Short Stories

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:

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)

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 10^th or 11^th 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.

HIV and ITP

Hi! My name is John and I have recently been diagnosed with ITP and I am still fighting this battle with a platelet count of only 9,000.

My story began this past October when I was diagnosed with HIV. At 30 yrs old I felt the walls of my life begin to fall around me. I set the appointment with the doctor the following week to see how far my infection had progressed. During this time I had noticed some spots that had appeared on my hands and legs and the following day I began to have nose bleeds and blood blisters inside my mouth.

The next day, when I showed the doctor the symptoms that had occurred he immediately ordered a lab test to check my blood. After having my blood test and as I was waiting for the doctor with my results a lady passing by were I was sitting noticed that my whole arm was covered in blood. I immediately went back to the lab were they tried to apply pressure to stop the bleeding. This is when I found out about my platelet count only 2,000.

I was told to go straight to the hospital were a team of hematologists were waiting on me. The anxiety and fear set in. The team has decided that I have ITP. Over the next month I received a bone marrow biopsy, IVIg treatments, anti D, 2 blood transfusions, 2 platelet transfusions, had my spleen and gall bladder removed. (on top of all this I had gall stones) and chemo therapy. After a month my platelets were only 16,000 and no luck with prednisone, cytoxan or danizol.

It is now March 1998 and I only have a count of 9,000. What next? Tomorrow I go to the doctor to get a new count. Keep your fingers crossed.

If any one knows or has HIV related ITP and you have some words of wisdom please e-mail me a jnhj@hotmail.com

Sweet Sixteen

Hi. My name is Janie Wellnitz. I am currently sixteen years old and a junior at Whitewater High School. In May of 1998, I was diagnosed with ITP. For four weeks, I was constantly noticing large bruises all over my body caused either from playing softball or for other unknown reasons. Sometimes, I would get hit by the ball during practice and later, there would be a large bruise on the area where I was hit. I really didn't think much of it first, but the bruises got worse and the time went on. Finally, my parents took me to the hospital for a blood test. That night, after I returned from a softball game, the hospital called and told my parents to have me admitted immediately because my platelet count was at 3,000.

The doctors questioned me for hours on everything that had happened over the past month. Because I had no symptoms of a cold nor was my spleen enlarged, the doctors don't know why my platelet count had fallen. On my legs, they noticed little red spots, which is one sign for a low platelet count. That night, they started me on 60 mg of steroids. The next morning, a hematologist did a tests to see if my bone marrow was producing the platelets and to look for signs of cancer. The leukemia test came back negative and in fact, my bone marrow was producing plenty of platelets.

For eight days, they kept me in the hospital, primarily to be sure that I didn't start bleeding. Every morning, they took a blood sample to check my platelet count. On day three, the count reached 5,000, but unfortunately, on day four, it dropped to 4,000. Finally, they decided to give me immune globulin through an IV for two days. This was to stimulate the immune system and the antibodies that were attacking my platelets. On day eight, my count had reached 23,000 and they released me from the hospital. The next week, I returned to school and desperately tried to catch up on my school work. On May 14, I had another blood test. To come to find out, my platelet count had plummeted to 6,000 again.

So, currently I am on Dexamethasone, a very potent steroid, for four days. If this fails to work, they will consider removing my spleen. This will not occur until we talk with the specialists at the University of Wisconsin-Madison. I am desperately dreading a splenectomy, for on June 16, I plan to depart on a two-week vacation in Costa Rica.

The past couple of weeks have all been so new to me, and I just had to tell someone my story. Please send me any information or stories you have to jmwellnitz@hotmail.com I hope all those out there who suffer from ITP have a fast and safe recovery. I send my deepest wishes and prayers to you all.

Beyond Splenectomy, Pred, and Dred

Despite encouraging statistics and strong recommendations from my consultants, splenectomy did not appear to work (initially) for me. Within weeks, my counts had crashed to 12. (Before splenectomy they had fallen below 10 on several occasions). The thought of pred all over again, and this time with azathioprine, threw me into depression and near despair. After a brief climb they then crashed to 8. Immune suppression was presented to me as the only option. Then I found this site...

Since then things have improved a lot. Encouraged by others' stories, I feel as though I have taken control of the management of the disease. I certainly have not turned my back on conventional medicine (I still see the hospital consultant every month and have counts via my GP fortnightly in between) but I have reviewed my whole lifestyle and researched the condition as much as I am able.

The turning point came in April. After pred and azathioprine were prescribed. I decided not to go along with the prescription. This was frightening but liberating. I also read with great interest the research into links with ciliac disease and decided to go on a gluten-free diet. I also began to take massive doses of Vitamin C, three times a week (4000mg). A week later I saw a different consultant - a highly respected hematologist. I confessed my disobedience over the azathioprine and his attitude was unbelievably refreshing. He said that I should never feel obliged to go on a drug about which I felt uncomfortable. He stressed that we were a team, that I had one kind of knowledge (knowledge about me) and he had another kind of knowledge.

Somehow, we had to make the two work together. I could not believe it. He made me feel sufficiently confident to make a second confession - that I had not gone on the pred, either! At this point he lit up with excitement: 'That's BRILLIANT, because your count has gone up to 68!' (that is a VERY high count for me - we generally celebrate when it reaches 40). He was delighted that I had not gone on the drugs and suggested that we continue to experiment with no drugs at all. He was fascinated by the gluten-free diet and asked me to log carefully any days where I lapsed or chose to come off it. For the first time in eighteen months I felt in control again.

