Just thought I'd startup a thread here to add my voice to the chorus of FMT patients.
I got accepted into a clinical trial here in Canada for FMT. You may or may not know, within the past couple of years FMT was banned in Canada and the USA for everything except for treatment resistant c. difficile, in which it has a 90% cure rate. However, many people believe that FMT can help Crohn's and especially UC patients since it is suspected that dysbiosis or deficiency of bowel flora is a reason why our immune systems are so out of control. This is in relationship to hygiene theory, which states that we need microorganisms in our gut to modulate our immune systems, otherwise we develop health problems.
This trial is one of the major ones being conducted in Canada across several provinces in order to create a model to present to the government for standard treatment.
A couple of months ago I did AMAT (anti-MAP antimicrobial therapy) for mycobacterium avium paratubercuolsis, which I was diagnosed with through Otakaro Labs in New Zealand. Unfortunately, the triple antibiotic protocol was not tolerated, no matter how much I tailored my dosages, so I have since had to abandon this protocol.
I still believe that MAP is a leading pathogenic factor in IBD, but I have a small sub-theory that I'm working with right now. In my research, I discovered that the numbers of MAP present in UC patients is often not all that different from healthy population controls. Most human beings carry some form of mycobacteria in their blood. Some people with UC recover with AMAT, while others don't.
While researching Helminth Therapy, I did a lot of delving into hygiene theory. It appears that mycobacteria may also be helpers in the human immune system, which is why the majority of human beings with MAP in their bodies have no immune reaction to it. It may be that an immune deficit in IBD is what causes MAP to become virulent; or maybe, in some people, MAP is just commensal and a non-issue. Because a lot of Crohn's and UC patients respond well to AMAT, and their clinical markers for MAP match positive changes in their condition, I think MAP plays a role.
Where FMT comes into the picture is that maybe MAP gets out of control because there is insufficient immune modulation via the bowel flora. A lot of bacteria that live in our bodies are harmless but if they are provoked by antibiotics or long term low-grade immune system attacks, they can mutate into aggressive forms. It's not a matter of bacteria always being "good" or "bad", so much as how they are adapting to what is coming at them. So maybe if bowel flora are shored up, MAP will return to being more commensal. The other issue is that I couldn't tolerate the AMAT antibiotics. They actually led to small bowel inflammation, which is a first for me (showed up on CT scan). So regardless of what happens next, I need to make a concerted effort to restore my bowel flora as they have likely been devastated from years of UC and a history of antibiotic use.
I was able to track down a clinical trial in Canada. I had to go there in person for the first FMT and patient intake. They took blood, urine, saliva and stool samples to check baseline readings. I was given the first FMT which came from a single rigorously screened donor. I was then sent home with 7 frozen samples, to administer 2 a week for the next month. I will then return for a follow up. After that, they will ship me the frozen stool samples and I will continue the protocol for the next 6 months at two enemas per week.
Some interesting facts I learned:
- retention time does not matter. The doctor said that some people only retain it for 20 minutes and some for 48 hours, and it does not seem to affect outcomes. The bacteria colonize quickly.
- the bacteria in the stool remain viable for 2 years if frozen, and they freeze dry the stool in the lab
- freezing does not seem to affect diversity
- based on their past studies, bacteria in the rectal enema will reach the beginning of the ascending colon within 24 hours or less
- the laxatives used in colonoscopies are contraindicated during the trial because they flush out the beneficial flora (this confirms what I already suspected, scientifically -- we should all be doing major probiotics following a scope)
- out of the IBD patients who received FMT in their past study, 30% went into remission lasting for more than a year by the 7th enema, and another 30% experienced significant downgrading of their disease status during the same time frame; so that's a 60% chance that it could do something beneficial
I welcome any questions!
Post Edited (Connor77) : 2/15/2018 4:27:52 PM (GMT-7)