,
dyslexia, hyperactivity, whiplash, ear and eye problems, and
temporomandibular joint (TMJ) syndrome.
LYMPHATIC DRAINAGE
The Vodder method of manual lymphatic
drainage is a gentle, rhyth mic European massage technique designed
to increase and accelerate the movement of lymphatic fluid through
the body. It was developed in France in the 1930s to treat a variety
of conditions that might be caused or aggravated by congested lymph
tissue, including sinusitis, acne, edema, in flammation, and
arthritis.
REFLEXOLOGY
Reflexology is based on the idea that
reflex points (or zones) located on the hands and feet correspond to
every organ in the body. Steady, even pressure applied by the fingers
to these zones is said to remedy any imbal ances in the corresponding
organs. Reflexology promotes improved circu lation and contributes to
a sense of relaxation and well-being. Because reflexology may be
practiced easily on one's own feet and hands, it is an ide al form of
self-massage. In contrast, zone therapy, a more complex form of
reflexology, can be performed only by a practitioner. Unlike
self-adminis tered reflexology, zone therapy is quite painful.
SHIATSU
Related to acupuncture, shiatsu is an
ancient form of massage that dates to the third millennium bc. The
basic technique consists of the appli cation of pressure by the
fingers over some 600 neural trigger points locat ed on lines
(meridians) throughout the body. The points are said to be places
where lymph vessels tend to congregate. By releasing the point with
gentle sustained pressure, energy blocks are removed and the body can
better eliminate waste products such as lactic acid and carbon
monoxide that have accumulated in body tissues.
THERAPEUTIC TOUCH
The gentlest of all massages,
therapeutic touch, is derived from the an cient practice of laying on
of hands. It was devised in the 1960s by Dolores Krieger, a nurse,
and Dora Kuntz, a clairvoyant. Technically, therapeutic touch is not
massage but "energy work" because it does not involve
direct contact with the body. Instead, the body's "energy
fields" are manipulated to promote healing. Therapeutic touch is
reported to be very relaxing and can help relieve pain.
MORE INFORMATION
American Massage Therapy Association
National Information Office 1130 W. North Shore Avenue Chicago, IL
60626 773-761-2682 (telephone)
MEDITATION
DEFINITION. In meditation, a particular
state of consciousness is achieved by means of concentration,
contemplation, or visualization tech niques.
BACKGROUND. Meditation is an ancient
practice that has been used throughout the ages to reach an inner
state of quiet. Meditation tech niques form the backbone of Buddhism,
one of the world's major reli gions. Because meditation was, and
still is, practiced to achieve an altered or "higher" state
of consciousness (a drawing closer to a divine state of be ing), the
practice of meditating is less a therapy than a way of being.
Meditation is as much a way of looking at the world as it is a
technique, as much a philosophy as a practice. In meditation, the
means and the ends are as one. One meditates for its own sake, not to
achieve a specific goal but to let go of all goals. In the process of
letting go, a different person emerges. A different body may emerge,
as well. Meditators have been known to achieve lowered blood
pressure, relief from pain and migraine headaches, and greater mental
clarity and alertness through the simple act of gazing within.
USES IN CFIDS. A significant number of
patients with CFIDS medi tate. All report an increased feeling of
calm and improved outlook on life. Meditation is also effective in
controlling the pain generated by an over-reactive nervous system.
Like rest, meditation seems to cause no damage and results only in a
general sense of improvement. Patients with CFIDS, espe cially those
who find themselves plagued by depression, anxiety, fear, and anger,
can benefit greatly by the practice and philosophy of "letting
go."
PROS AND CONS. There is no "right"
way to meditate, but some prac titioners may try to convince you
there is. Of the many meditative tradi tions, not all are conducive
to healing long-term illnesses. Zen, for exam ple, was developed for
healthy, young, Japanese monks. Sitting for several hours staring at
a blank wall (and getting roused when you drift off to sleep) is
perhaps not the best meditation technique for ill people. When you
begin to meditate, especially if you are quite ill, do it your own
way. Lie down, in the comfort of your bed, and listen to your
favorite relaxing mu sic. Remember, meditation is a state of mind.
How you get there is up to you.
AVAILABILITY AND COST. You can meditate
at home for free or you can join a meditation group. Classes in
meditation and yoga centers are not usually expensive ($5 to $8 per
class). Meditation retreats are more ex pensive. You can teach
yourself to meditate easily and painlessly by listening to tape
series made for that purpose or by reading a book on medita tion
techniques.
RESOURCES
Borysenko, Joan. Minding the Body,
Mending the Mind. New York: Addison-Wesley Publishing Co., 1987.
Sounds True audiotape catalog
(800-333-9185). Included in this catalog are several excel lent tape
series on meditation by authors who have written books on the topics
of meditation and healing. These can serve as useful introductions to
Eastern meditation and the philosophy that inspired it. Examples
include the following:
• "The Inner Art of Meditation"
(insight meditation as taught by clinical psychologist Jack Kornfield
is a meditation course complete with practice periods and
question-and-answer sessions).
• "The Higher Self"
(control of body and mind through Ayurveda and Indian medita tion as
taught by endocrinologist Deepak Chopra).
• "The Art of Mindful Living"
(the art of bringing mindful awareness into daily life, as taught by
meditation master and Nobel Peace Prize Nominee Thich Nhat Hanh, a
Vietnamese Buddhist, Zen master, and practitioner of the Art of
Peace).
TENS
DEFINITION. TENS (transcutaneous
electrical nerve stimulation) is the topical application of an
electrical stimulus to a peripheral nerve in or der to control pain.
BACKGROUND. The TENS machine was
developed after the "gate" model of pain became popular.
Pain researchers believed that when nerves are overstimulated the
pain message stops (the assumption being that the brain cannot
process sensory input from so many "gates"). The
stimula tion from TENS is supposed to "drown out" the pain
felt in a nerve. Some have also proposed that the reason TENS works
is not because the nerve is overstimulated but because the electrical
stimulation prompts the release of pain-killing endorphins. Whether
the relief is through nerve overstimulation or chemistry, the result
is the same—pain is relieved.
USES IN CFIDS. TENS has been
recommended for patients with fibromyalgia-type pain, that is, pain
generated by trigger points and nerve irritation.
PROTOCOL. The TENS unit is a small
machine that generates electri cal current, which is conveyed along
wires to small rubber-tipped elec trodes. The unit can be worn on a
belt. The electrodes are placed on spe cific sites on the skin by a
physician or physical therapist and are held in place with adhesive
tape. The amount of stimulation is regulated by the physician.
PROS AND CONS. TENS is nonaddictive,
has no damaging side ef fects, and, in many cases, is an effective
form of pain control. However, it does require a visit to the
physician's office and can be expensive if many treatments are
required.
AVAILABILITY AND COST. The TENS unit is
expensive ($300 to $500) and must be ordered by a physician;
therefore, they usually are used in the context of an office visit.
The cost of the application varies, depending on the supervising
clinician. In some cases, insurance covers the cost.
VISUALIZATION AND IMAGERY
DEFINITION. Visualization (or guided
imagery, creative visualization, creative imagery, or mental imagery)
is the use of mental images to pro duce changes in the body.
BACKGROUND. The use of imagery for
healing first drew attention in the 1950s when a cancer patient went
into remission after visualizing the disappearance of a tumor. This
case fueled great interest in the medical community and eventually
led to the development of visualization tech niques geared
specifically to certain diseases. While visualization has en joyed a
reputation as a "miracle cure," it should be remembered
that spon taneous remissions are possible with any illness. Those who
question the curative powers of visualization point out that its
"healing powers" are co incidental at best. Despite its
limitations, visualization can serve as a useful coping technique.
Visualization works by mobilizing the
immune system, which is not normally under conscious control, through
the efforts of higher brain functions. The act of voluntarily
creating images (as opposed to hallucina tions or dreams) is
controlled by the cortex, whereas the immune system is regulated, at
least in part, by structures in and around the limbic system, notably
the hypothalamus. Since the nerve fibers that connect the limbic
system to the cortex flow through the hypothalamus, allowing for a
two-way interchange between thought and autonomic nervous system and,
hypothetically, immune system function, it is argued that thought can
also direct the outcome of illness.
USES IN CFIDS. Visualization techniques
can be helpful in maintain ing a sense of calm. This can be useful
for patients who are severely ill or are experiencing a relapse. Some
have reported that, much like hypnosis and meditation, visualization
helps them control pain and anxiety.
PROTOCOL. To visualize, you must begin
by relaxing. Get comfort able, take three or four deep breaths (if
you practice meditation or self-hypnosis, you can use any of those
techniques), and concentrate on the de sired images. For CFIDS,
images that have been suggested include the fol lowing:
• Imagine you are surrounded by a
bubble of pink light through which nothing can pass. You are
completely protected.
• Breathe in light through the crown
of the head. Feel that the light's energy is going through every cell
and every tissue, bringing feelings of love and well-being to every
part of your body.
• See the light perfectly balancing
your immune system and restoring it to the way nature intended.
If "seeing" does not work for
you, try kinetic imagery. Kinetic, or motion, imagery techniques are
more primal than techniques that rely on vision alone. As a
consequence, they may be more useful to patients who are acutely ill
or cannot make a visual image. Some patients have imagined they are
gently rocking in a boat, floating down a stream, or traveling around
a sideways figure of eight. These movement-oriented images are useful
to alleviate headaches, panic, vertigo, and episodes of nonlocalized
pain.
PROS AND CONS. Visualization is
inexpensive (all you need is a book to explain the theory and you can
invent your own images) and it might help you feel more in control.
Visualization, however, does not seem to work against the disease
process itself. Patients who are led to believe that skillful use of
imagery will rid them of all their ills invariably are disap pointed.
However, if your goal is short-term alleviation of pain, anxiety, or
stress-related symptoms, guided imagery, like hypnosis or meditation,
can serve a purpose.
MORE INFORMATION
International Imagery Association PO
Box 1046 Bronx, NY 10471 914-423-9200 (telephone)
The National Institute for the Clinical
Application of Behavioral Medicine
Box 577
46 King Hill Road
Storrs, CT 08268
203-429-2238 (telephone)
FURTHER READING
Collinge, William. Recovering From
Chronic Fatigue Syndrome. New York: The Body Press/Perigee Books,
1993 (includes many guided imagery techniques).
PART IV
COPING AND MANAGEMENT STRATEGIES
Coping with chronic illness presents
quite a challenge. A patient with diabetes, cancer, multiple
sclerosis, allergies, high blood pressure, or any other condition
that does not resolve itself has to make lifestyle ad justments. Some
illnesses require constant accommodation, while others may require
fewer changes in thinking and behavior. For example, for those with
high blood pressure, changes in medication and diet may be the only
adjustments the patient has to make. CFIDS, unfortunately, does not
fall into this category. Patients with CFIDS must make profound
adjust ments in the way they see themselves in the world and modify
the way they live accordingly.
The keys to coping with CFIDS consist
of first acknowledging the ill ness, and then adjusting to its
limitations. Acknowledging the illness must be the first step. If you
cannot accept that you have an illness, making the necessary
practical adjustments will be difficult indeed.
Acknowledgement and acceptance of CFIDS
are formidable tasks for most patients. The majority of people
diagnosed with CFIDS had been healthy until they contracted the
illness. According to statistics, most CFIDS patients are individuals
who had led normally productive lives pri or to becoming ill. As a
consequence, a diagnosis of CFIDS may be re ceived with as much shock
as relief. The physician who makes the diagno sis may be as likely to
hear, "This can't be happening to me!," as "Thank you
for clearing up the mystery." Even after the diagnosis is made,
the process of accepting it may take years.
Dean Anderson, a former skier and
manager of renewable energy pro jects in the United States, conveys
the process of acceptance eloquently:
In America we are taught from early childhood that succeeding in life is im portant and that striving is the key to achievement. I initially viewed the heal ing process as one in which I would succeed through determination and hard work.... I believe today that a certain kind of acceptance may be important to recovery. It is not a resignation to one's fate as a sick person. Rather, it is an acceptance of the reality of illness and of the need to live a different kind of life (CFIDS Chronicle, Winter 1996).
Acceptance of the reality of one's
illness implies that this new life is go ing to be quite different
from one's former life—a scary thought for most individuals. In
this new reality all the rules are different. They are also un known.
CFIDS, unlike better researched ailments, is new territory for
clin icians as well as patients, making expert advice difficult to
obtain. The rule book for living with CFIDS is yet to be written, for
even after the illness has been diagnosed and acknowledged, there
still remains the task of figuring out how to live with it.
Dr. Paul Cheney remarks that "patients
with this disease must, for many of them for the first time, place
limits on their workstyles and lifestyles. Proper limit-setting,
which is always individualized, is the key to improvement in this
syndrome" (CFIDS Chronicle, March 1991). This comment comes
after observation of thousands of patients, many of whom denied their
illness for extended periods before adjusting to its lim itations.
Dr. Cheney has seen not only the successes inherent in making these
adjustments, but the failures that resulted from attempting to ignore
them. But first, we must address the question of what is meant by
"proper limit-setting."
To set proper limits, we must start
with a basic awareness of how CFIDS affects the body and the mind.
CFIDS affects the ability to maintain homeostasis; that is, once the
illness is established, it alters the body's abil ity to adjust to
changes in the environment. For example, a person with CFIDS climbs a
set of stairs and feels like he or she has just climbed Mount
Everest. The out-of-breath, depleted feeling is the result of
sluggish heart rate, which, in CFIDS, does not respond in time to the
greater demands for oxygen required by exertion. As a result, not
enough oxygen is available, and a person with CFIDS feels winded
after even minimal strain. This type of delayed reaction also results
from temperature changes. People with CFIDS often remark that when
they become cold, "it takes forever to warm up." The same
is true for heat. Both temperature extremes produce symp toms as the
body attempts to adjust.
People with CFIDS often comment that
they are either "on" or "off." Once they stop,
they can't get going again; and once they start, they can't stop. In
The Clinical and Scientific Basis of ME/CFS, Dr. Byron Hyde, a
well-known clinician and researcher of myalgic encephalomyelitis (ME)
describes taking a walk with one of his patients. Dr. Hyde noticed
that when he stopped to look in a store window, his companion kept
going. When asked why, Dr. Hyde's companion replied that if he
stopped, he would never get going again! Once embarking on a project,
a task, or a plan, it is difficult to stop. Even when performing
formerly easy activities such as taking a walk or balancing a
checkbook, patients with CFIDS often pass the point of endurance, and
symptoms rapidly develop as a result.
Learning when we are "overdoing"
it is how we define our own partic ular limits. This takes awareness,
skill, and practice. Each person has limits that are defined by the
severity of the illness. For a person who is bed-bound, limits will
be very different from those of someone who is able to work. Patients
who are bedbound may find that extended telephone con versations,
standing in the shower, or tackling stressful tasks such as filling
out disability application forms produce exhaustion and a general
exacerbation of symptoms. These patients may find that sitting in a
plastic chair while showering, limiting conversations to 10 minutes,
and resting before and after doing necessary paperwork are ways to
conserve energy. A pa tient who is mildly ill and able to work may
wish to cut back on work hours, take naps, and forego activities that
place excessive or inflexible de mands on the body (such as team
sports or other activities that do not al low the participant to
"listen" to the body).
A former airline pilot refers to limit
setting as living in a box. "As long as I'm in the box, I do
alright. If I cross the margins of this box, I don't do very well"
(CFlDS Chronicle, March 1991). Defining the limits of your own
particular box is the key to developing good coping strategies.
Whatever produces symptoms on any particular day or at any particular
hour is where you should define your limits, not by an abstract
assessment of what you think you should be doing or a comparison with
former capacities. Dean Anderson sees this process as a form of
discipline:
It is the discipline to recognize and adhere to one's known limitations and to follow a strict regimen without lapsing. It is the discipline not to succumb to family or societal pressures to get back into the rat-race. It is the will to protect oneself, to not over-do and to find ways to be productive and find fulfillment under unfamiliar and difficult circumstances.
By setting limits and staying within
them, a person can learn to live with, and in spite of, CFIDS.
Chapters 7 through 9 discuss some of
the main pitfalls of CFIDS in three of the areas that require
considerable adjustment: coping with stress, the home environment,
and dietary limitations. Each offers a series of use ful coping
suggestions based on the experiences of patients with CFIDS and
related conditions, as well as those of the clinicians who specialize
in these areas.
Children with CFIDS present a special
challenge. Chapter 10 offers some suggestions for helping children
and their parents cope with the unique problems CFIDS creates for
children and their families.
CHAPTER 7
Stress Reduction and Elimination
One of the most common observations
made by CFIDS patients is that stressful situations become harder to
handle after becoming ill. Difficulty coping with stressful
situations may arise as one of the earliest symptoms of CFIDS and,
depending on the circumstances, can be one of its more problematic
aspects. Many people with CFIDS remark that a stressful job or home
environment during the early stages of the illness contributed to the
severity of the illness at onset; patients in the recovery phase
often note that emotional stress can bring on relapse; and those who
are severely ill experience profound exacerbation of symptoms when
placed in stressful situations or environments.
The relationship between stress and
relapse is striking enough to have garnered the attention of
psychologists and therapists who specialize in CFIDS. In 1994, Fred
Friedberg, a psychologist who has both researched and treated CFIDS
for the better part of his professional life, conducted an
investigation of relapse triggers in CFIDS. In a study group of 300
CFIDS patients, he found that in the majority, physical or emotional
stress was likely to trigger a relapse.
The controversy surrounding the
relationship between stress and exac erbation of CFIDS symptoms has
generated considerable discussion among researchers. The proposed
correlation between prolonged stress states and certain physiologic
problems has led a number of health care professionals to conclude
that prolonged stress can produce CFIDS. This, in essence, is the
origin of the misnomer "yuppie flu," a disease believed (by
journalists mostly) to result from the hectic lifestyle and inflated
ex pectations of young, upwardly mobile professionals. The treatment
rec ommendation for "yuppie flu" was to "take it
easy," with the assumption that once the stress was removed the
body would return to normal.
For patients with CFIDS, taking it
easy, while helpful, does not fix the problem. Inexperienced
physicians treating this puzzling illness, though quick to recommend
"taking a break," have been at a loss to understand why
their patients do not bounce back after a week or two of vacation. A
little distraction or a vacation does not bring a complete
restoration of body and mind because CFIDS is not a stress-induced
illness. Rather, it is a stress-sensitive illness; that is, stress
does not cause CFIDS, but it can pro long, or worsen, the disease
process (as with most illnesses). This is the real difficulty faced
by most patients with CFIDS.
The many negative consequences of
stressful situations make manag ing stress one of the most important
of the coping and lifestyle changes that a CFIDS patient can make.
Most clinicians recommend reducing or eliminating stress as part of
their general CFIDS treatment plan. Stress, however, is an
unavoidable fact of life. Whether it's losing a job or a loved one,
moving to a new home, being injured, having a baby, or becoming ill,
everyone experiences stress during the normal course of a lifetime.
It is difficult to plan for such life events, let alone avert them.
However, numer ous other stressful situations are predictable and can
be effectively con trolled. This chapter explains how stress control
can be accomplished with a minimal amount of effort, through methods
that have withstood the test of time.
THE STRESS RESPONSE: A BRIEF OVERVIEW
The study of the physiology of stress
did not gain significant attention in the medical world until Hans
Selye popularized the term in the 1930s. At that time, Selye, a young
endocrinologist studying ovarian hormones, discovered that when rats
were subjected to various environmental stress es (prolonged heat or
cold, rough handling, forced exercise), they devel oped peptic
ulcers, adrenal enlargement, and atrophy of the immune sys tem. Selye
concluded that the physiologic effects of prolonged stress cause
damage to the endocrine system and, consequently, the immune and
ner vous systems. He formalized this concept with the term "general
adapta tion syndrome." This syndrome is characterized initially
by enlargement of the adrenal glands, to compensate for an increased
stress response, fol lowed eventually by shrinking of adrenal tissue,
leading to an inability to handle stress.
Although Selye's perceptive conclusions
have since been modified (most researchers no longer believe that
prolonged stress causes adrenal gland atrophy), stress remains an
area of medical interest. Physicians are well aware that prolonged
stress can increase the risk of heart disease, hy pertension, chronic
headache, and numerous other conditions. Stress ex acerbates the
effects of many illnesses. The reason stress has such far-reaching
effects is that its mechanisms are complex, diffuse, and involve
nearly every system in the body. Stress affects the vascular system,
digestive system, endocrine system, central nervous system, and most
metabolic processes. It also affects the immune system in ways that
are sometimes subtle or contradictory, but which, nevertheless, have
profound conse quences.
What happens when a person experiences
stress such as news of illness in the family or experiences a near
accident on the highway? In response to emotional stresses, the
cortex (that part of the brain responsible for thinking and
reasoning) signals the limbic system (that part of the brain that
governs raw emotions) that something is wrong. The limbic system
recognizes a threat and produces the appropriate emotions of fear and
anxiety. The hypothalamus, located in the center of the limbic
system, sends chemical messages to the pituitary gland to speed
metabolism. The pituitary gland signals the adrenal glands to release
stress hormones, the catecholamines epinephrine (adrenaline) and
norepinephrine (noradrenaline), and the physiologic effects of stress
become manifest.
As stress hormones are released
throughout the system, certain changes occur that enable a person to
respond to a potentially dangerous situation. This is called the
"fight-or-flight" response. After the sympathetic nervous
system is aroused, the heart rate increases to supply extra blood to
major muscle groups. The heart may pound and the chest may feel
constricted as breathing control shifts from the diaphragm to the
upper chest. Cate cholamines as well as glucocorticoids (cortisol)
are released from the adre nal glands. These release stored glucose
from the liver, raising blood sugar levels and providing extra energy
to muscles. The additional norepinephrine in the brain increases
alertness and the ability to focus in order to make quick responses.
In addition to speeding up the
endocrine system, the stress response slows all competing systems to
maximize the amount of energy available for either fighting an enemy
or fleeing. Because digestive processes utilize a lot of blood and
energy, the appetite is suppressed, and digestion and sali vation are
slowed. During stressful events, a dry mouth and difficulty
swal lowing may be experienced, as well as "butterflies" in
the stomach. Pro duction of the reproductive hormones, estrogen and
testosterone, is inhib ited and metabolic processes involving cell
repair and growth are halted since these too are expensive in terms
of energy requirements. The net re sult of all these changes is that
the body is now at its maximum readiness to face danger.
What happens when the danger does not
require the numerous physi ologic changes necessary for the
fight-or-flight response? Say a person is driving a car during rush
hour, or dealing with a grouchy boss every day, or coping with a
difficult domestic situation. The final outcome could be a stress
response that goes awry, or what Hans Selye termed the "stress
syn drome," a set of physiologic responses that, if unchecked
over time, create havoc. The prolonged arousal of the sympathetic
nervous system can lead to high blood pressure, increased sensitivity
to environmental changes, and various gastrointestinal disorders.
Worse still, the continued release of stress hormones leads to
depression of the immune system, paving the way for opportunistic
infections and increasing susceptibility to a host of transmissible
diseases. Whereas short bursts of stress hormones can be beneficial
and, indeed, may be crucial in circumstances in which running from
danger will guarantee survival, the long-term results can be
disas trous. This is part of the problem patients with CFIDS
encounter when their stress response triggers symptoms.
THE STRESS RESPONSE IN CFIDS
In CFIDS, there is ample demonstration
that something is amiss in the processes through which the body
normally handles stress. In early 1990, Dr. Peter Behan, a
neurologist and professor at the Institute of Neuro logical Sciences
in Glasgow, Scotland, observed that patients with CFIDS seemed to
have abnormal endocrine responses. Although he found that many
symptoms, and even test results, were similar to those of Addison's
disease (a disorder in which low tolerance to heat, cold, and other
stressors results from decreased production of adrenal hormones), the
symptoms did not resolve with administration of adrenal hormones
(steroids), as they do with patients with Addison's disease. Dr.
Behan suggested that these abnormal adrenal responses indicate some
subtle problem in brain regulation.
The interesting puzzle of adrenal
function was considered again 2 years later when a research team
headed by Dr. Mark Demitrack published the results of a study
concerning the production and response to cortisol,
adrenocorticotropic hormone (ACTH), and corticotropin-releasing
hor mone (CRH) in 30 CFIDS patients and 72 healthy volunteers
(Journal of Clinical Endocrinology and Metabolism, 1991). It is the
orchestrated release of each of these hormones that provides adequate
responses to environ mental stress.
Cortisol, a glucocorticoid steroid
produced in the adrenal cortex, helps reduce inflammation, inhibits
immune system activity, and serves a variety of systemic functions,
including blood sugar regulation. The adrenal cor tex is stimulated
by the pituitary gland to release cortisol through pituitary ACTH.