My counts have sometimes dipped but even if they fall below ten, my consultant does not panic. He just says, "give me ring if they fall below 30 (but don't panic); come in and see me if they fall below 20 (but don't panic)". This takes the terror out of it - terror of the disease and terror of the treatment. Although my counts have sometimes fallen, each time they climb again and each time they climb a little higher. My last count was 109 - all without any drugs. I continue on the gluten-free diet and the very high doses of Vitamin C. I also take spirulina and lots of linseed (recommended by other sufferers). I feel extraordinarily well. I don't know why I have this sense of well-being, but even if the gluten-free diet turns out to have nothing to do with the ITP, I think I will stay on it, as it makes me feel so well.

I have no idea what will happen in the future. I am not naive about the condition and know that my counts could easily dip again, but I cannot believe that my new state of mind has not been helpful. Conquering the fear is half the battle in living with ITP and, who knows, it may play some part in conquering ITP itself. Why does our immune system go out of focus in the first place? I don't know. For the first time, I have found a consultant who seems interested in deeper questions, who seems genuinely interested in ME, rather than treating my body like some kind of machine. The fact that I had a divorce 6 years ago, that I am a high-energy, high-achieving, lively workaholic may have something to do with it somewhere. I am a university lecturer who thrives on the generation of ideas but is also exhausted by them. How can all this NOT be relevant? I still work very hard but I attend to my emotional and physical needs in a way I never did before. In finding a conventional medic who is interested in the whole me as well as being an expert in this particular autoimmune disease I feel as though I have struck oil. He does not derogate different kinds of knowledge.

I want to stress that I am NOT anti-drugs. After all, initially, prednisalone (together with tranexamic acid and a lot of norehisterone!) was essential and probably saved my life. The symptoms I first presented (and have experienced since) included a period which was flooding out of control: I was losing so much blood that I was afraid I would not get to hospital in time. Without my doctors' quick and correct diagnosis and appropriate drug treatment I dread to think what would have happened. I have also been fortunate, in the main, in being looked after by an excellent team of experts. But there is more than one way of constructing knowledge, and if the patient is left out of the knowledge-construction process, then deeper problems (perhaps causal ones) may be compounded.

Thanks again, for a wonderful site. I hope this little bit of my (ongoing) story will provide some encouragement to someone somewhere.

Christine

Danazol Success

My name is Ralph and I am a 55 year old sufferer of ITP. Prior to diagnosis, I was a marathon runner, active member of a gym and hold a second degree black belt in karate (not a good thing if you have a tendency to bruise and bleed). After a succession of treatments with Decadron, platlet infusion, IV gamma globulin (which caused anaphylactic shock and seizures that almost killed me) and finally prednisone, my count bottomed out at 2,000. Just prior to actually having my spleen removed, a remarkable physician in Long Island, New York started me on a new treatment with Danazol. After about one month of treatment, my count went up to 122,000 and is still climbing. If you would like more details about my experience and treatment let me know.

Ralph

Healthy Family

My name is Karen Hughes and I was diagnosed in April 1977 at the tender age of 18 with ITP. I had most probably had it for at least six months before they diagnosed me. I had a knee operation in the fall of 1976 and they could understand why I had a hard time clotting. It wasn't until I started bleeding from the nose and mouth that my parents were alarmed. I saw my pediatrician and he took a platelet count. It was 11,000.

I was young and ignorant as to what this meant to my life. I was 18 and full of life. The doctor immediately put me on prednisone and I blew up like a balloon. In the meantime my hematologist did a bone marrow test and aspirated the bone marrow with only a topical pain killer, he took it from my sternum. I didn't realize that it was going to be painful until he told me to hold unto the sides of the table. It wasn't until I was much older that I realized that he was not doing it correctly. It was painful and I felt humiliated. My parents took me to a hematologist at UCLA Medical Center. He wanted to admit me because my count was 7,000 but I wanted to go to school and graduated with my class. I remained on 100mgs a day until they removed my spleen in June of 1977. This was done at UCLA. I thought that I was cured. I was released from the hospital because my count went up over 500,000. I felt I had a great summer ahead of me. I went to the beach a few days later and I lost my balance and fell, later that night I couldn't breathe because of the intense pain in my shoulder. I was readmitted and my count was 4,000. We were devastated and the summer from hell started. They started me on 100mgs of prednisone and I stayed at that dosage until Sept. of 1977. I got very week from the steroids and eventually I needed help getting up out of a chair. My nephew had been born that year and playing with him is what kept my spirits up. I then went back to my own hematologist at my medical group and he started me on vincristine. We as a family were very ignorant about ITP and at that time there wasn't a lot of information about it. We were at the mercy of my doctor and what we felt he knew. He was administering vincristine without an IV drip straight into my veins. He missed a couple of times and the chemo burns were very painful.

The counts would stay up sometimes for 6 months or so and then I would go back for a vincristine treatment. It seemed very manageable. In that time I met my husband and 4 years after my diagnoses I went into a long remission. It lasted almost 4 years to the day. It was after the birth or my second daughter that I noticed those little red dots. My daughter was 4 weeks old and my platelets were 15,000. When I look back I realized that it must have been back for sometime. I didn't know of the dangers of ITP and pregnancy. My OB didn't seemed concerned about the ITP. He most probably felt that I would stay in remission. I was very blessed to deliver two healthy girls without any problems.

I then went back to my hematologist and since the last time I had seen him I had married and my husbands insurance would not cover my preexisting condition. To say the least the disorder came back with a vengeance and I saw him for 2 years receiving vincristne every two weeks. He missed several times and each time I saw him I would pray that the Lord would guide his hand and find my vein. Needless to say we owed him a lot of money and we were a young couple with two small children and it was very difficult to pay. Then one day he said he couldn't treat me anymore because I owed him too much money. I had a count of 20,000 and he gave one last shot and he told me to go to the county hospital. I was devastated! I felt that this man held my life in his hands! Actually it was the best thing that ever happened to me. I then had to become proactive in this disorder. I vowed I would not allow a doctor to ever blindly treat me again! I regained my dignity and I grew up!

