From Patient Advocate Mary Shomon, October 2002
 |
Table of Contents Book Introduction Reviews Autoimmune Risks/Symptoms Checklist |
Author: Mary J. Shomon
ISBN number: 0060938196
List price: $14.95 (US dollars)
Published by: HarperCollins, HarperResource
Buy the Book: At local bookstores everywhere
ORDER NOW
Online: at Amazon.com, Iherb.com,
and others
Phone Orders: Call Iherb.com toll-free at 888-792-0028
Contact Mary Shomon, Author, EditorVisit Mary Shomon's
Thyroid-Info.com site for thyroid information
 | If you have a suspected or diagnosed thyroid problem, order Living Well With Hypothyroidism, the bestseller in its 16th printing |
Welcome to the premiere issue of The Autoimmune Report, my news and information report on autoimmune disease. This newsletter is copyrighted by Mary Shomon, and cannot be legally reproduced without permission. Feel free, however, to forward a single copy to someone who might be interested in reading the newsletter or subscribing to it in the future.
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ON THE WEB: My Autoimmune Disease home page is located at http://www.autoimmunebook.com. I also run patient information sites on thyroid disease site at http://www.thyroid-info.com and http://thyroid.about.com.
SEND NEWS! If you see something autoimmune-related in the news or on the web, please feel free to let me know, send me a note, or forward the URL to me if it's on the web. My email is news@thyroid-info.com regular mail is P.O. Box 565, Palm Harbor, FL
34682, fax is: 425-977-1175.
LIVING WELL WITH AUTOIMMUNE DISEASE: Just published, October 8, 2002! For more information, see http://www.autoimmunebook.com.
AUTOIMMUNE PATIENTS NEED TO BE AWARE OF SMALLPOX VACCINE RISKS
As the federal government makes plans for potential widespread smallpox vaccination, experts are cautioning that those with dysfunctional immune systems may be at higher risk of side effects from the vaccine itself, as well as exposure to those who have just had the vaccine.
Are you at risk? Find out in this detailed article online.
http://www.thyroid-info.com/autoimmune/smallpox.htm.
DO YOU HAVE THE AUTOIMMUNE DISEASE "SUPER-SYMPTOMS?"
The new book Living Well With Autoimmune Disease features a more than 30-page checklist of risk factors and symptoms that may help pinpoint and close in on symptoms that suggest one of dozens of autoimmune conditions.
There are very specific symptoms found in particular conditions, but certain symptoms have been identified as what I call “super-symptoms,” which are common in so many autoimmune conditions.
What are some of these “super-symptoms?” Check off and see how many of these symptoms of a potential autoimmune disease that you may have...
___ JOINT/MUSCLE PAIN
___ GENERAL MUSCLE WEAKNESS
___ INFECTIONS: Greater susceptibility and more frequent infections -- such as urinary tract, bladder, gum, skin or vaginal infections, as well as viruses -- and slower recovery from those infections
___ RASHES
___ FATIGUE
___ LOW-GRADE FEVER
___ NUMBNESS/TINGLING IN HANDS/FEET
___ DRY EYES / DRY MOUTH
___ WEIGHT LOSS: 10-15 pound range
___ HAIR LOSS
___ SHORTNESS OF BREATH: both general, and on exertion, feeling the need to yawn to get a full breath, or heaviness in the chest that makes breathing more difficult.
___ PALPITATIONS: feeling missed heartbeats, changes in rhythm, skipped beats, irregular heart rhythms, and other types of palpitations
___ RECURRENT MISCARRIAGE
___ DEPRESSION
___ CONCENTRATION/MEMORY PROBLEMS: difficulty thinking and concentrating – “brain fog”
A more detailed excerpt is featured online at: http://www.thyroid-info.com/autochecklist.htm.
The full questionnaire with detailed risks and symptoms list is featured in the new book Living Well With Autoimmune Disease. For
more information, see
www.autoimmunebook.com.