The hypothalamus, by releasing CRH, stimulates the pituitary gland to
release ACTH. Primary adrenal insufficiency (such as Addison's
disease) reflects a defect in the adrenal gland's ability to respond
to ACTH, no matter how much ACTH is released. In secondary adrenal
insufficien cy, the problem lies not with the adrenal glands but with
the glands that control it—the pituitary and hypothalamus. Dr.
Demitrack and colleagues found that whereas the basal cortisol level
was lower in CFIDS patients than in healthy controls, responses to
low levels of ACTH were exaggerat ed. When higher levels of ACTH were
administered, the adrenal glands slowed production rather than
responding with a greater output of corti sol. In other words, the
adrenal glands overreacted to a mild stimulus and underreacted to a
greater stimulus. Because these findings are incompati ble with
primary adrenal insufficiency, Dr. Demitrack's team concluded that
CFIDS patients demonstrate secondary adrenal insufficiency, proba bly
originating in the hypothalamus.
These findings help explain why
patients with CFIDS respond poorly to stress. If the adrenal glands
overrespond to minor stresses, the cumula tive effects of daily
stress can be as difficult to endure physiologically as a major
stressful event. On the other hand, the blunted responses to ACTH
indicate that with major stress, the body is unable to adjust
accordingly. Both the constant state of arousal provoked by an
oversensitive stress re sponse and the underactive state of adrenal
competency produce symp toms. Therefore, the person with CFIDS may
feel worse under stress, which makes reduction of stress such an
integral part of the healing process.
COPING WITH STRESS
As stress accumulates, so does the
damage. A person who must endure the constant stress of a demanding
job or social life while ill with CFIDS may find it difficult to
recover. This does not prevent people from "carry ing on,"
or at least attempting to, even while quite ill. Letting go of
obliga tions, responsibilities, and activities that have provided the
framework for a productive life is a hard task, and one that many
CFIDS patients, partic ularly those with mild cases, would rather not
face. Those who are severely ill have no choice. In either case, some
adjustments are necessary because CFIDS rarely accommodates the
patient's former lifestyle.
Two important stress-reduction
strategies involve avoidance and mini mization. Very ill patients
probably should concentrate on avoiding as much stress as possible;
those who are moderately to mildly ill and who cannot escape stress
because of continuing work or family obligations should concentrate
on methods to minimize the effects of stress.
AVOIDANCE OF STRESS
Avoidance strategies are appropriate
for stress you can control, such as how much work you do and when.
The goal is to avoid putting yourself in stressful situations in
order to forestall a stress response. The longer you avoid the
cascade of stress hormone effects, the more time your body has to
rest and repair itself.
• Just say no. You can do it politely
if you wish, but when people call you on the telephone to participate
in surveys, organize block parties, contribute to clothing drives,
donate to worthy causes, subscribe to newspapers, or anything that
contributes to your overall stress load, you need to let them know
that you are not available. If it is some thing important, tell them
you will do it when you feel better. If it is a stranger calling,
insist that your name be removed from the calling list. Although it
may be difficult, it might also be wise to ask annoy ing or demanding
acquaintances not to call at all.
• Set limits. Make sure close friends
and family members know when not to disturb you (nap or rest times).
They should also be informed as to what you can and cannot do.
Sometimes it is hard for people who used to depend on you to realize
that you have limits now. Life will be easier for you, and for them,
if you let them know that you cannot lift or carry, go out dancing,
or anything else you formerly did but cannot do now. Be clear; set
some rules. You can set these rules without causing too much friction
by inviting people to help you with your recovery. For example, by
not calling after 8:00 pm, not ask ing you to do strenuous work, and
so on, your friends can help you get necessary rest.
- You don't have to finish what you start. This important piece of ad vice was given to a person with CFIDS by a therapist who worked with cancer patients. No doubt you were involved in a number of projects when you became ill. Let them go. Tell yourself that the world will just have to wait for you (it will, believe it or not). You can decide whether these projects merit finishing when you have recov ered. Meanwhile, have somebody pack up your work and store it away.
- Ask for help. For self-reliant individuals, asking for help feels like an admission of weakness. However, this is no time for false bravado. Ask your friends and family to help you. Pass on as many chores to them as you can. Friends can make appointments for you and then drive you there, pay your bills (you just need to sign the checks), clean your house, make your bed, take care of your children, cook, fend off salesmen, and perform numerous little daily chores that are a constant source of aggravation to you. If friends are not available, many churches have volunteers whose mission is to help shut-ins.
- Buy an answering machine. Answering machines were invented to record messages when you are out. For people with CFIDS, they are most useful for recording messages when you are in. They are a won derful aid for people who need a break from the demands of conver sation during "down time" or who need to go to bed early or sleep late but do not want to miss an important call. To screen calls, inves tigate the Caller ID option now offered by telephone companies. Caller ID displays the name and number of the person who is calling. The service costs about $6 a month. Many companies offer a free dis play box; if they do not, the display box costs about $30.
- Be selective about television programs. Television can be either a detriment to your health or a lifesaver, depending on how you use it. Sensationalist news programs, specials on serial killers, tense thrill ers, frenetic commercials, and the general rapid pace and constant screen changes may produce anxiety and tension in anyone who is ill. In general, it may be of greater benefit to watch light comedies, mys teries, nature programs, old movies, and programs designed to relax or inform rather than arouse.
Minimizing the Effects of Stress
Many stressful situations cannot be
avoided, such as the death of a family member, loss of a job or
spouse, and accidents. But even compara tively minor stresses such as
an unavoidable family visit or a medical ap pointment are guaranteed
to produce symptoms in patients with CFIDS. If avoiding the situation
is simply not possible, learn how to deal with the cascade effects
that a stress reaction produces, and how to stabilize your system as
soon as possible.
- Practice stress reduction exercises. Stress reduction exercises are in valuable to reduce the amount of stress you feel, calm adrenal re sponses, gain perspective, and give yourself a break from pressures and demands. Meditation, hypnosis, biofeedback, deep breathing, relaxation tapes, and yoga are all excellent methods for reducing stress. Remember, the mind-body connection goes two ways. When the body begins to churn out anxiety-producing hormones, the mind can limit the extent of its arousal. Many patients with CFIDS have observed that even during severe illness and relapses, stress reduction techniques are invaluable for maintaining a sense of calm.
- Take a break. The first thing to remember when confronting any stressful situation is that the natural tendency is to overdo. Try not to give in entirely to the impulse and plan rest time. Lie down whenever you have a chance, and try to take your mind off situations that can easily become all-encompassing. Reducing stimulation also helps: turn off the television or radio, tell your children to play outside, turn off the lights, and turn on the answering machine.
- Develop a routine. CFIDS produces internal chaos; therefore, any thing you can do to promote external order will be helpful. Following a routine can provide a sense of security and stability that can make stressful situations easier to handle. The routine can be simple. For people who are quite ill, a daily routine can consist of getting up, get ting dressed, washing, eating breakfast, and lying down again. It is not particularly important when or how you perform your routine. The idea is to develop a regular and predictable routine that helps structure your day.
- Find distractions. Mental distraction is important and should be pursued when outside demands become overwhelming. Mystery or romance novels, soap operas, knitting, watching fish swim in a tank ... in short, anything that takes your mind off your problems and puts the focus on something that requires no effort (and generates no anxiety) helps maintain tranquility.
- Search for humor. Norman Cousins, in his best-selling account of his own healing experience, Anatomy of an Illness, recommended humor as the best possible distraction. Cousins maintains that watching funny movies (and taking large doses of intravenous vitamin C) turned the course of ankylosing spondylitis (a disease in which the connective tissue of the spine disintegrates). Cousins asked himself, "If negative emotions produce negative chemical changes in the body, wouldn't the positive emotions produce positive chemical changes?" He observed that putting positive emotions to work was not as simple as "turning on a garden hose. But even a reasonable de gree of control over [the] emotions might have a salutary physiolog ic effect."
- Express yourself. When humor is not possible or appropriate, anoth er good way to deal with stressful situations is to share your thoughts and feelings with someone who understands. A sympathetic ear can help alleviate many of the helpless, trapped feelings that CFIDS pa tients have when cornered by a stressful event and can eliminate some of the endless mental rehashing that accompanies decision-making under stress. If another person is not available, writing let ters, keeping a journal, and drawing can be good forms of self-ex pression. Support groups, therapists experienced with CFIDS, and services such as the Center for Attitudinal Healing (check your phone directory for a local chapter) can also provide a healthy outlet for stress-related emotions. The best strategy is to find someone with CFIDS who has shared your experience. If you are housebound and no one is close by, a computer can provide access to the world. Many people find support through the Internet (CFIDS Bulletin Boards can be lifesavers).
- Herbs and supplements. A number of herbs can help mitigate the ef fects of stress hormones. Valerian root, a plant that produces a mild sedative effect, is perhaps the best known. Some people find it pro duces digestive tract distress, however. Skullcap is also calming and works well for the jitters and anxiety. Chamomile, hops, and passion flower are other calming herbs. Some of the essential oils, especially jasmine, clary sage, and lavender, can ease a stress reaction. Many people also find calcium, magnesium, and B vitamins soothing, but these are not generally useful in emergencies.
FURTHER READING
- Chrousos, George P, and Gold, Philip W. The Concepts of Stress and Stress System Disorders. Journal of the American Medical Association 267:1244-1252, 1992 (some what technical but thorough review of the physiologic and behavioral responses to stress).
- Cousins, Norman. Anatomy of an Illness. New York: Bantam Books, 1981.
- Friedberg, Fred. Coping With Chronic Fatigue Syndrome: Nine Things You Can Do. Oakland, Calif.: New Harbinger Publications, 1995 (discusses the effects of stress and offers relaxation exercises tailored to CFIDS).
- Sapolsky, Robert. Why Zebras Don't Get Ulcers: A Guide to Stress, Stress-Related Diseases, and Coping. New York: W.H. Freeman and Co., 1994 (provides a good overview of how stress works).
SEE
• Chapter 4: Benzodiazepines.
• Chapter 5: Herbs, Minerals,
Vitamins.
• Chapter 6: Acupuncture, Aroma
Therapy, Biofeedback, Hypnosis, Meditation.
CHAPTER 8
Cleaning Up: Eliminating Toxins in the
Home
Sensitivity to chemicals is common in
patients with CFIDS. In a 5-year study of 690 patients conducted by
Dr. Dedra Buchwald, more than 50% of those with CFIDS reported having
chemical sensitivities. Some clini cians claim that a majority of
CFIDS patients develop sensitivities to the chemicals encountered in
daily life, petrochemicals in particular. Car ex haust, diesel fumes,
glues, dyes, inks, and perfumes are among those most commonly
mentioned as producing headaches, dizziness, faintness, nau sea, and
malaise. Detergents, solvents, aerosol propellants, wood
preserva tives, and paints all contain petroleum derivatives, which,
while generally regarded as safe unless used in large amounts, can
provoke severe reactions in those with multiple chemical
sensitivities, even in minute quantities.
Even those who do not experience the
severe reactions typical of mul tiple chemical sensitivity should be
careful to avoid exposure to synthetic chemicals. The metabolic
disturbances that have been described by CFIDS researchers not only
produce cellular fatigue but also affect the body's abil ity to
remove toxins. Alpha ketoglutarate and glutathione, two of the most
powerful components of the body's detoxification system (see Chapter
5), are frequently found to be deficient in CFIDS. To complicate the
picture, many patients with CFIDS have suboptimal liver function (the
liver is the body's main detoxification organ). Through these
reductions in the effec tiveness in the body's detoxification system,
CFIDS can compromise the body's natural capacity to break down and
eliminate toxins.
By far, the most important coping
strategy for chemical sensitivities is avoidance. In a survey of
multiple chemical sensitivity (MCS) treatments conducted by a DePaul
University research team, all but one of the 304 re spondents
reported that "adopting a practice of avoiding exposures to
chemicals which could cause MCS reactions" was helpful. The
majority of the respondents reported that avoidance was of "enormous
help" (CFIDS Chronicle, Winter 1996). Direct exposure to toxins
can be significantly re duced by eliminating chemical offenders in
the home, the environment that poses the most risk to individuals who
are partially or completely housebound.
The following discussions on cleaners,
pesticides, and personal care products provide safe alternatives to
the numerous harmful ingredients found in many commercial products.
CLEANERS
Some of the most toxic chemicals we are
routinely exposed to are found in the kitchen and bathroom. Many of
us are unaware that house hold cleaners may contain substances that
are carcinogenic (cause cancer), mutagenic (cause gene mutations), or
teratogenic (cause birth defects). In addition, a number of the
chemicals added to general cleaners, spot re movers, metal polishes,
and other such products are listed by the Envi ronmental Protection
Agency (EPA) as "Priority" toxics. In other words, they are
powerful poisons. You may be unaware of the hazards associated with
these products because manufacturers are not legally required to
state their ingredients.
Fortunately, most cleaners commonly
found in American homes have safe, easy-to-use substitutes.
CHEMICALS COMMONLY FOUND IN HOUSEHOLD
CLEANING PRODUCTS
The following chemicals commonly found
in household cleaning products should be rigorously avoided:
- Ammonia. Ammonia is an eye and respiratory tract irritant that can cause con junctivitis, laryngitis, and burns. Because ammonia is toxic to the brain, breath ing ammonia fumes is dangerous. The combination of ammonia with chlorine produces a deadly gas. CFIDS patients need to be particularly careful to avoid ammonia because the anaerobic cell metabolism characteristic of CFIDS pro duces ammonia as a by-product. Products that contain ammonia include win dow cleaners, all-purpose cleaners, tub and tile cleaners, furniture and floor pol ish, and laundry detergents.
- Benzene. Benzene (carcinogen) attacks the central nervous system (CNS), blood, bone marrow, eyes, and respiratory tract. Benzene is found hi spot re movers and dishwashing detergents.
- Chlorine. Chlorine (potential carcinogen) causes erosion of mucous mem branes, skin eruptions, severe respiratory tract irritation, and vomiting. Those with cystitis should be especially cautious to avoid chlorine because it can irri tate the bladder. Chlorine is found in bleach, tub and tile cleaners, and spot re movers.
- Cresol. Cresol (corrosive) affects the CNS, liver, kidneys, lungs, pancreas, spleen, and can be absorbed through skin and lungs. Disinfectants, air freshen ers, and deodorizers can contain cresol.
- Detergents. Detergents can cause dermatitis, asthmatic episodes, flu-like symptoms, and severe eye damage. Tub and tile cleaners, bleach, dishwashing detergents, furniture and floor polish, oven cleaners, and rug and carpet clean ers contain detergents.
- Ethanol. Ethanol can cause CNS depression, nausea, and vomiting. Air fresh eners, tub and tile cleaners, dishwashing detergents, glass and window cleaners, laundry detergents, metal polishers, and rug and carpet cleaners contain ethanol.
- Formaldehyde. Formaldehyde (mutagen and likely carcinogen) can cause res piratory problems, headaches, rashes, tiredness, and insomnia. Formaldehyde is found in air fresheners, disinfectants, mold and mildew cleaners, and water-resistant paper (such as paper towels, napkins, and toilet tissue).
- Methylene chloride. Methylene chloride (carcinogen) has been known to cause cardiac arrest. Shoe polish and paint strippers contain methylene chloride.
- Naphthalene. Naphthalene (carcinogen) can cause skin irritation, headache, and confusion. It attacks the kidneys, liver, red blood cells, and CNS. Air fresh eners and deodorizers, glass and window cleaners, laundry detergents, rug and carpet cleaners, and spot removers contain naphthalene.
- Petroleum distillates. Petroleum distillates (carcinogens and poisons) can be found in drain cleaners, furniture and floor polish, glass and window cleaners, and metal polishes.
- Phenols. Phenols (carcinogens) cause skin eruptions, burning, numbness, gan grene, vomiting, and convulsions. Air fresheners and deodorizers, disinfec tants, laundry detergents, and mold and mildew cleaners can contain phenols.
- Toluene. Toluene (carcinogen) causes nervous system changes, irritability, de pression, and damage to the liver and kidneys. Toluene is found in spot re movers.
- Xylene. Xylene (hazardous waste) causes nausea, cough, tinnitus, headache, mental confusion, and eye damage. Xylene can be found in air fresheners, spray paint, and shoe polish.
SAFE CLEANERS FOR SPECIFIC CIRCUMSTANCES
The five nontoxic items needed to keep
your home and belongings clean are salt, baking soda, soap, white
vinegar, and borax. These can be found in most grocery stores and
supermarkets and are surprisingly effec tive, safe, and easy to use.
AIR FRESHENERS
Note: Commercial air fresheners do not
"freshen," but merely mask odors.
• Carpet odors — Sprinkle baking
soda liberally (several pounds per room), and vacuum.
• Toilet bowls — Clean with borax
to eliminate odors as well as disin fect.
• Garbage pails — Sprinkle the
bottom with baking soda. Rinse with borax and water to disinfect.
DISHWASHING SOAP. Use liquid soap to
wash, and vinegar to cut grease. For machines, buy biodegradable
dishwasher soap.
DISINFECTANTS. Borax in water is a
great disinfectant. In fact, hospi tals that use it have discovered
that borax disinfects as well as any commer cial antiseptic product.
A machine-washable chemical-free cloth is avail able that kills
bacteria on contact (Real Goods; 800-762-7325).
DRAIN CLEANERS. Pour a mixture of 1/2
cup salt and 1/2 cup baking soda, followed by a quart of boiling
water, in blocked drains. If that doesn't work, call a plumber.
LAUNDRY DETERGENTS. Presoak laundry
with soap and borax for 1 hour before washing. For the
ultrasensitive, Laundry Disks, a Japa nese product that eliminates
the need for soap or detergents, is available through mail-order
catalogs.
METAL POLISHERS
• Copper and brass — Rub with a
mixture of salt and vinegar (or lemon juice).
• Chrome — Rub with lemon peel,
rinse, and polish with a soft cloth.
• Aluminum — Soak in lemon juice or
vinegar and boiling water.
• Gold — Wash in warm, soapy water,
dry, and polish with a clean cloth.
• Silver — Soak in salted water in
an aluminum pot (a nonaluminum pot with aluminum foil can be
substituted). Or boil for 3 minutes in 1 quart of water with 1
tablespoon each of salt and baking soda.
OVEN CLEANER. Dissolve 2 tablespoons of
liquid soap (not detergent) and 2 teaspoons of borax in enough warm
water to fill a spray bottle. Spray the sides of the oven and leave
for 20 minutes. Scrub with baking soda. Pumice can be used for hard,
baked-on spills.
RUG CLEANERS. Mix two parts cornmeal
and one part borax. Sprinkle liberally over carpet and let stand for
1 hour. Vacuum.
SCOURING POWDER. Baking soda is a mild
abrasive and can be used for any cleaning job that requires scouring.
SHOE POLISH. Clean shoes with a damp
cloth. Apply walnut oil and buff with a chamois cloth.
SPOT REMOVER
- Blood — Soak cotton items in cold water. Blot spots on wool with hy drogen peroxide.
- Coffee — Mix egg yolk with water and rub on stain.
- Chewing gum — Rub with ice.
- Fruit and wine — Pour salt or hot water on the stain; soak in milk.
- Grease — Pour boiling water over stain and sprinkle baking soda on it.
- Ink — Soak in milk.
- Mildew — Pour soap and salt on spots and place in sunlight. Repeat if necessary.
- Rust — Saturate with lemon juice, rub with salt, then place in direct sunlight until dry.
TILE CLEANERS. Use baking soda on a
sponge as an abrasive. Use bo rax and water to disinfect. For mold,
sponge on a mixture of vinegar and borax.
WINDOW CLEANER. Make a mixture of
vinegar or cornstarch (about 1 tablespoon of either) and 1 quart of
water and spray or wipe on windows with a clean sponge. Dry with
newspaper or a clean lint-free cloth.
WOOD POLISH. For wood furniture or
floors, make a mixture of three parts olive oil and one part lemon
juice or vinegar and apply with a soft cloth.
If you are unable to make your own
mixtures, it may be more conve nient to purchase nontoxic cleaners.
Many brands are available from mail order suppliers (see Appendix
D).
PESTICIDES
Pesticides such as Raid and other
vermin destroyers are often found in supermarkets in the same aisles
as cleaning supplies. Their proximity to sponges and dishwashing
liquid may lead the shopper to think they are no more toxic than
soap. Yet household pesticides, because of the frequency with which
they are used, combined with the fact that they are used in doors,
where their fumes will be inhaled, are more a risk than the 1.67
bil lion pounds of chemicals U.S. farmers use on crops every year.
Exposure to household pesticides is not
only dangerous, it is wide spread. According to figures compiled by
the Pesticide Action Network, some 69 million American households
used pesticides in 1995. That means that nearly every man, woman, and
child in this country has been exposed to pesticides in their homes.
What is so dangerous about pesticides?
Most pesticides work by direct ly interfering with the insect nervous
system. They either prevent a key neurotransmitter from being broken
down, producing a state of terminal excitement in the nervous system
synapses, or they prevent the neuro transmitter from operating by
binding to its receptor sites so that the ner vous system ceases to
function. In the first instance, the insect dies of con vulsions. In
the second, the insect dies of paralysis. In both cases the
prin cipal mode of action is the disruption of the neurotransmitter
acetylcholine.
Acetylcholine is also one of the most
important neurotransmitters found in humans. One of its major
functions is to connect muscles to nerves, allowing nervous system
control of movement. Acetylcholine also affects memory. (Patients
with Alzheimer's disease demonstrate a deficit of this important
neurotransmitter.) Human exposure to neurotoxins that disrupt
acetylcholine function (such as the nerve gas poisoning in Gulf War
veterans) produces myriad harmful effects, including loss of
appetite, urinary frequency, sweating, excess salivation, diarrhea,
jitteriness, emo tional instability, combativeness, headache, and
mental confusion.
Patients with CFIDS should make a
concerted effort to avoid pesti cides. CFIDS produces disruption of
normal nervous system activity, which itself can affect the
cholinergic (acetylcholine) pathways in the brain. At least one
researcher, Dr. E. Snorrason of University Hospital in Reykjavik,
Iceland, believes that upsets in the cholinergic system play a
pri mary role in the development of CFIDS symptoms. Further upsets in
brain function, through exposure to neurotoxins in pesticides and
other chemicals, only worsen the condition.
SAFE PESTICIDES FOR SPECIFIC INSECTS
ANTS. Pour a thin line of talcum powder
at the point of entry. Wipe the surrounding area with a wet sponge to
erase the ant trail.
BEETLES. Place a bay leaf in flour
containers. Keep food containers tightly closed.
COCKROACHES. Mix sugar and boric acid
and sprinkle on a piece of cardboard around garbage cans or wherever
roaches gather. Boric acid causes gases to build up in the roaches'
bodies so that they explode.
FLIES. Hang sticky paper made with
honey on cardboard. Pierce and hang orange peels (flies do not like
citric acid).
HEAD LICE. Coconut oil contains dodecyl
alcohol, which is lethal to lice. Wash hair with a bar soap or
shampoo that contains coconut oil or co conut oil derivatives
(cocamide, sodium lauryl sulfate). Leave shampoo in hair for 30
minutes. Rinse with a half-and-half mixture of white vinegar and
water to loosen egg cases. Comb hair thoroughly, one section at a
time, with a metal lice comb to remove nits (allow 2 hours for this
process). Repeat in 10 days.
MOTHS. Hang sachets of rosemary and
other strong-smelling herbs in closets or place cedar chips in
drawers. The aromatic oils in cedar kill moth larvae. Avoid cedar if
you have allergies.
TERMITES. Remove rotting wood from
around property. Kill termites with a heat lamp at 140° F.
TICKS AND FLEAS. Wash and dry animal.
Spray with rosemary tea to deter insects. Garlic and brewer's yeast
added to pet food also help repel fleas.
GENERAL INSECT REPELLENT. Pennyroyal
tea sprayed on skin and clothes will deter most biting and stinging
insects.
GARDEN AND PLANT PESTS. Numerous
techniques can safely elimi nate garden pests, including hosing down
plants to prevent spider mites, planting chives around plants to
discourage aphids, and purchasing bene ficial predators such as
ladybugs. Hot-pepper or soap spray will discourage most insects. For
specific problems, consult an organic gardening manual (available in
most libraries).
