Patients love to tell doctor stories; the good, the bad, and the unfortunate. Often, those suffering from illness want to tell me stories about the first doctor who really (finally) listened to them; that compassionate healer who went the unexpected extra mile to help solve the mystery of their autoimmune disease. They want to share the tale of the practitioner who gave them a clear message of hope – a conviction that they could be well — which became a mantra that settled somewhere in their psyche and played a part in nudging them toward recovery. But more often the stories they tell me are about doctors who didn’t listen, or didn’t seem to care, or dismissed them as malingerers; practitioners whose obvious condescension still rankles them to this day.

This concern with what makes a good doctor isn’t surprising when you consider recent statistics that 133 million Americans suffer from a chronic disease, be it heart disease, cancer, severe back pain, arthritis, autoimmunity, or a plague of other challenging ailments that derail normal life. These chronically ill patients often traipse from one health care professional to the next in search of answers and relief — a process that can take years. Indeed, the average autoimmune disease patient, of whom there are now 24 million in the United States alone, sees four doctors over four years before receiving a proper diagnosis. This search for a good doctor can be emotionally arduous. Recent surveys conducted by the American Autoimmune Related Diseases Association reveal that 45 percent of patients with diagnosed autoimmune diseases were told that they were hypochondriacs at some point in their medical care. Increasingly, patients who feel they need more than what traditional medicine can offer go “off the reservation,” seeking help from holistic and alternative health care specialists as well.

Whether a patient seeks the help of traditional or alternative/complimentary practitioners (or, as a majority of patients now do, both) all “healer stories” really contain the same key themes. If the good health care practitioner were a recipe, the four integral ingredients would be these:

1) Compassion. Patients know whether health care professionals have it or they don’t. Doctors who express compassion for their patients’ pain and circumstances stand out immediately. I know a well-known transverse myelitis and multiple sclerosis specialist at a major medical institute who, when he diagnoses a patient, feels so deeply for them that he always hands them his cell phone number, because he knows there will be “dark moments” where they will have “sudden, urgent questions” that can’t wait for the next clinic visit. And I have heard his voice crack when he talks about the loss of a young patient he could not save. Another physician revealed the strength of his character when, after diagnosing me with Guillain Barre Syndrome, a disease in which the body becomes increasingly paralyzed degree by steady degree, he sat with me in a small, white exam room at Johns Hopkins, talking with me quietly for an hour-and-a-half, while my mother and husband rushed to arrange admission to the hospital, collected my bags from home and arranged for child care. He stayed with me, he said, because he didn’t want me to wait alone after the devastating news he’d just delivered — even though nurses were rapping on the exam room door and his patient waiting room was near to overflowing, and it no doubt meant he would go home much later than night to his family than he might like. He is a very decent man, a good man, and the numerous patients I know who see him use these words to describe him whenever they mention his name.

On the other hand, there are doctors and practitioners who make it clear that you are taking up too much or their time, or wearing their patience thin with your illness –mentally placing you, perhaps unconsciously, somewhere in the category of the famous Freudian hysterics (especially if you are a woman). They don’t respect their patients. I can’t help but think of the story of one young woman, now president of a large advocacy group for autoimmune disease, who was in her early thirties when she began suffering from severe muscle fatigue and disabling weakness. Her doctor, whom she’d seen eight times, was unable to come up with a diagnosis. “We’ve given you every test known to man but an autopsy,” he said. “Would you like one of those, too?” She was later diagnosed with myasthenia gravis by a doctor who took time to understand the complex portrait her symptoms and lab work presented. I recall, in my own health tribulations, seeing a doctor who, despite my history of severe autoimmune issues, paralysis and other complications, yelled at me in his office: “Yesterday you came in here saying you were nauseous and now today you say you have diarrhea! Make up your mind, which one is it?”

