Hack my next FMT treatment (so I don't mess it up again!)

by (468)
Commented on March 31, 2015
Created November 27, 2013 at 2:10 PM

I'm using Fecal Microbial Transplants (FMT) in the attempt to treat Ankylosing Spondylitis (severe spinal arthritis). I had my first infusion this July (5 days), and I was doing remarkably well except for major flares during menstrual periods (inevitable) and until I made the bad mistake of taking prednisone about 4 months in (downhill fast after that). Both the gastro doc and my rheumatologist felt that in their experience, prednisone does not disrupt gut flora, but after looking through many people's personal experiences in the paleo world, I believe it must.

My protocol for FMT in the beginning was a strong gastrointestinal antibiotic and then the 5 days of the FMT treatment. Now that my symptoms are back (crippling arthritis, eye-inflammation, nausea, vomiting, colon immobility), my gastro doc is willing to do some supplementary treatments (2 extra days of infusion) plus the pill version (ick, I know, but this is new and promising). This is also treating the gut finally from both ends. He does not feel I need the antibiotic again since we are supplementing the first culture from my donor. (Note: Ankylosing Spondylitis may be caused by uncontrolled Pneumonia bacteria Klebsiella in the colon.)

I also may have made the mistake last time of adding starches (instead of sticking to a strict AI protocol) because we worried the good gut flora would not be able to flourish without it. I added rice flour and rice to my diet, but stayed far away from other grains (except for a very occasional gluten-free hamburger bun). No sugars except a little honey or maple syrup...and small amounts. The only drugs I took were LDN and a new constipation drug Linzess (which has been the only successful thing I've used to help regulate colon mobility and has definitely been part of recovery, I believe). Other herbal supplements: Nordic naturals sardine/anchovy oil, Turmeric, Plant Sterols (Thorne), and Primrose and Borage Oil. I'm also taking Align Probiotics as recommended by the gastro doc.

My new interest is Butyric Acid:


I'm scared to use dairy since this is a potential autoimmune trigger, so I'm wondering if I should use the pill form of this instead of butter or butter oil? Has anyone begun this supplement to heal gut flora? If so, what recommendations for use?

Sorry this is lengthy, but I thought the collective paleo minds here may have some suggestions. My next FMT treatment is mid-December. This is such uncharted territory (my doctors both admit) that I'm combing through every journal, post, and blog to make this treatment work. I'm thinking I need to go into extreme paleo AI-protocol in preparation with intense focus on gut healing before next treatment. Any ideas or leads for making the most of this are greatly appreciated! (And any ideas for what else to take other than prednisone are helpful.)

0 · March 31, 2015 at 1:34 AM

how did this end up. did it work?

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2 Answers

468 · November 27, 2013 at 6:41 PM

I can't seem to tolerate bananas or plantains (cause flaring), but I can mostly get away with sweet potatoes. I'll try upping those instead of the rice and rice flour.

I asked my rheumatologist about periods and autoimmune, and he said it's interesting, but we know that the gut really changes during this time (as well as with pregnancy). He asked about taking birth control, but I know this causes gut damage and is out. I just think there must be another way to successfully control symptoms during this time, but I find no info about it. Certainly there's research about this out there?

5650 · November 27, 2013 at 4:35 PM

hey lindy!!

i would really recommending adding resistant starches to your diet. i took butyric acid for about 2 months but never saw any effect until i started eating green bananas and sweet potatoes/potatoes. they create butyric acid naturally by fermentation instead of through pills- i took body bio brand 4-6 capsules per day.

i have done 8 fecal transplants but had to do them on my own. it is awesome to hear your gastro is doing them for you and actually believes in them!! the gastros in pittsburgh, pa where i live are very traditional and not into anything but medicines.

interesting about your period. i also flare terribly with my UC on my period. must be those damn hormones.

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