ITP Personal Stories

Short Stories

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If you have an interesting or unusual story, you can send it to us and we will consider posting it here. It should be 400 words or less. A link to your e-mail address is optional. When you write, be sure to indicate that you want your story published in the Short Story section.

Success with Muicle

I discovered I had a low platelet count of 78,000 in April of 1997, during a lab work-up. In early may I had a count of 81,000,then 93,000 at the end of May. Around June 20 I had a bone marrow test done. My count was at the highest it has been since diagnosis 102,000. The Dr. said the only abnormal thing found in my bone marrow test was that I am producing more platelets than normal (which are then being destroyed ). He told me that if my count went down again at all I would have to take cortisone treatments. After reading about all the side effects etc... with these treatments I decided to look for an alternative method.

The owner of the lab I have been going to told me about a young female patient of hers who also had ITP and SEEMED TO BE CURED after drinking a tea made from a plant named muicle (jacobinia). I called the mother of the young girl who told me her 11 year old daughter had been very sick with ITP, had frequent nosebleeds bruising etc... for about 2 years and that the Drs. had given numerous different treatments, of which none really helped. Someone told her about muicle and she made a tea DAILY by boiling 8 leaves in 1.5 liters of water until the water turned a slightly pink color (sometimes it will turn a golden color instead.) This tea should be drunk for 15 days then stopped for 15 days, then started all over again.

The young girl did this for about 7-8 months and has had totally NORMAL counts for well over a year. I DRANK THE TEA FOR 15 DAYS AND MY COUNT WENT UP FROM 82,000,TO 100,000. I just now am going to start again on the tea for another 15 days.

The muicle plant has a very thin, flimsy stock and the leaves are a dark green, oval shape. I have asked around with other people here who sell plants etc. for medicinal purposes and they all seem to know of the benefits of this plant for blood disorders. They also told me to try drinking a tree bark tea made from a tree known as CAPOMO here in Mexico. I haven’t tried it yet but I will soon. If anyone needs more info they can contact me at my e-mail address path99@pvnet.com.mx. Hope this can help some of you!!!.

-- Shar

Splenectomy - 30 Years of Remission

Hi….Name is Jim….I was diagnosed with ITP in March 1975 at age 21….looking back I noticed I was bruising a lot when I was in the 10th or 11th grade and everyone just said I bruised easily….I joined the Navy shortly after graduating from high school and the bruising got worse and worse….finally I went to sickcall and the blood test showed almost no platelets….I was admitted to Naval Air Station Jacksonville Florida Hospital where my platelet count was 7,000….I was put on prednisone and my count went up to 50,000 to 75,000 but no higher and when the doctors decreased the prednisone my count promptly dropped to 12,000….the decision was made to remove my spleen and my platelet count increased immediately….it was 170,000 the morning after the surgery and 215,000 the morning after and after a week it peaked at 440,000….I was weaned off the prednisone and over the years my count has been 320,000 to 340,000….after reading the many stories of people who underwent splenectomies and numerous other treatments that either didn’t work or only partially worked I thank the good Lord for these 3 decades of remission….my resistance to colds and flu is a bit weak and I had a bout of pneumonia 10 years ago….I cannot miss my annual flu shot and have to be very careful of tick bites….I am 51 now and look forward to many more years of remission and my prayers and thoughts are with all ITP patients….God Bless and love you all….Jim kc1km@verizon.net

Too Many Spleens

Hi, my name is Karen. I was diagnosed with ITP in March 1998. It came as a bit of a shock to me because all I had been experiencing was unexplained bruising on my arms and legs. My G.P. advised to do a blood test and the next morning I had a call from my doctor asking me to see her immediately. I was told that my platelet count was only 8,000. I was admitted to the hospital that very morning and referred to a hematologist. Initial treatment was prednisone and I was advised to have a splenectomy. So in late April 1998, I had my spleen removed. I had to stay in the hospital for several days before they decided that my platelet count was high enough to undergo the procedure. At one point, it went down to 1,000.

The results were promising after the splenectomy. My platelet count began to rise steadily and I was told to just go back for routine blood tests. But by July 1998, my platelet count had begun to fall again. A scan revealed that the splenectomy had failed to remove 'all' of my spleen and there were still 'pieces' left in my body! I couldn't believe this was happening as I was told that this situation only occurs to roughly 20% of patients who undergo splenectomies. As such, I had a second splenectomy in September, 1998 to remove the remaining 'pieces'. Since then, I have maintained healthy platelet levels but still go for periodic blood tests. I was finally taken off prednisone by January 1999 which was a relief because its side effects were not pleasing at all. The last time I checked, my platelet count was close to 300,000.

