New people: H Pylori heads up

I was just thinking, there are a lot of new people recently and we haven't said anything about h pylori in a while. Some of the research suggests that h pylori treatment early after an ITP diagnosis is more likely to result in a significan remission (rather than checking for it and treating after the ITP has been around for a while).

So new people, think about asking your doctor to check for h pylori, and if you are positive, treating it. Might help the platelets!
Erica

Good thought Erica, I was diagnosed with ITP last Feb. I had the test for H Pylori in March and it was positive, treated once and was still positive I then treated again in May next test was all clear. Unfortunately it made no difference to ITP, two months later and on 40mg of prednisone my counts where in the 40's.
The specialist I seen in hospital when I was first diagnosed also said the same thing find it early and treat.
It is a good thing to treat anyway as can cause some problems with your stomach. I am still happy that they found it and I am now clear of this.

Has anybody ever heard of a breath test for h pylori? My second opinion heme told me Monday that a blood test for h pylori doesn't work if you are taking steroids. So he does a breath test.

Yes -
My son did the breath test. At the time, that's all they offered us. He hates having blood drawn, so maybe that's why. He was pretty young at the time (maybe 7 or and I was worried that the test may not have worked because it was a little complicated for a kid - hold your breath in for a number of seconds, blow in to a tube, etc. Nothing complicated for an adult, but for a little kid... Anyway - he tested positive and they treated him. When he was retested it was negative, but I've thought about having him tested again - he is constantly battling stomach problems.

Hi, Timons I had the breath test and as Beth said it is a little complicated. I imagine it would be hard for a child because you really have to blow into a bag from your stomach (hard to explain) but mine was positive twice, once after a first treatment, I had a second treatment with antibiotics and second breath test was negative.
Beth, why not ask for second test because although treating didn't help my ITP it did ease a lot of my stomach problems so I am very pleased that my Doctor tested for this.
Any other questions please feel free to ask.

Oh great! As if dealing with pred and constantly being bled now we have a new ingredient in the mix. This time around in treatment my stomach has been a little more "tempramental" shall we say. Guess I'll have to ask next week about that one.

Dave - try to think of this as a good thing. In a small percentage of cases, treating H Pylori can resolve the ITP. If not, you still did a good thing by getting rid of the H Pylori which can do it's own damage.

Hey Dave, I agree with Sandi. When the doctor first mentioned this to me I was a bit like you, what else can go wrong I had a dx of ITP in Feb, hyperparathyroid in March, Hpyothyroid in March and H Pylori in April and I was at the stage when I was thinking every time I have a blood test what will be wrong this time. The H Pylori is a thing that is a course of antibiotics and if you do have it you will feel better when its gone.
Hopefully you may be in the percentage that it resolves your ITP.

Ladies, ladies, I was being facecious!(sp?) If infact I do test positive it would go a long way toward explaining the poor performance of my stomach this time around.
I'm actually very grateful for Erika's bringing this to light again.

Oh. Didn't recognize the facetiousness.

Ooops I missed it too. Let us know what the results are.

Hi Erica.
You make a very important point.
I was newly diagnosed with ITP in Oct 2010.
My count went to 1 and stayed below 7 for 11 days. In that time I had doses of intragaram
via drip, bone marrow biopsy and prednisolone 100g, with constant recommendations from doctors to remove my spleen. Since then my count gradually rose.
My count is now at a stable 200 after I stopped prednisolone since early Janurary.
What I would like to share is my haematoligist diagnosis a few weeks ago.

"Lou has now made a complete recovery from his immune thrombocytopenia. This may be idiopathic or may have been secondary to the H. pylori infection that was documented at the hospital. He has had eradicative therapy for the latter."
"He has been off all prednisolone since early Janurary after having weaned over one month period prior to Christmas. His platelet count has been around the 200 mark for the last 3 months off the steroids, and I suspect that this is his true baseline"
"In summary, he has immune thrombocytopenia which is either idiopathic or secondary to H. pylori infection. If the latter, then he may be cured (as long as he does not re-acquire H. pylori). If this is ITP there is a significant risk of relapse and Lou is aware of this and to monitor his clinical state.)"

I truly think that H. pylori was the reason for my platelets going down to 1. Not knowing that I had H. pylori but thinking I had a strange case of gastro, I look back now and see that this is when my issues all began.
So in summary I would urge people to check for H. pylori to see if this may be the cause of their low platelet count and save them possibly future grief.

Thanks,
Lou.

