Oct 05

When the Body Betrays
In the US, 50 million people suffer from some type of autoimmune disease. This is the story of one woman's 25-year odyssey with an extremely rare and life-threatening disorder and how she has survived it, thanks to a combination of conventional and natural treatments—and a strong will to live.

By R.C. Stuart

    Immunity...One can know the basic meaning of the word, but we take the definition—and our immune systems—very much for granted. We don’t truly understand the concept until our own system goes haywire, which is what happened to me almost 25 years ago. My immune system, which I thought was supposed to take care of me, betrayed me—and I’ve been desperately trying to get it back on my side ever since.
    I was 20 years old, newly married, happy, working and, I thought, quite healthy. My husband worked in a hospital and we had developed a friendly relationship with his boss, a doctor. One afternoon the doctor friend and I had a conversation that changed my understanding of the word immunity forever.
    The doctor noticed that I had purple blisters on the inside of my mouth that I hadn’t realized were there. He immediately ordered a complete blood workup on me and I sat in the examination room wondering what the heck was going on. The next morning, I learned there was a possibility that I might have something called “fuzzy cell leukemia” and that the only way to know conclusively was to send a bone marrow sample to the Mayo Clinic and Johns Hopkins Hospital for analysis.
    I remember looking up at the doctor with what must have been a gaze that combined puzzlement and terror as he told me to hold steady and breathe. I then felt an excruciating pain as a needle punctured my breastbone. It was as if all my life energy was being drawn from my body into the syringe, and it took every ounce of will I possessed not to give in and allow my spirit to leave my body for good.
    The second morning of my hospital stay (“just for observation,” I was told) my doctor friend presented me with the “good news/bad news” scenario. I didn’t have leukemia, but I did have something very rare. In a matter of days, what I had thought was an indiscernible change in my body was diagnosed as idiopathic thrombocytopenic (throm-bo-cy-toe-PEE-nick) purpura, or ITP, a condition that causes the immune system to build antibodies against my blood, causing it to “thin” and making clotting almost impossible.
    The “I” in ITP stands for idiopathic, meaning the cause of the disease is of unknown origin. The “T,” thrombocytopenic, means there are a lower-than-normal number of platelets in the blood. And the “P” stands for the purple bruises where bleeding occurs just under the skin. This rare disorder can be triggered by a myriad of things, including something as innocuous as a viral infection or as serious as chemotherapy.
    You might have heard about ITP in the media recently when the actress Julia Roberts announced she was pregnant. Roberts is one of the approximately 20,000 people in the US who live with this extremely rare and odd disorder, a large majority of whom are female. The incidence of children with ITP is three to four times higher than in adults, but for the most part, kids hit with short-term ITP get over it. Adult, chronic, ITP, however, is a different story.
    Okay, so I’ve got thin blood. So what?” I said after I received the news. At least I didn’t have leukemia, right? Thin blood? I could cope with that. I’m on easy street. But I was soon jolted back to reality when the doctors described the ramifications of this disorder and its possible treatments. The wonderful array of options were:
   • A collection of experimental and chemotherapy drugs (some used for cancer patients) that had no solid record of consistent results.
   • Taking high doses of corticosteroids over extended periods of time. These ’roids wouldn’t transform me into a great power hitter, but would mask this immune malfunction and allow my body to recover and begin replenishing my platelet count.
   • Surgery to remove my spleen, which the docs felt had something to do with my disorder. “It’s a 50/50 shot,” they told me.
    If we didn’t do something and fast, there would be an exponential increase in the possibility of my bleeding to death internally or from some otherwise minor external injury. Just like that, I had been transformed from an active and happy camper to a fragile “hothouse flower.” Two voices resonated in my head. One was my own shouting, “I’m not ready to die.” The other was my mother’s, calmly and firmly reminding me that I was someone who could handle anything. Even as I watched my short life pass before my eyes, I took solace in that thought.