The next day I ended up in the E.R. and was hospitalized. While I was there I was treated by a GI specialist who came into my hospital room on several different occasions at the end of the day and sat down, his briefcase on his lap, to talk to me about pursuing wellness strategies outside the box. The hospital by that hour was growing quiet and dark, he had already seen me earlier in the day during the requisite rounds, and his day was now done. Yet he had enough compassion for a mom with two young children to take time to educate me about how to approach my GI problems more holistically – advice which, over the next two years, would lead to turning around my GI symptoms. Of course, delivering compassion means building time into the patient doctor relationship to allow for that extra, meaningful exchange – a conundrum in a health care climate that has shaved the average doctors’ visit down to a mere matter of minutes. I would bet that a doctor who has been consistently stripped of time has also been stripped of compassion.
The question health care professionals need to ask themselves is this: which type of practitioner would you prefer to see? The one who gives you their cell number or sits with you after a tough diagnosis, or the one who speaks to you disrespectfully or impatiently? Granted, most practitioners fall somewhere in between, but patients search hard and long for the former and never forget them when they are lucky enough to find them. Compassionate doctors emerge as a central figure when patients share their healing stories.

2) A Deep and Growing Fund of Knowledge. Of course compassion alone hardly makes for a good healer. If a health care specialist doesn’t possess a deep fund of knowledge — and the curiosity to constantly keep abreast in their field to extend their acumen — all the compassion they can muster can’t make up for what they just don’t know. One woman consulted three local doctors several times each over eight months; they all missed her multiple sclerosis. She then saw a university hospital specialist who suspected MS in the first visit, ordered a series of tests, and diagnosed her disease that same week. “Why didn’t those other three doctors even know enough to suspect MS?” she asks. Another young woman described suffering from severe thirst, dizziness, fatigue, and a 20-pound weight loss over three weeks, but the doctor she was seeing dismissed her complaints and told her, “You just need to gain some weight. Go have a banana split and you’ll be fine.” A few hours after that appointment, a friend found her in a near-diabetic coma on her sofa and rushed her to the E.R., where she was diagnosed with type 1 diabetes. “How did he miss it given the state I was in?” she asks. These stories become the doctor-who-didn’t-get-it lore that patients so often vent about with each other.

But patients also share positive stories about practitioners who, although they may not have ready-made answers, commit time and energy to solve their patient’s case. One patient suffering from severe fatigue and poor appetite for half a year told me of his relief in finding such a doctor. He had already been to two doctors who “couldn’t find anything” (one of whom handed him antidepressants). A third physician confessed that he, too, was perplexed, but he took a different approach. He put his hand on his patient’s shoulder and reassured him, “I don’t know what’s causing this, but I promise you we’re going to figure this out together.” Likewise, another patient talks about meeting a doctor who surprised and moved her by asking her to “start by telling me about the last time you were well.” This patient confesses, “No one had ever asked me anything like that before.” Indeed, this doctor’s narrative approach to obtaining her patient’s medical history was just the first of many ways in which she showed her commitment to helping this patient toward recovery.

3) Open to Complimentary Approaches. In a health care world in which the majority of patients now use alternative medicine, it’s a given that patients want physicians whose fund of knowledge includes being well-versed in complimentary medicine. Patients seek doctors who are able to offer advice on food as medicine, safe supplements, exercise, stress management, and who are willing to move beyond disease labels to delve into what combination of factors may lead to a patient to falling ill in the first place. But this kind of physician can be tough to find. Hundreds of patients (including many with inflammatory bowel disease, a disease whose course is known to be influenced by diet) have told me that the physician or specialist they see never mentions diet or supplements to them at all. Yet, by working with a nutritionist whom they seek out, or by researching the role of nutrition in their ailments on their own, they are able to help turn their disease around.

When patients find the rare physician who competently blends Western and complimentary approaches they stick with them, and they refer other patients to them as well. One young woman with rheumatoid arthritis told me about her relief in finding a doctor who not only helped her sort out the side effects among her choices of medications, he also emailed her recent groundbreaking studies to convince her to make dietary changes that would improve her health. Patients today take a proactive role in their own wellness journeys — and they view allopathic physicians who rely solely on drugs as being out of touch with the growing data that exists on how lifestyle factors impact one’s well-being. Of course, office visits that allow time for discussions of diet and lifestyle as well as writing prescriptions take longer – and patients are choosing health care practitioners who have built that buffer time into their patient schedule.