My pastor helped me to get a recommendation to the City of Hope in Duarte, CA. I was called by a hematologist from there and he said he was concerned about my count and wanted to see me the next day. When I saw him, this was August 1988, he said he was concerned about the amount of time that I had been on vincristine. He wanted to give me one more injection and then talk about other treatments. When they came in and hooked me up to an IV I wanted to know why. The nurse said that this chemo is very caustic and that it needed a drip to be administered. When I told him that I had never had a drip with it he shook his head. He treated me with so much dignity that I started to cry.

When I went to the doctor I told him that there were two things that I would not do, prednisone and a bone marrow test. He agreed, and through his ways of informing me and treating me as a "CO-physician" to my body I agreed to certain treatments when they were necessary. I have had counts as low as 3,000 and then I knew I had a responsibility to my husband and children to do what I needed to stay healthy. Yes, I have taken prednisone again and I hate it just like everyone else. Then in 1991 we started gamma globulin treatments and they seemed to be doing well. The day I spent in the chemo room made me grateful that I didn't have cancer. This disorder was just an inconvenience in my life. I felt that if it wasn't this it would be something else.

In 1993, my husband and I decided that since the gamma globulin was a natural blood product that we should consider having another child. We had felt that option was taken away from us in 1986 when the disorder came back. We talked to my doctor and we a saw a high risk pregnancy doctor, and they gave us the green light. We got pregnant in April of 1993 and gave birth to our third daughter in December 1993. It was a trouble free pregnancy and they monitored me very closely. I went into remission it seems the moment I got pregnant. I am still in remission 6 years later and I forget sometimes about the ITP. It is almost like a bad dream. I wish I had had information like this web site offers 22 years ago. I would not have made some of the mistakes I made mostly out of fear and ignorance.

Life right now is good. I like the fact that I'm not spending a lot of time in chemo rooms and worrying about if I should shake my head after a shower. I still notice any little bruise or spot. I have to remind myself that a certain amount of bruising is normal. I still celebrate that I don't bruise if I accidentally run into a door jam or fall. I celebrate my children and my husband for all the times I had to come first because of ITP. To all of you who are still suffering with this I understand your fear and frustration. You are my reality and you remind me not to take this remission for granted. You can E-mail me at KH3girls@aol.com

God Bless You All!

Karen

Sesame Oil

The reason I searched for your site is because I wanted to tell others who could benefit from the sesame oil. My son seemed to get it as a result of having too much antibiotics... and the last one he took had a warning that 1 out of a million may get low platelettes as a result.... I don't remember the exact warning because it's been over 7 years ago. His platelets went down to 2k. The gamma globulin did not help. I prayed for guidance, and I prayed fervently... God answered my prayers.

To make a long story short, my son and I were on a raw vegan diet, with seeds and nuts. That helped boost his platelets to 50k while he was getting off the prednisone. The diet was so hard for him though.

One week before scheduling a date for the spleen operation, I was guided to visit a Chiropractor who's also a nutritionist and a homeopath practitioner. He gave him sesame oil, because sesame oil helps the t-cells. His platelets went up to over a 100k, and the operation was cancelled... and the doctors at Children's hospital were not interested to know... One doctor told me, "Whatever you're doing, keep doing it"..... They just did not want to know. It took us about 2 years of research and difficult, difficult life.

I have a lot to be thankful for. I have changed after this experience, because I have experienced a personal relationship with the Creator... and I have compassion for others....

My son still takes sesame oil, and he's been at over100k for the last 5 years. We are no longer vegetarians, but we eat salads every day. He's a miracle boy.

My advice is:

1. Accept the fact that you may have to live with it , because that reduces your stress.

2. Try a vegan diet with lots of raw vegetables and sprouts.

3. Try sesame oil... It's cheap. Try adding sesame butter to hummus....

4. Remember that God is in control, and he loves us all very much, and he allows us to go thru difficulties in life for reasons we don't know... but that He is good, and He wants to make us like him. Some people may not see that God exist and that He is good during their difficult times, but He is.

Please let me know if it works for you... I hope it will.

mkosic@integrityonline7.com (Marlene)

Success with Imuran

My name is Rebecca and I was diagnosed in 1992. My situation was particularly scary because I work in a hospital lab and my good friends were hematologists. This ended up being a good thing when a found a compassionate physician who was willing to answer all my questions.

Originally, my counts were not that severe, but after a cold or flu (and I seemed to get a lot of them that winter), the count was down to 6K or less, and of course, I was on prednisone. In the spring of 93, I came into the ER with severe menstrual bleeding. I got the splenectomy (Its very hard to avoid!) and a week later my platelets were back down to 3K.

I was despondent. Even on 60 mgs of pred and they wouldn't go up!?! I found a counselor who helped me using meditation and visualization technique and the power of positive thinking to help me mentally. It did bring my platelets back up to 5-6K, so I could keep working, but mostly it kept me calm and searching for other options. My doctor and I "tried" different things IVIG, danazol, dexamethasone pulsing. But at the advice of my counselor, I quit trying. 

I wanted to succeed and finally, I was put on Imuran (azathioprine), and it worked - slowly but surely over months my platelet count went up to 100, then 200K. I tapered off it and my platelets remained high -450K at my last count. 

I want to emphasize that each case of ITP is unique, what works for one may not work for another, but there is something that will work for you, you just have to find it and focus on its working!

Rebecca (nyrosrm@juno.com)

Lisa's Ordeal

My story is somewhat different from the others because of the treatment. I was diagnosed with ITP in 1976 when I was 14, I was a freshman in high school. My first indication that something was wrong was a 31 day very heavy menstrual cycle. I did not talk to my mother about it due to my inability to speak to her about certain issues. Then about three months later I noticed bruising on my back, legs and arms, red speckles all over my arms and bleeding out of my ears. The bruises were very large in diameter (about 15" or larger diameter) and the bleeding was a slow trickle and for some reason I still did not tell my mother.

