Unbelievable news, after 10 years with UC dx now infectious colitis

why was the doc looking at a 10 year old pathology report? was this the same or new doctor?

I read an article recently that people with refractory UC may have an IBD mimic instead of or in addition to UC - so I am curious about your case.

But it does seen meaningless to put percentages on UC prevalence based on a hunch. It also seems negative to be disparaging CCFA.

Kinda good news that you don't have UC?

Because my UC has never responded to the usual RX meds I'm always suspicious that mine is infection-caused or possibly that my gut bacteria is waaay off due to over-antibiotic use.
Never had Lyme but when my husband got the bulls-eye rash his doctor gave both of us the series of shots to prevent Lyme (years ago).

Keep us informed of your research and treatment (especially me).

Theres something very suspicious about them telling you about an infection but not treating said infection. I feel like there is more to this story than you are telling us...

Basically I had not felt really "well" for several years (mainly after an MMR vaccination). But my complaints weren't really GI, it was depression, muscle twitches, fatigue, anxiety, insomnia. Then things got acute (as far as GI/diarrhea) after I had gone to the dentist and been given an antibiotic injection, led to the ER and when the infectious disease doc blew me off, I got assigned a GI, got scoped and was told it was "active UC." One strange thing is that when I was in the hospital, one of the nurses mentioned that many people my age had been coming in with UC for the first time, but after she told me that the nurses clammed up and I was told they couldn't talk about it.

I believed it and have been taking Colazal and the occasional 5asa enema since 2006. I ended up switching GI docs along the way. My last two colonoscopies were clear - no indication of disease, but I do periodically get "flare ups" with cramping, diarrhea etc and so I have stayed on the Colazal. I used to plead with my old GI to consider other causes for my "UC" because it felt like something came on suddenly and could depart just as suddenly...but he always just told me that he "wasn't a researcher" and would get irate if I asked anything other than usual GI protocol.

Right about the time that I found I was compound heterozygous for the MTHFR mutation and about to pay out of my own pocket to get a lyme test (after having been blown off by mainstream rheumatologist and infectious disease) my new GI informed me that my colitis was a case of acute infectious colitis, and that they had reviewed the pathology - the slides. She refused to treat me with antibiotics as she said the infection was "long gone."

I have a LLMD and have been treating the infections with herbal treatments and now an antibiotic called "Alinia." So far I am feeling great. The last probiotic I added made me herx, and I got some cramping and bowel movements, but it has gotten better since I take them after eating.

All I can tell you is I was diagnosed with chronic ulcerative colitis for 10 years which was under control with Colazal, and now I am getting much better with all of my many bizarre symptoms with treatment for lyme disease and coinfections. This alone should make this big news in the UC community...it just makes sense that many others have an infectious cause and perhaps do not have UC.

I am over on the lyme disease board at healingwell now. I wish I had more time to spend in here, but I am so busy with work, personal life, and now lyme treatment. But I am feeling great. The only caution, don't waste your time going to mainstream doctors with this concern. They DO NOT care and do not admit the existence of chronic lyme disease. You will waste your time and money needlessly if you ask a regular doctor or GI about this. Also - steroids suppress your immune system and if you have an infectious cause for your "UC" I would be very careful with suppressing your immune system.

doors12

Post Edited (doors12) : 10/29/2016 10:46:26 PM (GMT-6)

I have had 3 major flares and all of them were eventually snuffed out with antibiotics. I have heard that antibiotics are an effective treatment for about 15 percent of IBDers.

DB, good luck with your attitude and I politely decline your armchair diagnosis. Let's go ahead and leave it at that...

Doors12, FYI, my longtime gastroenterologist, who subspecializes in IBD treatment, routinely checks all incoming patients for Lyme disease. One KNOWN paradigm for development of UC is post-infection. (That's what I am, a post-infection IBDer : I had a poorly-treated intestinal amebiasis prior to UC.) So-- it could be that you did have Lyme going way back. The important thing for you now is NOT to assume your UC will disappear forever even if you get rid of these "co-infections". I got rid of the amebiasis finally with an anti-protozoan med, but I still had UC afterward. RE babesia: that is also a tick-caused infection (babesiosis) & very serious; the sister of a neighbor of mine caught it a couple yrs ago in NJ, but luckily managed to extract the tick & save it for lab tests, which turned out positive. Doctor then hospitalized her on IV antibiotics for a few days. / Old Hat (36 yrs with left-sided UC; presently in remission taking brandname Colazal)