Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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How I put ME/CFS into remission....& even better

Discussion in 'General Treatment' started by Master4thDegree, Oct 8, 2018.

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Have you looked into the Gut Bacteria Connection?

  1. Yes

    64.4%
  2. A little

    23.3%
  3. I don't beleive there's a connection

    9.6%
  4. No, but now I will

    4.1%
Multiple votes are allowed.
  1. Hip

    Hip Senior Member

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    I've not come across any researcher or study which says that any virus can cause ME/CFS. Studies have linked ME/CFS to a specific set of viruses, mainly enteroviruses and herpesviruses. But lots of other viruses have no known link to ME/CFS whatsoever.

    Norovirus for example creates a similar gastrointestinal illness to enterovirus, but even when there are these infectious outbreaks of norovirus on cruise ships for example, you never hear of ME/CFS as a sequela.



    You mean the Ron Davis team at Stanford, not the Jose Montoya team at Stanford which is focused on herpesviruses as a possible cause of ME/CFS. I have not seen any research from Ron Davis disproving the viral hypothesis of ME/CFS, but I know he is not strongly focused on viruses. Although I understand he is planning further viral studies.

    In any case, chronic viral infection does not necessarily require reactivation. For enterovirus, this virus is not even capable of going into latency, and thus is not subject to the latency-reactivation cycle. The way enterovirus forms chronic infections is via a different mechanism to latency-reactivation, a mechanism which involves viral mutations transmuting enterovirus into an aberrant intracellular pathogen. See this article if interested.



    By the way, given that eradication of SIBO (if present) has been shown to improve the symptoms of ME/CFS (see here), it's not really clear that your fecal transplant had any direct effect on the core pathophysiology of ME/CFS itself; it may have just eradicated the SIBO, which then as a knock-on effect improved the ME/CFS.

    I used to have a chronic recurrent kidney infection, and when it flared up my ME/CFS symptoms were noticeably worse. So this is an example of how some secondary infections can amplify ME/CFS symptoms.
     
    Last edited: Oct 8, 2018
    rel8ted likes this.
  2. Murph

    Murph :)

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    I've heard enough anecdotal stories of FMT working that I find this whole story very plausible. This is not airy fairy. I 100% believe you did this, that it worked, and that it could help some other people.

    I appreciate you sharing your story as it might give someone an idea that could help them.

    However I've also heard enough anecdotal stories of FMT not working to keep a cap on my enthusiasm. I'm also aware there can be risks of this procedure, so I'd caution anyone against rushing in. Having an extremely healthy donor - especially one who is a relative - is rare and possibly important.

    @Master4thDegree How quickly did you use the material? I saw one person who self-administered their FMT who believed some of the microbes were not long-lasting and it was crucial to act fast. I find that plausible too.

    I laughed at this though:
    > My skills improved so for the next two weeks I was making a batch of pills whenever my daughter could deliver a specimen. I was down to about 25-35 minutes by my second week of this. We did discover though that she does NOT go everyday. We have improved her diet with more prebiotics to remedy that now.

    (In my own case, the link from gut to well-being is very clear. I'm just recovering myself from an acute PEM-like "dip" caused by eating something I ought not have eaten. This time yesterday I was in bed shivering and cramping, and I'm pretty sure the reason was that my gut bacteria were producing excessive gases that were permitting the intestinal lining to leak molecules into the blood stream that made my immune system go psycho.
     
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  3. Hip

    Hip Senior Member

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    The only stories I have seen of ME/CFS patients getting FMT are ones where no long-term benefit resulted.
     
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  4. aquariusgirl

    aquariusgirl Senior Member

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    I knew an australian who went thru the Borody protocol with Borody....I think most of the gains didn't last sadly....
     
    Hip likes this.
  5. Master4thDegree

    Master4thDegree

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    I am taking the research claims from Ron Davis team indeed. The 2018 ME/CFS symposium goes over their clinical data on viruses. I too was shocked to see that in a medium sampling there isn't an increase in IgM markers for viruses in patients when compared to controls. That really all they are saying.
     
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  6. Master4thDegree

    Master4thDegree

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    Viral stress is a common trigger, yet even Post Traumatic Stress Disorder which has about 90% crossover in symptoms of their syndrome too can be caused by regular stress and concusive blasts.

    The rise in glucocorticoids can result in retrascribing iof DNA that can then result in the metabolic trap due to poor enzyme production.
     
    ljimbo423 likes this.
  7. Hip

    Hip Senior Member

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    I do think that your FMT treatment approach is very interesting. Have you considered posting it on a SIBO forum like this one: http://www.beatsibo.com/forum/ ? Or reposting your approach in a new thread on this forum entitled say: "A modified form of fecal microbiota transplant to put my SIBO into remission". You could post that in the Gastrointestinal and Urinary sub-forum.

    Your approach, with these capsules that you devised that release their contents in the small intestine (where SIBO occurs) could be a way to treat SIBO, which is often a difficult condition to fix. So your approach may be of interest to people with SIBO in general, and also to ME/CFS patients who have comorbid SIBO which makes their ME/CFS symptoms worse. It might also help ME/CFS patients without SIBO, although that remains to be seen.

    One the other hand, possibly there may be some risk involved with this small intestine-targeted FMT approach. The small intestine is fairly sterile in many people, so I am thinking that introducing bacteria into the small intestine might in some cases potentially actually trigger SIBO. Furthermore, commensal colonic bacteria such as Bacteroides can cause infection and intra-abdominal sepsis.

    I am not sure how the FMT capsules from openbiome.org work, and whether these deliver their contents to the small intestine or colon. Do you know?
     