The final item (about four months after the first sign) that sent me to speak to my mother about it was one day when I was walking from school, many kids started chasing my friends and I for a freshman initiation prank. They were trying to throw us in the irrigation ditch. As I was running, I noticed blood coming out of my pores just like it was sweat. It stopped me dead in my tracks and all the other kids as well. I was in the center of a circle of kids who were watching my pores bleed. I was terrified. It was about a half a mile to our house and by the time I got there it had eased up but still it terrified me to no end.

We had Kaiser insurance but we lived in Nevada and the hospital was in California. We went the following Monday (four days later). I luckily had a doctor that knew the many things to test for. I immediately was tested for Leukemia, Lupus and ITP and had a bone marrow test. I tested positive for ITP and Lupus. My platelet count was at 6,000. I was told that I had a virus in my spleen, and there was no treatment for it, the virus had to just run its course. Which we were told was two to six months. I tested every Monday for six months without much change. The next step was to remove my spleen. I was removed from all physical activity which causes the heart to pump more blood which caused more bleeding. I was directed to not take any aspirin. I was taking vitamins and being very careful not to exert myself too much. Then, all of the sudden my weekly test was 20,000 and went up each week from that point on. So I had no treatment and my counts gradually went up. Within one year my count was 245,000. I am tested yearly and recently my count has dropped to 115,000 and I will be seeing a doctor this week, but this is now 23 years later and all has been well. Lupus is negative also. I was told that many diseases of the immune system can imitate signs of others. Over the years I have tested positive for Lupus and Rheumatoid Arthritis which have came out negative in follow-up tests.

I do have a severe thyroid disorder and thyroid hormone resistance (my body does not respond to the medication). The doctors believe it is all linked together and that vitamin D may have helped all of this during my younger years.

Lisa (maloneyandbell@gbis.com)

ITP and AVN

I was diagnosed with ITP in Dec. 1998 after I noticed large bruises that I could not account for. When my blood was checked, my platelet level was zero. I received a call at work to come to the doctor's office immediately, that there was something seriously wrong with my blood. Panicking, I returned to the doctor's and was immediately taken to the Hematologist who rechecked my blood to confirm the count and I had a bone marrow test (I never felt it, although I thought it was going to be extremely painful). After ruling out leukemia, I was sent immediately to the hospital to receive a gamma-globulin IV which gave me an extreme headache so I had to have a CAT scan to make sure I wasn't hemorraghing.

My count went up to a safe level but then it dropped back down to 27,000 within 2 weeks. I received another IV of gamma-globulin as an outpatient. My doctor recommended having a splenectomy rather than try any drugs because he felt it would just be postponing the inevitable. I was in such a daze from everything happening that I agreed. The splenectomy was not successful so I was started on 40mg/day of Prednisone in Jan. 1999. Nothing prepared me for what that drug did to me. I gained 35 pounds, my blood pressure went up, requiring medication and my nerves were so bad. I suffered terrible mood swings - angry one minute and crying the next. But the worst thing that no one warned me about was that the Prednisone caused me to have Avascular Necrosis (AVN) in my right hip and I have had trouble walking for over a year now. I will be extremely fortunate if I do not have to have a hip replacement. I have been living with the pain for a long time now hoping that I can get better without surgery.

Meanwhile, I have tapered off to 5mg of Prednisone but the Hematologist added 100mg of Danazol a day. When I was only taking 50 mg of Danazol my count went down to 3,000. I feel like I am on a roller coaster ride - constantly up and down. The thrill you experience when your count is up, and the disappointment when it goes down. I've gone through depression and a lifestyle change (I can't exercise any more because of AVN and I stay tired all the time). I have managed to continue working and I don't miss too much work although some days it takes a real effort to make it.

What has seen me through this is my faith in God and the support of my family and friends. I would be interested in hearing from anyone else who has developed AVN from the Prednisone or anyone who just wants to converse.

kathy.d.coker@fluor.com

Living with ITP

October 1997, I noticed the bruising. I've never been someone bruise so easily, but I dismissed it. It's easy to knock yourself in your sleep. Then I started to get the odd nosebleed, nothing major. Then my periods, regular as clockwork previously, got heavier and more frequent. Within six weeks I had four. Now I was starting to be concerned.  When I started to cough up blood I went to my GP who immediately referred me to the local hospital.

At this point I still had no idea what was wrong with me.  It was Christmas by now and I was nineteen. When I received a letter from the oncology department, one word rang in my head: leukaemia. I was so scared.

When I finally went to see Dr. Bell he told me that I had ITP. At that point I had lost 6 pints of blood (English not US) and my platelet count was 2. I tried steroids with no success.  While intravenous immunoglobulin raised the count briefly, it soon sank back. It seemed having my spleen removed was the only option.

Well it's now 3 years later, I'm 22 and I still have my spleen. My count is only 45, but my body has adapted. My body is healing as fast as it ever did and my periods have settled back into a normal pattern. Now and again I have to take Cyklopran because it's too heavy, but most times it's fine.

I don't know if my story is of any use to anyone, but I thought it might give hope to anyone feeling as low as I did back in 97. I count my blessings every day.  I know how lucky I am and I just want people to know that you can deal with this, even if it doesn't go away.

Update: Well it's now 2006, I'm 27 and about to start studying for a PhD in Egyptology and I've recently been told I'm in remission.

My thoughts go out to you all.  I hope I can be some help

Bethan (UK)

Platelet Surprise

My name is Ian.  I'm 34.  I have had low platelet levels since I was a teenager. At the time it was discovered, I guess the level was not low enough to be considered a risk.  Nothing was done and the condition was not monitored. I did occasionally get crops of spontaneous bruises, petechiae and blood blisters in my mouth. I also went through periods of several weeks most winters when I would feel weak and tired, with a slightly light-headed, foggy feeling in my brain.  In retrospect, I suspect this probably corresponded with periods of low platelet levels.