GOOD FOODS/BAD FOODS, FOR AUTOIMMUNE DISEASE
The chapter on diet in Living Well With Autoimmune Disease discusses among many recommendations and considerations the potential role of a gluten-free diet and food allergies in helping deal with -- or even reverse -- some autoimmune conditions.
Recent news reports have found that for multiple sclerosis patients, one food may help, and another food hurt. Preliminary animal studies have found that curcumin, a compound that is found in the spice turmeric – commonly used in curry -- may block the progression of multiple sclerosis (MS). And eating certain smoked sausages in childhood may increase the risk of developing multiple sclerosis (MS) later in life.
Find out more about how these interesting developments on how foods can both hurt and help.
http://www.thyroid-info.com/autoimmune/MSfoods.htm
SPIRITUALITY MAKES PEOPLE FEEL BETTER
According to a Johns Hopkins study presented May 10, 2002 at the American Geriatrics Society's annual meeting, people who are more spiritual are better able to deal with the discomforts and limitations of chronic disease than those who are less spiritual. The researchers found that people who are more “spiritual” are happier and feel better about health overall.
Living Well With Autoimmune Disease features Harvard physician Herbert Benson, MD, the nation’s foremost mind-body expert. Dr. Benson has said:
“We have found that when people regularly go into a quiet state, a large percentage of them feel the presence of a power, a force, an energy, God if you will, and they feel that presence is close to them, within them, then these people have fewer medical symptoms. Now, whether or not this is a physiological reaction independent of an external belief system, or whether or not there is indeed something out there, we cannot answer, but from the patient's point of view, they feel better…”
Read the entire article now...
http://www.thyroid-info.com/autoimmune/spirituality.htm
COLLABORATION ADVANCES POTENTIAL THERAPY FOR AUTOIMMUNE DISEASES
In June of 2002, the Department of Energy's Pacific Northwest National Laboratory announced the launch of a collaboration with two
U.S. companies and Russian scientists to develop a more effective treatment for autoimmune diseases, such as rheumatoid arthritis
and multiple sclerosis. The Russian scientists have created unique humanized antibodies to gamma interferon, a protein that when
overproduced triggers and worsens various autoimmune conditions. This work is a major step toward creating a much-improved
treatment for certain autoimmune diseases. Find out more about this key collaboration.
http://www.thyroid-info.com/autoimmune/probiotics.htm
MORE REASON FOR PROBIOTICS
Living Well With Autoimmune Disease discussed the importance of probiotic supplements for autoimmune disease sufferers. There is more research that offers encouraging news about probiotics, for migraine sufferers, and for reduction of eczema and allergy risks. You can find out more probiotics in the full article online.
http://www.thyroid-info.com/autoimmune/probiotics.htm.
BRAIN SCAN HELPS TELL THE FUTURE OF MS: MRI PREDICTS IF EARLY SIGNS WILL DEVELOP INTO DISABILITY
A study presented in the January 17, 2002 issue of The New England Journal of Medicine reported that an MRI brain scan may be able to predict which people who have potential MS symptoms likely do have the condition, and who will likely go on to experience
significant disability due to the course of the MS. Read the full article on this important research now.
http://www.thyroid-info.com/autoimmune/MSbrainscan.htm.
MULTIPLE SCLEROSIS RISING AMONG U.S. WOMEN: REPORT
According to researchers at the US Centers for Disease Control and Prevention (CDC), the number of US women living with multiple sclerosis (MS) seems to have risen in the past 20 years. Find out more about this surprising increase in the article online.
http://www.thyroid-info.com/autoimmune/MSrise.htm
HOW TO LIVE WELL WITH AUTOIMMUNE DISEASE -- STARTING TODAY!
If you have a family history of autoimmune disease, a diagnosed condition yourself, or mysterious symptoms, you need my new book
Living Well With Autoimmune Disease: What Your Doctor Doesn't Tell You...That You Need to Know. The book, which has just
been published, is a complete guide to understanding the more than 80 mysterious and often difficult-to-pinpoint autoimmune
disorders -- and finding the conventional and alternative keys to diagnosis, treatment, recovery...and even prevention or cure.