PERSONAL CARE PRODUCTS
According to the Food and Drug
Administration (FDA), a cosmetic in cludes anything that can be
"rubbed, poured, sprinkled or sprayed on ... the human body ...
for cleansing, beautifying, promoting attractiveness, or altering the
body's appearance without affecting the body's structure or
functions." Any cosmetic packaged after 1977 must include a list
of ingre dients on the label. However, there are some exceptions,
notably deodor ant soaps, hair dyes, fluoridated toothpastes,
antiperspirants, sunscreens, and antidandruff shampoos. In addition,
a number of products contain ingredients that do not have to be
specifically detailed (such as the 4000 in gredients that make up
"fragrances"). Anyone with chemical sensitivities should be
aware that the petrochemical components of cosmetics and per sonal
health and hygiene products can provoke severe reactions because they
are absorbed directly through the skin.
Some of the more noxious ingredients of
cosmetic and health products include aerosol propellants (propane,
methylene chloride), BHA/BHT (butylated hydroxyanisole/butylated
hydroxytoluene), BNPD (reacts with amines on the skin to form
carcinogenic nitrosamines), ammonia, coal tar colors, cresol,
detergents, ethanol, formaldehyde, hexane, lead, mineral oil (blocks
vitamin absorption), paraffin, phenol, plastics, quaternium 15
(re leases formaldehyde), toluene, and xylene. Products that contain
any of these, are scented, are applied by means of aerosols, or are
artificially col ored should be avoided by CFIDS patients.
Safe Personal Care Products
Many alternatives to commercial
personal care products can be pur chased from health food and vitamin
stores, specialty shops, mail-order suppliers, and buyers' clubs.
Following are suggestions for some common ly used personal care
products.
DEODORANTS. Commercial deodorants can
contain triclosan, a liver toxin. Numerous nontoxic alternatives
(such as crystals and plant-based products such as Weleda and Desert
Essence) are available from health food stores. The very sensitive
can apply baking soda to absorb odors and moisture after bathing.
HAIR DYES. Commercial hair dyes are
completely exempt from regula tion and, as a result, contain numerous
toxins. If you color your hair, use henna for red or walnut hull
infusion for brown (available in health food stores).
LOTIONS AND HAND CREAMS. Commercial
lotions may contain ethanol, phenol, and mineral oil (which is more
toxic when absorbed through the skin than when inhaled). Pure
vegetable oils (olive, sesame, canola) or vegetable oil-based
products such as those made by Nature's Gate can be substituted.
MOUTH WASH. After brushing and flossing
teeth, rinse mouth with baking soda and water to eliminate odor and
reduce plaque. For those with gingivitis, an occasional rinse with
hydrogen peroxide solution (10% per oxide, 90% water) will disinfect
the mouth. Be careful not to overdo, be cause peroxide also destroys
beneficial mouth flora.
SHAMPOO. Many shampoos are relatively
free of unnecessary addi tives (Dr. Bronner's, Raintree, and Kiss My
Face, for example, all make gen tle, fragrance-free shampoos). Or, a
shampoo can be made by blending one part olive oil with four parts
liquid castile soap and then adding two parts distilled water. Use
this mixture like concentrated shampoo. To treat dandruff, use pure
baking soda. (Dandruff shampoos contain selenium sulfide, a liver
toxin.)
SHAVING CREAM. Use petrochemical-free
soap or shaving cream such as Tom's or The Body Shop.
SOAP. Numerous soaps are made from
vegetable oils, including Kiss My Face, The Body Shop, Conti Castile,
Pears Transparent Soap, and The Soap Opera. Use scentless varieties.
TOOTHPASTE. You can make toothpaste
with salt, baking soda, and a drop of mint essential oil. Tom's,
Desert Essence, or other pure toothpaste brands can also be
purchased. Most commercial toothpastes contain sac charin, ethanol,
mineral oil, or formaldehyde.
OTHER HOUSEHOLD TOXINS
AIR QUALITY
According to the Environmental
Protection Agency (EPA), some 50% of all illnesses can be caused or
aggravated by polluted indoor air. Viruses, mold, pollen, bacteria,
dust mites, and other contaminants can build up in air conditioning
and duct systems, creating health problems in otherwise healthy
individuals. For CFIDS patients air quality is of particular concern,
especially for those with allergies. Recirculating dust and pollens
can exac erbate allergic reactions, which in turn may lead to
relapses. Even if you do not have allergies, it is important to make
sure that the air you breathe is pure and free from common household
contaminants such as carbon monoxide, dust, mold, and other
irritants. Following are some steps to take to make sure your indoor
air is pure.
- Have gas appliances and gas lines checked for leaks. In most cases your gas company will perform this service free of charge. Make sure gas appliances are properly vented. If you have the choice, opt for electrical appliances. They burn cleaner than gas and leave less residue in the air.
- If you suspect your duct system harbors molds, have it cleaned out. Many heating and air conditioning companies will clean and purify ducts, grills, blowers, and humidifiers for a fee.
- If you have allergies, purchase a high-efficiency particle air (HEPA) filter.
- An ultraviolet light, which kills bacteria and viruses, can be installed in the cold air return. These can be purchased at some health food stores. Be sure to install the light where it cannot be seen because ul traviolet light damages the eyes.
The numerous neurotoxins, fumes,
corrosives, carcinogens, and systemic irritants we are constantly
exposed to are not good for anyone. People with illnesses, and in
particular those with chemical sensitivities, should make every
effort to avoid these ubiquitous poisons to diminish their harmful
effects.
WATER QUALITY
The quality of the water we drink has a
profound effect on our well-be ing because water is needed for every
metabolic process in the body. Our drinking water, however, much like
the air we breathe, contains numerous contaminants that can have
adverse effects on health. The EPA has identi fied more than 700
pollutants in drinking water, ranging from heavy met als that leech
from old plumbing to chemical runoff from industry and agriculture.
Many CFIDS patients find that with the advent of the illness they
become more sensitive to the pollutants and additives commonly found
in drinking water, particularly to chlorine, which is added as a
dis infectant to most municipal drinking water supplies. Fortunately,
a num ber of affordable water purification systems are available to
help alleviate this problem (see Appendix D).
ACTIVATED-CARBON FILTERS. These filters
remove asbestos, bacteria, viruses, chlorine, heavy metals, and most
organic compounds. The filter needs to be changed at least every 6
months to be effective. Many counter-top and under-the-sink models
are available, as well as screw-on niters for shower heads.
Manufacturers generally recommend using cold water from municipal
sources for drinking water models. Granulated carbon is prefer able
to powdered carbon.
REVERSE-OSMOSIS FILTERS. Reverse
osmosis purifies water by pass ing it through a fine membrane to
remove asbestos, some bacteria and viruses, fluoride, heavy metals,
minerals, nitrites, salts, and some organic compounds. Chlorine,
however, is not removed. Reverse-osmosis niters are best used in
conjunction with carbon filters. Filters should be changed every 2
years or as suggested by the manufacturer.
WATER DISTILLATION. Water is boiled and
the steam is condensed to produce water free of most contaminants.
Boiling effectively kills bacteria and viruses, and the evaporation
process removes heavy metals and trace minerals that are too heavy to
rise with the vapor. This method does not remove chlorine.
The best type of filter to use depends
in part on the quality of the wa ter. Before choosing a water
purification system, it is wise to obtain a water analysis, which
will indicate the hardness of the water, total dissolved solids, and
pH level. If you cannot purchase a water filter, you can buy bot tled
water. The drawback to bottled water is that unless the company will
provide a water analysis, you cannot be sure that the water is pure.
In addi tion, a number of people cannot tolerate water bottled in
plastic contain ers. Glass containers, while more difficult to find,
do not leech by-products into the water. The following are some home
methods to reduce contami nants in tap water.
- Boil water for 10 minutes to kill bacteria and viruses and to remove most chlorine, chlorine by-products, and pesticides.
- Add a little vinegar, lemon juice, or vitamin C. The acid in a small amount of vitamin C or white vinegar neutralizes the effects of chlo rine.
ORGANIZATIONS
American Academy of Environmental
Medicine PO Box 16106 Denver, CO 303-622-9755 (telephone)
Chemical Injury Information Network PO
Box 301
White Sulphur Springs, MD 59645-0301
406-547-2255 (telephone)
Environmental Health Association
1800 S. Robertson Blvd.
Suite 380
Los Angeles, CA 90035
301-837-2048 (telephone)
Environmental Health Network PO Box
1155 Larkspur, CA 94977 415-541-5075 (telephone)
Human Ecology Action League PO Box
49126 Atlanta, GA 30359 404-248-1898 (telephone)
Multiple Chemical Sensitivities
Referral and Resources 2326 Pickwick Road Baltimore, MD 21207
410-448-3319 (telephone)
National Center for Environmental
Health Strategies
1100 Rural Avenue Voorhees, NJ 08043
609-429-5358 (telephone)
National Foundation of Chemical
Hypersensitivities and Allergies
PO Box 222
Ophelia, VA 22530
804-453-7538 (telephone) or
517-697-3989 (telephone)
WEBSITES
Colorado Health Net: Multiple Chemical
Sensitivities http://bcn.boulder.co.us/health/chn/site/idx—mcs.html
http://rohan.sdsu.edu/staff/hamilto/mcs
FURTHER READING
- Dadd, Debra Lynn. Nontoxic and Natural. Los Angeles: Jeremy P. Tarcher, 1984 (an easy-to-use reference and guide to safe alternatives for 1200 of the most commonly used household products; also includes a mail-order source list for nontoxic products)
- Dadd, Debra Lynn. The Nontoxic Home. Los Angeles: Jeremy P. Tarcher, 1986 (offers an in-depth look at sources of toxins in the home and offers a broader range of solutions).
- Wittenburg, Janice Strubbe. The Rebellious Body: Reclaim Your Life From Environmental Illness or Chronic Fatigue Syndrome. New York: Insight Books, 1997 (a valuable refer ence guide providing medical explanations, diet recommendations, coping tips, and information on supplements).
SEE
- Chapter 3: Allergies (chemical sensitivities) for further discussion of the role of chemical sensitivities in CFIDS and for treatment suggestions.
- Appendix D for a list of mail-order suppliers of nontoxic products.
CHAPTER 9
Food and Diet
Diet is one of the most obvious places
to begin making the necessary accommodations to the demands of a
chronic illness. However, it is not al ways the easiest. For many
people with CFIDS, choosing a diet poses nu merous difficulties.
About one third of the CFIDS population have recur ring or chronic
gastrointestinal symptoms caused by food sensitivities such as
heartburn, gas, nausea, diarrhea, constipation, and cramps. Others
may have concurrent problems such as interstitial cystitis or
migraine headaches that require certain dietary constraints. The
remaining group, although perhaps free from gastrointestinal
symptoms, food sensitivities, or concurrent conditions, still have
the demands of a chronic illness to at tend to. Although free from
the necessity of maintaining strict dietary re strictions, they need
to maintain a diet as wholesome as possible, if only to address the
complicated problem of how best to help an ailing body heal.
The disruptions in cell metabolism,
immune function, and endocrine system brought on by CFIDS can lead to
numerous nutritional deficien cies, including decreased
concentrations of zinc, potassium, carnitine, and B and C vitamins.
These deficiencies, in and of themselves, can decrease the degree to
which the body can absorb and make use of nutrients. Problems caused
by disruptions in cell metabolism, malabsorption, and food
sensitivities make it all the more important for CFIDS patients to
maintain an appropriate diet; that is, following a diet that will
maximize the nutrients available to a healing body while minimizing
any harmful ef fects that specific foods or food additives may
produce.
DEVISING A CFIDS DIET
"What should I eat?" is a
question asked by most CFIDS patients, and, although the question
makes a great deal of practical sense, it is not easily answered.
Diet is an important consideration for anyone who is ill; in the case
of CFIDS, however, what constitutes an appropriate diet? Should we
follow a special regimen (macrobiotic, vegetarian, wheat grass, raw,
ash-free, fat-free, carbohydrate-free, yeast-free) or can we just
throw caution to the wind and eat what we please since we feel so bad
anyway?
These questions have no simple answers.
CFIDS patients react to foods with the same frustrating inconsistency
as they do to medications. Whereas one person can maintain a
vegetarian diet, another needs to eat meat at every meal. (Such was
the case of one ardent vegetarian who found that after contracting
CFIDS she could not get through a day without eat ing several
portions of red meat.) Some feel better after cutting back on
carbohydrates and eliminating fruit. Because each person's digestive
sys tem reflects one's own unique case of CFIDS (complicated by
allergies, food sensitivities, bladder sensitivities, blood sugar
problems), there can be no single "best diet."
CFIDS patients need to watch their
diet, but not necessarily severely re strict their food choices. Many
people with CFIDS have experienced set backs, including severe weight
loss, increased fatigue, and pain, from adopting highly restrictive
diets, especially diets that eliminate many of the important food
groups.
As not everyone needs the same foods,
finding an appropriate diet may at first create some frustration or
discouragement. Finding a good diet, however, even in the most
difficult circumstances, is not impossible. Most people proceed by
trial and error, noting which foods make them feel bet ter or worse.
The following are some simple guidelines that may be helpful in
devising your particular CFIDS diet.
• Listen to your body. This is,
perhaps, the most important rule for people with CFIDS. If a
particular food item makes you feel worse, don't eat it, even if it
is supposed to be "good" for you. Even "good"
foods, such as salad, broccoli, nuts, fruit, and spinach can be
irritat ing if you cannot digest them. Your body will, in most cases,
give you clear signs when it can't. Nausea, insomnia, headaches,
anxiety, gas, diarrhea, and constipation are some of the side effects
produced by the digestive system when it manufactures ammonia,
indole, and greenhouse gases from food instead of usable vitamins,
minerals, and proteins.
• Eat sensibly. Patients with CFIDS
need to consume a healthy, bal anced supply of nutrients to provide
the basic raw materials required to make them well. For those whose
diet is not already restricted by food sensitivities, maintaining a
broad, varied diet will provide the best basis for improvement.
• Eat simply. Try not to mix a lot of
different ingredients. This will help with digestion and make it
easier to identify food reactions. Use plain vegetables, starches,
and proteins.
• Eat wholesome foods. If possible,
eat whole-grain foods for complex carbohydrates, vegetables for
vitamins and minerals, and low-fat meat products for proteins. Avoid
all processed foods, which contain artificial additives (even when
advertised as "natural"). Be sure to check labels. Buy
organic foods, whenever possible, to eliminate the extra burden of
pesticides, hormones, and antibiotics abundant in most commercial
produce and meats.
FOODS TO AVOID
Some foods should be avoided because in
most patients they will exac erbate symptoms. The following are the
five foods most commonly impli cated by CFIDS clinicians and
patients.
1. STIMULANTS (coffee, tea, caffeinated
sodas, cola, some herb teas, including ginseng, lomatium, mate, and
ma huang). When ener gy levels are low, it is tempting to resort to
"pick-me-ups" such as coffee, cola, or strong tea to boost
energy. For most people, stimulants provide a temporary boost,
enabling them to get through a hard day or a crisis. However, because
stimulants cause the adrenal glands to work harder, tak ing them will
eventually result in a "crash." Often the long-term result
of a short-term energy boost is simply not worth it. Caffeine also
worsens on going insomnia, leading to even greater exhaustion. Some
nutritional sup plements that provide good substitutes for stimulants
are malic acid (with ATP), alpha ketoglutarate, CoQ10, vitamin B12,
royal jelly, blue-green al gae, DHEA, and NADH (see Chapter 3:
Fatigue for further suggestions).
2. ALCOHOL (wine, beer, hard liquor).
Alcohol intolerance is one of the most common CFIDS symptoms. Most
people with CFIDS find out rather early in the illness that even a
small glass of beer or wine makes them quite ill. The reasons for
alcohol intolerance are twofold: (1) alcohol acts on the central
nervous system, which in CFIDS patients can be hyper-reactive; and
(2) alcohol is toxic to the liver. Because many CFIDS patients have
suboptimal liver function, ingestion of alcohol should be avoided.
Those who are especially sensitive should also avoid herbal tinctures
and alcohol-based mouthwashes.
3. SWEETENERS (sugar, corn syrup,
sucrose, glucose, dextrose, brown sugar, fructose, aspartame,
saccharin). Many people with CFIDS crave sweets, especially when
blood sugar levels fall in the late after noon and before the onset
of menstruation. Most researchers agree that this is due to faulty
carbohydrate metabolism and subsequent low levels of ATP and blood
glucose. Eating foods loaded with simple carbohydrates (sugars),
however, only exacerbates the problem.
Blood sugar levels rise after the
consumption of carbohydrates. This leads to an increased production
of serotonin (the neurotransmitter re sponsible for inducing a state
of relaxation and sleep). In CFIDS patients, however, the release of
serotonin can create unwanted effects. Serotonin inhibits the release
of cortisol, the hormone responsible for reducing in flammation and
releasing stored glycogen from the liver. Thus, when cor tisol is
inhibited, inflammation (a perennial problem in CFIDS) increases. The
problem becomes even more complicated when carbohydrate metab olism
is disturbed (as is the case in CFIDS) and not enough glucose is
formed from carbohydrates to maintain blood sugar levels. In that
case, blood sugar levels plummet after the temporary elevation caused
by the flood of sugar. The result is physical and mental exhaustion.
A young man with CFIDS from New Jersey
describes this problem suc cinctly: "I feel hung over when I've
eaten a lot of sugar. I can't even get up the next day. I've been
following a low-carb, no sugar, high-protein diet for a couple of
years, and realize I must stay on it. For me, no sugar equals life.
I'm much better on this diet."
If you have acute candidiasis or
hypoglycemia, dried fruits (dates con tain an enormous amount of
sucrose) and starchy vegetables should also be avoided, particularly
in the evening because they may worsen insom nia. Avoid aspartame
(Nutra-Sweet), which breaks down into wood alco hol in the blood
stream and can cause serious metabolic problems in peo ple with
CFIDS.
4. ANIMAL FATS. Fat is the best source
of energy, better than carbohy drates, sugars, or proteins. To serve
as an energy source, fat must be me tabolized, then transported into
cells for use by the mitochondria. Patients with CFIDS commonly have
deficits in fat metabolism. Liver and gallbladder function (both
organs are vital for breaking down fats) is frequently impaired. Even
more significant, CFIDS patients have been shown to have deficiencies
in the transport molecule acylcarnitine, which enables the body to
use fats at the cellular level. Use fats in moderation. Avoid rich
foods and sauces. If you eat meat, use very lean cuts and remove the
skin from chicken and other fowl. Of the fats, butter and light, pure
vegetable oils such as canola or olive oil seem to be best for CFIDS
patients. It is worth the effort to experiment. Buy a high-quality
brand; cheap oils be come rancid quickly.
5. ADDITIVES (artificial colors,
artificial flavors, preservatives, MSG). Sensitivities to
petrochemicals and their by-products are common in CFIDS patients.
People may not realize that many food additives are de rived from
petrochemicals. Allergic reactions such as inflammation, itch ing,
pain, insomnia, depression, hyperactivity, and headache caused by
common food additives can be severe and can even contribute to CFIDS
relapses. Although all synthetic food additives should be avoided,
the fol lowing are particularly problematic for patients with CFIDS.
• Artificial colorings (lake colors,
tartrazine, AZO dyes, FD&C, or "coal tar colors") —
These are derived from petroleum, and although de scribed as "food"
colors, are primarily used to dye cloth. The toxic compounds in FD&C
colorings have been linked to cancer, bladder polyps, adrenal damage,
impairment of thyroid function, and kidney lesions. Artificial
colorings also block the enzyme phenolsulphotransferase-P (PST-P).
PST-P deficiency has been noted in hyperac tive children and in
patients with migraine headaches.
• MSG and MSG-containing substances
(monosodium glutamate, monopotassium glutamate, hydrolized vegetable
protein [HVP], hydrolized plant protein, sodium caseinate, calcium
casemate, and Fla vorings) — Glutamic acid, from which MSG is
derived, is an amino acid found in most plant and animal proteins.
When the glutamic acid is separated from the proteins that would
normally inhibit or slow its absorption, the blood stream is flooded.
Since glutamic acid acts as an excitatory neurotransmitter, a number
of neurologic and allergy-type symptoms can result, including
sneezing, itching, hives, rashes, headache, asthma attacks, acid
stomach, excessive thirst, bloating, restlessness, balance problems,
chest pain, joint pain, and severe depression. CFIDS patients have
reported all of these symp toms, and others. Read product labels for
MSG before buying. In restaurants, ask the chef to prepare your food
without MSG.
It is a good idea, in general, to read
labels before you buy. Many foods la beled "natural"
contain numerous additives that can cause reactions in people with
sensitivities. Prepared foods are notorious in this regard, so try to
stick to simple foods with ingredients you can pronounce.
FOOD SENSITIVITIES
Sensitivities and allergies to various
foods are common enough in CFIDS to merit special mention. Food
sensitivities, while not as dangerous as allergies, can produce such
a wide array of symptoms, including rest lessness, anxiety, panic
attacks, migraine, joint pain, insomnia, nightmares, rashes, and
malaise, that they might not be recognized as such in a person with
the usual broad spectrum of CFIDS symptoms. To complicate mat ters,
food sensitivities are rarely detected on standard allergy tests. For
that reason, many patients may be unaware that some of the worst
symptoms they experience may be due to the food they are eating,
especially since sensitivities tend to fluctuate over time (true food
allergies are lifelong).
Since awareness that diet may be
leading to symptoms may come as a surprise to a person who has not
had any previous experience with food intolerance or allergies, the
initial search to find well-tolerated foods may, at first, seem
daunting. For a subset of patients, reactions may be so severe that
food intake is drastically restricted. One person described herself
as "living on Cheerios" for the first few months of her
illness. Another re ported that the only food that did not create
symptoms was celery. People with extreme sensitivities may have to
resort to heroic measures such as in travenous feeding to get some
nutrition into their bodies. If you are among the very sensitive,
food supplementation will be a necessity.
For most CFIDS patients with
sensitivities, however, food intake need not be so restricted. A
number of CFIDS physicians have noted that elimi nating a few
offending foods from the diet can improve symptoms dra matically. Dr.
Robert H. Loblay and Dr. Anne R. Swain, two clinicians working on
CFIDS research in Australia, discovered that about one third of their
patients considered themselves "much better" after
eliminating of fending foods from their diets. These patients
reported significant im provement in specific symptoms such as
headache, muscle pain, malaise, depression, and irritability after
adopting a modified diet. Treatment sur veys conducted by a DePaul
University research team and by Dr. Fred Friedberg also confirm that
about one third of patients who adopt anti-allergy diets experience
moderate to major improvement in CFIDS symp toms.
The task of identifying offending foods
is made easier by the fact that most food sensitivities tend to fall
into groups that, among CFIDS pa tients, can be fairly predictable.
The following list, compiled with the help of numerous individuals
with CFIDS, may help you to identify the most common
symptom-producing foods.
NIGHTSHADE FAMILY (eggplant, pepper,
tomato, potato).
All members of the nightshade group
contain atropine, an alkaloid that is an anticholinergic (inhibits
acetylcholine) and produces inflammation. A number of people with
CFIDS report alleviation of joint pain after elimi nating these foods
from their diets. Some patients find they can eat pota toes that have
been boiled in water (with the liquid discarded).
MILK PRODUCTS. Dr. David Bell reports
that most of his patients have sensitivities to milk products. Many
people, even in the general pop ulation, develop a deficiency in
lactase, the enzyme that breaks down lac tose. Lactose intolerance
can produce bloating, gas, and discomfort. In ad dition, milk
thickens mucus, which can worsen symptoms for patients with
allergies. Some people who cannot consume whole milk (or cheese) find
they can drink skim milk. Others find they can substitute nonfat
yo gurt or cheeses that are not aged (cream cheese, cottage cheese,
farmer's cheese) for full-fat or aged dairy products.
FRUITS. Fruits contain large amounts of
fructose. People with severe problems from defective carbohydrate
metabolism experience less fatigue and general malaise with a
fruit-free diet. Those with fewer problems sometimes find they can
eat fruit after a meal rather than on an empty stomach. Some people
also report that some fruits (citrus, for example) are harder to
digest than others.
GAS-PRODUCING FOOD (onions, cabbage,
brussels sprouts, broc coli). People with gastrointestinal problems
should avoid gas-producing foods. Sometimes negative effects are
mitigated by cooking these foods thoroughly.
SPICY FOODS (black pepper, curry,
garlic). Many people with food sensitivities seem to do best with a
bland diet, especially in the acute phase. Avoid spicy foods if you
have gastrointestinal problems.
RAW FOODS. Even though salads provide
necessary roughage, many CFIDS patients experience discomfort after
eating raw vegetables. Eating well-cooked vegetables and grains
usually mitigates digestive disturbances.
