Finally, my story is told to give something back to this most helpful website: a catalog of information that helped me to begin to understand the disease, and learn from the experiences of others who have lived with ITP.
It began in late May, 2003. I awoke in the middle of the night and became aware of several raised lumps on the inside of my mouth. Looking in the mirror, I saw a dime-sized blood blister on the inside of one of my cheeks, and two smaller ones on the top of my tongue; my gums were oozing blood. That was also the first time I noticed the bruises on my chest and leg. Since I had been diagnosed with ITP in childhood (I was 13 at the time; I’m now 55; I’ve had no symptoms since childhood), I recognized that these might be symptoms of that disease. A blood test at the Medical Department at my place of work revealed the unwelcome confirmation: my platelet count was 8K; the other blood counts were all normal. Self-examination found no liver or spleen enlargement.
I checked a number of websites for information on ITP – all the symptoms pointed to this disease. Since I had lived through the disease in childhood – although the symptoms were less severe – and the latest literature confirmed that the disease is generally not life threatening for an otherwise healthy person, I chose to adjust my activities to protect against trauma and to provide a low stress “healing” environment without medical care. My research had already found that the primary treatment for ITP had changed little since the late 1950’s, and these drugs and other second-line medications can produce toxic side effects (the PD website was extremely helpful in alerting me to these side effects.) Sometimes environmental factors can trigger ITP – I resolved to search for them. Further, while spontaneous remissions in adult ITP are rare, they can occur in 5% to 10% of patients – I was “up” for the gamble.
For the next two days, symptoms expanded to include: petechiae on both legs, as well as a few on the arms and face; several additional blood blisters (hemorrhagic bullae) on the inside of my mouth; feelings of weakness and mild nausea; and some knee joint pain. On the third day, all symptoms began to quickly resolve. I began to resume normal activities, but with some moderation of intensity. Three weeks after the initial symptoms, another blood test showed that my platelet count had risen to 53K. Except for an ongoing malaise, I thought the worst of the disease was over. That belief began to change less than a month later.
In early July, I awoke with two blood blisters, one on the inside of my cheek and one on the tip of the tongue. By mid-month, petechiae had returned to both ankles, large bruising was present on an elbow and a thigh, blue/black streaking was noticed near the front of the tongue, some bleeding of the gums was noted, and a general “un-well feeling” had set in. When I nicked my ear while trimming hair, nearly an hour of attention was needed to stop the bleeding; several hours later while sleeping, bleeding resumed, staining the pillow. Even though I was spending a lot of time resting and avoiding strenuous activity, conditions worsened.
Toward the end of July, I called a hematologist/oncologist for an appointment to confirm the diagnosis. Based upon my prior blood work and a physical exam, the doctor confirmed the ITP diagnosis. He ordered extensive additional blood work: the platelet count came back at 2K, MPV (mean platelet volume) was 3.9, and other blood factors were normal. The doctor prescribed daily doses of 80 mg of prednisone; I delayed, still seeking a cause and cure of the disease rather than just treating symptoms. Further, I was concerned that I had either a primary or a secondary bacterial infection that was causing the tiredness and malaise (these are not ITP symptoms) - the prednisone could suppress the immune system, allowing the infection to flourish. Certain infectious diseases – Helicobacter pylori (H-pylori) and Ehrlichiosis, for example – can also produce ITP-like symptoms. I requested an antibiotic; the doctor refused, but promised to test for H-pylori at my next visit. He strongly urged I start the prednisone: “It’s a matter of life or death”. In sickness, I began the prescribed medication.
Blood work at my next doctor’s appointment a week later, showed no improvement in the platelet count. The doctor immediately prescribed hospital outpatient administration of Winrho, 7500 IU. Three days later, my count was 94K – symptoms were resolving. A week after the good news, the platelet count was back down to 5K; other blood factors including red and white cell counts were now also below normal (the H-pylori test was negative). For the first time, the doctor stated I had Evans Syndrome, an autoimmune disease attacking both the platelets and the red blood cells. He stated I was a candidate for chemotherapy and splenectomy; he wanted to immediately admit me into the hospital – I refused. Instead, he prescribed another 7500 IU of Winrho; I later cancelled the appointment for the injection.
Over the next week, after the news that the Winrho treatment was short-lived, I experienced an increasingly focused “congestion” in my chest in addition to all the ITP symptoms. By the time of my next appointment at the beginning of August, my blood pressure had risen to 138/90 – way out-of-line for me. The blood count remained at 5K. Again, the doctor strongly recommended hospitalization and aggressive drug “therapy” including IVIg, Winrho, prednisilone, and a cocktail of third-line medications (Vincristine, Danazol & Imuran). By then I had received the hospital bill for the 1st Winrho injection (K$19.2), was set against an experimental “cure” using toxic drugs, and was convinced of a bacterial component to the “congestion” and malaise I was feeling; I refused hospitalization. In a compromise, he agreed to prescribe an antibiotic of my choice (doxycycline, 100 mg, bid) with the understanding that I would consider his treatment if my condition did not improve. Almost immediately after starting the antibiotic, the “congestion” subsided and I began feeling markedly improved; the ITP symptoms continued, however.
