Parasites

I always imagined it would be the case for me. I tried diets, OTC supplements, antibiotics... I had tests for everything under the sun. Always negative. Eventually UC drugs caused septic shock, and I spent a month+ in the hospital - part of the time halfway dead, not even breathing on my own. They ran so many tests, and cultures, everything. After that, I gave up hope of a parasite being the cause and I had surgery. I guess I accepted that if there was a parasite it would have been found. It took all of that for me to accept the reality. Looking back, my family has a lot of people with GI issues. Nothing "chronic" or diagnosed, but both of my parents suffer from mild 'something', who knows what... Since surgery, I eat and drink, do everything like I did prior to UC without repercussion.

I had a parasite ....which evolved into UC and now CD with MAP.

Connor--when did you start? How are you feeling? I think you told me you were having trouble finding one of the abx in Canada? I've yet to start....doing fairly well on Stelara but it hasn't stopped my fistulas.

ambling said...
I think my illness was caused by CRAP bacteria. It is a type of bacteria that is hard to pin down, and which evades direct viewing. It hides when directly confronted. Hopefully with better testing, in the future, it can be found and eradicated. It is indeed a parasite to look out for.
I think it multiplies when exposed to radiation from tv, computers and mobile phones. That's why it is more prevalent in 1st world countries, and why people who relocate to those countries get the illness. It also explains why disease prevalence has increased over the last decade or two (with increasing use of laptops and phones.)
Be on the lookout for CRAP.

is this a joke??

Connor77 said...

U B Tough said...
I had a parasite ....which evolved into UC and now CD with MAP.

Connor--when did you start? How are you feeling? I think you told me you were having trouble finding one of the abx in Canada? I've yet to start....doing fairly well on Stelara but it hasn't stopped my fistulas.

I started the abx November 1. I was able to track down clofazimine, but I ended up being intolerant to it, so I'm doing another variation of AMAT. The abx are quite intense. The first week put me into flare territory which is what everyone warned me about, but since then things have calmed down. In general I am dealing with the malaise of die off.

I've had neutropenia for years since my UC started and one of the first improvements is that my WBC counts are now all normal. The initial herx reaction was difficult because I chose not to ramp up, but to start at full dose. I just passed the two week mark and you're supposed to start seeing gradual improvement after this point.

Interesting that you started with UC and it turned into CD. This is a common story with MAP, as it begins to have transmural activity in the bowel. My UC has never followed the typical pattern. I have patchy presentation in my colon and get strictures with my flares. I also had rectal prolapse with my first flare. Each flare seems to have more transmural involvement. My GI doc will scope me in spring 2018 to re-assess my condition and I'm curious what he will find.

I'll be making a more thorough thread about my journey with MAP once I can better gauge where my treatment protocol is headed.

Thanks Connor---I'm terrified of the abx putting me in a flare especially as I'm doing pretty well bowel wise. I tried a MAP variation in June 2016 that put me in a tail spin....interestingly all those abx didn't stop fistulas and abscesses. My UC was always strange too...."in my head" to patchy microscopic UC, normal scopes despite pain, etc etc. In fact in Apr 2016 they were still saying UC in lower sigmoid. I went 12 years with IBS symptoms following my parasite diagnoses. Just lived with it and hid it. At 28, BAM! my first flare....and hell ever since. I then had PG at 34 and even then they were still saying UC rather than CD.

At least there are more options but Id' prefer to hang on until MAP vaccine trial start that way I get getter support.

Good luck and keep us updated!