YEAST-CONTAINING FOODS (brewer's yeast,
fermented products, mushrooms, aged cheese, B vitamins). Patients
with systemic yeast in fections (Candida) should avoid yeast
products, not because yeast prod ucts cause Candida to grow, as is
commonly believed, but because people with Candida overgrowth tend to
become allergic to yeasts and molds.
ACID FOODS (fruits, tomatoes, vinegar).
Patients with interstitial cystitis or recurrent gastritis should
avoid acidic foods, which usually exac erbate symptoms (see Chapter
3: Urinary Tract Problems).
NUTS. Nuts contain large amounts of
arginine, the amino acid needed for herpesviruses to replicate. For
this reason, they should be avoided. They also tend to produce
allergic reactions in those who are sensitive.
SOY PRODUCTS. Soy products sometimes
provoke reactions such as headache or gastrointestinal pain in
sensitive individuals.
FOOD ROTATION
People with many food allergies and
sensitivities may want to rotate their foods. The rationale behind
food rotation is, if your body takes a rest from the chemical
components of the food you are eating (which it can do only after
constant exposure to those chemicals), it will not mount an im mune
attack. Supposedly, the body will "forget" its first
exposure to a food after 4 days. Thus a rotation diet calls for a
4-day delay before eating a sus pected food a second time. Some very
sensitive people may want to wait a week before repeating foods.
Foods that produce strong reactions (diar rhea, acid stomach, nausea,
headache, hives, itching, any other allergic re sponse) should be
strictly avoided. If your diet is very restricted, a 4-day interval
may not be possible. In that case, allow as much time as you can
between foods. It is also very helpful if you can address the
problems of al lergies and leaky gut syndrome directly (see Chapter
3: Allergies, Digestive Disturbances). Supplement your diet, if you
can, with an easily absorbed liquid or powdered vitamin compound (see
Chapter 5: Vitamins) to avoid nutritional deficiencies.
COOKING TIPS
Anything you can do to lessen work in
the kitchen will help you im prove your diet because you will have
more energy to plan and eat meals. If you are acutely ill or
bedbound, make it a priority to get some help in the kitchen. People
who feel too tired or sick to cook may not eat, which cre ates
problems above and beyond those caused by CFIDS. If friends offer to
help, ask them to prepare meals. If you are alone, try some of the
following suggestions to cut down on your work load.
• Prepare meals in advance. Cook
during periods of higher energy or ask someone to prepare food and
freeze it in individual portions.
• Buy frozen food. Many organic and
natural foods are available from health food stores. Cascadian Farms
makes frozen organic corn, potatoes, carrots, and other vegetables.
You can also purchase frozen organic meats and main dishes that do
not contain artificial addi tives.
• Order food by phone. Many grocery
stores will deliver for a small fee. Call to see which will take
orders by phone.
• Contact volunteer services. Many
churches and local organizations have volunteers to help you shop and
cook meals.
A FINAL WORD ON FOOD AND DIET
Experiment with your diet to find one
that works best for you, but re member to use common sense. Many
nutritionists, chiropractors, naturopaths, and countless authors of
best-selling diet books have special regi mens they claim will
produce immediate health gains. Often the pressure to adopt one of
these diets can be intense, especially if your friends or
ac quaintances have heard rumors of cases in which people with
cancer, dia betes, heart disease, or other conditions have been cured
simply by follow ing a particular diet. Special diets can certainly
help people with CFIDS, but we have yet to see a case of anyone who
has been cured by using any of the diets that have been popularized
over the past decade. Quite the con trary. A number of CFIDS patients
have experienced setbacks as a result of rigorous dieting. Several of
those we surveyed reported rapid weight loss with diets that severely
restrict carbohydrates. Others have reported exac erbation of
weakness from diets that eliminate proteins. Make diet changes
slowly, proceed with caution (much as you would with any new
treat ment), and keep in mind that you are the best judge of what is
"good for you."
ORGANIZATION
Food Allergy Network 4747 Holly Avenue
Fairfax, VA 22030-5647 800-929-4040 (telephone)
FURTHER READING
Brostoff, Jonathan, and Gamlin, Linda.
The Complete Guide to Food Allergy and Intolerance. New York: Crown
Publishers, 1989 (guide to symptoms, causes, and man agement of food
sensitivities).
Dumke, Nicolette M. Allergy Cooking
With Ease. Lancaster, Pa.: Starburst Publishers, 1992 (a compilation
of recipes accommodating every type of allergy).
SEE
• Chapter 3: Allergies (food),
Candida, Digestive Disturbances, Hypoglycemia, Urinary Tract Problems
for diet suggestions and treatments pertaining to specific symptoms.
CHAPTER 10
Special Needs of Children With CFIDS
Maya... At age 7 years Maya was a
lively, gregarious child, always ready for an "adventure"
and full of laughter. She was bright, did well in school, and had a
lively interest in all her subjects, especially math. Her parents
thought the world of her. In the spring just before her eighth
birthday, Maya began com plaining of stomachaches and headaches. Her
mother had become ill with CFIDS the previous fall, but because she
had been told (erroneously, as it turned out) that children could not
contract CFIDS, the family attributed Maya's symptoms to flu, which
was going around. Maya's stomachaches and headaches did not go away,
however, and friends began suggesting that Maya was imitating her
mother to get attention. That summer her symptoms seemed to clear up,
and Maya went to spend a month with her grandparents. During this
time Maya started sleeping excessively. Her grandmother was
ac customed to letting children sleep until they awakened naturally,
but when Maya was asleep half the day, she realized something was
wrong. When Maya returned home just before school started again, she
seemed in good spirits and eager for school to begin.
In the week before the start of the
school year, Maya began complaining again of stomachaches and
headaches. Now she also had diarrhea. The doctor thought she might
have worms and gave her medication, but instead of going away her
symptoms worsened. Sore throat and low-grade fever developed. Maya
was reexamined by the family physician, who noted that the lymph
nodes under her jaw were enlarged and prescribed an antibiotic.
Maya's con dition did not improve with the medication and soon other
problems devel oped. In contrast to her long hours in bed during the
summer, she now had insomnia and often stayed awake the whole night.
She said that even when she did sleep it felt as though she hadn't.
Sometimes before going to bed she would hold her chest and say she
"couldn't breathe." When she did finally sleep, her rest
was punctuated by nightmares, and she would awaken terrified and
cry ing. Her ankles hurt her so much in the morning she could barely
walk, and she lost interest in school. She said math gave her a
headache, and she did not do her assignments. Her teachers became
frustrated when she said she could not remember spelling and other
material she had previously learned and la beled her a "problem."
Her appetite disappeared, and she complained that foods tasted bad.
Maya lost several pounds. When her friends came to call, she told
them to play without her. Within a season, Maya had been completely
transformed from a lively little girl to a thin, pale recluse. Her
last words at night before she went to bed were always, "I can't
believe how bad I feel."
At that point her mother was almost
certain that Maya also had CFIDS. She consulted with a CFIDS expert
and the family physician, who was already familiar with her mother's
case. Both were of the opinion that Maya indeed had CFIDS. The news
was devastating to Maya's parents.
The following day, Maya's mother
removed her from school. The family physician consented to recommend
her for home tutoring through the public school system. For the next
8 months, Maya rarely left home. She went to bed early in the
evening, slept as late as she could in the morning, and took naps or
rested during the day. Mornings were always hard for her. The tutor
came three times a week to keep Maya current with school work, but
after a few weeks began berating her for not concentrating on her
tasks. The parents re quested another tutor, but the director refused
to supply one, citing the tutor's opinion that Maya had "school
phobia" and was not really sick. Her mother withdrew Maya from
the program and home schooled her.
This period was difficult for both
mother and daughter. The mother, also ill, had very little energy to
cope with a sick daughter. To confound matters, Maya had become
extremely volatile and seemed to be either perpetually an gry or
weeping. Maya herself was confused by her outbursts and, when asked
what was wrong, would cry out, "I don't know!" She had
become an in tractable little girl, and her mother found herself
losing patience with Maya. However, despite all their difficulties,
the two grew quite close. Maya's fright ening symptoms were
understood and explained by her mother. Maya never had to endure the
skepticism of doctors, friends, and family because her par ents were
already familiar with the illness. Perhaps most important, Maya
learned how to take care of herself. She learned she could paddle
around the pool a little, but not ride her bike. She remembered to
take her vitamins daily and voluntarily gave up sweets. She came to
recognize her own limits and stop activities before they caused a
relapse. She learned to talk about how she was feeling. Best of all,
she learned patience.
Fifteen months after Maya left school,
she returned. The school day always left her tired, but she was able
to keep up with her work and, within 2 months, she made the honor
roll, despite severe anxiety about taking tests. Her mother wrote a
note to the gym teacher to request that Maya be excused from running
and all other aerobic activities. A tutor came once a week to help
Maya with spelling, handwriting, and math—three areas that caused
her particular problems. After-school activities were still
curtailed, but Maya's cheer and zest for life had returned, and she
was eager to get on with things. Her mother steered her toward
quieter activities, such as crafts, languages, music, and art lessons
that did not tax her strength but helped boost her self-confidence.
Although she was clearly less energetic than other children and
experienced a flare-up of symptoms when she overexerted herself or
caught a cold (a frequent occur rence), she was still able to
participate fully in most activities and events.
Maya's story demonstrates that children
do indeed get CFIDS. In fact, they do so in significant numbers. In
early community-wide outbreaks of CFIDS, children were among the most
frequently affected. In the Lyndonville, New York, outbreak, Dr.
David Bell noted that children younger than 18 years represented 30%
of the total number of individuals affected.
In contrast to the adult population
with CFIDS, in which women pre dominate, the illness seems to affect
boys as often as girls. Dr. Bell has re ported a nearly equal gender
distribution in his practice. He also has re ported that 45% of his
pediatric patients have a family member ill with CFIDS.
While, in most regards, CFIDS in
children is indistinguishable from CFIDS in adults, there are some
important differences. According to Dr. Bell, the pattern of onset
seems to be more age related in children. In chil dren between the
age of 8 years and the onset of puberty, CFIDS usually develops
gradually. After puberty, CFIDS generally begins with acute onset of
symptoms, usually resembling the flu or mononucleosis. In children
younger than 8 years old, CFIDS is nearly impossible to diagnose
because of the diffuse, transient nature of the symptoms and the
difficulty most young children have in giving a detailed description
of symptoms. This is not to say that younger children do not contract
CFIDS. Parents of chil dren 4, 5, and 6 years of age have reported
CFIDS-like symptoms in their children. However, most clinicians will
not venture to make a diagnosis for a very young child.
Symptoms in children closely parallel
those in adults, although chil dren tend to experience more
gastrointestinal problems (manifested as stomachaches) and flu
symptoms (sore throat and swollen glands). Children also tend to
experience all symptoms with equal severity. Dr. Bell has noted that,
whereas adults generally report certain symptoms as con sistently
more severe than others, children experience severe headaches and
stomachaches one day, severe leg pains and insomnia on another, and
severe joint pains on a third. Because gradual onset of the illness
in young children exempts it from the Centers for Disease Control and
Prevention (CDC) definition of CFIDS, and because some symptoms tend
to pre dominate in children, Dr. Bell has proposed an alternate set
of criteria for diagnosing CFIDS in children.
CRITERIA FOR DIAGNOSING CFIDS IN
CHILDREN*
• Activity limitation that causes
disruption of normal lifestyle for at least 6 months
• No obvious physical or emotional
cause of fatigue
• At least 8 of the following 12
symptom criteria: Fatigue Headache Abdominal pain Lymph node pain
Recurrent sore throat Muscle pain Joint pain Sleep disturbance Eye
pain, photophobia, or both Depression
Neurologic symptoms (lightheadedness,
balance disorder, paresthesia) Cognitive difficulties (short-term
memory loss, attention deficit disorder)
•From Bell, David. Special Bulletin.
CFIDS Chronicle, November, 1993.
Routine test results tend to be normal
for most children with CFIDS, although low sedimentation rate,
slightly elevated white blood cell count, and low liters of
antinuclear antibodies are common. Because most doc tors order only
routine tests for children who come to their offices with flu-like
symptoms, a family physician will rarely make the diagnosis of CFIDS,
even if the child is seen in the office every few weeks. More
specif ic immune testing is not usually ordered. As in the case of
adults with CFIDS, more complex immune system tests (natural killer
cells, T and B cells) may reveal abnormalities. Tests for viral
involvement (Epstein-Barr virus or human herpesvirus 6) may be
unpredictable.
If symptoms are severe and prolonged,
the doctor will probably look for other causes, such as ulcers,
Crohn's disease, childhood migraine syn drome, atypical epilepsy,
food allergies, rheumatoid arthritis, rheumatic fever, diabetes, or
attention deficit disorder. The child may even receive a diagnosis of
"school phobia" when results of these tests are negative.
In this case, the child needs extra support from family members and
most likely needs a new doctor.
The persistent attitude on the part of
doctors and teachers that the child is "faking" symptoms
for psychological reasons causes profound damage to children with
CFIDS. Misdiagnosing CFIDS as school phobia, depression, or
separation anxiety or chalking it up to family problems places the
blame squarely on the shoulders of the child. When adults expe rience
this kind of skepticism, they usually are able to defend themselves
against the mistaken ideas of others. Children are unable to do so;
they de pend on adults for information, explanations, sympathy, and
advice. To throw disbelief in the face of a child who not only has
all the physical symptoms of CFIDS but is terribly frightened and in
profound need of re assurance is not only cruel, it is detrimental to
the child's future emotion al growth.
Parents of a child with CFIDS should
keep in mind that even though school officials and doctors may
attribute their child's complaints to psy chological causes, they
seldom can back up their opinions. School phobia, for example, is a
manifestation of separation anxiety. Children with sepa ration
anxiety display symptoms when anticipating separation but which
resolve when separation does not occur. In CFIDS, symptoms are
present not only during school hours, but after school and on
weekends as well. Also, symptoms such as fever, lymph node pain,
night sweats, and muscle and joint pain are not features of school
phobia. Those who are apt to di agnose depression run into the same
inconsistencies: lymph node pain and fever are not typical of primary
depression. Children with CFIDS can be come depressed, but usually do
so because no one believes they are ill. No study to date has
revealed primary depression among children with CFIDS.
Another difficulty parents may
encounter is that some doctors insist that withholding the diagnosis
of CFIDS is better for the child. They argue that making the
diagnosis will encourage self-identification as a "sick
per son." This is a fallacious argument. A sick child certainly
is aware of the fact. Denying reality will only produce more
psychological stress.
It is important to note that the
prognosis for the majority of children with CFIDS is good. Many
recover within 3 years. In some children, how ever, severe cases can
last for many years. These are marked by neurologic symptoms such as
seizures, myoclonus, and paresthesia. Children with se vere or
long-term neurologic symptoms most certainly need to be under the
continuing care of a CFIDS specialist.
TREATMENT TIPS
Treatments for children with CFIDS are
more restricted than for adults and, as a consequence, clinicians
tend to be somewhat more cautious in their approach. Dr. Bell, for
example, does not recommend giving children many of the drugs
commonly prescribed for adults, particularly antidepressants
(personal communication, 1993). The justification for a more
conservative approach is that the child's normal neurologic growth
might be affected. Nor do most doctors recommend experimental CFIDS
treat ments such as Kutapressin in children who have not finished
growing (al though adolescents may benefit considerably from this
treatment).
Many alternative treatments and
supportive therapies, however, can be beneficial for children. In
fact, some of these gentler therapies (herbs and vitamins,
especially) have been more successful in children than in adults. Dr.
Charles Lapp, a well-known pediatric CFIDS specialist, recommends
valerian root (500 to 750 mg nightly) to help with insomnia. He also
uses a mild antihistamine such as Benadryl (25 to 50 mg; a clear
liquid is avail able for those with sensitivities to dyes), Tylenol
PM, or Excedrin PM to help children sleep. Children also respond well
to supportive therapies such as hydrotherapy, massage, and
acupuncture (for pain).
Cognitive problems in childhood are
particularly troubling because these are crucial years for
intellectual development. Children with CFIDS often experience
particular difficulties in maintaining attention (attention deficit
disorder), retaining information (memory formation), and focus
(concentration). Often they lose confidence in their ability to
learn. Dr. Linda Iger, a psychologist who has worked extensively on
neurocognitive aspects of CFIDS, has outlined the following useful
strategies to help chil dren with CFIDS cope with school tasks.
• Limit periods of concentration. The
average adult can concentrate for only 50 minutes at a stretch.
Children with CFIDS generally lose their ability to concentrate after
about 20 minutes (or less, depending on the severity of the illness).
Dr. Iger recommends that children time themselves to discover their
concentration "ceiling," or limit of con centration.
Whatever that amount of time—15 minutes, half an hour—is as much
time as should be devoted to a single topic. When concentration
wanes, Dr. Iger recommends taking a break for about 10 minutes.
Children should get a glass of water, look out the win dow, or close
their eyes and "kick back." In other words, they need to
give the brain a break. This work-rest pattern should be repeated
twice, then take a long break.
• Use passive learning. Often,
focusing on a topic makes it harder to absorb. Children with CFIDS
may find the task of learning new in formation easier if they don't
concentrate directly on it. For example, a random list of geographic
features may be impossible to memorize if tackled directly. The same
information is much easier to process if encountered in the form of a
story or video. Your local library may have entertaining materials
(PBS video series are particularly help ful) that might help the
child absorb information indirectly.
• Limit information. It is difficult
for most people to remember long strings of facts or numbers. For
people with CFIDS the task is nearly impossible, Most children (and
adults) with CFIDS simply find themselves "going blank"
after too much input. Try to limit informa tion input to small
increments. For example, a string of numbers such as 4358962 may be
difficult to retain. When this set of numbers is broken up into two
sets, for example, 435-8962, it is like a phone number. Sets of three
and four numbers are much easier to retain than sets of seven digits.
Try to use this strategy when faced with memorizing numbers or facts.
• Eliminate distractions. Studying
with music or television in the background is not a good idea for
children with CFIDS. The addi tional input of music or talking makes
it difficult to concentrate. Find a quiet, nondistracting study place
for them.
• Reduce anxiety. Anxiety can have
disastrous effects on attention span, focus, and retention. For this
reason, many children with CFIDS find themselves unable to take
tests. Children who feel them selves becoming anxious (for example,
during a test) should practice deep-breathing and stress-reduction
exercises. Self-hypnosis and meditation techniques can also be quite
helpful (see Chapter 6: Hypnosis, Meditation; Chapter 7).
Unfortunately, it is still difficult to
find pediatricians knowledgeable about CFIDS. Many doctors are
unaware that children can contract CFIDS, even when they know it
occurs in adults. If you suspect your child has CFIDS, it might be
well worth a trip to consult with a specialist, to both confirm a
diagnosis and devise a treatment plan best suited to your child's
symptoms and age. A pediatrician who is open-minded will follow the
specialist's rec ommendations. Having a supportive physician can make
a world of differ ence to both the child with CFIDS and his or her
parents.
Of equal importance to finding a
supportive physician is giving careful attention to managing the
illness at home. Children with CFIDS spend the majority of their time
at home with their families, which means that proper home management
of CFIDS is vital for recovery. The following man agement tips can
help provide a basis for dealing with CFIDS in a child and can help
make the experience considerably easier for all involved.
Managing CFIDS at Home
PROVIDE SUPPORT AND UNDERSTANDING.
Support and under standing are the most important aspects of helping
a child with CFIDS. Suspicions of malingering will invariably cause
self-esteem problems in children. It is important to show children
that you believe them, that what they are feeling can be explained,
and that you will do everything in your power to help them. Make sure
your doctor demonstrates the same atti tude.
MAINTAIN SOCIAL INVOLVEMENT. It is
crucial for children with CFIDS to maintain relationships with
friends, even if they are out of school. Brief play times for younger
children or visits for older children are essential to keep up
flagging spirits. To avert depression, don't let your child become
too isolated.
REQUEST FREQUENT DIAGNOSTIC
REEVALUATION. Though CFIDS rarely leads to other diseases, some
symptoms are similar enough to those of anemia, heart, and lung
disease to warrant reappraisal. There is one published case of a
child in whom juvenile diabetes developed after the onset of CFIDS.
New or worsening symptoms should always be investigat ed.
INSIST ON ADEQUATE REST. Children are
more active than adults, and the amount of activity a child with
CFIDS can sustain is normally greater than in an adult. Children
should be encouraged to be active, but not beyond their limits. An
observant parent can judge a child's limits by early warning signs
such as paleness, darkness around the eyes, hyperactivity,
talkativeness, restlessness, lethargy, crying and irritability, loss
of ap petite, and sensitivity to light and noise—all signs that the
child must rest immediately.
PROVIDE SCHOLASTIC SUPPORT. Home tutors
are useful, whether the child is being taught at home or in school.
According to federal law (Public Law 94-142, the Education of All
Handicapped Children Act of 1975), all children ill for more than a
few weeks are eligible for tutoring by teachers from the public
school district. A form must be filled out by your doctor to verify
that the child is chronically ill. A teacher is then assigned to come
to your house, usually three times a week. If the school district
balks at sending a teacher (they often have numerous excuses, none of
them le gal), cite the law and threaten legal action, if necessary.
If tutoring through the public schools does not work out (as in
Maya's case), many cities have volunteer tutoring programs for
children who cannot attend school. Tutoring can be done by a teenager
(if the child is younger), college stu dents in education programs,
or retired teachers. The child who is still at tending school needs
to rest during gym and study hall. It helps to have a note from your
doctor.
KEEP A REGULAR NONSTRESSFUL SCHEDULE.
Stressors of any kind can worsen CFIDS in children, as they do in
adults. To avoid as much physical stress as possible, make sure your
child follows a fairly fixed schedule for eating, sleeping, and
activities. Adjust his or her schedule ac cordingly during
remissions, but remember that even if the child appears well, late
bedtimes and overactivity will only cause a relapse. This is not a
good time to burden children with too many expectations or insist on
competitive activities, however normal they may be for others in
their age group. Parents must walk that fine line between allowing
normal activities, which are essential for a child's growth and
happiness, and excesses, which court relapse. Learning to pace a
child with CFIDS is one of the most diffi cult tasks a parent can
master, but it is well worth it in the long run. Eventually the child
learns to pace him- or herself. Let your child have fun, but keep an
eye on his or her limits.
As you care for your child with CFIDS,
don't forget to take care of yourself as well. Nothing is more
heartbreaking than watching a child suf fer. Seek out support groups,
friends, and family members for moral sup port and take advantage of
the resources available for children with long-term or disabling
illnesses. Remember that, for your child, you are the most important
person in the world. Take good care of yourself.
ORGANIZATIONS
CFIDS Youth Alliance (CYA) PO Box
220398 Charlotte, NC 28222-0398 800-442-3437 (toll-free telephone)
National Information Center for
Children and Youth With Disabilities PO Box 1492 Washington, DC 20013
PEN-PALS
CFIDS Friendship Network PO Box 7202
Gainesville, FL 32605
CFS Youth Outreach
c/o Sharon Walk
14 Shetland Road
Florham Park, NJ 07932-1813
Teen CFIDS Pen-Pal Connection c/o
Connie Howard 1810 Cliffwood Court New Albany, IN 47150
WEBSITE
http://www.ypwcnet.org/ (provides
extensive resources for children with CFIDS)
FURTHER READING
- Journal of Chronic Fatigue Syndrome (Volume 2, Number 2,1997) focuses on research and issues involving children with CFIDS.
- Thorson, Kristin, ed. Fibromyalgia Syndrome and Chronic Fatigue Syndrome in Young People: A Guide for Parents. Tucson, Ariz.: Health Network, 1994.
- Vanderzalm, Lynn. Finding Strength in Weakness. Grand Rapids, Midi.: Zondervan, 1995.
APPENDIX A: RESOURCES
SELECTED CFIDS BOOKS
Bell, David S. The Doctor's Guide to
Chronic Fatigue Syndrome. New York: Addison-Wesley Publishing Co.,
1994.
Dr. Bell's guide, although ostensibly pitched to doctors, is not technical. The material is presented in a clear format, is easy to read, and is well organized. The strongest parts of the book are the overview and description sections. Dr. Bell's book is very useful for the new reader.
Berne, Katrina H. Running on Empty: Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Alameda, Calif.: Hunter House, 1992.
This is one of the classics in the CFIDS literature. It contains information on testing, symptoms, resources, and a history of the illness, which together comprise the essential information every person with CFIDS must know. It has recently been updated.
Feiden, Karyn. Hope and Help for Chronic Fatigue Syndrome. New York: Simon & Schuster, 1990.