Just over a year ago, my wife noticed how many bruises I was unable to account for, refused to accept my glib assertion that I'd be fine, and sent me to the doctor, who in turn referred me to a consultant. He decided that my platelet level was not alarming, but arranged for a bone marrow sample to be taken to check that platelets were being produced normally. It was not a traumatic procedure. It was found that I was producing plenty of platelets and that my immune system was wiping them out. It was agreed that my platelet level would be checked six-monthly.

A year later, my routine check found my platelet level to be only 20, and the doctor was quite concerned. However, I had had a cold, and she felt that my immune system had probably been unusually active because of this. She hoped my level would recover as the cold receded. Unfortunately, a few weeks later, I noticed a blood blister in my mouth. I went into the hospital to have a blood test done and my platelet level was found to be only 3. I was admitted to the hospital and put on 60mg of Prednisolone.

3 days later, my level was up to 30, and I was allowed home. 3 days after that, I was up to 90; 3 more days up to 150; another 3 days later, I peaked at 190. Over this period, my steroid dosage was reduced from 60 to 20mg. 3 days after my 190 peak my level slipped to150.  I then went off for a highly stressful week away. When I came back my level was down to 33 and my steroids were put back up to 40mg. Has anyone else noticed a link between high stress and low platelets? A week later, I was up to 37, and a fortnight after that, 74. My Prednisolone was reduced to 30 mg.

I am due to see the consultant again in a few weeks.  I will be arguing that the steroids do not seem to be working as effectively and I want to come off them. It seems to me that my body has gotten used to them. I wonder if I would not have recovered to this level without the brief 190 peak without them. I am also very reluctant to let them take my spleen out. I will submit any interesting developments to the website.

Ian (IanandLinda@imountford.greatxscape.net)

 Don’t always trust lab results!

 Like some of you, I have succeeded in maintaining safe platelet counts without prednisone.  I was diagnosed roughly three years ago with ITP at the age of twenty.  My involvement with the Penn State Cross Country program required complete blood counts, and the team doctor referred me to a hematologist when my platelets numbered around 50,000.

 They were monitored closely for a year, during which time they hovered between 30,000 and 70,000.  When they reached the low of 30,000, a bone marrow aspiration was performed, revealing normal marrow.  Lucky for me, my hematologist advised against using prednisone.  He said that since they weren't decreasing in numbers anymore, steroids weren't necessary.

 Since then, they have remained low (between 30,000 and 70,000), but have never gone beneath 30,000.  I've gone two years without ever taking any sort of medication, and have remained in this relatively safe range.  My first hematologist said that so long as your platelet counts remain stable (don’t follow a steadily declining trend), then there's no reason to panic.  Small fluctuations are natural, but steadily decreasing trends over time should be watched carefully.

 Recently, my wife and I moved to Miami, and I had my first platelet count in over six months.  It was done through the University of Miami.  The morning after the lab work, I got a phone call from my new doctor.  "You're platelet count is 7" he said.  "Are you having any bleeding or bruising?"

 "No," I said, worried. "I look fine and feel fine."

 "Okay.  Then we can wait until Monday to test you again, just to make sure this is correct.  But don't play any contact sports over the weekend"

 So I went back to the lab at the U. of Miami on Monday and had blood drawn again.  Tuesday morning a nurse called me at work.  "Your platelet count is 3," she said.  "Are you having any bleeding or bruising?"

 "No," I said once again. "I look fine and feel fine."

 "Are you sure?" she asked, unbelieving.

 "Yes.  I look fine, really,"  I said as I nervously scanned my hands and arms for any signs of trouble.

 "We need you to go to a hematologist at Baptist Hospital today.  In the meantime, don't drive or go anywhere.  Just go to the hospital at 2:45."

 So all morning I was worried and thinking the worst.  I had to leave work to go to the hematologist.  They took more blood and counted my platelets, both "by hand" and "by machine".  I met the hematologist, and asked her what the results were.  She showed me - they were 41.  "Yeah, the machine at the University of Miami isn't very accurate,"  she said.  "Our machine here is much better."

 "Are you kidding me?"  I said.  "Was their machine built in Russia in the 1980's or what?"  She laughed, but I didn't really think it was funny that because of that faulty machine, I had spent the whole weekend and especially Tuesday thinking that I'm on the verge of brain hemorrhage.

 So basically, the whole thing was a false alarm and I'm fine.  I'm going back to Baptist Hospital Oncology in two weeks to have a CBC, just to be on the safe side.  But let this be a lesson that lab results are not always trustworthy.  I would have gotten about as accurate results by calling a psychic hotline to find out my platelet count. 

Josh joshuabrashears@hotmail.com

Adventures with ITP

I was first diagnosed with ITP in 1993, when a routine physical showed a platelet count of 50,000. On a follow-up check, it was 19,000. During 1993, the count fluctuated from 17,000 to 90,000 - with most results in the 20,000 range. Of course my doctor ordered the full range of tests and went through the various treatments. When it came to the splenectomy, I could not understand why anyone with low platelets would intentionally get "cut open". Being as stubborn as I am, I refused the operation and tried various other treatment. Prednizone made me put on weight, Gamma-globulin brought me close to death. This is not to discourage anyone from those treatments...everyone is different.

Looking back at my childhood, I had several severe, spontaneous nosebleeds, and if I ever had teeth pulled, I bled for quite some time. Why did not blood test show this condition until I was 26 years old?

Since these attempts at treatments, I have decided to let nature take its course. Although I work out and exercise more, I basically eat the same foods I always have. But my own, uncontrolled study showed the lower counts were produced on stressful days, or during stressful periods in my life.