By this time, I had concluded that the medical approach to this disease was a guessing game in which a variety of powerful (and toxic) drugs would be used to raise the platelet levels; there would not, however, be any attempt to identify and eliminate the cause of the disease. It reminded me of the stereotypical witch doctor, cloaked in mystery, speaking unknowable incantations, blending unfamiliar herbs and potions…to give to his “victim.” (I learned from my brother-in-law, who lived in Africa for 10-years, that the witch doctors there are really very good at their trade. Apparently, if a patient becomes more sick, or dies, the community forces the “healer” to take his own medicine - the bad ones don’t last very long.) Without my doctor’s approval, I began to aggressively reduce the prednisone dosage; by early August, I was completely off this, and all other drugs.
Instead of seeking a medicinal cure, I was now committed to finding alternatives. After extensive on-line research, I began to notice a thread of evidence that nutrition played a significant role in the health of the body’s “healing system.” While intuitively I had resumed taking 1000 mg vitamin C around the middle of July (a habit discontinued 6 months earlier), it wasn’t until the end of August, extending into mid-September, that I had significantly altered my diet. While the dietary changes were introduced gradually as I learned more about the subject, the final result was revolutionary: anti-oxidant vitamins A (as beta-carotene), C, E, and the mineral selenium; vitamin B complex; the detoxifying herb milk thistle; flax seed (as a source of omega-3 fatty acid); reduced protein intake with no meat except skinless chicken breast and fish; no oils, butter or other fats except extra-virgin olive oil; no processed foods; plenty of fruits, vegetables (even began juicing raw vegetables) and coarse grains; no coffee – green tea instead.
Through the month of August, I continued taking the antibiotic for twenty-one days – the recommended duration to treat one of the possible infectious agents associated with thrombocytopenia, Ehrlichia. During this period and the period immediately afterward, many of the ITP symptoms seemed to worsen. Some of the most pronounced petechiae outbreaks on the legs, pelvic region and even on the face occurred. Blood blisters inside the mouth and red or dark streaking of the tongue were common. Occasional bruises were large and vivid; toward the end of this period, calf and leg muscles ached. By the second week in September, I started to feel that the illness was turning around. Over the next two weeks, all the symptoms fully resolved.
My next doctor’s appointment on September 25, confirmed the good news: platelets – 90K, MPV – normal, red and white blood cells – normal. The doctor was incredulous; he had the blood sample retested. “What did you do?” he asked. I explained that we had discussed the approach: an antibiotic and nutritional changes. A book I had recently completed reading was mentioned that succinctly captured this approach: Spontaneous Healing by Dr. Andrew Weil. While my doctor had heard of the author, he confessed what I fully expected: he would not read the book.
It’s been more than two weeks since I’ve been symptom free. My energy levels and strength have returned to near normal. I’ll be going back for follow-up blood work toward the end of November. I have no doubt that the blood count numbers will remain normal.
If the unexpected does occur and I relapse, there are other healing aids that would be interesting to explore further. In addition to the nutritional changes and vitamin supplements, controlled fasting, colonics, other herbal tonics, and visualization and other alternative therapies are available to enhance the healing process. Even certain herbal blends prescribed in traditional Chinese medicine (TCM) would be considered, but only if the other approaches failed.
This experience has been life changing for me. I now realize that while appearing healthy to others, and even to myself, I had been mistreating my body with the food I was eating, and by other environmental and emotion-created toxins. The nutritional changes made will continue (although with less rigidity as my health sustains.) I plan to stay ahead of another physical crisis.
Perhaps most importantly, I’ve learned that modern medicine, while indicated for broken bones, other severe trauma, massive bacterial infections, vaccines, and some other serious acute conditions; for autoimmune and other chronic diseases, viral diseases, and most other health issues, the body’s own healing system is perfectly devised to manage the task – it sometimes just needs a rest from what can be an overwhelming task.
Since my ordeal in 2003, I've been in excellent health. Shortly after writing the PDSA article, my platelet count returned to normal (>200K). I've had no recurrence, take no medications of any kind, continue to choose healthy food options, and take a limited selection of vitamins and minerals. Physical exercise
- whether hiking, biking, gym, gardening or home maintenance - is a regular, enjoyable part of my weekly routine.