This is one of the better practical guides for coping with CFIDS. It contains detailed and thoroughly researched information on the current theories concerning the cause of the illness, tests normally performed to help confirm a diagnosis, and standard treat ment protocols. It concludes with an excellent resources section.
Goldstein, Jay A. Betrayal by the Brain. Binghamton, N.Y.: Haworth Medical Press, 1996.
Courmel, Katie. A Companion Volume to Dr. Jay A. Goldstein's Betrayal by the Brain.
Binghamton, N.Y.: Haworth Medical Press, 1996.
This book by Dr. Goldstein gives insights into the limbic system dysfunction that char acterizes CFIDS. Because it is geared to physicians, it is very technical. The companion guide by Katie Courmel provides the layperson with an easy-to-read interpretation of Dr. Goldstein's work ($14.95).
Hyde, Byron M, ed. The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ottawa, Ontario: Nightingale Research Foundation, 1992.
The Cambridge Easter Symposium on ME/CFS held in Cambridge, England, in April 1990 forms the bulk of this book. Despite the fact that the 75 papers included in this volume represent research that is several years old, the information contained in them, and in the review chapters, is not outdated. Chapter topics include historical reviews of CFIDS epidemics, CFIDS in children, diagnosis, infectious origins of CFIDS (viral re search), skeletal muscle and heart involvement, neurologic injury, neuropsychological changes, food sensitivities, immunology, blood cell changes, and treatment. For anyone who wishes to explore the more technical aspects of CFIDS, this book is a gold mine of information. As of this writing, it is available for the price of a membership in the Nightingale Research Foundation (see Appendix B).
Johnson, Hillary. Osier's Web, Inside the Labyrinth of the Chronic Fatigue Syndrome Epi demic. New York: Crown Publishers, 1996.
In this thoroughly researched book, Johnson tells the inside story of the recent medical and political events surrounding the CFIDS outbreaks of the 1980s.
Rosenbaum, Michael, and Susser, Murray. Solving the Puzzle of Chronic Fatigue Syn drome. Tacoma, Wash.: Life Sciences Press, 1992.
The authors offer a wide range of theories and ideas regarding CFIDS. Dr. Susser and Dr. Rosenbaum view CFIDS as a complex disorder, and in light of the fact that a single agent or pathogen has yet to be discovered, they suggest treating CFIDS as a mixed-in fection syndrome. The authors test their patients for parasites, yeast, bacteria, and viruses and investigate possible underlying medical conditions that may mimic or worsen CFIDS (such as hypothyroidism, adrenal insufficiency, environmental illness, heavy metal poisoning, and allergies).
Thorson, Kristin, ed. Fibromyalgia Syndrome and Chronic Fatigue Syndrome in Young People: A Guide for Parents. Tucson, Ariz.: Health Network, 1994.
This book offers basic information on the care and management of children with CFIDS. It also provides appendices that detail the laws and services applicable to stu dents in the United States. The guides in the back of the book are quite useful for teach ers. To order, contact the Fibromyalgia Network, PO Box 31750, Tucson, AZ 85751-1750 (520-290-5508; fax: 520-290-5550) (58 pages; $10.00).
Vanderzalm, Lynn. Finding Strength in Weakness. Grand Rapids, Midi.: Zondervan, 1995.
Ms. Vanderzalm interviewed 70 people with CFIDS, and drew on her own experience as a mother of children with CFIDS (and ill herself) to write this book about the im pact of CFIDS on a family. Her avowedly Christian perspective may put some people off. However, since it is one of the few books concerning this topic, the information it contains should be useful to all who read it. The Foreword is written by David Bell, M.D. To order, contact the CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398 (286 pages; $11.00).
Wilkinson, Steve. Chronic Fatigue Syndrome: A Natural Healing Guide. New York: Sterling Publishing Co., 1990.
This is one of the more detailed books on alternative treatments for CFIDS. Wilkinson worked as an alternative health care practitioner in Great Britain and treated a number of patients for ME before he contracted the illness himself. The sections describing the benefits of acupuncture, aroma therapy, hypnosis, meditation, and dietary supple ments, while brief, offer a good sampling of some of the alternative treatments consid ered useful for many CFIDS symptoms.
PERSONAL ACCOUNTS
Fisher, Gregg Charles. Chronic Fatigue Syndrome: A Victim's Guide to Understanding, Treating and Coping With This Debilitating Illness. New York: Warner Books, 1987.
This book is both a personal account of Gregg Fisher and his wife's illness and a CFIDS guide, including all that was known about the illness in 1987. He also has many helpful suggestions for dealing with the Social Security Administration, coping with the sub jective fallout of having a major illness (emotional upset), and maintaining relation ships with incredulous friends and acquaintances. The book has recently been revised and updated.
Kenny, Timothy. Living With Chronic Fatigue Syndrome: A Personal Story of the Strug gle for Recovery. New York: Thunder's Mouth Press, 1994.
This book documents Tim Kenny's struggle with severe CFIDS. Kenny, a journalist, wanted to share his own battle with CFIDS to inspire others to keep up the fight. His essay on fatigue is particularly cogent (paperback, $12.95).
Dr. Bell's guide, although ostensibly pitched to doctors, is not technical. The material is presented in a clear format, is easy to read, and is well organized. The strongest parts of the book are the overview and description sections. Dr. Bell's book is very useful for the new reader.
Berne, Katrina H. Running on Empty: Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Alameda, Calif.: Hunter House, 1992.
This is one of the classics in the CFIDS literature. It contains information on testing, symptoms, resources, and a history of the illness, which together comprise the essential information every person with CFIDS must know. It has recently been updated.
Feiden, Karyn. Hope and Help for Chronic Fatigue Syndrome. New York: Simon & Schuster, 1990.
This is one of the better practical guides for coping with CFIDS. It contains detailed and thoroughly researched information on the current theories concerning the cause of the illness, tests normally performed to help confirm a diagnosis, and standard treat ment protocols. It concludes with an excellent resources section.
Goldstein, Jay A. Betrayal by the Brain. Binghamton, N.Y.: Haworth Medical Press, 1996.
Courmel, Katie. A Companion Volume to Dr. Jay A. Goldstein's Betrayal by the Brain.
Binghamton, N.Y.: Haworth Medical Press, 1996.
This book by Dr. Goldstein gives insights into the limbic system dysfunction that char acterizes CFIDS. Because it is geared to physicians, it is very technical. The companion guide by Katie Courmel provides the layperson with an easy-to-read interpretation of Dr. Goldstein's work ($14.95).
Hyde, Byron M, ed. The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ottawa, Ontario: Nightingale Research Foundation, 1992.
The Cambridge Easter Symposium on ME/CFS held in Cambridge, England, in April 1990 forms the bulk of this book. Despite the fact that the 75 papers included in this volume represent research that is several years old, the information contained in them, and in the review chapters, is not outdated. Chapter topics include historical reviews of CFIDS epidemics, CFIDS in children, diagnosis, infectious origins of CFIDS (viral re search), skeletal muscle and heart involvement, neurologic injury, neuropsychological changes, food sensitivities, immunology, blood cell changes, and treatment. For anyone who wishes to explore the more technical aspects of CFIDS, this book is a gold mine of information. As of this writing, it is available for the price of a membership in the Nightingale Research Foundation (see Appendix B).
Johnson, Hillary. Osier's Web, Inside the Labyrinth of the Chronic Fatigue Syndrome Epi demic. New York: Crown Publishers, 1996.
In this thoroughly researched book, Johnson tells the inside story of the recent medical and political events surrounding the CFIDS outbreaks of the 1980s.
Rosenbaum, Michael, and Susser, Murray. Solving the Puzzle of Chronic Fatigue Syn drome. Tacoma, Wash.: Life Sciences Press, 1992.
The authors offer a wide range of theories and ideas regarding CFIDS. Dr. Susser and Dr. Rosenbaum view CFIDS as a complex disorder, and in light of the fact that a single agent or pathogen has yet to be discovered, they suggest treating CFIDS as a mixed-in fection syndrome. The authors test their patients for parasites, yeast, bacteria, and viruses and investigate possible underlying medical conditions that may mimic or worsen CFIDS (such as hypothyroidism, adrenal insufficiency, environmental illness, heavy metal poisoning, and allergies).
Thorson, Kristin, ed. Fibromyalgia Syndrome and Chronic Fatigue Syndrome in Young People: A Guide for Parents. Tucson, Ariz.: Health Network, 1994.
This book offers basic information on the care and management of children with CFIDS. It also provides appendices that detail the laws and services applicable to stu dents in the United States. The guides in the back of the book are quite useful for teach ers. To order, contact the Fibromyalgia Network, PO Box 31750, Tucson, AZ 85751-1750 (520-290-5508; fax: 520-290-5550) (58 pages; $10.00).
Vanderzalm, Lynn. Finding Strength in Weakness. Grand Rapids, Midi.: Zondervan, 1995.
Ms. Vanderzalm interviewed 70 people with CFIDS, and drew on her own experience as a mother of children with CFIDS (and ill herself) to write this book about the im pact of CFIDS on a family. Her avowedly Christian perspective may put some people off. However, since it is one of the few books concerning this topic, the information it contains should be useful to all who read it. The Foreword is written by David Bell, M.D. To order, contact the CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398 (286 pages; $11.00).
Wilkinson, Steve. Chronic Fatigue Syndrome: A Natural Healing Guide. New York: Sterling Publishing Co., 1990.
This is one of the more detailed books on alternative treatments for CFIDS. Wilkinson worked as an alternative health care practitioner in Great Britain and treated a number of patients for ME before he contracted the illness himself. The sections describing the benefits of acupuncture, aroma therapy, hypnosis, meditation, and dietary supple ments, while brief, offer a good sampling of some of the alternative treatments consid ered useful for many CFIDS symptoms.
PERSONAL ACCOUNTS
Fisher, Gregg Charles. Chronic Fatigue Syndrome: A Victim's Guide to Understanding, Treating and Coping With This Debilitating Illness. New York: Warner Books, 1987.
This book is both a personal account of Gregg Fisher and his wife's illness and a CFIDS guide, including all that was known about the illness in 1987. He also has many helpful suggestions for dealing with the Social Security Administration, coping with the sub jective fallout of having a major illness (emotional upset), and maintaining relation ships with incredulous friends and acquaintances. The book has recently been revised and updated.
Kenny, Timothy. Living With Chronic Fatigue Syndrome: A Personal Story of the Strug gle for Recovery. New York: Thunder's Mouth Press, 1994.
This book documents Tim Kenny's struggle with severe CFIDS. Kenny, a journalist, wanted to share his own battle with CFIDS to inspire others to keep up the fight. His essay on fatigue is particularly cogent (paperback, $12.95).
JOURNALS AND PERIODICALS
The CFIDS Chronicle
This quarterly journal of the Chronic
Fatigue and Immune Dysfunction Association of America (see Appendix
B) is perhaps the best, in terms of variety and depth of cover age,
of all the publications offered by independent CFIDS organizations.
Within its covers are the latest in fast-breaking research news, a
complete listing of all related CFIDS materials (which can be
conveniently ordered by phone from the Association), letters, book
reviews, "Ask the Doctor," and myriad other highly useful
resources. Back issues to 1989 are available. The March 1991 issue
"Physician's Forum" is an excellent resource for currently
available treatments from the four best-known CFIDS clinicians. To
order, write the CFIDS Association of America, PO Box 220398,
Charlotte, NC 28222-0398. (Subscription: $30.00 in U.S.; $40.00 in
Canada; $55.00 overseas.)
Journal of Chronic Fatigue Syndrome
This is a highly technical quarterly
medical journal edited by Dr. Nancy Klimas and Dr. Roberto Petarca.
The basic mission of the journal is to blend basic scientific,
clinical, and epidemiologic research in a peer-review format. Much of
the research is also avail able in The CFIDS Chronicle. To order,
write Hawthorn Press, 10 Alice Street, Binghamton, NY 13904-9981.
(Subscription: $36.00.)
The CFIDS Inspiration
This newsletter, edited by Brenda
Sheridan, helps people with CFIDS exchange person al ideas and
information about coping with CFIDS. For a sample copy, send name,
ad dress and a $2.00 check to Lorri Coller-Nugent, The CFIDS
Inspiration, 2419 S. 61st Street, Philadelphia, PA 19142-3215.
(Subscription: $15.00 in U.S.; $17.00 interna tional.)
CFS and FMS Teen Voices
This newsletter, published six times a
year and edited by two adolescents with CFIDS, provides a phone
support group and locates pen-pals. For more information, contact Jen
Day, CFS and FMS Teen Voices, 205 Walnut Street, Red Oak, IA 51566
(712-623-2238—helpline). Website: jennyd@redoak.heartland.net
(Subscription: $8.00.)
The National Link
This quarterly newsletter features
creative writing, personal stories, and poetry dedi cated to the
experience of CFIDS/ME. To order, write PO Box 51952, Durham, NC
27727-1952. (Subscription: $15.00 in U.S.; $20.00 in Canada.)
Skywriters
This quarterly literary journal edited
by Tara Alien contains submissions for people with CFIDS and related
diseases (a self-addressed stamped envelope should be includ ed with
submissions). (Subscription: $20.00; make checks payable to Lyman
Farris, Jr., 245 Spring Street SW, Concord, NC 28025.)
The Meeting Place
This newsletter of the ANZYME Society
of New Zealand contains physicians' reports, letters from readers,
and information about CFIDS. To order, write ANZYMES, Inc., PO Box
36307, Northcote, Auckland 1309, New Zealand. (Subscription: $35.00
U.S. for airmail; $28.00 U.S. for surface.)
TheMEssenger
The monthly newsletter of the ME
Association of Canada contains articles, treatment news, legal
helpline information, medical information, letters from patients,
confer ence reports, and book reviews. This newsletter is
nontechnical and patient-centered. To order, write ME Canada, 400-246
Queen Street, Ottawa, Ontario, KIP 5E4 Canada. (Subscription:
$40.00.)
1996 ME and FM Manual Newsletter
This 155-page informative guide was
assembled by Doug Shore, vice president of the ME Society of British
Columbia. To order, write PO Box 2591, Suman, WA 98295; or 235-32550
MacLure Road, Abotsford, BC V2T 4N3 Canada. (Subscription: $14.00 in
U.S.; $19.00 in Canada.)
VIDEOTAPES
Living Hell: The Real World of Chronic
Fatigue Syndrome (1 hour)
Produced in 1993 by Authentic Pictures
and directed by Lennie Copeland, this video accurately and thoroughly
represents CFIDS from the perspective of those who have the illness.
It is emotionally charged, sometimes even shocking, which may limit
its usefulness for physicians, caregivers, and those who are not
personally worried about the more severe effects of CFIDS. ($32.00
from the CFIDS Association.)
CFIDS Diagnosis and Treatment: A Grand
Rounds Medical Training Video (30 minutes) Dr. Jonathan Rest
instructs health care professionals on the diagnosis and treatment of
CFIDS. ($30.00 from the CFIDS Association.)
CFS: Unraveling the Mystery (20
minutes)
Produced by CNN Newsource in October
1991, this four-part series gives a general but accurate description
of CFIDS. It is useful for convincing skeptical friends and family
members of the reality of CFIDS ($2.00 from the sale of each video
goes to fund CFIDS research). ($12.00 from the CFIDS Association.)
Cheney Clinic Information Video
Produced by the Cheney Clinic, this
presentation by Dr. Paul Cheney is meant to accompany a visit to his
clinic, but provides an informative and clear account of some of the
theories, mechanisms, and treatments frequently discussed in CFIDS
books and journals. This is a good video to show your doctor. ($20.00
from the Cheney Clinic.)
Chronic Fatigue Syndrome: A Real
Disease (90 minutes)
This clear and concise talk by Dr.
Charles Lapp, a well-known CFIDS specialist, pro vides an excellent
overview of the illness: its symptoms, possible causes, and effect on
the immune system. Treatments are discussed and self-management
strategies such as bed rest and vitamin therapy are emphasized. This
tape is invaluable for support groups and friends and families of
people who have CFIDS. It is of particular value for those patients
with cognitive problems who may have difficulty reading more
technical printed material. Most important, Dr. Lapp addresses some
important questions: Is CFIDS contagious? Is CFIDS fatal? Can people
with CFIDS recover? ($25.00 in U.S.; $30.00 in Canada; $35.00
overseas from the CFS Foundation of Greensboro, NC, 10 Partridge
Court, Dept. NC, Greensboro, NC 27455.)
The CFS Foundation of Greensboro, NC
also offers the following videotapes (each tape is $25.00 in U.S.;
$30.00 in Canada; $35.00 overseas):
• Recognition, Diagnosis &
Treatment of CFS. Dr. Charles W. Lapp (50 minutes)
• CFS Update—Richmond, Virginia,
Conference, November 1992. Dr. Paul Cheney and Dr. Charles W. Lapp (2
hours)
• U.S. and British Research
Comparisons. Dr. Byron M. Hyde (2 hours)
• CFS in Children. Dr. Michael
Goldberg (75 minutes)
ARTICLES, INFORMATION PACKETS, AND
RESOURCE GUIDES
The CFIDS Association
PO Box 220398
Charlotte, NC 28222-0398
800-442-3437 (toll-free telephone)
704-362-2343 (local telephone)
704-365-9755 (fax)
704-365-2343 (resources)
http://cfids.org/cfids (Internet home
page)
info@cfids.org (e-mail)
The Association provides a broad range
of educational materials, including 17 key me dia and 13 classic
medical articles. Contact the Association for a complete listing.
($1.00 to $4.00 per article, with discounts available for sets.)
CFIDS Pathfinder
PO Box 2644
Kensington, MD 20891 -2644
301-530-8624 (telephone)
The Pathfinder is a comprehensive
reference for CFIDS citations, including books, his torical
references, government press releases, government publications,
congressional documents, research, periodicals, FOLA requests,
computer bulletin boards, audio-tapes, libraries, films, GPO
bookstores, vertical files, pharmaceuticals, and where and how to
finds CFIDS articles. It is compiled by a librarian with CFIDS and
arranged in looseleaf notebook format to accommodate updates.
(Pathfinder, $12.00, postage $1.05, or 60 cents for medical
residents; Addenda, $6.00 each, postage $1.05, or 30 cents for
medical residents.)
Division of Viral Diseases
Center for Infectious Diseases
Centers for Disease Control and
Prevention
Atlanta, GA 30333
404-332-4555 (telephone)
The CDC will send a copy of the
booklet, The Facts About Chronic Fatigue Syndrome, and an article,
"The Chronic Fatigue Syndrome: A Comprehensive Approach to Its
Definition and Treatment," free on request. These two
publications reflect the CDC's long-term position of denial of CFIDS
and, as a consequence, provide little useful in formation for
diagnosis or treatment. (According to the CDC, there is none.)
National Institutes of Health
National Institute of Allergy and
Infectious Diseases (NIAID)
Office of Communications
9000 Rockville Pike
Building 31, Room 7A32
Bethesda, MD 20892
301-496-5717 (telephone)
The NIAID's packet contains summaries
of all their recent research concerning CFIDS, including articles on
hormone deficiencies, immune abnormalities, patient resources,
mononucleosis, Epstein-Barr virus, and fibromyalgia. A copy of the
CDC booklet is also included. Both are free.
COMPUTER NETWORKS
For those who are bedridden or find
themselves some distance from support groups, com puter networking
provides easy access to information, companionship, and news. Several
commercial services provide access to the Internet.
America Online (800-827-6364) has a
weekly live chat session on CFIDS and a library of files. Notes are
posted in the Disabilities area.
CompuServe (800-848-8990) has a CFIDS
discussion in the Health and Fitness Forum. Members can visit the
section by entering "GO CFIDS." For more information,
contact Ed Isenburg (505-898-4635); on CompuServe at 72303, 1236; or
on the Internet at isenburg@rt66.com.
DRAGnet, a nonprofit group, provides
inexpensive access to computer technology for peo ple with
disabilities. For more information, write DRAGnet, 119 N. 4th Street,
Suite 405 Textile Bldg., Minneapolis, MN 55401 (voice TDD:
612-338-2535; fax: 612-338-2569). DRAGnet Information Service, which
provides a wide array of disability infor mation, can be reached by
computer and modem at 612-753-1943 (ANSI emulation. 8-N-l).
GEnie (800-638-9636 in U.S.;
800-387-8330 in Canada) has a CFIDS category, library of files, and a
monthly conference. Once on GEnie MOVE to page 970 (type M970) to get
to the DisABILITIES RoundTable. From the main menu you can enter the
Bulletin Board. The CFS Category is #18, or visit the CFS Library
(#11 from the Library menu). For further help, contact CFS Category
Leader Lucie Dorais at GE Mail address L. DO-RAIS.
Prodigy (800-776-3449) has a CFIDS
discussion group. Go to Medical Support bulletin board, then to CFIDS
for questions and up-to-date information.
Internet provides the following
resources:
• http:/www.cais.net/CFS—news/ is
the best website for obtaining information about CFIDS.
• CFS-News is an electronic
newsletter that provides the latest news on CFIDS. For subscription
information, contact CFS-NEWS@LIST.NIH.GOV.
• CFS Newswire is a news article
exchange network. Contact the CFS/ME Computer Networking Project at
CFS-ME@SJUVM.STJOHNS.EDU.
• Catharsis is an electronic magazine
that focuses on health and creativity. For infor mation, contact the
editor at CATHAR-M@SJUVM.STJOHNS.EDU.
• CFS-L is an international on-line
discussion group for people with CFS. For infor mation, contact the
moderator at CFS-L-REQUEST@LIST.NIH.GOV.
• Website for Teens:
http://www.ypwcnet.org/index.htm
For more information about electronic
networking and computer resources, contact the CFS/ME Computer
Networking Project at CFS-ME@SJUVM.STJOHNS.EDU. or send an inquiry
with a legal-size self-addressed stamped envelope to PO Box 11347,
Washing ton, DC 20008-0547 or 3332 McCarthy Road, PO Box 37045,
Ottawa, Ontario K1V OWO, Canada. From outside the United States or
Canada, send to either address and include an International Reply
Coupon to cover return postage (see CFIDS Chronicle, Spring 1995 for
detailed information about computer networking).
NETWORKING BY MAIL
Pen-pal services are available for
those who prefer to write letters. Please specify your age when
inquiring.
PWC Pen-Pal List 15865-B Gale Avenue
Box 818 City of Industry, CA 91745
Send 25 cents and a self-addressed
stamped envelope.
CFS Youth Outreach
c/o Sharon Walk
14 Shetland Road
Florham Park, NJ 07932-1813
CYO also publishes a quarterly for
children with CFS.
CFIDS Friendship Network PO Box 7202
Gainesville, FL 32605
Send $1.00 and a legal-size
self-addressed stamped envelope.
APPENDIX B: National and International
Organizations
INTERNATIONAL
The International Association for
CFS/ME
27 N. Wacker Drive Suite 416
Chicago, IL 60606
27 N. Wacker Drive Suite 416
Chicago, IL 60606
Phone
Voice Mail : 847-258-7248
Fax: 847-579-0975
Email
Admin@iacfsme.org
The mission of the IACFS/ME is
to promote, stimulate and coordinate the exchange of ideas related to
CFS, ME and fibromyalgia (FM) research, patient care and treatment.
In addition, the IACFS/ME periodically reviews the current research
and treatment literature and media reports for the benefit of
scientists, clinicians and patients. The IACFS/ME also conducts
and/or participates in local, national, and international scientific
conferences in order to promote and evaluate new research and to
encourage future research ventures and cooperative activities to
advance scientific and clinical knowledge of these illnesses.
The IACFS/ME shall at all times be
organized and operated exclusively for charitable, scientific,
literary or educational purposes as a qualified exempt organization
described under section 501 (c) (3) of the Internal Revenue code of
1986 and the regulations promulgated thereunder as they may now exist
or as they may be hereafter amended.
Professional Memberships (Regular, Lifetime and Honorary)
Professional Membership is for any
researcher, clinician or health care professional interested in CFS
activities. Professionals involved with legal issues or those
involved with not-for-profit or government agencies related to CFS
are also welcome. All professional members are entitled to vote
on all organizational matters that must be approved by the board of
directors. For those applying to be a member, a membership
committee will review each applicant and make a recommendation to the
Board of Directors.
The annual fee for Regular Professional
Membership is $100 with a 2 year Regular Professional Membership fee
of $150. The fee for a Lifetime Professional Membership is
$1,000. All professional members are encouraged to join or
renew at the Lifetime level. Professional members will be
listed on the IACFS/ME website with accessibility only to other
IACFS/ME members unless they specifically opt not to be listed.
