ITP Personal Stories

Persistence Pays

Well it is the second anniversary of my experience with ITP, and a strange two years it has been. During this period I've gone through many experiences related to this thing called ITP that I would like to share with you all. Like many of you I have asked why me? What caused it? Can I get rid of it? What should I do? And many more questions and occasionally an answer. Believe it or not for me most of the answers were obtained from this site or a source it referenced. As a point of reference in the following history: I've been around for at least a half-century; male; have not experienced bleeding, bruises or 'red spots'; count never below 50-that I know of.

For some history and background. I was diagnosed as having ITP by accident in April 1996 while undergoing a physical. Part of the physical was a blood test which gave a result of 50K. The physician believed the blood analyzer was broken and ordered another test on a different machine with the same result-50K.

Enter the hematologist with yet another test to verify the previous tests and to test for other factors such as HIV. The next test was a bone marrow extraction. The results was that I was producing more than enough platelets, thus the diagnosis was ITP. I was given Prednisone at 60 mg/day. I misread the directions and took 20 mg every 4 hours, rather than one dose in the morning. After two weeks my count reached 115K. As an aside I accomplished 8 weeks of work in two. My normally lethargic nature was running at hyperspeed for those two weeks.

The next treatment a month later was to take 200mg/day of Danocrine. I took the stuff for two weeks with a resultant count of 135K. I later learned that I was supposed to be taking the Predisone along with the Danocrine. I think part of the theory was to "jump start" my immune system back to normalcy.

The next step in treatment was to have the spleen removed. However, before I made that leap, I wanted to try an alternative method.. I still remember a magazine article (circa '75) about a Dr. Carl Simonton in Ft. Worth, TX. He ran an experiment with his cancer patients using meditation in addition to the regular cancer treatments. Those that stuck to the meditation exercises showed significantly better results from the treatments. I had mentioned Simonton's name to the hematologist and he said he was familiar with Simonton's work. When I said I wanted to try an alternative approach, before agreeing to a splenectomy, I got no encouragement; more of a "I don't think it'll work look." If anything, Simonton's work was alternative.

After about three months, and the count steadily dropping from the 135K, I was getting pressured to start taking Prednisone again to build the count up in preparation for the splenectomy. Fortunately for my inherited stubbornness, I put the hematologist off awhile longer, and decided to try acupuncture.

From 12/96 to 3/97 I underwent weekly treatments with a needle stuck in my right toe and periodic herbal teas. At the start of treatments my count was at 64K. Within a month of acupuncture treatments my count rose from 64 to 82K. I thought I had found the answer. Along with the treatments I stopped drinking my beer a day, reduced my smoking to nil, and changed my diet to more veggies and fish, essentially avoiding meat. Then in 2/97 the count dropped to 69 and steadily downward to 52 in March 1997. I discontinued the acupuncture treatments since the counts was dropping.

What a bummer. In reflecting back upon this time period, I think other stronger factors entered the picture. In 12/96 I took early retirement based upon some promises that were not kept. Now I was unemployed, probably unemployable, and not ready for the 'luxury' of retirement. Depression is a hell of a disease. Anyway, in 4/97 I was looking for answers to not having a splenectomy and the acupuncture didn't seem to be working. As with synchronicities, I stumbled across Dr. Weil's book, "Spontaneous Healing" and "8 Weeks to Optimum Health". Based upon it, I started using his antioxidant formula of 2000mg, vitamin C; 400 ISU, vitamin E; 200mg selenium; and 20,000 ISU betacarotene. And I took up smoking again, drinking my beer or two a day, and eating whatever I wanted.

As undisciplined as I am in some areas, I didn't complete the '8 Weeks' regimen, but did continue with the antioxidants faithfully. In 5/97 I moved from Texas to Florida, begrudgingly. In Florida I obtained a new hematologist. The first CBC showed my count had risen from 52 to 76. The hematologist was unaware I had been on the antioxidants for over a month. He "encouragingly" told me there were no magic bullets for ITP and suggested I start taking 2mg of Prednisone a day. Enter stubbornness again. I said I would consider the Prenisone, but would wait until the next blood test. Two weeks later the count was at 92K. The hematologist no longer pushed for me to take Prednisone.

For the next few months (7/97-1/98) the count varied between 70 and 94K. Two counts (70 & 71) can relate to probably not handling stress very well. I started a new job, and 6 months later was delivering the results of my labor at year end. Somewhere in the Oct/Nov timeframe I discovered the ITPPeople site. Gads, I wasn't alone in this thing called ITP. There were others looking for answers, and a few just as stubborn in wanting to solve the problem.

In January '98 I started taking a multivitamin in addition to the antioxidant formula. In mid January I decided to run an experiment with the OPC/grape seed formula that Julie espouses. In March 98 I started taking a multi-B vitamin to counteract fatigue. (A Joan Y. suggestion, I think.)

Now at my two year anniversary with no allopathic treatments my count this week is 98. What does all this mean? Did Michelle's vitamin C regimen work? Well, the figures show an 84.6K average over the period. The starting value was 52K. Did Julie's grape seed OPC formula work? The count prior to starting the grape seed was 71K; the last two readings were 85 and 98, respectively. Did the multivitamins and multi-B complex affect the grape seed results? I don't know. And then there is a third factor that may have affected the grape seed experiment, more about that later.

As the wiser ones on this site have stated. "We're all different; what works for one, may not work for another." However, they have also stated not to give up, keep looking, keep trying, keep contributing. Maybe somewhere in the above story is a synchronicity for you.

-- Bill