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Doing research/Johns Hopkins grad student seeks patient data

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7 years 7 months ago #64825 by pvickery
Hello,
Are you a male with ITP and have hemorrhoids?
also
Have you had a spike in your platelet levels after antibiotic treatment?

If the answer is yes please post here.

My name is Paul Vickery, and I'm a medical scientist and graduate student at Johns Hopkins University. I'm doing an experiment to see if a certain bacteria can cause ITP.

Wishing everyone peace and health,

Paul Vickery MLS ASCP

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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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7 years 7 months ago #64826 by Sandi
I'm sorry, but what do hemorrhoids have to do with ITP?

I can tell you right now that antibiotics both raise counts and drop counts during infections. Depends on the person and the antibiotic. People also experience a rise or drop in counts from being sick so it's kind of hard to separate that out.

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7 years 7 months ago #64829 by pvickery
Replied by pvickery on topic In response to Sandi
Thank you for sharing with me. Antibiotics causing a lowering of platelet levels is also significant to the bacteria I am studying. If you know what medicine you took that caused the platelets to fall please let me know.

Thank you again,

Paul Vickery

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 7 months ago #64830 by Hal9000
Replied by Hal9000 on topic In response to Sandi
Paul,
First, are you familiar with the search facility available here whereby one can search the history of user posts for specific words? Be aware though that only the first 30 responses are returned - apparently because the feature is under temporary construction/improvement right now.
pdsa.org/discussion-group/search.html

Just off hand, I can't remember any specific person reporting improved platelet counts from an antibiotic. I think there is a possibility that those who have taken antibiotics to treat h.Pylori may have reported count spikes though. Not sure. A search on 'pylori' might yield something fruitful.

You know, there used to be a guy here that often trumpeted the drug 'Dapsone'. Perhaps you are familiar with it. His handle was 'Rob16'. As I understand it is an antibiotic and an anti-inflammatory. Here is one of his posts commenting on it in a contextual way.
pdsa.org/discussion-group/7-treatment-general/29145-dapsone-lyme-disease-itp-connection.html#54261
Here are some of his other posts that contain the word 'dapsone' in it.
pdsa.org/discussion-group/search.html?query=dapsone&searchuser=rob16&exactname=1&searchdate=all&order=inc&childforums=1

From my own studies, I question the understanding of how it works to treat ITP. I suspect it is not the antibiotic nature of it but rather some anti-inflammatory property which causes platelet counts to increase. Those that benefit from the drug seem to have an issue with inflammation. That the mere absence of inflammation can raise counts, and vice versa.

Hope this helps.

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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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7 years 7 months ago #64833 by Sandi
Replied by Sandi on topic In response to Sandi
Amoxicillin cause my counts to drop twice years ago. I stayed away from that one for a while, but I've taken it since with no problem. At one point I took an antibiotic and my counts went up....not sure if it was coincidence or not. I can't remember which one it was (long time ago).

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7 years 7 months ago #64834 by lurpelis
What is your reasoning for believing certain bacteria may cause ITP? I don't discount the possibility, but almost all of the current evidence in microbiota research in regard to autoimmune diseases leads towards viral triggers being more likely. The bacteria themselves clearly play a role in pathogenesis but it is currently a very chicken and egg question. Early studies in to microbiota transplant in Inflammatory Bowel Disease seems to indicate that the bacteria in the microbiota may be able to remediate some of the disease symptoms, but this does not imply that alterations to the bacteria are causative, or at least, not the root cause of autoimmune disease.

Based on research from the lab I am in, as well as many others, would lend credence to the idea that antibiotics deplete the microbiota. This depletion alters several inflammatory markers including Interferon Lambda. Loss of IFN-L seems to alter the response to viruses and pathogenic bacteria which could explain the alterations to platelet counts after IBD.

If ITP is directly caused by bacteria, I would be surprised as these bacteria would have to be out-colonizing the commensal bugs and be antibiotic resistant.
The following user(s) said Thank You: mrsb04, MelA

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7 years 7 months ago #64837 by MelA
Personally I'd like to know why: "male" ITPer and "hemorrhoids" - what bacteria is being studied - and why the experiment is being done.

Thank you!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 7 months ago #64840 by mrsb04
H Pylori is a well documented bacterial cause of ITP

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7 years 7 months ago #64843 by lurpelis
That is true, but it often (not always, but often) responds to antibiotic treatment. My guess is they are specifically looking for ITP patients who have tested negative for H. pylori

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7 years 7 months ago #64847 by MelA
Still, before answering any personal questions I would want to know:
"Personally I'd like to know why: "male" ITPer and "hemorrhoids" - what bacteria is being studied - and why the experiment is being done."

H-plyori isn't just in males that have hemorrhoids.

I'm just very skeptical - I, or anyone, can sign in and say I'm an infectious disease specialist [or whatever] working at the Mayo Clinic [or wherever] please answer the questions I've listed below, thank you very much.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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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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7 years 7 months ago #64851 by Sandi
Agree, Melinda, and the questions are far too broad to even answer.
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