4) A Champion of Hope. Patients seek health care specialists who avoid focusing on negative outcomes and referring to diseases as “degenerative” or “progressive,” and who, instead, offer as part of their Rx the conviction that their patient can and will have a hopeful, positive outcome. Indeed, patients love to tell stories about how their practitioners’ encouraging statements of hope and healing, statements that emphasize the miracles the human body is capable of, often become the patient’s own inner affirmation that they can and will be well. One woman’s doctor told her, during a particularly difficult time in her battle with cancer, “You are going to beat this and you are going to live a totally normal life.” This doctor couldn’t know that to be true, but by saying it with conviction, she helped her patient to believe it too and might just have helped to save her patient’s life. At least her patient – ten years later – believes that her doctor’s faith helped to pull her through.

In my own health history, this certainly has been the case. The neurologist who sat beside me those long hours after diagnosing me with Guillain Barre later saw me through a repeat episode of the disease. The second time Guillain Barre strikes (and it is rare for it to strike twice) it is much more damaging. It took me five months to learn to walk unaided again. During this time, several other neurologists at the hospital where I was being treated made it clear that they were dubious that I would ever regain my mobility. I asked my neurologist, “Why are they all warning me to prepare for the worst?” He shook his head. “Don’t listen to that,” he said. “I’m your doctor and I know you. Patients have recovered and been able to walk again after having Guillain Barre twice. I know you. They don’t know you. And I know that if it can be done, if it is possible, then you will do it.” Could he have known, as he said these words, that his reply would stay with me day in, day out, that long, hard summer, as I spent hours in grueling physical therapy, first learning to walk to the door of my bedroom, then finally – five months later – down the steps and out the door?

Health care professionals who offer up compassion, a deep fund of knowledge of both Western and complimentary treatments, and a heartfelt prescription for hope facilitate better patient outcomes. But that’s not the only good news. In my work, I also talk to and hear from numerous doctors and health care practitioners who tell me that when they offer this “recipe” to their patients, their lives as healers become imbued with greater meaning, and their own work life is all the more joyful and rewarding.

Such an Anti-Autoimmune Diet focuses on lamb, chicken and turkey; fish with low mercury content such as flounder or tilapia; hormone-free eggs; vegetables; fresh fruits; and gluten free grains.  What have your experiences been with diet and recovery?  I’d love to hear.

Since The Autoimmune Epidemic came out I’ve heard from key scientists from around the country who wanted to make me aware of additional groundbreaking studies on the effects of environmental chemicals and pollutants on the immune system (in addition to the dozens I discuss in my book).

As with global warming, the evidence continues to steadily, quietly mount that as we toxify our environment we are toxifying ourselves. As we leave a carbon imprint on the world around us we leave an indelible chemical imprint within. Here are some recent findings on what top scientists are uncovering about the toll that chemical imprint is taking on our human health:

John Peterson Myers, Ph.D., chief scientist at Environmental Health Sciences, and co-author of the classic book Our Stolen Future , has a fascinating — and disturbing — paper on low dose exposures and their effect on the human immune system:

http://www.environmentalhealthnews.org/sciencebackground/2007/2007-0415nmdrc.html

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Meanwhile, a recent international meeting of the Japanese Society of Allerology also focused on low level exposures to chemicals heightening immune system sensitivity and responses. Several papers — both of which describe heightened immune system reactivity far beneath levels of contaminants currently considered toxic — attracted a lot of attention:

http://www.ourstolenfuture.org/NewScience/oncompounds/phthalates/2006/2006-1010takanoetal.html

http://www.environmentalhealthnews.org/newscience/2007/2007-0401naritaetal.html

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Dr. Joachim Mutter, MD, wrote to tell me about studies on mercury triggering autoimmune disease and writes:

“(a) In animal studies, mercury was found to trigger, accelerate, and exacerbate autoimmune diseases such as lupus-like syndromes (Via 2003)
(b) Higher incidence of diabetes among mercury poisoned individuals (Uchino 1995)
(c) Autoimmune development of Multiple Sclerosis can be provoked by mercury and other metals (Stejskal 1999b)

Constant low-dose mercury exposure, as is typical with amalgam bearers, has been considered as a cause for certain autoimmune diseases, such as multiple sclerosis, rheumatoid arthritis, or systemic lupus erythematosis (SLE), by many authors (Bartova et al., 2003; Berlin, 2003; Hultmann et al., 1994, 1998; Pollard et al., 2001; Prochazkova et al., 2004; Stejskal and Stejskal, 1999; Stejskal et al., 1999; Sterzl et al., 1999; Via et al., 2003; Sterzl et al., 2006).”

