why do these people post that are 100k / 150k ??? they should shut up !! all of us under 50k are the ones who suffer ……… we need a cure and that's all there is in this zoo other than the drugs and outing the spleen .. FARASAD's post is extremely sad .. only wish and pray she recovers to a stable count .. I am on 50mg. of promacta and it keeps me in the low 40s .. so gratefull for that ………………………. from clearwater florida and in the Philippines currently . they have me drinking tawa tawa and it does zero , it boiled grass . will try anything ……………… b-12 / folic acid /vitamin k / also zero results .. going to try the papaya leaves and also just started mega doses of buffered vitamin C (8k mg. daily ) ………… PRAY for a cure my friends and stay the course !!!!!!!!!!!! jimmy / jimmy@comcast.net …...……… SHARE .. ONE THING THAT DOES WORK IS WHEN BRUISES APPEAR THEY PUT A HARD BOILED EGG IN A THIN TOWELL AND YOU YOU KEEP RUBBING IT ON THE BRUISE AND I NOTICED THAT THE BRUISE GOES AWAY IN 3 / 4 DAYS INSTEAD OF THE USUAL SIX WEEKS .. THE HEAT IN THE EGG ACTUALLY LASTS FOR A GOOD TEN MINUTES .. STAY WELL !!!!!!!!!!!!!!!!!!
NEED A CURE: why do these people post... - ITP Support Assoc...
NEED A CURE
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It's such a frustrating condition...I'm curious about the hard boiled egg treatment...is the egg left in its shell, or pealed? Wishing us all healing... 🤗
left in the shell .. it retains the heat well .. the theme is heat will greatly lessen the time the ugly brusies hang around ..
Hi with all the supplements you're taking I'm surprised you haven't read my story PLEASE get your but D levels checked. It works for me and many others I do 2000iu daily levels want from 20s to 90s which is good enough for me. I take nothing else and have refused all surgeries
Did you have any treatment?
Telling people who are reporting good news to shut up is incredibly rude and insensitive. This is a support group. Perhaps they are sharing hope. Maybe they have been in a bad place, and want to share what worked for them. When I hear the higher numbers, I pause my thoughts and thank God for good results. When I hear lower numbers, I reflect to God to help cure and comfort and uplift spirits. There are lots of lousy diseases and syndromes out there. I think we all need to really support each other.
I am with you on that.
Sometimes people do not realise that a count of 100 - 150 is really good because they do not have any context. I have had a count of zero and have survived, yes it was scary and I got a lot of support from this group. Let us celebrate those with a high count and be supportive of those with a low count. Nicky
I’m at 50 been like this for 12 yrs now finally my Hematology is sending me for a bmb tomorrow and a mri Thursday hopefully get some results has my immune system keeps attacking my platelets
Everyone who has ITP suffers. It is a guessing game from day today week to week month-to-month year-to-year. are you gonna wake up one morning and your platlets are going to be so low that you need to be hospitalized or have been lucky and it going to be a good day. I feel terrible your struggling right now but that is no reason For you to come on here and discourage anybody from voicing their opinions and their thoughts regardless of platelet count at the moment.
relax .. who cares if someone is at 150k ?? not me !!! i feel for those under 50k and lower .. don't want to hear from a 150k ITP 'er... tell em to get a life and don't bother posting ............... besides at 150k you are mormal and maybe they just post cause they have nothing else to do ??
You have a lot of anger and I’m sorry for that.. In all seriousness you most definitely need to speak with somebody about it.You should think about speaking out on a different forum other than a support group page.
I look for people who have climbed the hill from 25 K to 150 and live with the sword hanging all the time, my son was there and now hopefully ok at 150, so are many others.
Hope the ppl with low counts will fight on and overcome the devil in the system that spews these, good luck and don't give up, that's the worst medicine. Try anything, please just don't give up, there are many who have clawed their way are and are doing so here, they deserve a respite when they cross over the hill of 100. I am fighting another battle with chronic kidney disease stage 4 at home, it's such s struggle to be normal. Kind words and support are do soothing.
Understand your frustration, but please be emphatic to others who are here and fighting this demon. Your bitter words do not help you or others. All the medical help you are getting now are the result of years of people's collective contribution.
Hope, love and trust works, despair, hate and doubt fails all the time.
Try homeopathy/ayurveda..both help.
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