Saturday, November 10, 2012

10 November 2012

Today began eradication therapy of the Helicobater pylori bacteria found in me via blood test.  This is the bacteria that was previously confirmed to be the cause of ulcers that made the news several years ago when it was determined that stress is not the cause.  I tested positive this week and found out the results late on Friday.  Most developed countries show that something like less than 60% of people have this bacteria.  The community agrees, from what I can tell, that there has been some association seen between H.pylori presence and ITP but the reason for this is still an unknown.  Two papers I have provide the latest theories on why this is.  Some results have been seen in small sample sizes that getting rid of the bacteria can increase platelet counts, but I don't see a lot of work on people with counts as bad as mine.  Regardless, we're moving forward with eradication... which consists of two different antibiotics and an acid inhibitor.  That goes for two weeks.  I've heard I should eat some yogurt.

Test results from Wednesday draws are still coming, with exception of that one above.

Had a long conversation with doctor at UCSF regarding my past treatments and the spreadsheet I sent him of my historical blood test results.  He confirmed that I have a very tough case, having dealt with refractory* cases.  He's tied to the ITP research and treatment community and has co-treated with another doctor I had previously located at Cornell in NY.  He offered to work with my doctor next week to share thoughts on approaches.  One theory is that there is a problem in T-cells or D-cells in my immune systems and there are a couple of quite aggressive immune systems suppression techniques that have had effectiveness.  I won't get into the details until I know more.  He offered to treat me in SF or to work with my doctor here for treatment.

Still finding hematologist at Mayo Clinic for further consultation.

Two additional things need to be looked at as well via some quick testing and these might be part of the Wednesday tests... need to wait until later this coming week to know more.

Monday is a holiday, which makes Monday interesting for the scheduled platelet transfusion.  I'll admit to the hospital so they can find me a bed and hook me up.  Fun.  No worries really, other than expecting it to take three times as long and they won't have a good internet connection... awwww.



* Refractory refers to very low counts that have not responded to any of the standard treatments (from what I have been told).

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