ITP since 13

Hi everyone,

In 2007 when I was 13 before school I had to do mandatory health check and my platelets were at 13k. Got sent to hematologists for bone marrow biopsy, didnt show anything. They were suspecting that it could be caused by my tonsils, I would get sick pretty often with sore throat, temperature, inflammed tonsils. As I as still sitting in single digits, they gave me IVIg to increase my platelets for operation. It increased to 75k ish and I had my tonsils removed. Had some minor bleeding complications afterwards but they burned the wound. After surgery my platelets would jump around 40-70 range and we decided not to take any extra treatments. I would get my bloodwork done every 2-4 weeks and it seemed to never change much. I would get sick, it would drop to 30-35k, get over the sickness and it would jump back to 50k.

Spent my teenage years being cautious about my condition. No heavy lifting, dangerous sports etc. Never had any major bleedings, just bruises that would pop up there and here.

We were speculating that my ITP was caused by tick encephalitis vaccine that I had at the start of the year. But hematologists were not able to tell us anything more.

In 2021 I noticed petechiae and I instantly knew my platelets dropped again. Went straight to the hospital, had bloodwork done and it came to 6k. I got put on prednisolon, my platelets jumped up to 40-50k range but after few months of suffering from from pred side effects (I had severe muscle pain) I was given an opportunity to try Eltrombopag (revolade/promacta). Started at 75mg was ranging around 50k, after a year it slowly went up to almost 100k and I went down to 50mg dosage. Since then its been ranging 60-70k at 50mg. If I understood correctly using eltrombopag for a long time can mess up my bonemarrow which might lead to cancer? Something about cells becoming more round if Im not mistaken? My hetologist is not concerned about that at all and is refusing to do bonemarrow biopsy (last one done 3 years ago). Overall I dont have any side effects whatsoever from Eltrombopag, but bonemarrow problem and possibility of thrombosis is always on my mind. I feel stuck at this point.

Just in case this can help even one PDSA member, I think it is important share my ITP issue. I had a diagnosis of ITP for 8 months in 2017 with platelets crashing to as low as 1,000 and needed IVIG and decadron, etc to keep me from bleeding out. FYI, my ITP occurred one month after I rode horses in the jungle of Costa Rica. I went to a great University hospital Dr. and to a large well known clinic hematologist and these specialists said I'll have ITP forever. The great news is they were WRONG! I was cured in 1 month by a homeopathic dr who did rife therapy and after I took over the counter antiparasite medication. I have not had ITP since 2017.

Hey Cindy, glad to hear you were able to cure your ITP! Could you explain what's this rife therapy? Did you have ultrasound done or stool tests to suspect parasites?

Good questions... They never found a parasite even after several stool cultures. But the holistic practitioner did muscle testing and believed I had parasites so she did the rife which was ultrasonic treatment to destroy cell membrane walls of parasites and told me to take the parasite destroying medicine. Thankfully and against all odds it worked and I never needed IVIG again after needing it from 5/1/17 to 10/17/17! I should mention that for 6 weeks in June/July I was on triple antibiotic therapy and while I was on it my platelets were stable and high over 250,000. Within a few days after stopping the triple antibiotics my platelets crashed to 7,000. So that does point to some type of infection. It was most likely undetectable parasite because once I was treated for parasites, my platelets stabilized and returned to normal range. I hope this information is helpful. Please let me know if you have any other questions. I hope you too can get rid of your ITP.

There is a difference in "never finding" and "believed I had" - personally I would like a concrete answer before doing anything that would give the "holistic practitioner" money for doing a procedure. Did the procedure work or were you one of the lucky ones that didn't have lasting ITP?