posted
minoucat suggested I repost this in Medical so more of you guys would see and perhaps respond...
I've been off-line for months, and really missed you all. Short version of what's happened:
Was actually improving on IM Bicillin over the winter (although early herxes were really awful -- better now).
This past May, started having really bad belly pain.
Starting in June, during a six week period, I had:
- 3 trips to the ER - 2 belly surgeries - 1 diagnosis of a rare condition
The rare condition is "Mucosal Fibrosis". In my case it's located in my small intestine (they removed six inches of it - the "condition" caused a partial blockage which we HOPE was causing all my pain).
I have very little information about Mucosal Fibrosis. Bottom line: I do not fit any of the normal risk profiles, and no one has a firm idea of what caused it.
Has anyone heard of this, especially in relation to Lyme or other TBDs? Any help would be greatly appreciated.
And I'm SO glad to feel good enough to be back on line with you all!
Elizabeth (Who has changed her name to Serena, meaning peace, which I want more of in my life. I did this instead of getting a tattoo for my 50th birthday. More work, but less scary!)
posted
Sounds rough, Serena!! I hope you recover fully!!
I found this:
Titre du document / Document title Gastric mucosal fibrosis: a novel explanation for dyspepsia Auteur(s) / Author(s) KHURANA V. ; SINGH T. ; R�sum� / Abstract The etiology of functional dyspepsia has not been discerned yet which has led to inadequate treatment of this disease. It remains a common disorder with expensive and yet often ineffective therapy.
We propose that the pathogenesis of this disease lies in the histological and ultrastructural changes inflicted on the gastric mucosa in chronic gastritis and fibrosis.
This hypothesis, if substantiated will provide for therapy which will be based on the pathogenesis of the disease and which will be cheaper and easily available to most.
It will also add impetus to the early eradication of Helicobacter pylori, which would prevent chronic gastritis and hence gastric fibrosis. Revue / Journal Title
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I've already done searches like this - gastric mucosal fibrosis is in the stomach, not the small intestine. Thanks for looking, though - I appreciate your help.
I'm hoping someone on this list has actual experience with this illness - there is literally nothing useful on the Web for Musocal Fibrosis in the small intestine, which is what I have been diagnosed with, and is supposedly extremely rare.
I know it's a shot in the dark. But if anyone knows anything about this, I'd appreciate hearing about it. There are no experts on this illness. My doc at the hospital basicaly told me I'd have to go to a research hospital for a second opinion, in order to get someone who will do research on it.
Again, thanks in advance if anyone's heard of this.
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