I continue to have my count monitored, but not as often. My count averages 45,000-50, 000. My doctor cringes when I tell him of my basketball games, mountain biking, and rock climbing. Although he did sign a release for me to get scuba-certified, he recommends I get checked prior to my dive trips (I should note that he also is a diver, and is familiar with the pressures associated with diving. I also provided him with information from DAN - Diver's Alert Network).

Why don't I have severe bleeding and/or bruising constantly? Especially after the mountain bike accident two days ago? According to my doc, my platelets are filtered so quickly, that the ones I do have a young and strong.

I do not ignore my condition, but I also do not let it rule my life. My advice to anyone: Explore your options, and chose what you feel is best for you.

Chris (drxerox@warwick.net)

Successful ITP Alternative Treatment
(Get Well International)

In September 1999 I went for a checkup at Kaiser Permanente. My physician noticed many bruises. (I was aware of many bruises in the previous six months but I did not consider them serious enough to consult a physician.) She suggested I get a complete blood count (CBC) that afternoon. The following morning a hematologist called to arrange hospitalization due to low blood platelet count (8K). I received IVIg and Prednisone (60 mg) for three days and returned home with 120K platelet count. I continued the Prednisone (60 mg) and tolerated CBC's weekly. A week later my count was 190K; the following week it dropped to 97K. My count fluctuated over a wide range, but generally up, as I tried Danazol; unfortunately my liver objected to it, so I had to stop taking the medication.

Apparently due to the high dose of Prednisone I continued to take I developed a serious osteoporosis condition. To try to rectify the osteoporosis I tapered off the high dose of Prednisone. Some other side effects I experienced were dizziness, hair loss, unusual tiredness, blurred vision and mood changes. I did considerable research to learn more about ITP. I carefully read ITP: A Practice Guideline for the American Society of Hematology as I looked for other options. I tried one of the many possible treatments discussed there: ascorbic acid (vitamin C). It seemed to help for about three months as my platelets increased remarkably, then the platelets slowly declined as I continued to taper off of Prednisone. Soon my hematologist recommended a splenectomy. I continued to seek an alternative to that classic therapy. Finally, I searched until I found ITP People on the Internet. This was most helpful in learning about the disorder. I read the short stories and focused on Leonor's Cure who had success with Dr. Hoang’s treatment.

Eventually I contacted Dr. Ba Hoang at Get Well International, in San Jose, California. I was very impressed by his ITP experience and decided to try the herbal teas. I first spoke to him, and tried his capsules, while still tapering off of Prednisone. My platelet count dropped regularly as I reduced Prednisone; my hematologist became increasingly concerned and reminded me of the splenectomy option. So, after several weeks of IVIg treatments and even a dose of Vincristine (chemotherapy), I had resigned my self to surgery. My Dr said there would be no side effects with the Vincristine, however, I had experienced extreme head pain for three days and numb fingers for several months. The following day, I talked to Dr Ba Hoang, who convinced me that he could treat my ITP condition successfully. Dr. Hoang diagnosed my condition as atypical ITP. For approximately 12 months I drank the tea twice daily, before meals. I enjoyed the taste of the tea; its flavor is similar to coffee. At the start of Dr. Hoang’s treatment my platelet count dropped from 81K to 8K over several months and gradually increased 2K for the next couple months, subsequently 13-21K and the past two months my platelets leaped by 126K. Not only did his tea treat ITP, but also he amended the preparation to treat the osteoporosis and also to provide hormone replacement. I experienced no side effects. This was a great relief considering the many side effects of glucocorticoids I experienced in the traditional medications and treatments.

In February 2002 my platelets reached 190K. I am so grateful for Dr. Ba Hoang for demonstrating his concern and care throughout the treatment.

Marti mayers@qwestonline.com

Feeling Good on New Diet

My story began in 1996 when I became sick with Hodgkins Disease. After going through chemotherapy and radiation, I successfully beat the disease.

In August 2001, after I noticed bruising and petechiae, my platelets were <1000. I was diagnosed with severe ITP, resistant to all treatment (prednisone, gamma globulin, splenectomy).

In January my hematologist put me on a mixture of danatrol (600mg per day) and prednisone (60mg per day). I’ve spent the most of my time with my platelets lower than 10,000, until February 2002, when things seem to get better. I’ve stopped prednisone 3 months ago and I will stop danatrol in two weeks. And now with almost no more treatments, my platelets stay over 400,000. Why and how? I've changed my line of work (I was working in analytical and organic chemistry fields) and I avoid any contact with gasoline. I follow a diet recommended by Dr. Seignalet (a French doctor) since August 2001. I don't eat any milk and its derivatives (cheese etc.) and I avoid high temperature cooking and cereals except complete rice. I am eating more vegetables and fruits than ever before. I have to say that even after splenectomy, after six long and hard months, I finally feel good.

Christian augier@ensam.inra.fr

IVIg, Dex, and Vincristine

I am a 42 year old female, I was diagnosed with ITP in April 2001. Previously I hadn't been to a doctor in five years. I had been bruising on my arms and legs for about 12 months and thought that this was a family trait because my mother bruises easily. I also had extremely heavy periods, but I chose not to go to a doctor about this because I thought he would want to do a hysterectomy. I have four children ranging in age from 23 to 13. I was forced to go to the doctor by my husband because of the flu; it had gone into my ears and I could not hear very well. I thought I could take some antibiotics and I could get back to work. I mentioned to the doctor that I had been bruising for quite a while, and he suggested that I have a blood test that day.