…and he says,

“These effects can occur with exposure below acceptable safety limits (Kazantzis, 2002)”

Here’s a trick on how to quickly read the above studies for yourself — and do your own research. You can look at these studies by going to Pubmed — via the U.S. National Library of Medicine at: http://www.ncbi.nlm.nih.gov/pubmed/ – and input the author + date + mercury in the following format (for example):

Bartova[Author] AND 2003[Publication Date] + Mercury

The study will appear if it’s still in the databanks (older studies may not be). This way, you can do a bit of your own research and read the original abstracts of many of these papers on mercury and the immune system and see what you think.
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Meanwhile, Dr. Arlene Blum, MD, is working on helping the public to better understand the health consequences of flame retardants. You can learn more at:

http://greensciencepolicy.org

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And one upcoming study, not yet published by a group of researchers from around the country, shows what may turn out to be the most startling news of all. While current tests to determine levels of chemicals and pollutants are done by analyzing blood, urine and hair, scientists are finding that the levels of toxins are significantly higher when they test for these toxins in our fat.

This isn’t really surprising since it’s in our fat that we store toxins. What is surprising is the tests these scientists have done which show that levels of PCBs and chlorinated pesticides found in our fat are, on average, one hundred times higher than what shows up in our bloodstreams and urine.

Blood chilling indeed.

Please also check out my website at donnajacksonnakazawa.com for more information about the factors that are combining in our 21st Century life and causing our immune systems to be overtaxed.

Let me know what you think of the gathering evidence that we’re outpacing our evolutionary ability to keep adapting to so many chemicals and pollutants in our world.

The first step is to stop eating the trigger foods that activate the disease process. Reduce intake of saturated fats, most importantly animal and dairy fats. Keep to less than 15 grams per day- and sugar in great quantities. There are five food groups to which people with MS are found to be most often sensitive. These are gluten containing grains and wheat, dairy, eggs, legumes and yeast. Each person has a unique food sensitivity profile, which can include foods not among the usual suspects. Digestive tract health is crucial so use caution or cease to use: tobacco, caffeine, NSAIDS (aspirin, Tylenol), antibiotics, antacids and alcohol as they can be damaging to the digestive system.

It is very important to be well nourished with nutrient dense foods. The following will help to heal the digestive system (leaky gut) and speed recovery: lean protein, vegetables/fruits, foods rich in antioxidants, raw foods for enzyme support and probiotics. Drink plenty of water; get sunshine (vitamin D) and exercise. As time goes on you can reclaim movement, sensations, your cognitive abilities, and full energy.

Q. What would a typical day’s food choices look like for breakfast, lunch and dinner?
A. Dinner can be a chicken or fish, steamed vegetables, a salad and potatoes. Lunch might be a salad with some protein and roasted root vegetables such as turnips, parsnips or rutabaga, or other fillers (sweet potato, taro root or celery root). Breakfast reflects the greatest change from the usual diet. Breakfast can be soup, leftovers from dinner, baked sweet potato, along with some protein like turkey bacon.

Q. How can the diet be implemented simply?
A. The fastest and most effective way, for the first several months, is to stop eating the five usual suspects as well as limit saturated fat and sugars as described above.

The initial healing will have its ups and downs. The return of your ability to do more will happen step by step at first and setbacks happen easily due to stress and fatigue, or if you come down with a virus. Don’t be discouraged. Keep following the diet. When subtle changes in symptoms can be discerned and you feel better, you can begin testing foods to see if they are triggers for you. As you continue to progress, you will refine and individualize the diet for your healing. Begin to exercise more as your healing becomes more solid and permanent.

For the best healing make sure you eat enough nutrient dense foods with an emphasis on protein and vegetables. Keep stress to a minimum. Remember that sleep and rest are treatments. When you have a return of energy or abilities, don’t overdo it. You still need to use your body’s energy to continue to heal.

Q. For whom will it work?
A. A good research study has never been funded to explore all the aspects of this dietary treatment, so we don’t know for sure. However the recovery diet seems to work for everyone who really follows and works with it. How quickly improvements are seen is highly variable. The road is bumpy, but if you stick with it and listen to your body, you will heal and recover. It takes time, persistence, patience and determination.