Honorary professional members have been
recognized for their special contributions to the battle against CFS
by a two-thirds majority vote by the board of directors. No fee
is required of honorary professional members.
Associate Membership
This category is for students, patients
and their families, and other interested individuals. The
annual fee for Associate Membership is $40 with a 2 year Associate
Membership fee of $60.
Associate members have a non-voting
status with respect to all organizational matters that must be
approved by the board of directors and the Professional Membership.
Associate members will be listed on the IACFS/ME website with
accessibility only to other IACFS/ME members unless they specifically
opt not to be listed.
Supporting Membership
This category is for institutional,
corporations, support groups and individual sponsors.
Supporting members can contribute at the Standard ($200), Bronze
($500), Silver ($1,000), Gold ($2,500) or Platinum ($5,000) levels.
Supporting members can also make donations in any amount to the Rudy
Perpich Memorial Fund, the Junior Investigator Award or the IACFS/ME
General Fund.
Supporting members have a non-voting
status with respect to all organizational matters that must be
approved by the board of directors and the Professional Membership.
Supporting members will be listed on the IACFS/ME website with
accessibility only to other IACFS/ME members unless they specifically
opt not to be listed. There will be a separate listing on the
website for support groups.
The Bulletin of the IACFS/ME is
a peer review online journal that accepts original research papers,
case reports, short notes for rapid communication, reviews of the
literature, and book reviews to stimulate scientific knowledge and
debate. Letters to the Editor are also welcome. Submissions are
encouraged for (a) illness-related fatigue (CFS, cancer, cardiac
disease, MS, depression, etc.); (b) non-disease fatigue, and (c)
occupational fatigue.
UNITED STATES
The CFIDS Association of America
PO Box 220398
Charlotte, NC 28222-0398
800-442-3437 (toll-free telephone)
704-362-2343 (local telephone)
704-365-9755 (fax)
704-365-2343 (resources)
http://cfids.org/cfids (Internet home
page)
info@cfids.org (e-mail)
The CFIDS Association of America is the
largest CFIDS organization in the United States. It publishes the
quarterly, The CFIDS Chronicle, which contains treatment
in formation, articles by leading CFIDS physicians, reports on
national and international CFIDS conferences (including summaries of
the presentations), updates on CFIDS re search, as well as printing
highly informative letters, editorials, and commentaries. The
Association also distributes educational materials and will send a
list of support groups and physicians in your area (send a
self-addressed stamped envelope). The Association makes significant
contributions to research efforts. Donations, which can be
exclusive ly allocated to CFIDS research, are tax-deductible.
Membership is $35.00. Courtesy memberships available.
The National CFIDS Foundation
103 Aletha Rd, Needham Ma 02492
(781) 449-3535
Fax (781) 449-8606
Website: http://www.ncf-net.org/
The Foundation's objective is to fund
research to find a cause, expedite treatments and eventually a cure,
as well as providing information, education, and support to people
who have CFIDS (chronic fatigue and immune dysfunction syndrome also
known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis
(ME) and many other names).
The National CFIDS Foundation's dues
are $30/year for US citizens, $45 for Canadians, $50 international.
(Waivers are available upon request.) Members receive a quarterly
newsletter, The Forum, edited by Gail Kansky, former president of the
Massachusetts CFIDS Association and previous editor of the Mass.
CFIDS Update. The newsletter Includes: submissions from researchers,
clinicians, and patients, medical journal summaries, news from the
research community, reports of presentations by well-known medical
speakers, summaries of CFIDS/ME related lectures, a regularly
featured column by medical advisor Alan Cochetto, a column on
disability issues by Attorney Bernard Kansky
CFIDS and Fibromyalgia Health Resource
1187 Coast Village Road, Suite 1-280
Santa Barbara, CA 93108-2794
800-366-6056 (toll-free telephone)
805-965-0042 (fax)
The CFIDS and Fibromyalgia Health
Resource offers high-quality supplements fre quently recommended for
people with CFIDS and publishes an informative newsletter, Health
Watch, for members. Membership is free.
National Chronic Fatigue Syndrome and
Fibromyalgia Association
3521 Broadway, Suite 222 or
PO Box 18426
Kansas City, MO 64111
816-737-1343 (telephone)
website: http://www.ncfsfa.org/
Email: information@ncfsfa.org
The National CFS Association publishes
a quarterly, Heart of America News, and dis tributes several other
publications at nominal cost. Membership is $25.00 for address es
from the United States and $35 for foreign addresses. The National
CFS Association's board takes the position that there is no treatment
for CFS or fibromyalgia.
PANDORA
(Patient Alliance for
Neuroendocrineimmune Disorders
Organization for Research &
Advocacy)
255 Alhambra Circle
Suite 715
Coral Gables, Florida 33134
HELPLINE at # 954-783-6771
http://www.pandoranet.info/
Our mission is to address and alleviate
many of the issues that affect the quality of life of persons who are
diagnosed with chronic fatigue syndrome (CFS), (also known as chronic
fatigue immune deficiency syndrome (CFIDS) in the U.S., and abroad
also known as M.E. or ME; fibromyalgia syndrome (FMS), Gulf War
illnesses (GWI), multiple chemical sensitivities (MCS) or
environmental illnesses (EI) and persistent Lyme disease (PLD)
Chronic Fatigue Syndrome, Fibromyalgia,
& Chemical Sensitivity Coalition of Chicago (CFCCC)
CFCCC
PO Box 277
Wilmette, IL 60091
PO Box 277
Wilmette, IL 60091
website, www.cfccc.net
phone: (312) 409-5363
CFCCC is organized for the purposes of
support, education, and advocacy for persons with chronic fatigue
syndrome, fibromyalgia, and chemical sensitivity. Support groups for
patients, families, and caregivers; phone buddies;
information/presentations for school nurses, social workers, and
other professions; information and referrals to resources;
newsletter, Canary Times, resource directory; and lending library.
CHILDREN
National Information Center for
Children and Youth With Disabilities
PO Box 1492
Washington, DC 20013
The National Information Center for
Children and Youth With Disabilities provides free information to
assist parents, teachers, caregivers, and others in helping children
become participating members of the community.
CFIDS Youth Alliance
PO Box 220398
Charlotte, NC 28222-0398
800-442-3437 (toll-free telephone)
The CFIDS Youth Alliance (CYA), a
daughter organization of the CFIDS Association of America, was
founded by a 19-year-old girl whose main goals were to expand
aware ness about pediatric CFIDS and to represent the needs and
concerns of people with CFIDS aged 24 years and younger. The CYA
publishes a quarterly newsletter, Youth Allied by CFIDS, available to
CFIDS Association members ($15.00 in U.S.; $20.00 in Canada; $25.00
overseas) and to nonmembers ($20.00 in U.S.; $25.00 in Canada; $30.00
overseas).
Pen-Pals
CFIDS Friendship Network
PO Box 7202
Gainesville, PL 32605
The CFIDS Friendship Network will send
a pen-pal questionnaire to help match you as closely as possible with
a new friend (send a legal-size self-addressed stamped envelope with
$1.00).
CFS Youth Outreach
c/o Sharon Walk
14 Shetland Road
Florham Park, NJ 07932-1813
A pen-pal service for children only.
CFS Youth Outreach also publishes a quarterly newsletter for children
with CFS.
Teen CFIDS Pen-Pal Connection
c/o Connie Howard
1810 Cliffwood Court
New Albany, IN 47150
Teenagers 10 to 19 years old who would
like to write other teens with CFIDS can re ceive a brief
questionnaire to be matched with a teen who shares similar hobbies
and interests (send a self-addressed stamped envelope and 25 cents).
ORGANIZATIONS FOR HEALTH PROFESSIONALS
Medical Professionals/Persons With
CFIDS (MPWC)
Lori Clovis
PO Box 144
Hinsdale, NY 14743
http:/www.geocities.com/HotSprings/2744/
(website)
MPWC, an organization for medical
professionals, publishes the quarterly MPWC News. Subscription is
$10.00 a year. For more information, send a legal-size self-addressed
stamped envelope with a 64-cent stamp.
Gail E. Dahlen, R.N.
50 N. Cecil Avenue
Indianapolis, IN 46219
This group was formed to help develop
advocacy programs, exchange information, and provide mutual support
for health care workers with CFIDS.
Thomas L. English, M.D. PO Box 18267
Asheville, NC 28814
This group would like to hear from
physicians with CFIDS. Tentative goals of the group are advocacy and
physician education.
SUPPORT FOR CFS CAREGIVERS
Well Spouse Foundation
PO Box 801
New York, NY 10023
212-644-1241 (local telephone)
800-838-0879 (toll-free telephone)
REGIONAL ORGANIZATIONS
Note: Many state organizations provide
information packets, referral services, hotlines, and up-to-date
regional information.
Northeast
Massachusetts CFIDS Association
808 Main Street
Waltham,MA02154
The Massachusetts CFIDS organization
distributes several useful CFIDS publica tions for $5.00 each. All
proceeds go to CFIDS research and education.
• CFS: A Primer for Physicians and
Allied Health Professionals (excellent)
• How to Apply for Social Security
Dis ability Benefits If You Have CFS
• Training Manual for CFIDS Support
Groups, CFIDS: Investigating the Mys tery 1.1 (a computer program)
CFS Crisis Center 27 W. 20th Street,
Suite 703 New York, NY 10011 212-691-4800 (telephone)
Greater New York CFS Coalition 880 Pine
Avenue WestIslip,NY11795 516-548-8237 (telephone)
SOUTH
Gulf Coast CFIDS Association 752 J
Avenue Estancias Venice, FL 34292-2316 813-484-0706 (telephone)
MIDWEST
Chicago CFS Association 818 Wenonah
Avenue Oak Park, IL 60304 708-524-9322 (telephone)
Wisconsin CFS Association PO Box 442
Thiensville, WI 53092
WEST
Los Angeles CFIDS Association PO Box
5414 Sherman Oaks, CA 91413 818-785-8301 (telephone) 818-458-9192
(recorded information)
Southern California CFIDS Association,
Inc. 23732 Hillhurst Drive, #U-9 Laguna Niguel, CA 92677 714-249-6976
(telephone)
CFIDS New Mexico PO Box 3642
Albuquerque, NM 87190-3642 505-899-0954 (telephone)
Publishes the CFIDS Update ($10.00).
Utah CFIDS Association, Inc. PO Box
511257 Salt Lake City, UT 84151 801-461-3378 (telephone)
National and International
Organizations 347
CANADA
The M.E. Association of Canada
246 Queen Street, Suite 400
Ottawa, Ontario KIP 5E4, Canada
613-563-1565 (telephone)
613-567-0614 (fax)
http://www.mecan.ca/ (Internet home
page)
info@mccan.ca (e-mail)
The M.E. Association publishes a
monthly newsletter, The MEssenger, distributed throughout Canada,
England, and Australia. The MEssenger contains information about
medical treatment, personal stories about people with CFIDS, articles
(some in French), and book reviews. The Association provides
physician and support group re ferrals on request and houses a
walk-in library with literature on CFS/ME (also avail able worldwide
free of charge on the Internet). Membership is $40.00.
The Nightingale Research Foundation
383 Danforth Avenue
Ottawa, Ontario K2AOE1, Canada
613-728-9643 (telephone)
613-729-0825 (fax)
http://www.cyberus.ca/~bhyde/ (website)
The Nightingale Research Foundation
publishes a quarterly magazine on new medical information about CFIDS
and a comprehensive, 750-page book on medical aspects of CFIDS
(available at a considerable discount for people with CFIDS). It also
conducts research and sponsors public education programs for the
international CFIDS/ME community. Membership is $35.00.
National ME/FM Action Network
3836 Carling Avenue
Hwyl7B
Nepean, Ontario K2H 7V2, Canada
The purpose of this patient support
organization, formed in 1993, is to deal with pa tient issues,
including insurance problems, government, children and the school
sys tem, media, lack of proper medical testing, physician and lawyer
referrals. Dues are $20.00 a year.
UNITED KINGDOM
ME Association of Great Britain
Stanhope House
High Street
Stanford le Hope
Essex SS17 OHA
England
01375-642-466 (telephone)
01375-360-256 (fax)
http://www.compulink.co.uk/~deepings/welcome
(Internet home page)
ME Association Northern Ireland 28
Bedford Street Belfast BT2 7FE Northern Ireland 01232-439-831
(telephone)
ME Association Scotland 52 St. Enoch
Square Glasgow G14AW Scotland 01-41-204-3822 (telephone)
The ME Association is Great Britain's
largest national ME organization. It publishes a quarterly magazine,
Perspectives, runs information and advice lines, distributes free
leaflets, conducts seminars and training sessions, funds research,
and provides advocacy and representation for employment and insurance
problems. Dues are £15 a year (£25 outside the U.K.).
ME Action Campaign PO Box 1126 London
W3 ORY England
Action for ME
PO Box 1302
Wells, Somerset BA5 2WE
England
Dues are £12.5 a year.
NEW ZEALAND
A.N.Z.M.E. Society PO Box 35-429 Browns
Bay Auckland 10 North Island
A.N.Z.Y.M.E., Inc.
PO Box 36307
Northcote
Auckland 1309
North Island
ejoconnl@ihug.co.n2 (e-mail)
Publishes the quarterly magazine,
Meet ing Place. Dues are $35.00 a year.
AUSTRALIA
ANZAMES PO Box 645 Mona Vale, New South
Wales 2103
ME Society of Western Australia PO Box
75
Tuart Hill, Western Australia 6060
61-09-483-6667 (telephone)
ME/CFS Society of New South Wales Royal
South Sydney Community Health Centre
Joynton Avenue, Zetland, New South Wales 2017
61-02-382-8267 (information) 61 -02-906-2906 (social worker)
ME/CFS Society of South Australia PO
Box 383, GPO Adelaide, South Australia 5001 61-08-373-2110
(telephone)
ME/CFS Society of Victoria 23
Livingston Close Burwood, Victoria 61-03-888-8991 (telephone)
ME Syndrome Society of Queensland PO
Box 938 Fortitude Valley, Queensland 4006 61-07-32-5217 (telephone)
EUROPE
ME Fonds
do Hanneke Los, Pres. Kennedylaan 745
1079 MR Amsterdam The Netherlands 31-020-644-5566 (telephone)
31-020-644-5440 (fax) mef@xs4all.nl (e-mail)
ME Lobby
c/o Marc Fluks
de Bosch Kemperpad 136
1054 PM Amsterdam
The Netherlands
31-020-618-9095 (telephone)
melobby@dds.nl (e-mail)
ME Stichting Robert Scottsstraat 4 1056
AX Amsterdam The Netherlands
Ms. Alice Vertomme
Dorp 7
322 Niew Rode
Belgium
32-16-570983 (telephone)
Danish ME/CFS Association c/o A Midsem
Maglehoj 86 DK - 3520 Farum Denmark
Norges M.E.
Forening
Eikveien 96A
1345 Osteras
Norway
47-2-2 (telephone)
Selbsthilfegruppe CFS-Syndrome
c/o Birke Steinitz
An St. Swidbert 52, D-40489
Duesseldorf
Germany
49-211-404376 (telephone)
C.F.S. Associazione Italia Segretaria:
Via Moimacco 20 33100Udin Italy
ORGANIZATIONS FOR RELATED CONDITIONS
American Academy of Allergy and
Immunology 611 East Wells Street Milwaukee, WI 53202 800-822-2762
(toll-free telephone)
or
800 East Northwest Highway, Suite 1080
Palatine, IL 60067-6516 847-427-1200 (hotline)
American Chronic Pain Association
Outreach PO Box 850 Rocklin, CA 95677 916-632- 0922 (telephone
)
)
American Sleep Disorders Association
1610 14th Street NW, Suite 300 Rochester, MN 55901
Arthritis Foundation
PO Box 19000
Atlanta, GA 30326
800-283-7800 (toll-free telephone)
Asthma Information Line PO Box 1766
Rochester, NY 14603 800-727-5400 (toll-free telephone)
Candida Research Foundation 1638 B
Street Haward,CA94511 510-582-2179 (telephone)
Chemical Injury Information Network PO
Box 301, White Sulphur Springs, MD 59645-0301
406-547-2255 (telephone)
Environmental Health Association 1800
S. Robertson Blvd., Suite 380 Los Angeles, CA 90035 301-837-2048
(telephone)
Environmental Health Network PO Box
1155 Larkspur, CA 94977 415-541-5075 (telephone)
Fibromyalgia Network 5700 Stockdale
Hwy, #100 Bakersfield, CA 93309 805-631-1950 (telephone)
Food Allergy Network 10400 Eaton Place,
Suite 107 Fairfax, VA 22030-5647 800-929-4040 (telephone)
Human Ecology Action League PO Box
49126 Atlanta, GA 30359 404-248-1898 (telephone)
Lupus Foundation of America 4 Research
Place, Suite 180 Rockville, MD 20850-3226
National Center for Environmental
Health Strategies 1100 Rural Avenue Voorhees, NJ 08043 609-429-5358
(telephone)
National Chronic Pain Association 7979
Old Georgetown Road, Suite 100 Bethesda, MD 20814-2429 301-652-4948
(telephone)
National Foundation of Chemical
Hypersensitivities and Allergies PO Box 222 Ophelia, VA 22530
804-453-7538 (telephone)
National Gulf War Resource Center, Inc.
1224 M Street NW Washington, DC 20005 202-628-2700, ext. 162
(telephone)
202-628-6997 (fax) gulfvet@fwbell.net
(e-mail) www.gulfwar.org/resourcecenter/ (website)
National Organization for Rare
Disorders
PO Box 8923
New Fairfield, CT 06812-8923
203-746-6518 (local telephone)
800-999-6673 (toll-free telephone)
National Organization for Seasonal
Affective Disorder PO Box 40133 Washington, DC 20016
Rheumatoid Arthritis Foundation
615-646-1030 (telephone)
Sjogren's Syndrome Foundation, Inc. 333
N. Broadway, Suite 2000 Jericho, NY 11753 516-933-6365 (local
telephone) 800-475-6473 (toll-free telephone) 516-933-6368 (fax)
http://www.sjogrens.com (website)
Society for Mitral Valve Prolapse
Syndrome PO Box 431 Itasca,IL 60143-0431
OTHER USEFUL ORGANIZATIONS
Government Entitlement Services 23930
Michigan Avenue Dearborn, MI 48124 800-628-2887 (toll-free telephone)
Benefits Resource Network Kennedy
Krieger Institute 2911 East Biddle Street Baltimore, MD 21213
410-767-7452 (telephone)
Clearinghouse on Disability Information
Office of Special Education and
Rehabilitation Services
U.S. Department of Education
Room 3132, Switzer Building
Washington, DC 20202
202-205-8241 (telephone)
U.S. Social Security Administration
800-772-1213 (7:00 am to 7:00 PM
weekdays)
The Social Security Administration pays
disability benefits under two programs: the Social Security
Disability Insurance Program and the Supplemental Security Income
(SSI) Program. Medical requirements for both programs are the same.
Eligibility for Social Security is based on prior work history and
SSI benefits are based on financial need. Most people with CFIDS who
apply for Social Security are denied once or twice and must go
through an appeals process.
National Organization of Social
Security Claimants Representatives
(a lawyer referral service)
800-431-2804 (telephone)
Most people have greater success with
experienced lawyers than with filing their own appeals. Lawyers who
process Social Security appeals usually charge a percentage of back
payments owed you by the government (if your appeal is successful).
APPENDIX C: CFIDS CLINICS, CLINICIANS, AND
LABORATORIES
The following is a list of clinics,
clinicians, and researchers who have made contribu tions in the area
of CFIDS treatment. It is by no means a complete list. A
comprehensive di rectory is currently being marketed by Morgan-Rand
Publishing in association with the CFIDS Association of America. It
includes caregivers, physicians, clinics, hospitals, support groups,
and advocacy groups for CFIDS in the United States. It is available
through the CFIDS Association for $19.95 (for members) or can be
purchased directly from Morgan-Rand Publishing for $34.90. For more
information call 215-938-5511.
If you are seeking a clinician, either
to diagnose or treat CFIDS, we strongly recom mend you contact the
appropriate national organization (see Appendix B) and ask for a
listing of local support groups. Since most specialists require that
you have a local primary health care physician to monitor treatments,
it is well worth the effort to find a cooperative physician before
you seek the services of a specialist. Your local support group
leader should be able to provide a listing of recommended physicians
in your area.
DATABASES FOR LOCATING DOCTORS
http://www.chronicfatiguetreatments.com/wordpress/
UNITED STATES
Dr. Majid Ali
Institute of Integrative Medicine 140 West End Avenue
Suite 1H
New York, NY 100023
212-873-2444
or
Institute of Integrative Medicine 140 West End Avenue
Suite 1H
New York, NY 100023
212-873-2444
or
New Jersey
95 East Main Street
Denville, NJ 07834
973-586-4111
95 East Main Street
Denville, NJ 07834
973-586-4111
(Does not accept insurance)
David S. Bell, MD
12851 Roosevelt Highway
Lyndonville, NY 14098
LynNews@DavidSBell.com http://www.davidsbell.com/
12851 Roosevelt Highway
Lyndonville, NY 14098
LynNews@DavidSBell.com http://www.davidsbell.com/
(very informative website, also
publishes Lyndonville News)
SHEILA BASTIEN, Ph.D.
neuropsychologist
2126 Los Angeles Avenue
Berkley, CA 94707-2618
Berkley, CA 94707-2618
Tel: (510) 526-7391
510-525-9601
Center for Progressive Medicine Steven
Bock, M.D., and Kenneth Bock, M.D., Directors Pinnacle Place, Suite
210 10 McKown Road Albany, NY 12203 518-435-0082 (telephone)
or
Rhinebeck Health Center 108 Montgomery
Street Rhinebeck, NY 12572 914-876-7082 (telephone)
Center for Specialized Immunology 400
Arthur Godfrey Road, Suite 504 Miami Beach, FL 33140 305-672-5009
(telephone)
Chronic Fatigue Clinic
Dedra Buchwald, M.D., Director
Harborview Medical Center ZX-21
325 Ninth Avenue, 5 South, Room 36
Seattle, WA 98104
206-731-3111 (telephone)
Chronic Fatigue and Immune Disorder
Center Patricia Salvato, M.D., Medical Director 4140 Southwest
Freeway Houston, TX 77027 713-961-7100 (telephone)
Chronic Fatigue Syndrome Center
Benjamin Natelson, M.D., Director 90 Bergen Street, Suite 4100
Newark, NJ 07103-2499 201-982-2552 (telephone)
Chronic Fatigue Syndrome Institute Jay
Goldstein, M.D., Director 6200 East Canyon Rim Road, Suite HOD
Anaheim Hills, CA 92807 714-998-2780 (telephone)
Alexander Chester, M.D. 3301 New Mexico
Avenue NW, #348 Washington, DC 20016 202-362-4467 (telephone)
Kristina Dahl, M.D. 133 East 73rd
Street New York, NY 10021 212-861-9000 (telephone)
Environmental Health Center 8345 Walnut
Hill Lane, Suite 220 Dallas, TX 75231 214-368-4132 (telephone)
www.ehcd.com (website)
Fatigue Clinic of Michigan Edward
Conley, M.D., Director G3494 Beecher Road Flint, MI 48522
810-230-8677 (telephone)
Fibromyalgia Center Paul Lasky, M.D.,
Director 747 Chestnut Ridge Road Chestnut Ridge, NY 10977
914-578-1758 (telephone)
Jorge Flechas, M.D. 724 5th Avenue West
Hendersonville, NC 28739 704-693-3015 (telephone)
Fred Friedberg, Ph.D. (psychologist) 6
Yorktown Road Setauket,NY11733 516-751-4924 (telephone)
or
111 Lambert Road Sharon, CT 06069
860-364-1107 (telephone)
Leo Galland, M.D. 133 East 73rd Street
New York, NY 10021 212-861-9000 (telephone)
Michael Goldberg, M.D. (pediatric
CFIDS) 5620 Wilbur Avenue, Suite 318 Tarzana,CA 91356 818-343-1010
(telephone)
Don Goldenberg, M.D. (fibromyalgia)
Newton-Wellesley Hospital 2000 Washington Street, Suite 304 Newton,
MA 02162 617-243-5440 (telephone)
Linda Miller Iger, Ph.D. Chronic
Fatigue Syndrome Institute 6200 East Canyon Rim Road, Suite 110D
Anaheim Hills, CA 92807 714-998-2780 (telephone)
James Jones, M.D.