Hi Lou just a quick question. Can you actually get the H-pylori again? Also did your Dr ever tell you how you get it in the first place, mine never did.
Also my Dr was pretty sure that the H pylori was causing my ITP but I have since had counts of 40 so I guess not. I was really disapointed when this happened, I was so hoping this was the cause.
Good for you though and I totally agree with you checking for this should be done.
Thanks

Hi Milly.
In answer to your question(s).
I presume you can get H. pylori more than once as the doctor stated in my diagnosis 'if I reacquire H. pylori again' etc.
As for being told how I contracted H. pylori, the doctor could only tell me that it must have been something I had eaten. I'm not sure either, but I am very suspicious about fish oil tablets I started taking around that time which kept repeating on me.
I did not know I had H. pylori until the doctor told me 4 weeks after I was discharged from hospital. They gave me atibiotics during my stay at hospital only telling me it was for a stomach infection.
I'm still unclear as to whether getting rid of the H. pylori definitively cured my bout of ITP, but am fairly confident as my platelets started dropping when I contracted H. pylori and went back up as soon as I got rid of it.
All I can add to help you is that I exercise regularly, sleep more and eat a healthy diet with lots of antioxidants. Lots of fish, fresh fruit (espcially blueberries), green vegetables, dark chocolate, green tea and lots of vitamin C (5000mg) and E.
Also interesting and very coincidental maybe is that I started taking colostrum tablets in hospital when my count was at 7. The next day they went to 18 and kept rising after that. Colostrum is supposed to re-teach you immune system on it's proper function. Did they help? I'II never know. All I know is that since my discharge from hospital, I have never really felt or looked better in a long time. So, I am sticking with what seems to be working for me at this stage.
I wish you all the best.
Regards,
Lou.

ive asked about getting this test which i believe is on the actual 2010 consenceus for itp my doctor told me i was not symptomatic (despite having sore stomach for about 2 months before i had any symptoms of itp ) and as most of the population has this inside them anyway and if i did show positive they are obliged to treat it and it probably wont be h.pylori causing the itp anyway . Think ill demand the test as even the smallest chance will do for me because its seemingly cheap and quick to treat .

Thanks Lou, I have a feeling that I may have got h-pylori in Fiji, I had been there in the October before I diagnosed with ITP in the following Feb. Not completely sure though.

jpb it is worth the test as this can give ulcers and many other things and yeah antibiotics to treat it.

Thanks lou.
I was going to get the breath test for h pylori 2 mondays ago. But the night before the test, I had an upset stomach and took some pepto bismol......and found out the next day that I can't take the test until 2 weeks have passed from taking the pepto. No idea why. I didn't know that something that is seemingly innocuous (pepto bismol) could affect the body for 2 weeks. So this coming Monday I am planning on taking the test. After reading your post, I have my hopes up.

I only wish that this connection with h. pylori was more prominent when I was diagnosed 4 1/2 years ago. I was just treated for h. pylori irradication and platelets are still dropping. I am receiving weekly nplate injections of 3 mcg. I have struggled with pretty much every treatment and had a glimmer of hope when I was positive for h. pylori.

Unfortunately mrsj one can't go back and change things - and who knows, treating h-pylori may not have done anything for your platelets anyway [did you have h-pylori back then?]. If I had hindsight would I get the gamma globulin injection that triggered my ITP - yes, because without that injection my husband's company would not have let us move overseas.

I hope nplate will help you - how are things going so far? Good luck to you!

I had never been tested for h. pylori till just about a month ago. We have had to increase my dose twice now and I get up and down weekly responses. I am getting weekly cbc's and injections. One week into my h. pylori treatment and 3 mcg shot of nplate I went up to 50 (highest on nplate to date), the next week, two weeks into the h. pylori treatment and another shot my count dropped to 37.

Good luck. I hope it all goes well.
Like I said, I'm not or the doctors are 100% sure it was the H. pylori that started my ITP, but looking back now everything points to that.
A bout of what I thought was gastro or severe upset stomach, was when I contracted H. pylori. I was very run down at the time only averaging 4-5 hours of broken sleep per night.
A month after I got H. pylori was when my ITP episode began.
Once cured of H.pylori and getting around 7 hours of sleep per night, my platelet count started going up and remained stable. This is why I am confident that the culprit was H. pylori and maybe combined with fatigue.
The only way I will really know is If I contract H.pylori again and my platelets start dropping again. Then I can be sure and know how to cure it. Otherwise if my platelets drop without contracting H.pylori, then I am back to square one.