An estimated 50 million Americans suffer from the conditions, with symptoms ranging from fatigue to joint pains to depression, to
numb hands and feet, to heart palpitations. These are all signs that the immune system has turned upon itself, causing autoimmune
conditions such as thyroid disease, diabetes, multiple sclerosis, rheumatoid arthritis, psoriasis, and irritiable bowel disease. All too
frequently, these symptoms are overlooked or misdiagnosed for years!
Once diagnosed, doctors may prescribe pain relievers, hormones, or immunosuppressants to treat the symptoms, but when a patient
asks about the cause, the life-long health implications, or how to heal such conditions, doctors simply shrug their shoulders.
Living Well With Autoimmune Disease is the first book that to recognize that these conditions are closely related, not standalone,
and frequently stem from toxic exposures and underlying dysfunctions that may be treatable using nutritional and alternative
approaches to complement traditional treatments.
The book features:
This is the second book in my "Living Well..." series published by Harper Collins. My first book in the series, Living Well With
Hypothyroidism, is a bestseller now in a 16th printing with over 100,000 copies sold.
Living Well With Autoimmune Disease has a website, www.autoimmunebook.com, which features a chapter of the book, as
well as the table of contents, and reviews, including Publisher's Weekly, Amazon.com, and reviews from some of the nation's leading
integrative medicine practitioners and authors.
ORDER LIVING WELL WITH AUTOIMMUNE DISEASE
The book is available at local and online bookstores everywhere, and the list price is $14.95
Online
Order now online at Iherb.com for Iherb's special price of $10.00, plus shipping
Order online at Amazon.com, for $10.47, plus shipping
Phone Orders
Call Iherb.com toll-free at 888-792-0028
LETTER FROM A READER
"I too have Hashimoto's, recently diagnosed. I pre-ordered your book. It arrived on Friday night. I stayed in my PJ's all day Saturday,
reading it feverishly! It made me feel like there really is hope for dealing with this disease. I have struggled with the doctors on this
one. After much frustration with a local Endocrinologist, I went to a university medical center. I received a more comprehensive
diagnosis and a compassionate doctor, but still not many answers. I kept wanting them to link the vitiligo and toe pain (I thought I was
crazy describing a shooting/throbbing pain in one particular toe). So, now I know I have Hashimoto's, Vitiligo, and Raynaud's
Phenomenon. The answers I have not received from the docs are how to cope with the symptoms of fatigue, weight gain, toe pain. I'm
going to start by insisting on a change in medication from Thyroxine to Armour. I am also starting to take Colostrum to build my
immune system and calcium/magnesium/vitamin D, plus vitamin B-12. I need to find a good naturopath, one who understands
autoimmune diseases. Thank you again for such a wonderful book which helps people like me start to "put it all together and make
sense of it." ~ L.M., Washington
JOIN AARDA
If you want to do something important for the issue of autoimmune disease, there is one critical thing I recommend. Join the American
Autoimmune Related Diseases Association (AARDA).
AARDA is a non-profit organization dedicated to addressing the problem of autoimmunity, the major cause of chronic illness. As the
only organization focusing on autoimmune diseases, AARDA's goal is to eradicate these diseases, alleviate the suffering and the
socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, research, and patient
services in an effective, ethical and efficient manner.
AARDA is a well-run organization, and among all the organizations I've personally encountered, it maintains extremely high ethical
standards, a patient-oriented focus, and is not a spin-off now does it cater to pharmaceutical company interests. AARDA does what
makes sense for the issue of autoimmune disease, and in furthering research to help patients. AARDA's principal source of funds are
public donations, grants, fund-raising events, and bequests. AARDA sponsors physician's conferences, research, legislative advocacy
and a national awarness campaign to bring a national focus to autoimmunity.
If you or a member of your family have an autoimmune disease, you need to be a member of AARDA. The deserve our support.
For more information, see www.aarda.org. 
NOTES FROM MARY
I thought the most appropriate way to welcome you to my new newsletter and introduce my new book to you would be to share with
you an excerpt from Chapter 1, the Introduction, to my book, "Living Well With Autoimmune Disease."
