My FMT story and questions...

Discussion started by Cedric 5 years ago

Hi all,

Just joined this website.  I've suffered from IBS my whole life (i'm 33 by the way).  A nice feature I inherited from my mother.  It's pretty bad but manageable i guess.  Anyways, in November of 2011 I developed ME/CFS (confirmed diagnosis from a few reputable doctors) after a flu shot.  It was a classic acute onset type and I have yet to recover.  Anyways, I was actually doing pretty good and really thought that I had a chance of recovering because I was given a swift diagnosis and treated right away with anti-virals and anti-fungals which were helping my near 25 symptoms.  My most severe were malaise, tinnitus, fatigue, brain fog, insomnia, and headaches.

In August though, after being convinced by a friend of mine and my treating doctor, that a fecal transplant was what I needed to solidify my recovery.  I took the plunge.  We screened a donor properly and I had a colonic nurse administer the donors feces.  I didn't take antibiotics before the procedure (in fact, I don't think I've taken antibiotics in 2 decades), did a very aggressive colonic all the way to the cecum beforehand, and I only managed to hold the feces in for about 2 hours.  My doctor didn't recommend a long trial of FMT's despite what I read here.  He thought it was a once procedure and that he saw great success with onetime use in his autistic patient base.

Anyways, it's been 4.5 months since the transplant and I feel it made my CFS worse.  This of course is just speculation but I know my body.  I was doing really well until about 2 weeks after the transplant.  Now my fatigue, night sweats, and brain fog have all flared up.  My depression and apathy and lethargy have gotten bad as well.  When before I was all excited about treatment and recovery, now I am listless and weak towards it.Of course it could just be the normal ups and downs of CFS but the timing is too suspicious and I am totally regretting ever doing this stupid transplant.  I'm angry at my doctor who said the worst thing that can happen is that it doesn't work.  he never said anything about it making me feel worse depsite me asking him like 10 times.

By the way, my genova CDSA's from 2010 and january 2012 showed no abnormalities except a NG for Lactobacillus, and a 3 plus for candida. I had a 4+ on e.coli and bifidobacterium.  I did another CDSA last month (post FMT) and now I have lost 2 points on bifidobacterium, am still a NG on lactobacillus (despite my donor being a 4+), I have fecal fat absorption issues and slightly elevated secondary bile acids (LCA's).  The only good news is that managed to eliminate my 3+ candida completely.  I'm doing a repeat CDSA next week to see if it was just a one-off.  But I'm not sure if this change in my CDSA is overall good or bad.  Like trading some healthy bacteria for an elimination of candida.  I'm not sure what to make of all this....

Does anyone have any advice on FMT's presumably gone bad?  Anyone else hear of this?  What can I do to correct this, should I take antibiotics or will this make it worse?  Should I just give it more time or is the only way to fix it doing another FMT?  Honestly, I don't feel like doing another one! Maybe the FMT didn't do me harm and it is just the natural course of ME/CFS flares? etc...

Thanks in advance for your time and any replies,

Cedric

 

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robbie
robbie
Obviously this is an area where only a medical professional can give you valid advice on. That being said, I think you really only have a few options. 1) You can do FMT again 2) you can take antibiotics to "reset" yourself or 3) wait it out and hope it's a flare... I'd like to know what you end up doing, so keep us updated!
5 years ago
Cedric
Cedric
Thanks Doorie. Anyone else have some advice? Should i do a course of antibiotics and redtorative probiotics to get back to where i was pre-transplant?
5 years ago
Doorie
Doorie
Cedric,
Unfortunately, I don't know the answer to that. I haven't read anything about reversing it. I have read a couple of stories of people getting worse, but in both cases, they did not screen the donor. A lot of people have parasites or other things, but are symptomless.

You might have to treat the symptoms, and wait it out and hope that it tapers off. I really hope that you get better.
Cheers,
5 years ago
Cedric
Cedric
Thanks, but how does one reverse the negativeveffects from the FMT, or am i screwed?
5 years ago
Doorie
Doorie
Cedric,
I am so sorry that the FMT has not worked for you, and hope that you feel better soon.

From the reading I have done, it appears that it often requires a number of FMT's, not just one. This is especially true for chronic conditions. In addition, I have read that symptoms can resurge during the FMT process. The battle between good bacteria and bad bacteria going on in the intestine can cause all sorts of havoc in the body. This is from reading various peoples experiences and publications; I do not speak from experience. I've also read the Sky Curtis book, and she makes it clear that it is common for symptoms to get worse before improvement is seen. She treated her son for Crohns/Colitis with FMT and it took many months of infusions for him to get well. I believe she worked closely with Brody to develop the long term protocol for the FMT schedule.

I have not done FMT myself yet, as finding an appropriate donor, who lives close enough, is quite the challenge.

I hope that you find wellness soon. Good luck to you.

Cheers,
5 years ago

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