The very next day I had a call from my GP who said that the doctor at the oncology department of the hospital wanted me to go to hospital with out delay. My platelet count was 2,000. It was explained to me that I needed to go into hospital straight away, as there was a real threat I could have a brain hemorrhage. The doctor started me on 100 mg of prednisone straight away. The next day the doctor came to see me and told me that the prednisone was not working as my platelets had only gone up to 10,000 and that he should begin IVIg as well. I was in hospital for five days and was discharged with a platelet count of 30,000.

The doctor said that I needed to have my spleen out as soon as possible and this was arranged within three weeks. Within a few days of leaving hospital my platelet count had dropped to 12000, so prior to the operation I had to go to the hospital to have IVIg to get my platelets to a safe level for the operation. Three days postoperative my platelets were 81,000. I was still on 75 mg of prednisone a day. Two weeks after the operation my platelets had dropped to 30,000 again. Having my spleen out had proved to be unsuccessful. My doctor immediately bumped my prednisone back up to 100 mg per day and introduced danazol and a whole range of other drugs. Over a period of a few months of having blood tests every week and having all the dreadful side effects of the drugs my platelets were 148,000. The whole time the doctor was trying to wean me off the drugs. Eventually I was off the prednisone altogether, yet having weekly blood tests to monitor the situation. Unfortunately within three months my platelets were back down to 15,000. This meant five days of IVIg to bring them to a safe level; he also introduced Vincristine (Chemotherapy) and oral pulsed dexamethasone for three cycles. My platelet count went up to 220,000; I was very keen to go off all drug treatment as the side effects were affecting me badly. At 220,000 I went off all the drugs, which was February 2002. Since then my platelets have been around 75,000. I am hoping, even though this count is low, to stabilize around 80,000 with no treatment at all. I have discussed with my doctor the use of Rituxan as the next line of treatment if deemed necessary.

Glenda gleadow84@hotmail.com

It was a Virus

My experience with ITP was a short one, but scary enough to change my life. It started last year, when I was 21. I noticed large lumps in my neck and I subsequently was diagnosed with Mono or Epstein-Barr Virus. I figured this was normal enough for someone my age. Many people got this virus.

One day while at work, I noticed large bruises all over my legs. They had not been there that morning so I immediately knew something wasn’t right. After blood tests, it was determined my platelets were at 6,000. I was admitted to the hospital and began prednisone and IVIG. I left the hospital at 78,000 platelets and stayed on prednisone.

My platelets rose to 264K, but soon began dropping again. I was devastated. That’s when I started educating myself about this disorder and found this website. It helped immensely. I landed back in the hospital a second time when the platelets dipped too low again, and was given another IVIG. They rose again and fell again. Prednisone was doing NOTHING to my platelets, and was tearing my emotions and body to shreds. To this day, I think the experience with prednisone and its side effects were somewhat worse than the actual ITP. I was 21, and I wanted to be with my friends; instead I was wiped out from the prednisone and losing weight from the worry and stress of it all. All the blood tests, worrying and ruling out more serious disorders are not something you expect to have to go through at this young age. I was scared that this was going to be the rest of my life.

After my second IVIG, my hematologist tried WinRho, which I had success with. I received two doses of this, each time my platelets soaring to the high 200’s. I would remain high for about 5 days each time. Then on my last visit to the hematologist before going back to school, my platelets rose on their own for the first time. I cried, as I usually did at my hematologist's office, but this time it was because I was overjoyed. My platelets continued to rise after that, and haven’t dipped below normal platelet levels since.

The doctors have told me it was acute ITP due to the Mono. Even though it’s been a year since I’ve had low platelets, I’m still cautious. Bruises scare me, and every time I see petechiae, I wonder. I see my hematologist every six months just to be checked. So far so good. I’m grateful to be okay. I learned a hard lesson about letting an “illness” consume you. I don’t want ITP to come back, but if it does, I’ll be better prepared to deal with it. There was so much more that could have been wrong with me, and in the whole grand scheme of things, I was fortunate.

Looking back, ITP was a scary thing for me to deal with. I thought I’d have ITP forever. I hope my story will give hope to someone else. Be strong and optimistic.

Stephanie sduca@verizonmail.com

Will I be Normal Again?

My story began 3 years ago in March of 1999 when I was 33 years old. I had been feeling out of sorts for months but just put it off to a number of possibilities. One morning I started a severe nosebleed, which lasted 4 hours. I eventually slowed the bleeding down long enough to drive myself to the hospital, only to have my nose cauterized and then sent on my way. No blood tests were taken. I went through repeated visits to the hospital with no blood tests. Well, after four weeks of bloody noses, I woke up one morning to a terrifying sight: I opened my mouth and noticed blood blisters all over my tongue and inside my cheeks. My arms and legs had petechiae all over. I was scared to death. My doctor immediately sent me for blood tests and that’s when he saw that my platelet count had gone down to under 10,000. My red cells were very low as well. I was hospitalized and given a platelet and blood transfusion along with many treatments of IGG. I was in the hospital for 5 days and when I left I was put on 150mg of steroid. That was awful!

I ended up with a blood clot in my leg and my eye, for which I had to be hospitalized. I have had a splenectomy and my counts went up to over 300,000, only to come crashing down and be hospitalized with more IGG treatments. Now whenever I have a relapse, my hematologist brings my steroid dose up to 100mg and then slowly weans me down to 20mg over the course of a month or two, depending on how my counts are doing. I find that my platelet count seems to be strongly affected by stress. As of April 2002 my counts are at 242,000 and I’m only on 20mg of steroids. I take a mullet-vitamin, 1000mg of Vitamin C, Super B-Complex, Folic Acid, and Magnesium (for an arrhythmia I developed due to the steroids).

The hardest part of all this is not knowing if you can ever be normal again. The side effects from the steroids are extremely difficult and people don’t always understand. I’m living with an illness that has a lot of control, but with this website I feel that I've been given so much important information. I think I may be able to take my healing into my own hands and figure some of this out myself. It is a difficult illness. But the hardest part is the loneliness we feel. People tend to forget that although you act like you’re on top of the game, you are struggling every minute to get through the day. When this illness first presented itself to me I was in the process of changing jobs. So the past 3 years have been a challenge for me. But with more knowledge, if I can’t beat this illness, at least I can try and take control of it.

