A group in Australia has done poop transplants on CFS patients and had a 70% success rate (undefined in the free abstract) and a 53% extended remission rate (again undefined in the free abstract available).
The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy
Dr. Hornig has been looking into the gut/CFS connection as well. She has already discovered problems in the guts of autistic kids which would explain why the GAPS diet works for some of them.
Infection, Autoimmunity and PANDA’s: Dr. Hornig on Chronic Fatigue Syndrome at Dr. Klimas’ NSU Conference
There is also a study on guts health in CFS patients about to be published by Sanjay Shukla.
Here is Dr. Teitelbaum's take on CFS and SIBO.
Where am I going with all of this? Well I have continued my decline. I'm back to being on the couch unable to read, drive or even ride in the car short distances without having severe symptoms. The B12 shots and the Equalibrant aren't the cause of my miraculous recovery since I'm still taking them and I'm back to my shitty old self.
Today I got my test results back from Dr. Komaroff and a chronic bacterial infection is indicated by my blood work. He is suggesting I go to an infectious disease specialist. My treating CFS doc Dr. W. also thinks my miraculous recovery was due to bacterial infection of my guts. Then suddenly all this stuff shows up on the interwebs about SIBO. Coincidence!?! Weird if you ask me. So I've emailed my primary doc asking if he will send me to my infectious disease doc over at Tufts or just start treating me for SIBO. There are two treatments for it: 1) Xafaxin and/or 2) Paleo and/or GAPS diet. Another coincidence!?! I think I'll do both. I'll go on the Xafaxin since my insurance covers it and start GAPS. I had planned on doing GAPS about a year ago but was too sick to actually go through with it. If I can get a head start with the antibiotics then I'll be able to cook again and start with GAPS and end up on Paleo.
I'm groaning at this. I've been eating wheat products again because I've been craving them. My son and I sneak out the house while hubs is sleeping and go get roast beef sandwiches at 1am since we are both night owls. It has become a social ritual with us. We also go out for breakfast at two in the afternoon when we get up and go on random coffee runs. We have bonded over coffee and donuts. This all leads to toast, muffins, donuts and sandwiches. None of which I'll be able to eat on GAPS or Paleo. I won't be able to cheat for a long time. At least months if not a year or two. Since I am so limited in what I can do physically, food has become our social time. The time to get Mom out of the house for an hour or two. I will have to look hard for new rituals to replace these. Things we can do together where I won't be as tempted to eat cheat foods. Perhaps even stuff we can do together that doesn't involve food. If my head clears up we can always go for car rides together. He loves driving around.
I. Am. Dreading. The. Diet!!!! This is going to SUCK!!!
I'm not sure how much it helps to hear from another chronic patient, but just in case it does, here's my story.
ReplyDeleteMy GI practitioner has said something very similar. According to the hydrogen breath test, I tested extremely positive for SIBO. He put me on a xifaxin regime. At one point, I was also on a FODMAP diet; (it's different but at least reminiscent of GAPS diet.)
This theory came up in the summer of 2012. By the beginning of this year, we'd already switched to a new theory that the SIBO is caused by a connective tissue disorder that I have and not simple CFS/FM. So I haven't seen the changes desired (unfortunately). But I did repeat the xifaxin regime in January & we did a HBT before and after, which showed a HUGE improvement.
Anyhow, all this goes to say, that another practitioner has recommended a very similar course for me as a CFS/FM patient. It's something he's done with several of his other patients and also is discussed in GI research circles. It should be promising (unless, like me, nothing ever goes according to plan.)
Hope that things work out for you somehow and that you start feeling better soon. Email me if you want more specifics on my case or my physician. :)
Abigail
Thank you for telling your story. It is good to here from a fellow PWCFS. It is also great to hear that the xifaxin worked. Have you tried LDN? I was reading that it might be a gut motility issue due to the CFS.
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