    At the age of 20, a 50/50 shot was not acceptable and chemotherapy and experimental drugs weren’t my thing. So I opted for the steroids because I was told they were safe, that people with allergies and asthma took them as a matter of course in their treatment. Sure there would be some side effects, but I could live (no pun intended) with that tradeoff, since in my condition I couldn’t live with a platelet count of less than 10,000 (a normal count is 150,000 to 225,000), and the prospect of sneezing and possibly rupturing a blood vessel in my brain or starting my menstrual cycle and bleeding to death were not appetizing options.
    So I took the steroids—90 mg a day for months on end. My hair thinned and grew out a different color. I gained 35 pounds in around three weeks and developed Cushing’s syndrome, commonly called “moon face.” I had nightmares and constantly had the shakes, but was still being told the effects were “minor.” I procured a copy of the Physician’s Desk Reference, which contained two full pages on the side effects of using steroids, but my hematologist and oncologist both assured me I was lucky and that things could be worse.
    Whenever I suggested that perhaps taking some natural herbs and supplements might be beneficial, the doctors argued against it. While a good vitamin might help reduce feelings of fatigue, they said, anything else would be a waste of time and money. I was also told that the condition could go into remission at any time, and that, hopefully, I’d stay in remission after this first round of steroid treatment.
    No such luck.
    During the next 20 years or so, my count would lower and I’d go back on the steroids and deal with the side effects, which as time passed would become more pronounced. But at least my immune system was behaving and I could live a somewhat “normal” life.
    I lived and worked on the West Coast during those years, a place where the pressure to be young, attractive and healthy could be downright oppressive. I couldn’t help what was going on with me, but I knew people were constantly judging me. One doesn’t talk about health issues in “La La” land, except in scandalized whispers over coffee about someone’s incurable cancer. One also never admits to needing to slow down; if you slow down in Los Angeles you’re treated like an aging actress—you cease to exist and someone younger, healthier and prettier takes your place.
    There were long periods when I worked strictly as a freelancer, which meant maintaining extremely expensive health insurance on my own. The “moon face” and weight gain I developed while on the steroids came quicker, were more pronounced during each period of non-remission and engendered a lot of insensitive stares and questions. I kept pictures of myself looking healthy and thin hidden in my lingerie drawer and I’d consult them every morning to remind myself that I really was a beautiful woman. During the day, among my friends and work colleagues, I made light of my condition. At night, in the solitude of my shower, I sagged and wept. I often pondered how long I could go on this way, and even what I would do if the day ever arrived when I felt I couldn’t.
    I did have my head together enough to become an obsessive researcher. I tried to learn everything I could about my disorder and how I could get off the steroids, which were doing more harm than good to my system. By age 30 I had suffered from neuropathy in my fingertips, allergies, and numerous colds and viral infections that would wipe me out for weeks at a time. The physical demands of work left me exhausted most of the time, despite good diet and exercise. My doctors continued to insist that none of these ailments were attributable to the side effects of the steroids, but according to my research much of the information on side effects was still considered anecdotal since there were no long-term studies available.
    I recently turned 44 and the condition recurred. Although I went back on the drugs, I realized I could no longer cope with the side effects and became determined to find another way to get my body healthy. I have always been a firm believer in natural healing and, with the exception of treatment for my ITP I had always approached any health issues in a homeopathic fashion. So this was it.
    I quit my job and went to my hematologist to discuss the availability and feasibility of more natural treatments. I underwent a therapy called intravenous immunoglobulin (IVIG), which involves the infusion into a vein of immunoglobulins, antibodies that are collected from human plasma. Not much luck. I was then offered “targeted antibody therapy,” which is another way of saying “chemotherapy.” It promised none of the side effects of traditional chemo, but after all this time I was determined to ward off any negative consequences.
    I pored through every reference book I owned and “Googled” until my eyes were bleary. If I was going on something as drastic as chemo, I was determined to use everything I knew about natural healing and supplements to ease my process. My Internet search turned up a website exclusively for those with ITP sponsored by the Platelet Disorder Support Association. The site features medical information and research on ITP and other immune and blood-related diseases and disorders. It also has discussion forums on the different concerns one has with a blood disorder, including live chats with others with the condition. The personal support I have received from the people who post on this site, www.pdsa.org, has been invaluable to me, as well as the research posted on the American Autoimmune Related Diseases Association website, www.aarda.org.