-- Karen

Was it the Virus?

My name is John and I am a 41 year old engineer, husband and father of two. Over Memorial Day, May 25, 1997, I came down with what I thought was the flu, sore throat and a light red rash on my chest. After laying around the house for few days I went to see a Dr. who stated he thought that I had Scarlatina. I was down for a total of 5 days which is very unusual for me.

A couple of weeks later I noticed some unexplained bruises on my legs. I also had night sweats and a mild sore throat that lasted for months. I went to the Cleveland Clinic and saw an infectious disease specialist and he was "cautiously optimistic" that I would get better on my own. He said that my ITP problems were due to my Memorial Day flu.

I was on lighter doses of steroids for six months that brought my count from a low of 10k to a high of 175k. My counts have stayed around a 100k for the last 24 months.

I don't know why Drs. give ITP patients so much Prednisone, perhaps it is the American culture of give me the instant cure. The most I had was 30mg...that was hard enough. I have a conservative Dr. and he saw no need to take mega doses as most Drs. are prescribing. Even at 30mg. I felt the power of the drug, brain fog, could not sleep, gain 20 pounds, and joint pain. The "simplified" theory as I have been told is that the virus that attacked us is similar in molecular structure to our platelets, our immune system is confused and attacks our own platelets, hence autoimmune disease! The steroids weaken our immune system and therefore it does not attack our platelets as aggressively and our counts go up. Steroids do not cure ITP they just raise your counts while your body fixes itself.

I am back to an active lifestyle and lost the 20 (Prednisone induced) pounds. Of things to get this has not been so bad and in fact it has raised my appreciation of what is really important in life. Other then having lower numbers and only occasional bruises I feel that I am essentially cured but I am very interested in hearing from other adults that have had a similar virally induced ITP history. Please contact me at jdkg4@cs.com

-- John in Ohio

What Next?

The Diagnosis

I knew something was wrong when I noticed small red spots on my ankles after getting slightly sunburned. The petechiae came and went. For the next year or so I periodically had spontaneous nosebleeds but several trips to my primary physician (a hematologist) failed to find the cause for this bleeding. I also noticed I bruised easily, sometimes spontaneously.

Finally, I started researching possible disorders that could cause these symptoms and determined I probably had some form of thrombocytopenia or leukemia. I consulted another hematologist and was diagnosed with ITP.

First Treatments

At this point (mid 1984) I was given prednisone. This treatment helped, but the platelet count dropped as soon as the prednisone dose was decreased. I had a splenectomy in late 1984 that only temporarily (<2 months) raised my platelet count. Although the splenectomy was considered a "failure" I think it allowed me to take a lower dose of prednisone to maintain safe platelet levels.

Ongoing Treatments

Over the next 12 years I had to take some medication to maintain a safe platelet count. I found that a high dose of prednisone for a week, then tapered, would elevate my count for about six months. A couple of times I took dexamethasone, and it also produced a several-month boost. The high doses of prednisone or dexamethasone made me pretty uncomfortable for about a month. Both danazol and dapsone were tried with little success.

My worst experience with side effects came when we tried pulsed high-dose dexamethasone with no positive results. I think this very high dose of dexamethasone caused a cataract in one eye about a year after I quit taking it, which has permanently blurred my vision. We also found that the lower dose of dexamethasone didn't produce a response anymore.

Even with the side effects I was able to lead a pretty normal life since we could keep the platelets >20k-30k. I was susceptible to infections (colds, flu), had poor wound healing, and usually needed an antibiotic to cure a sinus infection after a prolonged cold. I also had put on about 40 pounds.

A Change

In February, 1997, I got the flu. A blood test showed my platelets to be >200k but a week later were 15k, and it was no longer possible to maintain a safe count using a dose of prednisone that had worked previously. I have found a new hematologist and we will soon decide what to try next.

What Next?

Physicians at the Puget Sound Blood Center, University of Washington, have reported some good success with pulsed cytoxan (with a possible side effect of bladder cancer.) My hematologist is also considering having me participate in some drug trials next year, if the trials go forward. In the meantime, I thank God for every day, love my wife and kids, look for ways to have a positive effect on someone during the day, try not to worry about the small stuff, and keep on working.

-- Tim

Meet Taryn

Read Taryn' s success story on her own site.

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