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.

Greg's Platelets Come Back

The last 6 weeks have been a real roller coaster!

I woke up the morning of the 4th of June with blisters in my mouth and red spots on my skin. I also had bruises on my legs and arms. My family doctor acted quickly and the blood tests confirmed what he thought. I had ITP.

I spent the next 10 days in hospital care. I was first put on Prednisone at 65mg per day to which I did not respond. On the fourth day IVIg was started and I spent the next four days being infused; still no change. By day 8, my platelet count was still under 10. Finally by day 10 my platelet levels shot up to 46. The doctors still wanted to go ahead with the Vincristine that day in preparation for the splenectomy which was booked in to be done a few days later. Thankfully I managed to buy myself some time and was discharged to see if my body could repair itself.

Over the next several weeks, my platelet count went up and down. I hovered between 20 and 40 and finally decided to try some alternative methods. By researching the itp people website I found that Moducare Sterinol had been of help to some treating their ITP. I traced the supplier to an Australian distributor who put me in contact with a Natural Therapist only minutes drive from where I live.

I explained my situation to the Therapist. Basically I had a month to get my platelet levels above 80 or the doctors were going to remove my spleen.

He put me on the following:

Metagenics Immunocare (Moducare)
Innovative Therapies Leucostat (polypodium leucotomos dry leaf extract) for Immune balance
Ferrasorb (Folic acid, B12, Iron)
Mediclear (nutritional dietary supplement )
4life Transfer Factor Advanced(Bovine Colostrum Extract)

Within 18 days my platelet levels went from 39 to 152.

Now I’m not 100% sure which these products (maybe all of them) made the difference or how much of a difference they actually made. But what I do recommend is that anyone in the same situation as I was gives them a go. It’s surely better that losing your spleen.

I would like to thank those who have put together and contributed towards the ITP people website. The hardest thing I found with ITP was understanding it. The website gave me the answers and provided excellent statistical results which in turn led me to alternative treatments and quite possibly my solution.

Please contact my Therapist if you have questions:

Joe Sutich, Natural Therapist
Advanced Natural Medicine
87 Portage rd, New Lynn, Auckland, New Zealand
Email: joe.sutich@clear.net.nz
www.2bwell.co.nz

Finding the Cause

Sometimes there is an underlying cause. So I am telling this story in hopes that it may help someone else.

In early 2003 I was diagnosed as having ITP. For six months I was treated with multiple treatments/medications including: Prednisone, IVIG, Platelet transfusions, Danazol, Cyclosporine, Vincristine, and my spleen was removed. All without any improvement to my platelet count which averaged about 5000.

I was days away from starting Rituxan when my wife and I called a halt to treatments and insisted on searching for an underlying cause. We looked for everything; bacterial infections, viruses, H-pylori, parasites, cancer and anything else that might be going on.

After an exhaustive study a PET scan found one lymph node near my right shoulder that was suspicious. The node was less than a centimeter in size and had not been noticed on two prior CAT scans. After it was removed pathology indicated that it had a form of lymphoma called “Marginal Nodal Lymphoma”.

Three weeks after the removal of the lymph node my platelets started to climb going straight up from 5000 to 500,000+. Since November of 2003 they have remained high (400,000+).

I know that most people with ITP do not find a cause, but, especially for those that are new to the syndrome, I believe the search is necessary. I can also tell you that if it were not for our insistence (especially my wife who was a great advocate) I would probably still be hoping for a treatment that upped my count and I might still have an untreated lymphoma.

I am male and in my early sixties. I was treated at BJC better known as Barnes Hospital in St. Louis Mo. at the hematology department in the Siteman Cancer Center.

My prayers are with all that have ITP. I hope someone benefits from knowing that sometimes there is a cause.

