TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This man is so sick from long-term undiagnosed celiac disease that his doctors have now told him there is no more they can do for him.
Johns Hopkins has offered to experiment on him with various experimental medications.
What are the best on-line forums for such a person?
He has so many allergies, an extremely high IgE, etc.
Thanks for your help!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Right here!!! Celiac and Chrones are caused by Lyme. He needs a LLMD. And stay away from the crooks offering you someone "else's" transplants...IYKWIM...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
This is the parasitologist that lymestratgies recommends. Since parasites hibernate in the gut, this would be worthwhile to check out and where I would start.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Forums are great and wish I knew one. Whan I was very sick and just found I was celiac my Naturopath put me on the SCD diet.
It probably saved my life, actually two years later I am still on a version of it. Also look into treating parasites. That is something I wish I would have done sooner.
Posts: 620 | From Ks | Registered: Oct 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
He may have more going on than just Celiac... Eosinophilic Gastrointestinal Disorders may be misdiagnosed as Celiac because the biopsies may look identical.
I agree glutenfreeandbeyond.org has an excellent forum.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I think chrons and celiac are derived from and/or triggered by lyme.
I have a ridiculous number of food allergies (and some MCS). My food allergies are parasite related. Parasites can bore through the digestive system, leaving holes for food particles to get through, which cause the allergies to begin with.
Unfortunately, most docs (99.9%) don't have a clue about parasites, and the tests are inaccurate. Tell him to check out Humaworm's symptoms of parasites (he will be surprised).
I would stay away from Johns if I were him and focus on an ILADS doc who treats for parasites.
Lymenet is loaded with good parasite info. I never would have discovered the parasite connection had it not been for the kind people here on Lymenet. And gluten free is a must for him.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Crohn's for sure is Lyme and/or Mycoplasma (mycoplasma causes Sarcoidosis, which is another granulomatous disease like Crohn's).
Celiac can be triggered by any infection - even food poisoning.
However, Lyme is also known to trigger Celiac (and other "autoimmune" disorders) and also non-Celiac Gluten Sensitivity.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by Razzle: Crohn's for sure is Lyme and/or Mycoplasma (mycoplasma causes Sarcoidosis, which is another granulomatous disease like Crohn's).
Razzle, Everything else you posted is very helpful -- expecially the info about Eosinophilic Gastrointestinal Disorders which you posted above in a previous post. That's a new one to me. Thanks a bunch! I'm really glad to know about that one.
However, your statements regarding Crohn's and sarcoidosis are inaccurate and could be misleading.
It is generally agreed that sarcoidosis is most closely associated with an unidentified mycobacterium, somewhat similar to the TB mycobacterium, but which is resistant to TB antibiotics -- NOT with "mycoplasma" which is something else entirely different -- although the two names are so similar that it is often confusing.
(Mycoplasmas are opportunistic critters though, so they may be present at the scene of the crime in many chronic health conditions, but they are generally not considered to be the causative agent, according to most experts on sarc. For example, Lyme patients are often found to carry mycoplamas in addition to other co-infections, thanks to the immunosuppression caused by Borrelia. Even infected ticks can carry mycoplasmas.)
Next point: Yes, it's true that Crohn's is a granulomatous disease, as is sarcoidosis. However, the general concensus is that Crohn's is most often associated with an immunological gut reaction to Saccharomyces cerevisiae, the yeast that is used in beer and bread making.
While this topic is really about celiac, it's important to include the following info about sarcoidosis for the sake of anyone reading here who needs it because it could be life saving, although I hope it doesn't highjack this important topic on celiac to include it here.
Sarc patients should stay away from pulmonologists because they don't believe in anything but steroids for treating sarc. Sarc is an infection, and steroids are never indicated for any conditions of an infectious nature because steroids weaken the immune system so that it cannot get rid of the infection.
The controversy over treatment for sarc is similar to the "turf wars" between the IDSA and the ILADS doctors. Sarc patients who follow the novel "experimental" treatment for sarc are in full recovery now ten years later while many/most sarc patients who stuck with their pulmonologists and took steroids are already deceased by now.
That's why I feel it is so important and even necessary to insert this potentially life-saving info on the treatment of sarc here, but let's return now to our original discussion of celiac and not get side-tracked away from it.
Posts: 4563 | From TX | Registered: Sep 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
TX Lyme Mom,
Thanks for catching me on that...I was getting mycobacteria and mycoplasma mixed up. Further confusing me is http://mpkb.org/home/diseases/sarcoidosis mentions both mycoplasma and mycobacteria...but focuses more on mycobacteria.
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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