"When I was first diagnosed with hypothyroidism, I didn’t have any idea what or where the thyroid was, or what it actually did. My
doctor phoned to let me know that my thyroid was a little underactive, called in a prescription to the pharmacy, and that was the
extent of the diagnosis and treatment. Months after I began thyroid hormone replacement, I was still struggling with continuing
symptoms. My hair was falling out and clogging the drains. I was waking up each morning with sore and achy joints and muscles.
Just a few hours of typing on the computer would set off a major attack of carpal tunnel syndrome in my forearms and wrists. My eyes
became scratchy and vision blurry due to dryness. My hands and feet frequently tingled and went numb.
I decided to find out more about my condition, and read a book from the 1970s that explained that the main cause of hypothyroidism
was actually an autoimmune disease, Hashimoto’s thyroiditis. The book offered little insight into how someone would get this
condition, or whether there was anything you could do about it. All it suggested was that having one autoimmune disease could
increase the risk of developing other autoimmune conditions. The prospect of having one poorly understood autoimmune condition was
frightening – but made far worse by the idea that I was also at higher risk for lupus, multiple sclerosis, diabetes, or worse.
I asked my doctor to refer me to an endocrinologist – a specialist in endocrine diseases. When I consulted with the endocrinologist, I
asked her if I could be tested for Hashimoto’s thyroiditis.
“We could do that,” she responded, “but what’s the point of spending the money? Because it’s not like the fact that your
hypothyroidism is caused by an autoimmune disease is going to change anything. . . ”
But the truth is, my hypothyroidism was ultimately caused by an autoimmune disease – Hashimoto’s thyroiditis. And that does
change everything.
In reality, it changes the way I should eat. The symptoms I should more closely monitor. The vitamins, minerals, herbs and
supplements I should take. The type of doctors I should visit. The way I should manage stress. Even the water I should drink. And it
changes the way I should feed my young daughter and care for her health now to protect her health in the future.
That’s why I wrote Living Well With Autoimmune Disease. Because autoimmune disease does matter…and because we need to
know more. Variations of my story are repeated every day, when a patient with autoimmune thyroid disease wonders, as I did, if the
tingling and numbness are actually signs of impending multiple sclerosis. Or when the woman with lupus asks how she got the
condition, and is offered nothing more than a shrug of the shoulders from a doctor. Or when a person with Sjögren’s syndrome worries
that the dry eyes and dry mouth are a harbinger of other autoimmune diseases to come, but is told there’s nothing that can be done
to prevent it, so why worry. Or when a pregnant woman wonders whether her new baby is at greater risk of developing an autoimmune
disease someday.
But for most autoimmune diseases, the best that medicine can do is keep some symptoms at bay. The root cause of the condition,
or any potential to cure the autoimmune disease, is rarely -- if at all -- addressed.
And that means that you may ultimately feel afraid.
Afraid, because once the immune system has “turned on you,” you may start on a seemingly downward health spiral, characterized
by development of other autoimmune conditions.
Afraid because multiple autoimmune conditions are frequently accompanied by dramatically worsening allergies, heightened chemical
sensitivities, hormonal imbalances, and a host of other debilitating and life-changing symptoms.
Afraid because you’ve perhaps only just learned to deal with your diagnosed condition, only to suspect that every new symptom,
every new ache, or pain, might signal the onset of another new and insidious autoimmune disease.
Afraid because, for the most part, doctors throw up their hands when you ask: “What can I do about my autoimmune condition?” And
afraid because your doctors just shake their heads, perplexed, when you ask, “How can I avoid getting more autoimmune-related
diseases?” And afraid because most doctors don’t have an answer to the critical question: “Is there anything we can to help my
children avoid following in my footsteps, and prevent them from developing autoimmune diseases in the future?”
Afraid because, over time, chronic malfunctioning of the immune system can also ultimately lead to dangerous cancers.