My email address is: bill@wmfrench.com

-- Bill

Leonor's Cure

I was 22 when I first noticed the drop in my platelets during a routine physical in Aug.1997. I had them between 128,000 to 99,000 within a year. I went to see a specialist but it wasn't an extreme low count and I had no symptoms of anything. When I went back again in Oct.1998 they were at 9,000 only to drop to 1,000 in the 5 days I was hospitalized. They started the prednisone, some other steroid, folic acid, IVIG infusion twice and finally the rhogam injection that brought it up to a "safe" 22,000.

The research began and I was convinced that a splenectomy would be the only cure. One month later, at 19,000 the splenectomy brought it up to 200,000! I went back two weeks later and it began to drop again. I started taking herbal teas to cope with the prednisone side effects and a possible end to all this. I was taking about 11 cups of tea a day. The prednisone kept it up but every time I decreased the dosage the platelets went with it. That wasn't working for the platelets but it was great on the side effects. Not all of them though!

Finally my only choices were chemotherapy or experimental procedures. My father started researching and found Dr. Ba. Although I've only spoken to him on the phone, he's helped me so much. He got me started on this tea called Radix Rehmanniae Preparata and some in a pill form. It's a cake like tea that doesn't taste that good. After drinking two cups a day and four of the pills my platelets increased by 10,000 even after I started to wean myself off the prednisone. In May 1999 my platelets are at 70,000. My last prednisone was June2. Now on July 1999 I'm at 258,000. I still take my normal vitamins and now the Chinese pills. I really hate this illness but this was more like a blessing in disguise.... to take better care of myself.

-- Leonor

For more information go to www.getwellinternational.com.

Also see Marti's story

Prayer Helps

My name is Ralph and I am 56 years old. My introduction to ITP began last October following a trip to the emergency room. My platelet count in the ER was 3,000 and was accompanied by soft tissue mouth bleeding and petechiae on my legs. For the next six or seven weeks doctors followed an increasingly aggressive treatment plan until I could be stabilized. Counts climbed as high as 45,000 following hospitalization and initial treatment but abruptly settled back into the 8,000-12,000 range afterwards and on several occasions dropped into the 2,000-3,000 range again. Platelet transfusions were necessary four different times. Other treatment included IVIG, GammaGlobulin, WinRho, Prednisone, Laproscopic Splenectomy, Bone Marrow Biopsy, Chemotherapy (Cytoxan and Vincristine) and lots of prayer.

Shortly after the first chemo treatment in early November my platelets returned to pre-illness levels and higher. Further chemotherapy was suspended and Prednisone dosage of 120 mg/day was tapered off. No other medication has been required since and platelets are currently in the 545,000 range but have fluctuated gradually between 235,000 and the current level.

I recently had a hernia repaired that developed near the primary splenectomy incision. Surgeon speculates that high Prednisone dosage may have been a factor in retarding the normal healing. There have been no other complications from the repair surgery or the earlier splenectomy.

I believe prayer has played a key role both in the stabilization that occurred and in my ability to have carried on day-to-day during the interim. I also have had the benefit of excellent medical care and advice during this time including treatment review by Dr. James N. George, recognized leader in Platelet Disorder Treatment.

-- Ralph (RHeim@trailerbridge.com)

A Splenectomy Helps

Hello my name is Sydney and I am 13 years old. Up until about 3 months ago I had ITP. I was diagnosed about 4 years ago. My platelets were about 4,000. so they gave me an 8 hour drip of IVIg. Basically I was fine for 2 years. Then it came back. I tried steroids, platelet infusions, and a 7 minute push of Rituxan. They all made me sick . The 8 hour IVIg drip got me sick for a week at a time but it kept my platelets up for a few months and the steroids got me moody, emotional, depressed, nauseous, and also bloated. All of them had huge effects on me. After taking 6 months of steroids and gaining a lot of weight and having to go through all of side effects they thought I would be fine forever. But when I found out that they dropped again it really made me think about what I should do.