In 2005, when I found myself paralyzed for a second time from GBS — unable to move much more than my head, unable to reach out and hold my young son or daughter, I had many long months to think. I was struck by the fact that I was lying just a few floors away from where my own father had died in 1972 — 33 years earlier — from what would certainly now be diagnosed as autoimmune disease. My dad checked into the hospital to have part of his intestines removed — for an inflammatory bowel disorder. He was also on heavy doses of steroids for what was very likely rheumatoid arthritis (though we wouldn’t have known to call it that at the time). A few hours after his surgery, his surgeons realized that the steroids were causing the surgical sutures to dissolve. There was nothing to be done. He never came home.

There one day, playing checkers and taking us out for a sail, then ripped away from us, a young father of four — at the age of 42.

Thirty-three years later there I was — paralyzed by a neurological autoimmune disease — with my own two children at home, and told I might never walk again. Every fiber of my being wanted to get up and walk out the door of that hospital, raise my young son and daughter the way any other mother might, love them, tie their shoes, smooth back their hair, dry their tears, play checkers and chess, toss the football, go for a jog beside my kids on their bikes, or even just stand at the sidelines of a lacrosse game and cheer – all the things my dad just didn’t get a chance to do for very long with me.

I’m walking well now, after a long haul. Like many of you, I have good days and bed days; a kind of mercurial up and down that most autoimmune disease patients know all too well. And even on the best of days it’s a little like having the flu by seven p.m. I know, from the hundreds and hundreds of letters and emails that you’ve sent me, that you know how that feels, too. Like all of you, I am continually searching out — and implementing — ways to become as healthy as I possibly can.

And that’s what THE AUTOIMMUNE EPIDEMIC has really been about: helping you, the patients, to understand both what goes into your “barrel” to play a role in triggering autoimmune disease – and what you can take out of that barrel to help ameliorate disease and move toward your optimum level of health and well-being.

There are so many of us out there searching for these answers. Rates of autoimmune diseases have tripled in the last four decades and 1 in 9 women (and 1 in 12 Americans) can now expect to have an autoimmune disease. Indeed, a woman today is 8 times more likely to have an autoimmune disease than breast cancer.

In listening to your “Letters from the Autoimmune Epidemic” you seem to be particularly interested in sharing your ideas and insights about what works and what doesn’t in terms of helping you move toward wellness.

It is my deepest hope that this site will become a place where we can all support, educate and help each other.

I urge each of you to post your story — your “Letters From the Autoimmune Epidemic” — below.

What has given you hope? What helps you on the road to health and what do you need to avoid? We can all learn from your observations.

The registration process allows you to maintain as much privacy as you need.

Working together, perhaps we can make sure that we all get to be the active, vibrant parents and spouses and friends — or kids-growing-up-to-have-normal-lives — that we long to be. Isn’t it time we raised our voices in unison to make change happen? Let’s raise our collective voices — now.

My father would have loved to have had that chance. Let’s not waste it.

2) Autoimmune disease research still gets one-tenth the funding of cancer (despite the fact that autoimmunity afflicts close to three times the number of people).

3) Autoimmune disease is still not a reportable disease (doctors don’t have to report data to any national registry when a patient is diagnosed with autoimmune disease — the way they must when a patient is diagnosed with cancer) so we still don’t really know how many people really have these diseases. Indeed, our ballpark number of 24 million may be much lower than the reality.

For decades, not much happened in terms of our progress in diagnosing and treating these diseases, either. But we’re now entering a new era of understanding as to how these diseases attack the body and how to treat them – not just with emerging drugs but with a whole new range of approaches that are often driven by patients searching for a road to wellness.

We can share that knowledge today as never before and help change the course of these diseases.
What do you think needs to happen — on a national level?