National Jewish Medical and Research
Center
1400 Jackson Street Denver, CO 80206
303-388-4461 (telephone)
Nancy Klimas, M.D. Director, Diagnostic
Immunology Clinic and Center for Specialized Immunology 400 Arthur
Godfrey Road, Suite 504 Miami Beach, FL 33140 305-672-5009
(telephone)
Anthony Komaroff, M.D.(not accepting
new patients) Chief, Division of General Medicine Harvard Medical
School Brigham and Women's Hospital 75 Francis Street Boston, MA
02115 617-732-6077 (telephone)
Charles Lapp, M.D. 10724 Park Road
Bldg. 100, Suite 105 Charlotte, NC 28210 704-543-9692 (telephone)
Susan Levine, M.D. 200 West 86th Street
New York, NY 10021 212-472-4816 (telephone)
or
889 Lexington Avenue New York, NY 10021
212-472-4816 (telephone)
Mark Loveless, M.D. Oregon Health
Sciences University Division of Infectious Diseases 3181 SW Jackson
Park Road Portland, OR 97201 503-494-8311 (telephone)
Daniel Peterson, M.D. Sierra Internal
Medicine 865 Tahoe Blvd., Suite 306 Incline Village, NV 89451
702-832-0989 (telephone) mailing address: PO Box 7870 Incline
Village, NV 89452
Sigita Plioplys, M.D., and Audrius
Plioplys, M.D. (research) CFS Center Mercy Hospital Chicago, IL 60616
312-445-0123 (telephone)
Richard Podell, M.D. 571 Central
Avenue, Suite 106 New Providence, NJ 07974 908-464-3800 (telephone)
Michael Rosenbaum, M.D., and Murray
Susser, M.D. 2730 Wilshire Blvd., Suite 110 Santa Monica, CA 90403
310-453-4424 (telephone)
I. Jon Russell, M.D., Ph.D.
(fibromyalgia) Director, Brady-Green Clinical Research Center
University of Texas Health Science Center San Antonio, TX 78284 210-358-4000 (telephone)
University of Texas Health Science Center San Antonio, TX 78284 210-358-4000 (telephone)
Jay Seastrunk, M.D. 102 East Freeman
Street Duncanville,TX75116 972-709-4834 (telephone)
Neil Singer, M.D. (internist) Sedona
Medical Center 3700 W. Highway 89-A Sedona, AZ 86336 520-204-4900
(telephone)
Thomas Steinbach, M.D. 902 Frostwood,
Suite 243 Houston, TX 77024 713-467-6471 (telephone)
Jacob Teitelbaum, M.D. 139 Old Solomons
Island Road Annapolis, MD 21401 410-224-2222 (telephone)
Ruth Walkotten.D.O. 427 W.Seminole Road
Muskegon, MI 49441 616-733-1989 (telephone)
CANADA
Environmental Clinic
PO Box 1230
Fall River, Nova Scotia B2T 1K6
902-860-0057 (telephone)
Nightingale Research Foundation Byron
Hyde, M.D., and Anil Jain, M.D. 121 lona Street Ottawa, Ontario K2A
OE3
Post-Polio Syndrome, CFS, Fibromylagia
Clinic
Beverly Tompkins, M.D. 1228 Kensington
Road, NW Main Floor, Kensington Professional Center Calgary, Alberta
T2N4P9 403-270-6896 (telephone)
UNITED KINGDOM
Ted Dinan Professor, Department of
Psychological Medicine St. Bartholomew's Hospital (Medical College)
West Smithfield London, England 0171-601-8138 (telephone)
Leslie Findley, M.D. Devonshire
Hospital 29-31 Devonshire Street London, England 0171-486-7131
(telephone)
Immunosciences Lab, Inc.
8730 Wilshire Blvd., Suite 305
Beverly Hills, CA 90211
800-950-4686 (toll-free telephone)
310-657-1077 (local telephone)
Tests for mycoplasma incognitas,
Rnase-L inhibitor, immune system panel for CFIDS, viral panel for
CFIDS (Epstein-Barr virus, human herpesvirus 6, cytomegalovirus),
natural killer cells, interferon, Candida.
Metametrix Clinical Laboratory
http://www.metametrix.com/content/Home
Metametrix is recognized
internationally as a pioneer and leader in the development of
metabolic, toxicant, and nutritional testing. The mission of
Metametrix is to improve health worldwide by providing clinical
laboratory tests that identify nutritional imbalances and toxicities
underlying chronic diseases
Our customer service representatives
are available between 8:00 AM and 6:00 PM (GMT -4), Monday-Friday.
Phone
770-446-5483
800-221-4640
Fax
770-441-2237
Email
inquiries@metametrix.com
Address
Metametrix Clinical Laboratory
3425 Corporate Way
Duluth, GA 30096
3425 Corporate Way
Duluth, GA 30096
Genova Diagnostics
http://www.genovadiagnostics.com/
Genova Diagnostics
63 Zillicoa Street
Asheville, NC 28801
USA
63 Zillicoa Street
Asheville, NC 28801
USA
Telephone: 800-522-4762
Local Telephone: 828-253-0621
Local Telephone: 828-253-0621
Fax: 828-252-9303
VIP Dx
5625 Fox Avenue, Suite 369
Reno, NV 89506
5625 Fox Avenue, Suite 369
Reno, NV 89506
Phone: (775) 351-1890
Fax: (775) 682-8517
E-mail: info@vipdx.com
Fax: (775) 682-8517
E-mail: info@vipdx.com
Client Relation Hours
9:00 a.m. - 5:00 p.m. (PST)
R.E.D. Laboratories N.V./S.A.
Z.1 Researchpark 100
B-1731 Zellik
Belgium
Phone: +32-(0)2-481-5310
Fax: +32-(0)2-481-5311
Z.1 Researchpark 100
B-1731 Zellik
Belgium
Phone: +32-(0)2-481-5310
Fax: +32-(0)2-481-5311
VAT/BTW/TVA: BE 462 648 824
Client relation hours: 9 a.m. to 4 p.m.
APPENDIX D: MAIL-ORDER SUPPLIERS
NUTRITIONAL SUPPLEMENTS
Bronson
1945 Craig Road, PO Box 46903
St. Louis, MO 63146-6903
800-235-3200 (toll-free telephone)
314-469-5741 (fax)
Reasonably priced vitamins, amino
acids, herbs, personal care products, digestive aids, minerals, and
antioxidants obtained directly from the manufacturer.
CFIDS and Fibromyalgia Health Resource
1187 Coast Village Road, Suite 1-280
Santa Barbara, CA 93108-2794
800-366-6056 (toll-free telephone)
High-quality vitamins, minerals, amino
acids, CoQIO, and other food supplements used by people with CFIDS. A
portion of the profits goes to support CFIDS research.
L&H Vitamins
37-10 Crescent Street
Long Island City, NY 11101
800-221-1152 (toll-free telephone)
Name-brand vitamins, minerals,
probiotics, enzymes, and food supplements at 20% to 40% discount;
large selection, fast delivery.
NEEDS Catalogue 527 Charles Avenue,
Suite 12-A Syracuse, NY 13209 800-634-1380 (toll-free telephone)
315-488-6336 (fax)
A huge selection of brand-name
vitamins, supplements, herbs, Bach remedies, and glandular
preparations at a discount.
Sun-Ray Supply
524 Shamrock Lane
Dawsonville, GA 30534
800-437-1765 (toll-free telephone)
706-265-4680 (fax)
Sublingual CoQIO troches, Reliv,
UltraClear, oral spray vitamins, probioplex, pycnogenol, vitamins,
minerals, herbs, water and air filters, and other natural products
for people with CFIDS.
Trans-Pacific Health Products
3934 Central Avenue
St. Petersburg, FL 33711
800-336-9636 (toll-free telephone)
Chinese herbs for sinus infections,
allergies, yeast control, low blood sugar, PMS, arthritis, flu and
colds, alertness, eyes, circulation, herpes, headaches, immune
system, hair loss, liver function, and more.
Vitacost
Wellness Health & Pharmaceuticals
2800 South 18th Street
Birmingham, AL 35209
800-227-2627 (toll-free telephone)
National brands, including Allergy
Research Group, Kal, Montana Naturals, Nature's Way, Natrol, Schiff,
Twinlab, Kyolic, Cardiovascular Research Ltd., and Rainbow Light, at
a discount.
Willner Chemists 100 Park Avenue New
York, NY 10017 800-633-1106 (toll-free telephone) 212-685-2538 (local
telephone) 212-685-0441 (local telephone)
Wide selection of specialty
supplements, personal care products, herbs, and naturopathic
remedies.
NONTOXIC HOME AND HEALTH PRODUCTS
AFM Enterprises, Inc.
IHOStacyCourt
Riverside, CA 92507
714-781-6860 (telephone)
Nontoxic paints, stains, waxes,
enamels, adhesives, caulking, carpet guards, mildew control, and
other products especially formulated for people with chemical
sensitivities
Allergy Resources, Inc.
557 Burbank Street, Suite K
Broomfield, CO 80020
800-873-3529 (800-USE-FLAX) (toll-free
telephone)
Air purifiers, food products,
supplements, Lifespan vitamin protocols, natural cosmet ics, cotton
bedding, cleaning products, kitchen aids, water filters, and books
for people with allergies and multiple chemical sensitivities.I
Auro Organic Paints
Sinan Co. Natural Building Materials
PO Box 181
Suisun City, CA 94585
707-427-2325 (telephone)
Manufactures paints, varnishes, waxes,
glues, cleansers, and polishes made from beeswax, natural oils,
chalk, plants, and other natural ingredients.
The Body Shop 106 Iron Mountain Road
Mine Hill, NJ 07803 201-984-2536 (local telephone) 800-541-2535
(toll-free telephone)
Cosmetics, lotions, shampoos, soaps, body brushes, and other personal care products.
Cosmetics, lotions, shampoos, soaps, body brushes, and other personal care products.
CFIDS and Fibromyalgia Health Resource
1187 Coast Village Road, Suite 1-280 Santa Barbara, CA 93108-2794
800-366-6056 (toll-free telephone)
Nontoxic cleaners, soaps, shampoos,
skin lotions, deodorants, and other chemical-free personal and home
products.
Coast Filtration 142 Viking Avenue
Brea,CA 92621 714-990-4602 (telephone) 714-990-3951 (telephone)
Reverse osmosis and carbon water
filtration systems and ultraviolet lights. The staff is very helpful.
KB Cotton Pillows, Inc. PO Box 57
DeSoto,TX 75123 800-544-3752 (toll-free telephone)
All natural cotton pillows (even the
thread).
Living Source
Products for the Chemically Sensitive
PO Box 20155
Waco, TX 76702
817-776-4878 (local telephone)
800-662-8787 (voice mail)
817-776-9329 (fax)
Large selection of personal care
products, cotton mattresses, pillow covers, blankets, books, charts,
pet care products, oxygen equipment, cotton masks, air and water
filters, moisture absorbers, ozone purification systems, room
heaters, juicers, water softeners, vacuums, cleaners, gardening
products, and nontoxic building supplies. Many unusu al and
hard-to-get products.
Livos Plant Chemistry 2641 Cerrillos
Road Santa Fe,NM 87501 505-988-9111 (telephone)
Manufactures paints, oil finishes,
shellacs, stains, varnishes, adhesives, thinners, waxes, and polishes
made from natural ingredients.
The Natural Bedroom
PO Box 2048
Sebastopol, CA 95472-2048
800-365-6563 (toll-free telephone)
707-823-0106 (fax)
Natural and organic cotton products for
the bedroom, including camisoles, night shirts, bathrobes, towels,
rugs, sheets, pillows, comforters, mattresses, and box springs.
NEEDS Catalogue
527 Charles Avenue, Suite 12-A
Syracuse, NY 13209
800-634-1380 (toll-free telephone)
315-488-6336 (fax)
Large selection of cosmetics, household
products, paints, air purifiers, water filters, and other products
for people with chemical sensitivities. No order is too small.
Nigra Enterprises 5699Kanan,#123 Agoura
Hills, CA 91301 818-889-6877 (telephone)
Water purification systems (carbon,
reverse osmosis, home distillation), ultraviolet lights. Information
given over the telephone.
Nontoxic Environments PO Box 384
Newmarket, NH 03857 800-789-4348 (toll-free telephone)
Nontoxic building supplies, air niters,
water purifiers, cleaning products, books, videos, supplements, and
more.
The Old Fashioned Milk Paint Company
436 Main Street
Groton, MA 01450-0222
508-448-6336 (telephone)
508-448-2754 (fax)
Manufactures milk paint from milk
protein, lime clay, and earth pigments; contains no lead, chemical
preservatives, fungicides, or petrochemicals (available in 16
colors).
Priorities
70 Walnut Street
Wellesley, MA 02181
800-553-5398 (toll-free telephone)
HEPA vacuums, water purifiers, lead,
radon, and carbon dioxide testing kits, window air filters, and other
products designed for people with allergies.
Real Goods
555 Leslie Street
Ukiah, CA 95482-5507
800-762-7325 (toll-free telephone)
Nontoxic personal care products, face
masks, laundry disks, dioxin-free paper prod ucts, solar and other
environmentally conscious products.
Seventh Generation
360 Interlocken Blvd., Suite 300
Broomfield, CO 80021
800-456-1177 (toll-free telephone)
Biodegradable soaps, natural shoe
polishes, water filters, natural shampoos, and per sonal care
products.
Audiotapes
Sounds True Catalogue
PO Box 8010
Boulder, CO 80306-8010
800-333-9185 (toll-free telephone)
303-665-3151 (local telephone)
Self-help, psychology, meditation,
inspirational, alternative health, and music with Deepak Chopra,
Thich Nhat Hanh, Desmond Tutu, Ram Dass, Sogyal Rinpoche, and other
spiritual luminaries. Over 300 audiotapes and videotapes.
Green Island Productions, Inc. PO Box
368 Greenfield,MA01301 800-438-0956 (toll-free telephone)
Novels, poetry, history, interviews,
science fiction, health. Hundreds of titles for sale or rent. Call
for a free brochure.
BIBLIOGRAPHY
BIBLIOGRAPHY
GENERAL
Book of the Body: The Way Things Work.
New York: Simon & Shuster, 1979.
Berne, Katrina H. Running on Empty:
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Alameda, Calif.:
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Hawk, Philip B, Oser, Bernard, and
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Scientific Basis of ME/CFS. Ottawa, Ontario: Night ingale Research
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Lehninger, Albert L. Biochemistry. New
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Treatments
Balch, James F, and Balch, Phyllis A.
Prescription for Nutritional Healing. Garden City Park, N.Y.: Avery
Publishing Group, 1990.
Complete Drug Reference. New York:
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Emmaus, Pa.: Rodale Press, 1990. Kastner, Mark. Alternative Healing.
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Stanway, Andrew. Alternative Medicine:
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Winter, Ruth. A Consumer's Dictionary
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CHAPTER 1: THE MANY FACES OF CFIDS
Ali, Majid. The Canary and Chronic
Fatigue. Denville, N.J.: Life Span Press, 1994. Anderson, Dean.
Recovery From CFIDS. CFIDS Chronicle, Winter 1996, pp 27-29.
Johnson, Hillary. Journey Into Fear:
The Growing Nightmare of Epstein-Barr Virus. Roll ing Stone, July 30
and August 13,1987.
Johnson, Hillary. Osier's Web: Inside
the Labyrinth of the Chronic Fatigue Syndrome Epi demic. New York:
Crown Publishers, 1996.
Kenney, Kirn. Treating CFIDS: Still
More Art Than Science. CFIDS Chronicle, Winter 1994, pp 22-28.
Mangano, Joe. Could CFIDS Be a
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Rogers, Sherri. Tired or Toxic?
Syracuse, N.Y.: Prestige Publishers, 1990.
Suhadolnick, Robert J, Peterson, Daniel
L, et al. Biochemical Evidence for a Novel Low Molecular Weight
2-5A-Dependent RNase L in Chronic Fatigue Syndrome. Journal of
Interferon and Cytokine Research 17(7):377-385,1997.
CHAPTER 3: SPECIFIC SYMPTOMS AND
TREATMENT TIPS
Airola, Paavo. Hypoglycemia: A Better
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Prescription for Nutritional Healing. Garden City Park, N.Y.: Avery
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Baranowki, Zane. Colloidal Silver: The
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Bell, David. The Disease of a Thousand
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1994.
Benson, Herbert. The Relaxation
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Blau, Sheldon Paul, and Schultz, Dodi.
Lupus: The Body Against Itself. New York: Dou-bleday and Company,
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Bloom, Floyd E, Lazerson, Arlyne, and
Hofstader, Laura. Brain, Mind and Behavior. New York: W.H. Freeman
and Co., 1985.
Bou-Holaigah, Issam, Rowe, Peter C,
Ran, Jean, and Calkins, Hugh. The Relationship Be tween Neurally
Mediated Hypotension and the Chronic Fatigue Syndrome. Journal of the
American Medical Association 274(12):961-967,1995.
Browning, David J. Eye Problems and
CFIDS. CFIDS Chronicle, 1988 Compendium, pp 17-19.
Buchwald, Dedra. Comparison of Patients
With Chronic Fatigue Syndrome, Fibromyal-gia, and Multiple Chemical
Sensitivities. Archives in Internal Medicine 154(18):2049-2053,1994.
Carpman, Vicki. CFIDS Treatment: The
Cheney Clinic's Strategic Approach. CFIDS Chronicle, Spring 1995, pp
38-45.
Chalker, Rebecca, and Whitmore,
Kristene. Overcoming Bladder Disorders. New York: Harper & Row,
1990.
Chalmers, Andrew, Littlejohn, Geoffrey
Owen, Salit, Irving E, and Wolfe, Frederick, eds. Fibromyalgia,
Chronic Fatigue Syndrome, and Repetitive Strain Injury: Current
Concepts in Diagnosis, Management, Disability, and Health Economics.
Binghamton, N.Y.: Haworth Medical Press, 1995.
Cheney, Paul. Proposed Pathophysiologic
Mechanism of CFIDS. CFIDS Chronicle, Spring 1994, pp 1-2.
Cheney, Paul. Midwest CFIDS Conference.
CFIDS Chronicle, Summer 1996, pp 63-65.
Chester, Alexander. Chronic Fatigue of
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Dr. Jay A. Goldstein's Betrayal by the Brain. Binghamton, N.Y.:
Haworth Medical Press, 1996.
Crook, William. Chronic Fatigue
Syndrome and the Yeast Connection. Jackson, Tenn.: Professional
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Cunha, Burke. Crimson Crescents: A
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Demitrack, Mark A, Dale, Janet K,
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Chrousos, George P, and Gold, Philip W. Evidence for Impaired
Activation of the Hypothalamic-Pituitary-Adrenal Axis in Patients
With Chronic Fatigue Syn drome. Journal of Clinical Endocrinology and
Metabolism 73:1224-1234,1991.
The Doctor's Book of Home Remedies.
Emmaus, Pa.: Rodale Press, 1990.
Duchene, Lucy. CFS: Influence of
Histamine, Hormones and Electrolytes. CFIDS Chron icle, Summer 1993,
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Fan, Thim Peng, and Blanton, Margaret
Ellen. Clinical Features and Diagnosis of Fibro-myalgia. Journal of
Musculoskeletal Medicine April:24-42,1992.
Fisher, Gregg Charles. Chronic Fatigue
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With This Debilitating Illness. New York: Warner Books, 1989.
Flechas, Jorge. Yeast and the CFIDS
Patient. CFIDS Chronicle, Summer/Fall 1989, pp 40-42.
Gillespie, Larrian. You Don't Have to
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Goldstein, Jay A. Dysfunctional
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Goldstein, Jay A. The Diagnosis of
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Goldstein, Jay A. Physician's Forum.
CFIDS Chronicle, Fall 1993.
Goldstein, Jay A. Could Your Doctor Be
Wrong? New York: Pharos Books, 1991.
Goldstein, Jay A. Betrayal by the
Brain. Binghamton, N.Y.: Haworth Medical Press, 1996.
Guillory, Gerard. IBS: A Doctor's Plan
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Hyde, Byron M, ed. The Clinical and
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Israel, Leon. Premenstrual Tension.
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Janowitz, Henry D. Your Gut Feelings.
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Jovanovic, Lois, and Subak-Sharpe,
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Krohn, Jacqueline. The Whole Way to
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Kuratsune, Hirohiko, and Plioplys,
Audrius. Muscle and Mitochondia Studies CFIDS Chronicle, Winter 1995,
pp 66.
Lauersen, Niels, and Stukane, Eileen.
PMS and You: What It Is, How to Recognize It, and How to Overcome It.
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LeRoy, Jim, Haney Davis, Trina, and
Jason, Leonard A. Treatment Efficacy: A Survey of 305 MCS Patients.
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Lieberman, Allan. The Role of Rubella
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VII(3):51-54,1990.
Loblay, Robert H, and Swain, Anne R.
The Role of Food Intolerance In Chronic Fatigue Syndrome. In Hyde,
Byron M, ed. The Clinical and Scientific Basis of ME/CFS. Ottawa,
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McCoy, James. Immunomodulatory
Properties of DHEA as a Potential Treatment for CFIDS. CFIDS
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Moldofsky, Harvey. Sleep, Neuroimmune
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Nelson, Philip K. Fingerprint "Loss"—Is
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Norris, Ronald, with Sullivan, Colleen.
PMS/Premenstrual Syndrome. New York: Rawson Associates, 1983.
Ornstein, Robert, and Thompson, Richard
F. The Amazing Brain. Boston: Houghton Mifflin Co., 1984.
Orr, William C, Altshuler, Kenneth Z,
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Patarca, Roberto, Klimas, Nancy,
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Pellegrino, Mark J. The Fibromyalgia
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Pisetsky, David S. The Duke University
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Poland, Russell. Research Conference.
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Randolph, Theron. Human Ecology and
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Charles C Thomas, 1962.
Rapoport, Alan, and Sheftell, Fred.
Headache Relief. New York: Simon & Sinister, 1990. Restak,
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Receptors. New York: Bantam, 1994. Restak, Richard. Brainscapes. New
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Rosenbaum, Michael, and Susser, Murray.
Solving the Puzzle of Chronic Fatigue Syn drome. Tacoma, Wash.: Life
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Rowe, Peter C, Bou-Holaigah, Issam,
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Sheppard, Leslie, and Hawkridge, Audry.
Tinnitus: Learning to Live With It. Bath, England: Ashgrove Press,
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Starlanyl, Devin, and Copeland, Mary
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Thompson, W Grant. Gut Reactions:
Understanding the Symptoms of the Digestive Tract.New York: Plenum
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Thomsen, Thomas. Shingles. New York:
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Wood, Lawrence C, Cooper, David S, and
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Wurtman, Judith J. The Serotonin
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Overcoming Migraine. Barrytown, N.Y.: Station Hill Press, 1991.
CHAPTER 4: PHARMACEUTICALS AND
PRESCRIPTION DRUGS
Ablashi, DV, Bernman ZN, Lawyer C,
Kramorsky B, Ferguson DM, Komaroff AL. Antiviral Activity In Vitro of
Kutapressin Against Human Herpesvirus 6. In Vivo 8(4):581-586, 1994.
Ablashi, DV, Bernman, Z, et al.
Kutapressin Inhibits In Vitro Infection of Human Herpesvirus Type 6.
Clinical Infectious Diseases 18(Suppl 1):S113,1994.
Ablashi, DV, Bernman, Z, et al.
Poly(I)-Poly(C12U) Inhibits In Vitro Replication of Hu man
Herpesvirus 6. Clinical Infectious Diseases 18(Suppl 1):S113,1994.
Bell, David. The Doctor's Guide to
Chronic Fatigue Syndrome. New York: Addison-Wesley Publishing Co.,
1994.
Bou-Holaigah, Issam, Rowe, Peter C,
Kan, Jean, and Calkins, Hugh. The Relationship Be tween Neurally
Mediated Hypotension and the Chronic Fatigue Syndrome. Journal of the
American Medical Association 274(12):961-967,1995.
Brooks, Barbara, and Smith, Nancy.
CFIDS, An Owner's Manual. Silver Spring, Md.: BBNS Publishers, 1990.
Carpman, Vicki. CFIDS Treatment: The
Cheney Clinic's Strategic Approach. CFIDS Chronicle, Spring 1995, pp
38-45.
Carpman, Vicki. Cough Syrup for Pain?
CFIDS Chronicle, Fall 1996, pp 46-47. Cheney, Paul. Physician's
Forum. CFIDS Chronicle, 1991, pp 2-6.
Conley, Edward J. Treatment of HHV-6
Reactivation in CFIDS. CFIDS Chronicle, Fall 1993, pp 15-17.
Crook, William G. Chronic Fatigue
Syndrome and the Yeast Connection. Jackson, Tenn.: Professional
Books, 1992.
