This is for my cousin to show her GI doctors on Wednesday who are of course ignorant when it comes to this subject. Shes going to show them to her and make them test the samples from her scopes for Lyme and bartonella.
Posted by Keebler (Member # 12673) on :
- If the scope is to be done on Wed., chances are last minute requests won't be considered. They won't read articles right there before the procedure.
Could she postpone the scope so she has more time to prepare and get this properly arranged?
Can you share what state she lives in? Some states are just very hostile to lyme and it might help to know what state she is in before giving advice.
For instance, if she's in Oregon, not a chance of any MD listening to such a request - nor of any test being done properly.
Does she understand the things to look for with testing such as the lab, the exact test and how the sample needs to be prepared and shipped?
Could she have samples sent to IGENEX? Do they do tissue samples (I think they do, with prior arrangement but not sure). Not all labs would even consider doing a tissue sample.
I do think it's a great idea when anyone is having any kind of procedure that is collecting some tissue to be able to have that tested. It's just that it's such sort notice.
Can she access a LLMD? -
Posted by Keebler (Member # 12673) on :
- She may do well to contact her local lyme support groups to see if anyone there has had treatment with any of the doctors on her case - or with this kind of request.
You can't even count on a GI doctor to scope correctly for a good celiac test, I'm not sure I'd trust them with much else.
I do hope they will check for celiac, of course, but that needs to be just right or the test can miss it.
If she is gluten free, a scope will not work. Even if she is not gluten free but has not eaten a certain amount of gluten containing grains in recent weeks, the test can miss it.
There are safer, better ways to test for celiac / gluten issues, though.
I do hope they will test for h Pylori. This is vital. But there are better, less invasive tests, too. Not sure why they are doing a scope but I hope the detail gained helps.
My GI scopes were unnecessary, not done properly and just cash to the doctors. -
Posted by Razzle (Member # 30398) on :
she lives in NC and i don't know if it's too short notice or not. I'm going to send her an igenix kit that i have here. Thanks everyone
Posted by Keebler (Member # 12673) on :
- The article Razzle sent is splendid and the best one I can think of. Glad she's in a part of the country where she has a better chance.
Glad you are helping her navigate the waters, too. Good luck to you both. -
Posted by jlcd1 (Member # 18138) on :
they are telling her refined celiac disease and they can't postpone the tests because she has gotten soooo bad in the last few weeks. Lost 20lbs that she didn't have to lose and has horrible gut pain/anxiety and just in hell right now.
Posted by jlcd1 (Member # 18138) on :
thanks keebler and Razzle
Posted by beaches (Member # 38251) on :
Have her docs send slides o Clongen.
Posted by beaches (Member # 38251) on :
Pathology depts hold on to slides/samples for a long period of time. DD had an endoscopy in April (years ago). There was no problem having slides sent to Clongen September of that year.
Posted by beaches (Member # 38251) on :
And yes, that article is the best.
Posted by seibertneurolyme (Member # 6416) on :
Also need to tell your cousin that is it entirely possible to have both celiac disease or gluten intolerance and lyme and/or bartonella. Having problems with gluten does not mean that other things may not also be affecting the G.I.
Hubby lost 30 pounds in about 6 weeks when he first got sick with tickborne diseases. He eventually was diagnosed with gluten intolerance, lyme, bartonella, Babesia, low stomach acid, and several G.I. parasites (giardia, trichostrongylus and ascaris). He also had an allergy to casein - a milk protein.
The complete G.I. panel from DiagnosTechs is a very good G.I. test and is relatively cheap.
The patient also needs to be tested for candida. It is included in the test I mentioned above.