I currently am dealing with a lot of confusing and difficult GI issues suspected to be caused by chronic persistant Lyme/Bartonella. None of the GI doctors I've seen have been able to help me, and non-GI doctors do not have the expertise to deal with my constant GI problems.
I need a Lyme-Literate Gastroenterologist to help me with proper treatment. I'm tired of going nowhere and getting sicker day by day despite IV abx for over 2 years.
If anyone has any suggestions for a LL-GI doctor anywhere in the USA, please private-message me. Thanks!
Take care,
Posted by Donna L. Doan (Member # 27826) on :
I am sorry I don't know of any doctors. I have many GI issues, maybe I can help. If you don't mind me asking, what is the problem?
Posted by Razzle (Member # 30398) on :
Ok here are the issues:
Difficult swallowing, esp. liquids (hence why I'm still on IV hydration daily).
Gastroparesis (slow stomach emptying), with intolerance to FDA-approved treatments (Erythromycin, Reglan).
Pelvic Dyssynergia - biofeedback is not affordable or covered on my insurance, but this is a minor problem with the addition of magnesium tablets to each meal.
A very long list of food allergies, sensitivities, and intolerances - probably thanks to Lyme.
A history of nonspecific inflammation in my esophagus, stomach, small & large intestine. Flattened villi were seen in my terminal ileum.
Constant nausea and loss of apatite. Claritin (2-3x the recommended dose) keeps the nausea away, but the apatite loss is still an issue.
A Gastrostomy Tube (feeding tube) in my stomach, that getting painful hard lumps around it and also intractable granulation tissue. Trauma at the tube site may have precipitated both issues, but it's been over 2 years since the source of the trauma was removed (a feeding tube that was too small).
Occasionally, my GI tract shuts down completely, requiring TPN (Total Parenteral Nutrition; happened in 1986, 2002, and again in 2008).
Newest issue is daily diarrhea, starting as of about a week ago. I don't know if this is from the antibiotics (my Lyme doctor doesn't think so) or from something else.
I used to get nausea with shaking chills nearly every night from 1983-1996. A decrease in frequency of these occurrances was noticed after I stopped eating meat (I haven't eaten any meat since 1988, and no eggs since 1991). I suspect this was a combination of allergies, intolerances, and Lyme/Bart.
I also have methyl cycle variants that cause me to be sensitive or intolerant to Sulfite preservatives, alcohol, and other chemical food additives.
And I have HLA-DQ2 and elevated anti-gliadin IgG antibodies, which means that I have gluten sensitivity (possibly latent Celiac Disease)...I have been on a gluten-free diet since 7/05, but am occasionally "glutened" unintentionally when I visit stores or people homes where there is airborne gluten present (I can tell by the onset of symptoms, including diarrhea the day I'm exposed, and menstrual migraines and cramps that disappear after about 6-8 weeks after the unintentional gluten exposure).
There's probably more, but that's what I can think of right now.
Thanks...and take care,
Posted by 2young2die (Member # 25434) on :
Wow, how does your gall bladder check out? I recently started having frequent yellow burning stools and my GI said it was bile.
My liver is ok but I've been on rocephin for 9 months so I think it might be gall bladder issues.
I also developed slight celiac while on the drug. II was dxd with ALS and lyme.
Posted by Razzle (Member # 30398) on :
Gallbladder was removed due to large stones (before lyme diagnosis).
I also have fatty liver from TPN.
Fiber or certain meds that bind to bile acids may help you.
Take care,
Posted by Razzle (Member # 30398) on :
Bump.
I really do need a GI doctor who has a clue about Lyme...
Thanks,
Posted by Lymetoo (Member # 743) on :
While we're asking... If anyone knows of one in Missouri... let me know.
I need one specific city.. but can share that by PM.
Posted by pepperspeck (Member # 18837) on :
Razzle, I hope that you find one. I have been looking for one in the NJ area. Please let me know if anyone knows of one by pm.
Posted by Razzle (Member # 30398) on :
Pepperspeck,
Thanks. Yes, I'll be tracking this thread closely - good luck,
Posted by Ann-OH (Member # 2020) on :
Sending you a private message.
Also, Go to Support Groups in the menu on the upper right side of this page and go to your state and get in touch with the people listed there. They will probably know more about docs you will be able to get to in your area.
Ann - OH
Posted by Razzle (Member # 30398) on :
There is no support group listing for my state. But thanks anyway...
Take care,
Posted by Razzle (Member # 30398) on :
Pepperspeck,
I just PM'd you...
Take care,
Posted by muddyfeet (Member # 26633) on :
Sent you a pm
Posted by 17hens (Member # 23747) on :
Razzle, I'm sending you a PM.
Posted by KLD (Member # 30430) on :
Also sent PM Posted by Razzle (Member # 30398) on :
I've replied to all of the PM's - thanks!
Take care,
Posted by klt9751 (Member # 28656) on :
Can everyone PM me with the same info? My son and I are also in need of a LL gastro.
Thanks!
Posted by Karensky (Member # 21350) on :
Pepperspeck ,
I am also looking in NJ for a LL gastro...if I find one I'll let you know
and vice versa ?!
I found a LL cardio...who I did not know would exist at all...so we
may luck out...I'm going to ask my LLMD if he can recommend
someone...good luck to us both Posted by sky537 (Member # 21859) on :
i need a LL also desperately if someone cam pm me! Thanks, Liz
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