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  8. Hip

    Hip Senior Member

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    Elevated IgM would indeed indicate viral reactivation, but usually it's the IgG titers that you find elevated in ME/CFS, not IgM. The interpretation of those raised IgG titers is open to question, and some ME/CFS researchers feel they are red herrings; but in the case of enterovirus, alongside elevated IgG you also find ongoing infections in the tissues of the gut and muscles (and brain), which can be detected if you biopsy and test those tissues. Thus there appears to be a reason for the high IgG: ongoing enteroviral infection in the tissues.

    The enterovirus infection in these tissues is not a reactivated one; rather this tissue infection results from a mutated aberrant form of enterovirus called non-cytolytic enterovirus, which lives inside human cells on a long term basis. Some researchers believe non-cytolytic enterovirus is also the cause of type 1 diabetes and certain heart diseases.
     
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  9. Master4thDegree

    Master4thDegree

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    I have completed a detailed explanation of how I made FMT pills.
     
    Last edited by a moderator: Oct 18, 2018
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  10. Master4thDegree

    Master4thDegree

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    But having IGG titers only indicated that a previous infection has happened. Not sure how those would help, almost everyone on planet earth has IGG titers for most herpes viruses and many many more. But I am listening. I know that many doctors still use IgG to indicate that it may be a hint if they are VERY elevated. But Stanford's research I think (no know) is putting this theory to bed. Not that an individual or sub-category could have this issue of viral reactivation.

    I was certain I had viral reactivation. Turns out I just needed FMT and remove methylation blockage and get hormones balanced.....among a few others.
     
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  11. ljimbo423

    ljimbo423 Senior Member

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    United States, New Hampshire
    I agree. In this video at 25:40 Ron talks about testing for viruses using PCR testing.

    Ron Davis and his team did PCR testing on 20 severely ill ME/CFS patients and 10 healthy controls, for 14 common viruses.

    Adenovirus A-F, Herpes simplex virus 1 and 2, Varicella zoster virus- (chicken pox or shingles virus), Epstein-barr virus (EBV), Cytomegalovirus, Human herpes virus - 6, 7 and 8, human parvo virus B19 and a few others.

    They also tested "multiple regions of the viruses" to make sure they didn't have false negatives or false positives.

    At 28:17 Ron says-
    They found that 1 out of 20 of the ME/CFS patients were positive for EBV (5%) but 1 out of 10 healthy controls tested positive. Which is 10%. Twice as many healthy controls had an active EVB infection than the ME/CFS patients had.

    There were also 2 out of 20 of the ME/CFS patients that were positive for HHV7. Which is 10%.

    However, there were 2 out of 10 healthy controls that tested positive for HHV7. Which is 20%. Again, twice as many healthy controls had an active HHV7 infection than did the ME/CFS patients.

     
    Last edited: Oct 9, 2018
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  12. S-VV

    S-VV Senior Member

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    Thank you for going into so much detail and elaborating actionable steps
     
    Last edited by a moderator: Oct 18, 2018
  13. junkcrap50

    junkcrap50 Senior Member

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    Thanks so much for explaining your steps. Do you know if your procedure is similar to OpenBiome? Did you base your technique on how OpenBiome does their FMT pills/capsules? How did you know to use a centrifuge? How did you know to use 3 layers of capsules versus 2? I imagine you based your protocol on something.
     
    Last edited by a moderator: Oct 18, 2018
  14. perrier

    perrier Senior Member

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    Thank you Hip for raising several issues. GI doctors have told me that there shouldn’t be bacteria in the small intestine. It’s very hard to know what to do.

    I still wonder if you Madter4 degree suffered from PEM. Post exertion all malaise.
    Thank you
     
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  15. ljimbo423

    ljimbo423 Senior Member

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    I can't speak for Master4thDegree but this is from his blog. It sounds like he was in pretty bad shape-

     
    Last edited by a moderator: Oct 18, 2018
  16. junkcrap50

    junkcrap50 Senior Member

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    Well, there are several clinics and techniques of delivering FMT via the top of the digestive route, either via pills or via endoscope. So it does seem like a viable way to transplant microbiota that doesn't seem to cause new cases of SIBO.
     
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  17. perrier

    perrier Senior Member

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    Do you know the names of any of these clinics. Thank you
     
  18. perrier

    perrier Senior Member

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    Thanks Ljmbo. I don’t for a split second doubt the severity of Master’s illness. But PEM is very specific. So I wondered about this specific symptom. Thanks
     
    Last edited by a moderator: Oct 18, 2018
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  19. Hip

    Hip Senior Member

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    But Ron Davis's team is still looking in the blood, not in the tissues where the infections actually lie.

    If you test muscle tissue, like the Cunningham study, you will indeed find viruses there.

    Cunningham looked at the muscle tissues of 140 ME/CFS patients, and found enteroviral RNA in 24% of the muscle biopsy samples, and Epstein-Barr virus DNA in a further 9% of these biopsy samples (though no ME/CFS patient had both enterovirus and EBV in their muscle biopsies). No enterovirus RNA was detected in any of the 152 control samples of human muscle.


    But this discussion of the role of viruses in ME/CFS should be on a thread of its own, not throwing this thread about FMT off track.
     
    Last edited: Oct 10, 2018
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  20. junkcrap50

    junkcrap50 Senior Member

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    Not off the top of my head. I did a lot of FMT research several years ago. But OpenBiome is one that I do know that uses a FMT capsule. Also, I heard from one of my doctors of a FMT via endoscopy where the patient aspirated the FMT and nearly died because fecal matter got into the lungs.
     
    perrier likes this.

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