Afraid that there’s no way to recapture your health, no way to slow or halt the inexorable march of an immune system gone haywire
as it launches each new attack on another part of your body.
Afraid that there are no answers.
But there are answers.
You just aren’t likely to hear them from the typical HMO doctor, who may not even recognize or easily diagnose many autoimmune
conditions, much less know how to treat them -- particularly given the constraints of the typical HMO-mandated “15-minutes or less”
appointment.
And the answers aren’t likely to be forthcoming from the average primary care doctor, or GP, or ob-gyn -- the doctors most of us see
for our day-to-day medical care. These doctors rush through dozens of patients a day, and barely have time to stay up on key
developments in the most studied conditions like heart disease or cancer, much less time to delve into complicated and little
understood autoimmune diseases.
And even those doctors who consider themselves “experts” in treating the most common autoimmune diseases rarely venture into the
uncharted territory of actually dealing with the autoimmune process itself. Most are content to focus on treating symptoms.
So endocrinologists give insulin for diabetes, and thyroid hormone replacement for thyroid disease. Rheumatologists prescribe pain
relievers and immunosuppressives for rheumatoid arthritis. Gastroenterologists offer surgeries and drugs for Crohn’s disease. But ask
these doctors about the autoimmune implications of the conditions, and you’ll usually draw a blank.
The term “autoimmune disease” and the concept of autoimmunity weren’t even articulated or understood until the late 1950s. And
while autoimmune disease has been studied by experts and researchers since that time, how and why we develop autoimmune
diseases is not something that seems to have been widely embraced by popular medicine. It’s rare that you’d open your newspaper
to find regular reports of the latest research findings on risks and causes of autoimmune disease. You won’t find pamphlets in your
doctor’s office talking about how to avoid developing an autoimmune condition. There isn’t even such a thing as an
“autoimmunologist,” a specialist who has a big picture ability to diagnose and treat autoimmune diseases in general.
This is in sharp contrast to cancer, for example. When it comes to cancer, every day new information is released about risk factors
and lifestyle issues. We know that smoking can cause lung cancer, that obesity and a high-fat diet may contribute to the risk of
developing breast cancer, that excessive sunbathing causes skin cancer. If you’ve had cancer, there are a variety of recommendations
regarding diet, exercise, supplements and lifestyle, to prevent recurrence. And there are cancer hospitals, specialists, nutritionists,
holistic experts, alternative clinics, and many other cancer-focused experts and resources. When you fill out a medical history form,
they ask about family history of cancer.
Why don’t we have the same approach for autoimmune disease? Some people would say it’s because autoimmune diseases aren’t
that common. But they would be wrong. The American Autoimmune Related Diseases Association (AARDA), the only national
organization dedicated to looking at autoimmune diseases as an entity, states that approximately 50 million Americans, or 20 percent
of the population, suffer from autoimmune diseases.
Others believe that it’s because autoimmune diseases are usually chronic, and because they affect primarily women. Dr. Denise
Faustman, associate professor at Harvard Medical School and director of the Immunobiology Laboratory at Massachusetts General
Hospital, shared her thoughts in an Associated Press interview:
Middle-aged women are not fashionable -- and they are the main victims. It's fashionable to talk about young people dying, children
dying. But it's not fashionable to talk about some woman who can't walk down the hallway or loses her job because of arthritis. It's
slow and chronic and you don't die and get the attention.
In reality, autoimmune diseases as a category are one of the 10 leading causes of all deaths among U.S. women age 65 and
younger. According to AARDA, separate from accidents, homicides and suicides, autoimmune diseases are the seventh leading
cause of death by disease among females ages one to 14 and the fifth leading cause of death by disease among females ages 15 to
44.
Finally, there’s the problem that autoimmune diseases just aren’t viewed collectively. Periodically, you’ll hear about individual
autoimmune conditions. Monaco’s Princess Caroline was bald for several years due to the autoimmune disease alopecia. Former
Mouseketeer Annette Funicello and talk show host Montel Williams are both publicly battling the autoimmune disease multiple
sclerosis. Mary Tyler Moore is a well-known advocate for type I diabetes, having suffered from it since childhood. Radio host Rush
Limbaugh suffers from autoimmune-related hearing loss. But rarely are autoimmune diseases discussed comprehensively as a
category of conditions.