I had known that the steroids were not a good solution because of the side effects and it just took way too much out of me. I was only 12! My doctors then told me about a splenectomy and they tested my blood to see if it was an option, and it was. So after a few appointments my parents and I decided to take the chance and do it. So the day before surgery the doctors came and told me I had to spend the night there to test and monitor me. When I woke up the day of surgery they took me to the surgery area and we waited for them to put me asleep. They took me in a bed half asleep and I said good bye to my parents and all I remember was them taking me in a cold room and putting me to sleep.

When I woke it was done and I was in excruciating pain. They took me back to my room in a bed. What I remember was seeing my rabbi, my mom and dad, my grandma, and my granny. I was in the hospital for 3 days and healed back to normal in 3 weeks total. Since my surgery I have had 2 blood tests and they were fine (this was in a time period of 3 months at least). I can now live my life the way I want to and play every sport with no worries. I would totally recommend this surgery to anyone that is having troubles with keeping their platelets up. If you have any questions about the surgery, my story, or any kind of ITP problem don't hesitate to contact me. You can email me at sydneysunshine3@aol.com

Success with Shan Dong

I just wanted to share my experience with ITP and how I am able to raise and control my platelet count to normal levels.

Started my ITP experience 1968. When I was 16, I found out I was bleeding internally and got stuck into a hospital where the doctors diagnosed me with ITP. I got a splenectomy in 1971 and still had relapses. By that time I was so sick and tired of prednisone that I decided to live life dangerously because the quality of life not up to my expectations and the side effects were driving me crazy.

During the time between discovery and splenectomy my family had been consulting Chinese doctors and Chinese herbalists as well. Not much progress. So I moved to Los Angeles, and for the next ten years or so lived a careful yet unmonitored lifestyle. Every now and then I would notice the tell tale signs of the capillaries rupturing and gums bleeding so I would just lay low.

In the past 5 years, I've had two major bouts with low platelet counts where I had to be hospitalized. This last time they couldn't even count them by machine. They had to do a hand count. I decided it was time to take some action outside the AMA.

I started had Tai Chi Chuan and Medical Chi Kung. Also, through the recommendation of a few Chinese doctors I started brewing a Chinese herb called Shan Dong, HOKOU CAKE, (Asses's Glue). Cantonese pronounce it "aw gow" And it comes in 16 OZ solid cakes. The scientific names of the ingredients are: Colla Corii Asini, Liquorice Root, and Rhizoma Cyperi. It can be bought in any Chinese Herb Store but it is also distributed by Herba Enterprise Inc.in San Francisco, CA 94103 and Brooklyn, NY 11232 and is a product of China.

I cook it into a soup using a process of putting the ingredients into a porcelain bowl and cooking it in boiling water for about 1/2 hour or longer. Each box has 16 bars, each bar is then broken up pieces to approximate quarters. I would then take the quarter bar, 12 oz. water, a small piece of lean chicken breast (less fat), and salt to taste later and put it into a porcelain bowl with lid. Then I would take the bowl and put it into a pot. I would fill the pot with water only to the level where the bowl would not take in water when boiling. Start the heat on high and then turn down once it reaches boiling to a simmer. Cook for half an hour until the "aw gow" is completely dissolved and then salt to taste. It makes a good tasting soup as opposed to other bitter Chinese herbal teas and medicines. And voila! instant health.

Now I can't say what exact combination of Tai Chi, herbal medicine, stress management, has given me a drug free (prednisone) life. But it has amazed my hematologist and internal medicine specialist. I stopped the medical chi gung because I had no patience for it. But now I teach Tai Chi Chuan and still practice Northern Shaolin Kung Fu and at age 46 can still do the splits. I even do my own martial arts stunts. (no high falls, pyrotechnics, or motorcycles)

I had inquired earlier the PR of our condition because I am one of the few actors I know that have this condition and the more visibility we bring to it the more attention, money, and research we can discover to help our doctor friends in the AMA.

I hope this can help some of you out there. I know you may be skeptical, but so was I in my initial Western blocked, instant results, mentality. Chinese doctors also told me that the brown paper-like skin of peanuts (not the shell) were also good in repairing the condition of low platelet counts.

-- Peter (taichispirit@yahoo.com)

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