However, because most toxins are found in trace amounts, it has been difficult to gauge what effect they might be having on our health. Yet both lab animal and occupational studies of human beings provide us with disturbing insights into how even low exposures to chemicals can cause our immune systems to go haywire. For example, mice exposed to common pesticides – at levels four-fold lower than the level set as acceptable for humans by the EPA – are more susceptible to getting lupus than control mice.  Mice that absorb low doses of trichloroethylene (TCE) – a chemical used in industrial degreasers, and that can be found in your dry-cleaning, household paint thinners, paint strippers, glues and adhesives – at levels deemed safe by the EPA, and equal to what a factory worker today might encounter, quickly develop autoimmune hepatitis.  And low doses of PFOA, a breakdown chemical of Teflon – which can be found in nonstick cookware, car parts, flooring, computer chips, phone cables, Stainmaster carpet guard, upholstery, new clothing (particularly kids’ clothing), grease-resistant French fry boxes, the disposable cup of soup that you warm up in the microwave, and disposable coffee cups like the ones you get at your local coffee shop) — can be found in 96 percent of humans tested for it.  In recent studies, immunotoxicologists have been unable to find a dose that didn’t alter the function of immune cells at each major step that the immune system takes in trying to protect us against foreign invaders.

Even tiny doses of BPA, a plastics building block used in everything from safety helmets, dental sealants, baby bottles, and eyeglass lenses to every-day processed food packaging, has been shown to change basic cellular function at levels currently present in blood samples taken from people as well as animals.

Proving an absolute link between chemicals and autoimmune disorders in humans is hardly easy.  Researchers can expose rodents to low doses of chemicals and look for signs of autoimmune disease roughly six weeks to three months later.  But in humans, a comparable time span between exposure and disease might be forty years.  Indeed, lab work in longitudinal studies of people shows us that autoimmune diseases are often long, slow-brewing conditions that can quietly smolder in the body for a decade or more before actual symptoms of disease appear. Moreover, it may be that a combination of exposures rather than any acute single dose at a single time increases one’s risk of autoimmunity, conditions that are hard to replicate in animal studies.

I suspect that on some level we don’t want to face what all this research is telling us. We don’t want proof, because even if we agree that the soup of chemicals we’re all carrying around within us is harmful, what do we do about it?  Talking about the autoimmune epidemic is a bit like talking about global warming before the movie An Inconvenient Truth was released. For the longest time, we couldn’t see, or didn’t want to see, that the smallest rise in temperature would melt the polar ice caps.  Likewise, we don’t want to know that the ways we’re polluting our environment are also harming our bodies and causing our immune cells to go haywire.  In the international medical world, the scientists who study autoimmune disease now call this epidemic “the global warming of women’s health.”  Yet the reality that the environment plays a major role in triggering these diseases hasn’t yet trickled down to the rest of the population.

It would also be helpful to raise more public awareness about the problem by giving the environmental triggers of autoimmune disease a name.  Despite all this mounting evidence, there still exists no word comparable to “carcinogens” in our cultural lexicon to describe the notion that environmental chemicals might be linked to autoimmunity. The term “autogen,” I believe, would prove useful to refer to the toxins, viruses, and every day chemicals we know can play a role in triggering autoimmune disease.

The National Institutes of Health recently stated that investigations of exposures to chemicals as triggers for autoimmune disease are now of “considerable research interest.”  That may be true, but they have yet to show researchers the money.  With 24 million Americans  – and one in nine women – suffering from autoimmunity, the NIH allocates only $591 million dollars for autoimmune disease research each year.  Contrast that with the $5 billion annual budget for cancer, which afflicts 9 million Americans.  The NIH budget for cardiovascular disease – which affects 22 million Americans – is four times that of autoimmune diseases.  We have waited too long for Congress to allocate funding to find out what toxic exposures, or combination of exposures, can cause our immune systems to turn against us.  Congress needs to do better.

However, immunotoxicologists at our research institutions agree almost universally that the hygiene hypothesis is hardly enough to fully explain today’s autoimmune epidemic.  At the same time that we are living with fewer exposures to natural pathogens, we are coming into contact with many times more artificial invaders in our day-to-day lives.  So that at the same time our immune systems may be confronting less natural dirt and muck and deadly outbreaks of disease, we’re encountering an endless slew of artificial toxins that confuse and overtax the immune system.  Interestingly, immigrants from other countries who are exposed to numerous infections and have few vaccines as young children develop allergies and autoimmune disease at rates similar to those of Americans soon after they immigrate to this country.

Today’s children are the high stakes pawns in this game: pound for pound they eat more food, drink more water, and breathe more air than we adults do, and their immune systems are still developing and vulnerable.   It’s as if we are all unwitting participants in an uncontrolled human health experiment as we document how the rising levels of toxins and pollutants in our blood are resulting in climbing rates of autoimmune disease.