Sue  smichaud@nmmc.org

Surviving Blood Clots

In 1996 while I was employed with the Drug Enforcement Administration (DEA) as a Supervisory Special Agent, assigned to La Paz, Bolivia, I was diagnosed with ITP at the University Hospital in Pittsburgh, PA. My platelet count was down to seven thousand.  They tried antibiotics, danazol, prednisone and finally a splenectomy.   Still my platelet count stayed down at a single digit count. While recuperating from my surgery, I developed a pulmonary embolism.  After placing an Inferior Vena Cava (IVC) filter, I developed a life-threatening deep vein thrombosis (dvt) to the point that doctors recommended they amputate both of my legs. However, they decided to try one other treatment, which was to apply UROKRAYNIS through a catheter to my veins in my legs. I spent ten days in intensive care and three months at the Jackson Memorial Hospital in Miami, FL. I came very close to losing my life.  However, I had God and ANGELS (Dr. Thomas Scagnelli, Dr. Ana Echenequi, Dr. Yeon Ahn, nursing staff and family members) who stood by me during the worst time of my life. I have since retired from the government and enjoy a healthy productive life and a platelet count of 350,000. I continuously stay in touch with my God and my doctors.

Eddie  ELHernandez@directvla.com

One Day at a Time

I went to the doctor on March 15, 1997 for what I thought was bronchitis. While I was there I showed the doctor some strange bruising on my stomach and legs, and he asked to run a few tests. I was awakened the next morning by a phone call, telling me not to go to work but to come straight to the doctor’s office. As I entered the office I was given papers and told to go to the hospital immediately. My mother helped me to be admitted as I was in a state of panic.

After I was admitted, the news was broken to me that I had only 6,000 platelets. The hospital staff did a bone marrow test and the prednisone treatments began. After a few days in the hospital I was sent to Augusta, GA to see a specialist at a teaching hospital. The prednisone had no effect on my system, only some unnecessary weight gain. After a few weeks of treatment the specialists decided that a splenectomy was necessary to regulate my platelets. I had the surgery in May of 1997.

My husband went to work every day and drove five hours to see me in Augusta every night. My sisters-in-law Lucy and Maria took care of my 2-year-old and me. I developed a cyst behind my diaphragm, but it wasn’t caught in my 10-day stay in Augusta. Two days after my return home I was back in the hospital again with the cyst. After five weeks of recovery I returned to work. I worked for another five years after my ordeal with ITP. I no longer have much of an immune system so I take care of myself, make sure I don’t get run down, and I get a lot of rest.

Through my ITP I learned that we only get one chance. I live my life one day at a time, but every day to the fullest. Thanks to those family members that were by my side to help me through.

Mary samerson@surfsourth.com

Lessons Learned

I was working as a camp counselor over the Memorial Day 2000 weekend when a girl asked me, "What happened?" She pointed to the back of my leg. There was a huge dark purple bruise, about four inches wide. I honestly couldn't remember when I had bumped something big enough to make a bruise that size.

After many blood tests and doctors’ visits, I saw an oncologist. The doctor explained he thought I had one of three things: ITP, lupus or leukemia, with ITP being the most likely diagnosis. He ordered a bone marrow biopsy. The doctor called two days later. ITP he said. Definitely ITP. He said my platelet count was now 19,000, and I had to start on steroids immediately.

I went through many emotions after my official diagnosis. I was relieved it wasn't a more serious illness like leukemia. I was worried and scared, and didn't know what lay in store for me. During the next few months, even on prednisone, I was not getting better. School started up again and it was difficult to keep up with things the way I used to. I was tired constantly. I couldn't walk up stairs without wincing in pain. My body looked like someone repeatedly beat me up. By the second week of school I was skipping class because I couldn't get out of bed. One month into my junior year of college, I made the difficult decision to leave school for a semester so I could get better.

I switched doctors; the new doctor put me on WinRho once a month for six months. My first treatment was in December of 2000. I went back to school in January 2001. It was difficult and weird to be back. I slowly got better, and my platelet counts returned to better numbers, thought still not normal range.

I learned so many important lessons as a result of getting ITP. It made me grow up faster. I learned who my real friends were. I got closer to my mother and stepfather. I had a new appreciation for life and the world around me. I have dreams and goals and have a different approach to life. All because of a black and blue mark on my leg.

Michelle Mmephillyathome@aol.com

ITP and Mono

Hi, my name is Cat and I am 18 years old.

Just this week I went to the doctors for an extremely sore throat.  The doctor brushed it off and said it was severe strep throat, shot me with penicilin and sent my on my way, telling me I'd be better in less than 48 hours. Well 48 hours later, I wasn't better...I was worse.  Not to mention I had mysterious reddish purple spots all over my body (petechiae).  I went to the ER because my throat was so inflamed I couldn't breathe properly.  The doctor's in the ER did a culture and a blood test and I patiently waited. The doctor came in and said "This is where the plot thickens..."  I knew something was wrong.

He said the blood test was positive for mono but it was the spots on my body that were a bigger deal.  He said I had a low platelet count which was called ITP.  It was almost surely caused by the mono.  I was admitted to the hospital that night and given prednisone steroids and gamma gloublins through an IV. When I was admitted my platelet count was 3,000 and the next day it reached 4,000. Luckily, day 3 it was 24,000 and day four it reached a great 137,000 and I was released from the hospital.  I go back for lab work in a few days and I hope for good news. I am luckily that my ITP was only caused by my mono and hopefully shouldn’t return again.

c__a__t@hotmail.com