    I began juicing, taking a good multivitamin and using grapefruit seed oil extract to counteract candidiasis, a yeast infection that erupted under my skin while my body was inundated with yet more blood product. I added ginseng for balance and energy (despite its blood-thinning qualities) and damiana to help balance my libido. Natural soy, black cohosh, raspberry and green tea compound ameliorated my mood swings, which after a visit to my gynecologist I attributed to perimenopause. “Great,” I thought. “Now I have something else to feel weepy about!”
    I had also read about wheatgrass and how the juice is chock full of chlorophyll and very close to blood in its composition. I began drinking a freshly juiced ounce every day and in just a few days I felt less fatigued, more energetic and more full of life than I had felt in years.
    The treatments to end my immune system malfunction went well. There were no major side effects and my platelet count was very high. I had begun feeling like my old self again when on Christmas Day last year, my mother experienced kidney failure, followed four months later by quadruple heart bypass surgery. I spent months caring for my mom as she struggled back to health. I was sure that my count would drop dramatically, as it usually did in the past during stressful times. I dreaded seeing my hematologist and I continued with my supplement regimen. When my mother could finally take care of herself again, I had a platelet count drawn, waiting with trepidation and resignation for the bad news.
    In the hematologist’s waiting room, I looked at the results and could not believe my eyes. Although my blood cells were still a bit odd in structure, my platelet count was higher than it had ever been after treatment. In 24 years living with this condition, I had never been able to maintain a platelet count much above what the medical world considers “dangerously low.” My doctor of course was convinced that my most recent treatment had done the trick. I pointed out that the last platelet count after treatment was 174,000 and that the high count I was now showing, 224,000, was unprecedented in my experience with this disorder.
    That was three months ago. I am still in remission, my doctor feeling confident enough in my high counts to tell me I can now go on “watch,” which means only having blood drawn every three to six months and no doctor visits or treatment if my count stays high. I continue taking a strong multivitamin and a soy supplement; I plan on doing so clear through menopause, which hopefully should allow me to sidestep hormone replacement therapy. I take the grapefruit seed oil extract only as needed, and use the wheatgrass every couple of days to keep the oxygen level in my blood high.
    The longer I live with this disorder the more I realize that the key to staying on top of it is balance, and that Western medicine alone cannot truly help a person combat something like ITP or some of the more familiar autoimmune diseases such as systemic lupus erythematosus (SLE), multiple sclerosis (MS), type 1 diabetes, autoimmune thyroid diseases (Graves’ disease and Hashimoto’s thyroiditis), myasthenia gravis, scleroderma and rheumatoid arthritis. Anyone with an immune disease should read the Immune Diseases Research Plan by the Immune Diseases Coordinating Committee of the National Institutes of Health. The statistics regarding how many of us are affected by immune diseases and disorders are broad, as are the variety of the some 80 autoimmune diseases we suffer from.
    I’m looking forward to a time when the paradigm shifts—when taking the vitamins, herbs and minerals our bodies need is not viewed as “supplementation” but as a nutritional priority if we are to live longer, happier, healthier, less traumatized lives. Conventional medicine and supplements should be seen as working together for us, not as conflicting agents working against us. One may be able to fight these serious and sometimes mysterious diseases and disorders in a variety of ways. But in my case, I would not have been able to heal myself and have a better quality of life without supplements—and the will to get better.
    Am I completely cured? Of course not. I probably never will be. I’ll be dealing with a serious immune disorder for the rest of my life. But when something like your immune system betrays you, living well is the best response.

R.C. Stuart lives and works as a freelance writer in Wichita, Kansas, where she continues her successful struggle against autoimmune disease.

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