Crook, William G. The Yeast Connection:
A Medical Breakthrough. Jackson, Tenn.: Pro fessional Books, 1986.
Demitrack, Mark A, Dale, Janet K,
Straus, Stephen E, Laue, Louisa, Listwak, Sam J, Dreusi, Markus JP,
Chrousos, George P, and Gold, Philip W. Evidence for Impaired
Activation of the Hypothalamic-Pituitary-Adrenal Axis in Patients
With Chronic Fatigue Syn drome. Journal of Clinical Endocrinology and
Metabolism 73:1224-1234,1991.
DeVinci, C, Levine, PH, Pizza, G, et
al. Lessons From a Pilot Study of Transfer Factor in Chronic Fatigue
Syndrome. Biotherapy 9:87-90,1996.
Filsinger, Joan D. Coughing up CFIDS; A
Patient's Fjcperience With Guaifenesin. The Mass CFIDS Update, Summer
1996, p 10.
Fisher, Gregg. Chronic Fatigue
Syndrome; A Comprehensive Guide to Symptoms, Treat ments, and Solving
the Practical Problems of CFS. New York: Warner Books, 1997.
Flechas, Jorge. A Theoretical Paper on
CFS and Oxytocin. CFIDS Chronicle, Spring 1995, pp 49-52.
Friedberg, Fred. Coping With Chronic
Fatigue Syndrome: Nine Things You Can Do. Oakland, Calif.: New
Harbinger Publications, 1990.
Goldstein, Jay A. Betrayal by the
Brain. Binghamton, N.Y.: Haworth Medical Press, 1996.
Goldstein, Jay A. Chronic Fatigue
Syndrome: The Limbic Hypothesis. Binghamton, N.Y.: Haworth Medical
Press, 1993.
Goldstein, Jay A. The Evolving
Hypothesis: The Role of the Suppressor T Cell in CFIDS. CFIDS
Chronicle, 1988 Compendium, pp 7-10.
Goldstein, Jay A. The Evolving
Hypothesis DC: Toward a New Decade. CFIDS Chronicle, Spring/Summer
1990, pp 48-53.
Goldstein, Jay A. The Neuropharmacology
of Chronic Fatigue Syndrome. CFIDS Chron icle, Fall 1993, pp 24-27.
Goldstein, Jay A. New Treatments for
CFS. CFIDS Chronicle, Summer 1994, pp 2-6.
Goldstein, Jay A. Nitroglycerin: A
Potential Mediator for Hypoperfusion in CFS. CFIDS Chronicle, Summer
1993, pp 36-39.
Goldstein Jay A. Physician's Forum.
CFIDS Chronicle, Spring 1991, p 10.
Jackson, Dennis. Gamma Globulin—Therapy
for CFIDS? CFIDS Chronicle, Summer/Fall 1989, pp 51-53.
Jessop, Carol. Moderated Questions and
Answers. CFIDS Chronicle, Spring 1991, p 80. Keim, Katherine. Improve
Your Sleep; Feel Better. CFIDS Chronicle, Winter 1994, pp 20-21.
Keller, Robert. Immune Dysfunction in
CFIDS: Why You Feel the Way You Do. CFIDS Chronicle, Fall 1994, pp
34-42.
Kenney, Kim. Ampligen: Past, Present
and Future. CFIDS Chronicle, March
1991, pp 18-20.
Kenney, Kim. Treating CFIDS: Still More
Art Than Science. CFIDS Chronicle, Winter 1994, pp 22-28.
Klimas, Nancy. Research Conference.
CFIDS Chronicle, Spring 1991, p 50. Kramer, Peter D. Listening to
Prozac. New York: Penguin Group, 1993.
Lapp, Charles. The Practical Treatment
of CFIDS: One Doctor's Approach. CFIDS Chronicle, Summer/Fall 1989,
pp 16-21.
Lapp, Charles. Physician's Forum. CFIDS
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Levin, Alan S, and Zellerbach, Merla.
The Type I/Type 2 Allergy Relief Program. Los Angeles, Calif.: Jeremy
P. Tarcher, 1983.
Levine, Susan. Allergy, Immune Fuction
and Endocrinological Disorders in CFIDS. CFIDS Chronicle,
January/February 1989, p 32.
Lloyd, Andrew, Hickie, lan, Wakefield,
Denis, Boughton, Clem, and Dwyer, John. Intra venous Immunoglobulin
Therapy in Patients With Chronic Fatigue Syndrome. In Hyde, Byron M,
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Nightingale Research Foundation, 1992.
Lloyd, Andrew, Hickie, lan, et al.
Immunological Therapy With Transfer Factor in Patients With Chronic
Fatigue Syndrome—A Double-Blind, Placebo-Controlled Trial.
Amer ican Journal of Medicine 89:561-568,1990.
Low, P, Gilden, J, Frieman, R, et al.
Efficacy of Midodrine vs. Placebo in Neurogenic Orthostatic
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the American Medical Association 277:1046-1051,1977.
McCoy, James L. Immunomodulatory
Properties of DHEA as a Potential Treatment for CFIDS. CFIDS
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Mena, Ismael. Research Conference.
CFIDS Chronicle, Spring/Summer 1990, pp 7-8. Orens, Perry A. U.S.
Scientists Study Transfer Factor. CFIDS Chronicle, Fall 1993, p 14.
Peterson, Daniel L, Strayer, David R,
et al. Clinical Improvements Obtained With Ampligen in Patients With
Severe Chronic Fatigue Syndrome and Associated Encephalopathy. In
Hyde, Byron M, ed. The Clinical and Scientific Basis of ME/CFS.
Ottawa, Ontario: Nightingale Research Foundation, Ottawa, 1992.
Peterson, Phillip. Research Conference.
CFIDS Chronicle, Spring/Summer 1990, p 12.
Peterson, Phillip, Shepard J, et al. A
Controlled Trial of Intravenous Immunoglobulin G in Chronic Fatigue
Syndrome. American Journal of Medicine 89:554-560,1990
Rosenbaum, Michael, and Susser, Murray.
Solving the Puzzle of Chronic Fatigue Syn drome. Tacoma, Wash.: Life
Sciences Press, 1992.
Rosenfeld, E, Salimi, B, O'Gorman, MR,
Lawyer, C, Katz, BZ. Potential In Vitro Activity of Kutapressin
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Rowe, Katherine. Double-Blind
Randomized Controlled Trial to Assess the Efficacy of Intravenous
Gamma Globulin for the Management of Chronic Fatigue Syndrome in
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Simpson, OL. Nondiscocyte Erythrocytes
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St. Armand, R Paul. One Disease—Two
Names. CFIDS/FM Health Resource, Fall 1996, pp 4-5.
Steinbach, Thomas, and Hermann,
William. The Treatment of CFIDS With Kutapressin. CFIDS Chronicle,
Spring/Summer 1990, pp 25-30.
Steinbach, Thomas, and Hermann,
William. The Use of Kutapressin in CFIDS. CFIDS Chronicle, Spring
1991, pp 50-54.
Straus, Steven, Dale, JK, Tobi, M, et
al. Acyclovir Treatment of the Chronic Fatigue Syn drome. New England
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Strayer, David R, Carter, William A, et
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Drug, Poly(I)-Poly(C12U), in Chronic Fatigue Syndrome. Clinical
Infectious Diseases 18(Suppl 1):S88-S95,1994.
Suhadolnick, Robert J, Peterson Daniel
L, et al. Biochemical Evidence for a Novel Low Molecular Weight
2-5A-Dependent RNase L in Chronic Fatigue Syndrome. Journal of
Interferon and Cytokine Research 17(7):377-385,1997.
Theoharides, Theoharis C, and Sant,
Grannum R. Bladder Mast Cell Activation in Inter stitial Cystitis.
Seminars in Urology IX(2):74-87,1991.
Vercoulen, JH, Swanink, CM, Zitman FG,
et al. Randomized Double-Blind, Placebo-Controlled Study of
Fluoxetine in Chronic Fatigue Syndrome. Lancet 347:858-861, 1996.
Viza, Dimitri, and Pizza, Giancarlo.
Can Specific Transfer Factor Be an Effective Treatment for CFS? CFIDS
Chronicle, Fall 1993, pp 11-13.
Wakefield, Denis. The Use of Gamma
Globulin in CFS. CFIDS Chronicle, Spring 1991, pp 41-50.
Wein, Alan, and Hanno, Phillip.
American Urological Association Update Series, Lesson 10. Volume VI,
1985, p 5.
CHAPTER 5: NUTRITIONAL SUPPLEMENTS AND
BOTANICALS
Ali, Majid. The Canary and Chronic
Fatigue. Denville, N.J.: Life Span Press, 1994.
Balch, James F, and Balch, Phyllis A.
Prescription for Nutritional Healing. Garden City Park, N.Y.: Avery
Publishing Group, 1990.
Baschetti, Riccardo. Letter. New
Zealand Journal of Medicine 108:156:157,1995.
Behan, Peter O, Behan, WMH, and
Horrobi, D. Effect of High Doses of Essential Fatty Acids on the Post
Viral Fatigue Syndrome. Acta Neurologica Scandinavica 82:209-216,
1990.
Bock, Steven, and Boyette, Michael.
Stay Young the Melatonin Way. New York: Dutton Press, 1995.
Bralley, / Alexander, and Lord, Richard
S. Treatment of Chronic Fatigue Syndrome with Specific Amino Acid
Supplementation. Journal of Applied Nutrition 46(3):74-78, 1994.
Carpman, Vicki. CFIDS Treatment: The
Cheney Clinic's Strategic Approach. CFIDS Chronicle, Spring 1995, pp
38-45.
Casson, Peter, Andersen, Richard,
Herrod, Henry, Stentz, Frankie, Straughn, Arthur, Abraham, Guy, and
Buster, John. Oral Dehydroepiandrosterone in Physiologic Doses
Modulates Immune Function in Postmenopausal Women. St. Louis:
Mosby-Year Book, 1993.
Castleman, Michael. The Healing Herbs.
Emmaus, Pa.: Rodale Press, 1991. Cheney, Paul. Ask the Doctor. CFIDS
Chronicle, Spring 1995, p 53.
Cheney, Paul R, and Lapp, Charles W.
Entero-Hepatic Resuscitation in Patients With Chronic Fatigue
Syndrome: A Pyramid of Nutritional Therapy. CFIDS Chronicle, Fall
1993,ppl-3.
Cox, IM, Campbell, MJ, and Dowson, D.
Red Blood Cell Magnesium and Chronic Fatigue Syndrome. Lancet
337:757,1991.
Cunha, Burke A. Beta-Carotene
Stimulation of Natural Killer Cell Activity in Adult Pa tients With
Chronic Fatigue Syndrome. CFIDS Chronicle, Fall 1993, p 18.
Farber, Paul. The Silver Micro Bullet.
Houston, Tex.: Professional Physicians Publishing and Health
Services, 1977.
Friedberg, Fred. Coping With Chronic
Fatigue Syndrome: Nine Things You Can Do. Oakland, Calif.: New
Harbinger Publications, 1995.
Graham, Judy. Evening Primrose Oil.
Rochester, Vt.: Healing Arts Press, 1989. Housecalls. Health,
September 1997, p 144.
Kuratsune, Hiroko, Yamaguti, Kouzi, et
al. Acylcarnitine Deficiency in Chronic Fatigue Syndrome. Clinical
Infectious Diseases 18(Suppl l):S562-567,1994.
Lapp, Charles. Physician's Forum. CFIDS
Chronicle, March 1991, pp 13-16.
Lapp, Charles W, and Cheney, Paul R.
The Rationale for Using High-Dose Cobalamin (Vitamin B12). CFIDS
Chronicle, Fall 1993, pp 19-20.
Letter to the Editor. CFIDS Chronicle,
Summer 1996, p 4.
Leung, Albert Y. Chinese Herbal
Remedies. New York: Universe Books, 1984.
Mass CFIDS Update, Fall 1995.
McCoy, James L. Immunomodulatory
Properties of DHEA as a Potential Treatment for CFIDS. CFIDS
Chronicle, Fall 1993,pp 21-23.
Melatonin Still Unproven as Sleep Aid.
The MEssenger, May 1997, p 5.
Moore, Michael. Medicinal Plants of the
Mountain West. Santa Fe, N.M.: Museum of New Mexico Press, 1979.
Plioplys, Audrius V, Plioplys, Sigita.
Amantadine and L-Carnitine Treatment of Chronic Fatigue Syndrome.
Neuropsychobiology 35(l):16-23,1997.
Rigden, Scott. Entero-Hepatic
Resuscitation Program. CFIDS Chronicle, Spring 1995, pp 46-48.
Rudin, Donald O, and Felix, Clara, with
Schrader, Constance. The Omega-3 Phenomenon. New York: Avon Books,
1987.
Russell, IJ, Michalek, JE, Flechas, JD,
Abraham, GE. Treatment of Fibromyalgia Syndrome With Super Malic: A
Randomized, Double-Blind, Placebo-Controlled, Crossover Pilot Study.
Journal of Rheumatology 22:953-958,1995.
Schmidt, Patti. Dr. Paul Cheney
Discusses Nutritional Supplements. CFIDS Chronicle, Fall 1994, p 31.
Spurgin, Maryann. The Role of Red Blood
Cell Morphology in the Pathogenesis of ME/CFIDS. CFIDS Chronicle,
Summer 1995, pp 55-58.
Theodasakis, Jason, Adderly, Brenda,
and Fox, Barry. The Arthritis Cure. New York: St. Martin's Press,
1997.
Wilkinson, Steve. Chronic Fatigue
Syndrome: A Natural Healing Guide. New York: Sterling Publishing Co.,
1990.
Winther, Michael. Essential Fatty Acid
Therapy for Myalgic Encephalomyelitis. In Hyde, Byron M, ed. The
Clinical and Scientific Basis of ME/CFS. Ottawa, Ontario:
Night ingale Research Foundation, 1992.
CHAPTER 6: ALTERNATIVE AND
COMPLEMENTARY MEDICAL AND SUPPORTIVE THERAPIES
Anderson, Dean. Recovery From CFIDS.
CFIDS Chronicle, Winter 1996, pp 27-29.
Ashendorf, Douglas. The Ability of Low
Level Laser Therapy (LLLT) to Mitigate Fibro myalgia Pain. CFIDS
Chronicle, Fall 1993, pp 28-29.
Bailey, Covert. Smart Exercise. Boston:
Houghton Mifflin Co., 1994.
Blate, Michael. The Natural Healer's
Acupressure Handbook. Falkynor Books, 1983.
Borysenko, Joan. Minding the Body,
Mending the Mind. New York: Addison-Wesley Pub lishing Co., 1987.
Carpman, Vicki L. Natelson's Niche.
CFIDS Chronicle, Winter 1996, pp 42-44.
Collinge, William. Recovering From
Chronic Fatigue Syndrome. New York: The Body Press/Perigee Books,
1993.
Garloch, Karen. Chronic Fatigue
Syndrome Treatment Patented. CFIDS Chronicle, Spring 1994,p7.
Lapp, Charles. Dublin Conference. CFIDS
Chronicle, Summer 1994, p 35. Preston, Myra. A New Test. CFIDS
Chronicle, Winter 1996, pp 50-51.
Tansey, Michael A. EEG Neurofeedback
and Chronic Fatigue Syndrome: New Findings With Respect to Diagnosis
and Treatment. CFIDS Chronicle, Fall 1993, pp 30-32.
Walker, Morton. The Chelation Way: The
Complete Book of Chelation Therapy. Garden City Park, N.Y.: Avery
Publishing Group, 1990.
Weiner, Michael. The Complete Book of
Homeopathy. Garden City Park, N.Y.: Avery Publishing Group, 1989.
Wilkinson, Steve. Chronic Fatigue
Syndrome: A Natural Healing Guide. New York: Sterling Publishing Co.,
1990.
Worwood, Valeria Ann. The Complete Book
of Essential Oils and Aromatherapy. San Rafael, Calif.: New World
Library, 1991.
CHAPTER 7: STRESS REDUCTION AND
ELIMINATION
Anderson, Dean. Recovery From CFIDS.
CFIDS Chronicle, Winter 1996, pp 27-29. Cheney, Paul. Physician's
Forum. CFIDS Chronicle, March 1991, p 3.
Chrousos, George P, and Gold, Philip W.
The Concepts of Stress and Stress System Dis orders. Journal of the
American Medical Association 267:1244-1252,1992.
Cousins, Norman. Anatomy of an Illness.
New York Bantam Books, 1981.
Demitrack, Mark A, Dale, Janet K,
Straus, Stephen E, Laue, Louisa, Listwak, Sam J, Kreusi, Markus JP,
Chrousos, George P, and Gold, Philip W. Evidence for Impaired
Activa tion of the Hypothalamic-Pituitary-Adrenal Axis in Patients
With Chronic Fatigue Syndrome. Journal of Clinical Endocrinology and
Metabolism 73:1224-1234,1991.
Friedberg, Fred. Coping With Chronic
Fatigue Syndrome: Nine Things You Can Do. Oakland, Calif.: New
Harbinger Publications, 1995.
Goliszek, Andrew G. Breaking the Stress
Habit. Carolina Press, 1987.
Hyde, Byron M. The Clinical and
Scientific Basis of ME/CFS. Ottawa, Ontario: Nightingale Research
Foundation, 1992.
Kenny, Timothy. Living With Chronic
Fatigue Syndrome: A Personal Story of the Struggle for Recovery. New
York: Thunder's Mouth Press, 1994.
Sapolsky, Robert. Why Zebras Don't Get
Ulcers: A Guide to Stress, Stress-Related Diseases, and Coping. New
York: W.H. Freeman and Co., 1994.
CHAPTER 8: CLEANING UP: ELIMINATING
TOXINS IN THE HOME
Bruning, Nancy. Breast Implants:
Everything You Need to Know. Alameda, Calif.: Hunter House, 1992.
Carpman, Vicki. Chemical Warfare:
CFIDS, Multiple Chemical Sensitivity and Silicone Implant Disorder.
CFIDS Chronicle, Fall 1993, pp 33-41.
Dadd, Debra Lynn. Nontoxic and Natural.
Los Angeles: Jeremy P. Tarcher, 1984. Dadd, Debra Lynn. The Nontoxic
Home. Los Angeles: Jeremy P. Tarcher, 1986.
Elkington, John, Hailes, Julia, and
Makower, Joel. The Green Consumer. New York: Penguin Books, 1990.
Hunter, Linda Mason. The Healthy Home:
An Attic to Basement Guide to Toxin-Free Living. Emmaus, Pa.: Rodale
Press, 1989.
LeRoy, Jim, Haney Davis, Trina, and
Jason, Leonard A. Treatment Efficacy: A Survey of 305 MCS Patients.
CFIDS Chronicle, Winter 1996, pp 52-53.
Mangano, Joseph. Could CFIDS Be a
Radiation-Related Disorder? CFIDS Chronicle, Winter 1994, pp 36-38.
Millar, Myrna, and Millar, Heather. The
Toxic Labyrinth. Vancouver, B.C.: NICO Pro fessional Services, 1995.
Ware, George W. The Pesticide Book. San
Francisco: W.H. Freeman and Co., 1978.
Wittenburg, Janke Strubbe. The
Rebellious Body. Reclaim Your Life From Environmental Illness or
Chronic Fatigue Syndrome. New York: Insight Books, 1997.
CHAPTER 9: FOOD AND DIET
Brostoff, Jonathan, and Gamlin, Linda.
The Complete Guide to Food Allergy and Intol erance. New York: Crown
Publishers, 1989.
Dumke, Nicolette M. Allergy Cooking
With Ease. Lancaster, Pa.: Starburst Publishers, 1992.
Hale, Mary, and Miller, Chris. The
Chronic Fatigue Syndrome Cookbook. New York: Birch Lane Press, 1994.
Loblay, Robert H, and Swain, Anne R.
The Role of Food Intolerance in Chronic Fatigue Syndrome. In Hyde,
Byron M, ed. The Clinical and Scientific Basis of ME/CFS. Ottawa,
Ontario: Nightingale Research Foundation, 1992.
Winter, Ruth. A Consumer's Dictionary
of Food Additives. New York: Crown Publishers, 1989.
CHAPTER 10: SPECIAL NEEDS OF CHILDREN
WITH CFIDS
Bell, David. Chronic Fatigue Syndrome
in Children. Journal of Chronic Fatigue Syndrome l(l):9-33,1995.
Bell, David. Special Bulletin. CFIDS
Chronicle, November 1993.
Carpman, Vicki. Educating the
Educators: The Special Needs of Children With CFIDS. CFIDS Chronicle,
Spring 1995, pp 13-15.
Lang, Karen. Galen's Story: A Child's
Journey Through CFIDS. CFIDS Chronicle, Winter 1994, pp 1-6.
ME and the Young Sufferer. The
MEssenger, April 1995.
Thorson, Kristin, ed. Fibromyalgia
Syndrome and Chronic Fatigue Syndrome in Young People: A Guide for
Parents. Tucson, Ariz.: Health Network, 1994.
Vanderzalm, Lynn. Finding Strength in
Weakness. Grand Rapids, Mich.: Zondervan, 1995.
Vanderzalm, Lynn. The Challenges of
Parenting a Child With CFIDS. CFIDS Chronicle, Winter 1996, pp 15-16.
CFIDS TREATMENT SURVEY
Your first name__________________
State/Country of Residence______________
Sex______ Age________
When did you first become ill?
___________________________________________
Was the onset sudden or gradual (over a
few months or years)?__________________
What was the trigger (flu, operation,
accident, childbirth, etc.)?
Have you been diagnosed with
CFIDS?_____________ By whom?_____________
Have you been diagnosed with
Fibromyalgia?______________ By whom?_________
Do you have any other concurrent
diagnoses (IBS, Rosacea, Interstitial Cystitis, etc.)?
_____________________________________________________________________
How would you rate the severity of your
illness with (0=completely bedridden, 10=recovered)?
0 1 2 3 4 5 6 7 8 9 10
What are your worst symptoms?
_____________________________________________________________
_______________________________________________________________
________________________________________________________________
________________________________________________________________
TREATMENTS
Please rate any treatments you have
tried. Please include dosage.
Not sure Harmful No effect Helpful
Very Helpful
Ampligen
Antidepressants
Sinequan
Elavil
Prozac
Zoloft
MOAs____
Wellbutrin
Other
Antifungals
Nystatin
Diflucan
Nizoral
Sporanox
Antihistamines
Claritin
Hismanal
Benadryl
Atarax
Antivirals
Acyclovir
Famvir
Amantadine
Benzodiazapines
Klonopin (Clonazepam)
Valium
Xanax
Other
Beta Blockers
Atenolol
Other
Calcium Channel Blockers
Nicardipene
Verapamil
Other
CNS stimulants
Cylert
Ritalin
Other
Cytotec
Diamox
Flexeril
Florinef
Gamma Globulin
Guaifenesin
Hydrocortisone
Kutapressin
Naltrexone
Nitroglycerin
Oxytocin
Pain Relievers
Tylenol (Acetominophen)
Aspirin
Advil
Narcotics
Other
Pentoxifylline
Tagamet (cimetidine)
Transfer Factor
Zantac
Other
Nutritional Supplements and Botanicals
Alpha Ketoglutarate
Amino Acids
Carnitine
Glutamine
Glutathione
Lysine
Taurine
Other
Bioflavanoids
Blue-Green Algae
Butyric Acid
Butyrex
Butyren
CoQ10
DHEA
Entero-Hepatic Resuscitation
Essential Fatty Acids
Evening Primrose Oil
Borage Oil
Fish Oils
Other
Herbs
Astragalus
Echinacea
Gingko
Ginseng
Licorice
Milk Thistle
Valerian
Other
LEM
Malic Acid
Melatonin
Minerals
Calcium
Magensium
Zinc
Other
NADH
Probioplex
Probiotics
What brand?
Pycnogenol
Royal Jelly
Sambucol
Vitamins
Beta Carotene
Vitamin A
Vitamin B12
Vitamin C
Vitamin D
Vitamin E
Other
Alternative and Complementary Medical
and Supportive Therapies
Acupressure
Acupuncture
Aroma Therapy
Bach Remedies
Bed Rest
Biofeedback
Chelation Therapy
Chiropractic
Exercise
Homeopathy
Hypnosis
Hydrotherapy
Live Cell Therapy
Massage
Mediation
TENS
Visualization/Imagery
Other
Have you found any treatments or
therapies particularly helpful? How?
Have you found any treatments or
therapies particularly harmful? How?
Are there any treatments you would like
to see added to this survey?
What would you prefer to name, or
rename, CFS?