If autoimmune disease is overlooked at the system-wide level, it is also overlooked at the individual level. I was a fairly typical story. At
31, I had a bad bout of Epstein-Barr virus, followed by months of slow recuperation. Then, at 32, I started noticing slow, steady weight
gain, increasing fatigue, and slight depression. When I went in to the doctor three times over six months, complaining about these
symptoms and determined to get answers, she decided she needed to test my thyroid, and at 33, I was diagnosed. If I date the
“onset” of my autoimmune disease back to the viral illness, it was about two and a half years until I was formally diagnosed.
But I was actually lucky. According to AARDA, the typical autoimmune disease patient faces years of visits to many different doctors
before even being diagnosed.
Trusting your own instincts is really the critical first step. But some of us are our own worst enemies. We accept it as a given that
after pregnancy, or during menopause, or once we hit our sixties, we’re bound to lose hair, suffer appetite and weight changes, feel
weak, lose our sex drive, or be unable to sleep through the night. We assume that bone-numbing fatigue is a normal byproduct of a
busy schedule and chronic lack of sleep. We look for quick fixes for each problem. We get depressed – we take antidepressants. We
gain weight – we take diet drugs. We have muscle pains and aches – we take pain relievers. We don’t put the clues together
ourselves. And when we don’t, we miss the bigger picture.
Getting an expert – the right one who can make the right diagnosis – to take you seriously, is another important step. Even when we
haven’t missed the bigger picture, doctors might. I receive hundreds of letters from patients each week, and I hear the same stories
over and over again. Women and men who suspect they have a health problem – some even suspect an autoimmune condition – but
are told to “leave the diagnosing to the experts,” or whose HMOs refuse to refer them to specialists, or who are told by physicians, “Of
course you’re tired, depressed, and feeling sore and achy…you work too hard and aren’t getting enough sleep.” Or, most commonly,
people who are being seen by doctors suffer from what I call “Stressed, Depressed, and PMSed Syndrome,” and who assume that
seemingly vague symptoms like fatigue, weakness, and mild depression are signs of stress and depression, or in women, hormonal
problems. These doctors typically send you home with antidepressants, sleeping pills, or pain relievers, rather than look for an
underlying condition to explain it.
You need this book if:
Living Well With Autoimmune Disease will help you go beyond treatments that merely manage symptoms, to discover cutting-edge
approaches that can actually reduce and even reverse the autoimmune response, reduce or eliminate symptoms, and in some cases,
even cure autoimmune conditions entirely.
After reading Living Well With Autoimmune Disease, you will...
Living Well With Autoimmune Disease offers practical support and advice to move beyond simply “living with” a condition, to actively
working to balance and strengthen your own immune system. In this book, you’ll find the tools you need to take a proactive role in
improving your own health, and perhaps even preventing further autoimmune attacks on the body.
My hope is that you come away from the book -- and this ongoing newsletter -- with a greater understanding that having an autoimmune disease is like having two separate conditions -- the actual condition and its obvious symptoms -- plus a separate, underlying autoimmune dysfunction itself, one that deserves separate attention. And I also hope that you will come away from this book aware of the innovative responses to autoimmune dysfunction that may help you manage your condition, reduce symptoms, prevent future health problems, and perhaps most importantly, give you hope.
I look forward to moving forward with you as we all learn better how to not just survive, but to thrive, heal and live well with our autoimmune conditions.
Live well,
Mary
The Autoimmune Report is published monthly by Mary Shomon. Please invite your friends to subscribe! Send them a copy with your recommendation. The Autoimmune Report is copyright 1997-2006 by Mary Shomon.
Web: http://www.autoimmunebook.com
Email: news@thyroid-info.com
Regular mail: Mary Shomon, P.O. Box 565, Kensington, MD 20895-0565
Fax: 425-977-1175