posted
My daughter has been suffering about 5 years with Crohn's or Ulcerative colitis (doctors think it's more UC) but we always thought it was something else (or maybe still in denial!). Parasite tests come back negative ever since. No-one tests for MAP that I can find. (another thing our society is ignoring....)
We have had her on SCDiet since 9/07 with pretty good results and off all meds, just a lot of probiotics and supps.
Recently put her on azulfidine (sulfasalazine) and after about 5-6 days, bad headache and dr. said to stop and start again later. Would the drug with sulfur give a lymie this symptom? wondering.....haven't started up again.
Over the last year the diet hasn't held her very well from flares.
She had 3-4 bouts of cellulitis that were treated with several rounds of antibiotis each time but the last time. I used a rife set on strep and staph and it cleared it up within a week.
She is not doing well at all since August.
Back in 07 I had her do the IGenex WB test:
IGM 39 IND IGM 41 + IGM 66 +
IGG 41 IND
Overall Negative. No other symptoms beside the gut issues.
Recent stool analysis: Charcot-Leyden Crystals (can be e. Histolitica or allergic reaction and maybe other things)
Started with allergies at age 7, takes steroid inhaler (not since last spring) and rescue also, but, thankfully she has not needed this stuff for a long time.
She is enemic.
She is low in Glutathione. (using cream supp)
She has elevated CRP, Sed rate, copper serum.
Organic OAT test: high yeast/bacterial overgrowth
Hair test: elevated tin, silver, lead, mercury
Low body temp of 97.5 (lyme, thyroid?)
Had her doctor do a CD-57 and it is 20. Found out day before Turkey Day. Mine is 18 and I have been on antibiotics for over 1 1/2 years. (i never had a positive lyme test, but lots of circles on my arms/legs E.M.'s)
Left a panicy message with my LLMD and will call again tomorrow. I want to have them re-do the IGenex test, co-infection panel and virus panel asap. I hope they take her right away for us.
Is there anything else I can do?
I ran 4 Lyme frequencies yesterday on the rife, but I can't say that she is feeling worse (or herxing) than she has been lately.
My Lyme-brain can't get a grip of all this.....
Any words of wisdom, suggestions, would be welcome here.
Sorry this is soooooo long!
-LAXlover
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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A lot of people who have Crohn's also have arthritis, and there are a lot of theories about infectious triggers including mycoplasma fermentens and klebsiella.
Klebsiella is also thought to cause Ankylosing Spondylitis. Many people with AS also have Crohn's. Low starch diets often help people with klebsiella.
So, if she also has arthritis, it could be Klebsiella.
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
I have crohns and the above. Treatment for Bart has helped me. I also take vsl#3. it has helped my daughter and I. Following a gluten free diet has helped. I suffer when I cheat on the diet. Inflamation in the intestines affects absorption of nutrients . Also, bloody stool could be causing her anemia.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
marypart, sometimes she will get a fever and then have joint and muscle pain but then it goes away. One time she did tst + for the influenza B. I don't think she has arthritis because it is not constant. I'll look into mycoplasma and klebsiella. thanks!
gaterade girl, sorry that you have CD. Crazy but my daughter, age 13 btw, has not had gluten in over 4 years but tested positive on the allergy blood test. Maybe it doesn't work when you have been gluten-free for awhile?
I have read that in some people the lyme settles in the gut and gives CD/UC symptoms. It was on one of the Maryland Lyme Pamplets several years ago. Do you think your CD is from Lyme? Do you have a low CD-57? I'd love to know if CD/UC patients also have this.....
I'm scared that we will have to treat with abx with her already inflammed gut. How do you handle this? I'll look into VSL#3. What treatment did you do for Bart?
Thanks for the posts! -LAXlover
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Amino acid-responsive Crohn's disease: a case study
Purpose: This paper reviews the clinical course of a case of severe Crohn's disease and discusses the scientific ramifications of a novel treatment approach.
Patients and methods: A case study of a 37-year-old male with a 22-year history of Crohn's disease whose clinical course had experienced no sustained remissions. The patient was treated with a protocol that utilized serotonin and dopamine amino acid precursors administered under the guidance of organic cation transporter assay interpretation.
Results: Within 5 days of achieving the necessary balance of serotonin and dopamine, the patient experienced remission of symptoms. This remission has been sustained without the use of any Crohn's disease medications.
Conclusion: In Crohn's disease, it is known that there is an increase of both synthesis and tissue levels of serotonin in specific locations. It is asserted that this is prima facie evidence of a significant imbalance in the serotonin�dopamine system, leading to serotonin toxicity. The hypothesis formulated is that improperly balanced serotonin and dopamine transport, synthesis, and metabolism is a primary defect contributing to the pathogenesis of Crohn's disease.
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
I thought that they have reported that Crohn's is caused by MAP and treat it with antibiotics for MAP? I think it can also cause t-cell dysfunction. Immunesuppressants are used because the body has an immune response to the bacteria.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
What is MAP?
Posts: 1927 | From se usa | Registered: Mar 2010
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-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
IMHO, **all** IBD is from infection. Doesn't matter what kind of infection - it is the location of the infection that drives the symptoms...in this case, the gut.
The study about serotonin and dopamine is interesting, but doesn't PROVE causation...it only points to a correlation, one that is easily explained by the malabsorption and protein loss common in those with IBD.
Amino acids often have numerous purposes in the body, not just one. And are often converted to other amino acids or are chained together and treated like proteins.
As for antibiotics, Flagyl has anti-inflammatory activity in the colon, is used to treat Crohn's in the colon and sometimes UC, and also kills Lyme. I've been taking Flagyl for a few months now and feel the best I've felt in a while.
None of the other abx I've tried for Lyme have improved my symptoms this much. I herx with every dose increase (slowly weaning up to two tablets a day...still have half a tablet/day to go), so I know it is doing something.
MAP is treated using two or three abx simultaneously, for a period of at least 2 years...and these abx are commonly discussed on this and other Lyme forums.
So whether its Lyme or something else, the protocol would likely still be the same - long-term abx.
LAXlover, I also have had bouts of some strange rashes - for example, earlier this year, I had Erethema Nodosum...I know others with IBD can get this.
I would venture to guess many with IBD have low CD-57's because Lyme has something to do with their IBD! But yes, a study on this would be interesting...
OK, stepping down from my soapbox now...LOL!
-------------------- -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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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Oh, BTW, my CD-57 was 35 in 2008. It hasn't been checked since.
-------------------- -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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Razzle, I now think my daughter has had "Pediatric GI Lyme" for these last 5 years. Has your IBD improved with your Lyme treatment, remission-wise?
we are now treating her with a small dose of doxy and sulfasalazine, working our way up with both. Two weeks ago, before the Lyme dx. she was put on Flagyl for IBD and herxed big time (school and sleep only for 3 days), it must be a good cyst buster!!!
-LAX
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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