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Please help to understand ITP
- NK18
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- PROESCHOLDT
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When my wife and I were on a recent cruise around Japan, I met a hematologist from New York (also had ITP!) who urged me to relax, that much of the ITP could be mind related - and I have been trying to do that in addition to some meditation.
I believe it could also be related to the immune system and I have been taking probiotics to get good bacteria into the gut (the microbiome) in addition to papaya leaf extract. I have had allergy tests, h.pylori tests, small intestinal bacterial overgrowth tests, heavy metal tests, etc. and nothing is clearly evident as to the cause of the ITP. I would like to get an intestinal permeability test, but the GI doctor did not want to do this.
I also try to monitor MPV - mean platelet volume - as larger platelets will clot easier, hence can tolerate lower counts (sometimes they are unable to get an MPV reading - my platelet volume is very large!). I used to check counts frequently, but now only about once every three months. Save your platelets!
That's enough for now. Hope this gives you some ideas. ITP is very rarely a fatal disease and everyone responds differently.
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Your counts of 39k to 44k are safe counts and most wouldn't worry much with counts in that range. You have to go by symptoms and if it's normal for you to bruise and have a few petechiae with this count, then that's your norm. If you see an increase in symptoms or your count drops below 20k, then you might want to look into treatments. It seems like you've been doing this for quite some time and have been doing ok, so let that be your guide.
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- NK18
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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People do die from ITP, but it is rare. You might read about a death, but you don't know the story behind it. Sometimes there are circumstances that puts a person more at risk and sometimes the treatments are actually the cause. Generally, healthy people with no health risks do okay. You are being monitored and you are vigilant which is the best thing you can do.
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