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.
Discuss the article on the Forums.

How I put ME/CFS into remission....& even better

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

?

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. Judee

    Judee Senior Member

    Messages:
    357
    Likes:
    708
    Wisconsin
  2. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,368
    Likes:
    2,772
    United States, New Hampshire
    @Master4thDegree

    I don't know if you have heard this yet but there are 3 leading ME/CFS researchers that say they think that ME/CFS starts in the gut!

    They are Derya Unutmaz, Ian Lipkin and Chris Armstrong. There is also another ME/CFS researcher that's not quite so much in the foreground.

    He has also said the same thing, he is Anthony Komaroff from Harvard.
     
    Murph likes this.
  3. knackers323

    knackers323 Senior Member

    Messages:
    1,468
    Likes:
    468
    @Master4thDegree hello
    Have you outlined the diet you have been following while doing this treatment anywhere?
     
    ljimbo423 and Learner1 like this.
  4. Learner1

    Learner1 Administrator

    Messages:
    3,308
    Likes:
    5,722
    Pacific Northwest
    OpenBiome only will help patients with c..difficile. If you want it for any other reason, you have to be in a clinical trial. There are no clinical trials for OpenBiome FMT for ME/CFS, are there?

    So, that is not an option.

    Where does one get clean, diverse donor material?
     
  5. Hip

    Hip Senior Member

    Messages:
    11,337
    Likes:
    19,337
    One thing to note about the Borody study is that they did not use fecal microbiota transplantation on the ME/CFS patients.

    Rather Borody implanted cultured gut bacteria (Bacteroidetes, Clostridia, and E. coli) into the colon. He describes this as a transcolonoscopic infusion, which I think means infusing the bacteria at the far end of the colon (where it joins the small intestine).

    So this difference might explain Borody's apparent higher success rate, compared to for example Dr Kenny De Meirleir, who found fecal transplants were effective for ME/CFS, but the positive effects were only short-lived, lasting around 10 weeks (after which he says the bad bacteria would return).


    You can get the full Borody study as a pdf here, in which it explains that:
    So it is clear that when Borody refers to bacteriotherapy, he does not mean fecal microbiota transplantation of stool from a donor, but infusion into the colon of bacterial species that have been cultured in the lab.



    But no other study or treatment center has repeated these bacteriotherapy results to my knowledge, which makes me question the original Borody study. If this simple bacteriotherapy approach was really permanently curing nearly 60% of ME/CFS patients, I am sure it would have been adopted around the world.

    It's possible that new regulations have now prevented the use of cultured bacterial infusions of species such as Bacteroidetes, Clostridia, and E. coli, because of the risk of infections or sepsis. Maybe that is the reason Borody's approach was not adopted?
     
    Last edited: Oct 10, 2018
    Mary, perrier and ljimbo423 like this.
  6. Hip

    Hip Senior Member

    Messages:
    11,337
    Likes:
    19,337
    Thank you, Master4thDegree.

    I found the following from your write up very interesting:
    So you are saying that you have to prepare the fecal transplant quickly, else some of the anaerobic organisms will be killed by the oxygen in the air. Perhaps that was a key element of your success.

    I wonder if FMT clinics like the Taymount Clinic follow this rapid protocol? Clinics have donors who supply the stool, but I wonder if they follow a protocol to protect the stool from air and oxygen?


    So your technique for ensuring the bacteria are not exposed to stomach acid is to have a capsule within a second capsule within a third capsule, like Russian dolls. Very clever!


    Very interesting about the centrifuge. I wonder if FMT clinics use this centrifuge process to prepare the infusion?
     
    Last edited by a moderator: Oct 18, 2018
    MeSci likes this.
  7. Learner1

    Learner1 Administrator

    Messages:
    3,308
    Likes:
    5,722
    Pacific Northwest
     
    sb4 and melihtas like this.
  8. Master4thDegree

    Master4thDegree

    Messages:
    29
    Likes:
    76
    I do feel that the clinics cannot provide even a fraction of the success rate based on careful examination of procedure.
     
    Last edited by a moderator: Oct 18, 2018
    MeSci likes this.
  9. Master4thDegree

    Master4thDegree

    Messages:
    29
    Likes:
    76
    Actually my greatest fear was the notion that Small intestine is to be sterile. I found significant research that debunked that before I performed what I thought was risky at the time. The small intestine isn't sterile, but has a significantly lower level of bacteria. In fact there is bacteria in your mouth, esophagus, stomach too. Some bacteria have adapted to survive in the gut.

    It is my belief that ME/CFS has a large sub category of SIBO victims. The dysbiosis is so pervasive in many cases that even the microbial environment on skin changes. Mostly do to immune regulation issues, our immune systems can't keep up with good vrs bad bacteria. Body causes inflammation as a response to poor immune system.
     
    Hip, anne_likes_red and perrier like this.
  10. Master4thDegree

    Master4thDegree

    Messages:
    29
    Likes:
    76
    Posted on SIBO website as you suggested. Great call.
     
    Hip likes this.
  11. keenly

    keenly Senior Member

    Messages:
    714
    Likes:
    756
    UK
    I believe CFS starts in the gut. It did for me.
     
    Kathevans and ljimbo423 like this.
  12. Learner1

    Learner1 Administrator

    Messages:
    3,308
    Likes:
    5,722
    Pacific Northwest
    Thank you for your hard work on this. It makes a lot of sense.

    However, what do we do if we don't have a pure 4 year old laying around making the raw goods?? This seems to be the stumbling block...
     
    Last edited by a moderator: Oct 18, 2018
    mattie and perrier like this.
  13. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,368
    Likes:
    2,772
    United States, New Hampshire
    After many years of research, I believe that SIBO is a big cause of ME/CFS. I think it's bigger than a "large sub category". I think it's probably the majority of people with ME/CFS. With smaller subsets with other causes.

    Doctor Sarah Myhill thinks the same thing, as well as many functional medicine doctors.
     
    perrier likes this.
  14. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,368
    Likes:
    2,772
    United States, New Hampshire
    I agree!! I believe my ME/CFS also started in my gut. I am slowly reversing that through targeted treatment of SIBO and mitochondrial support. I think mitochondrial support is incredibly important when using antibiotic herbs to treat the gut.

    It helps protect the mitochondria from the lipopolysaccharides that flood the bloodstream, from the bacteria being killed off.

    I have improved a lot and continue to improve with gut treatments.
     
    MeSci likes this.
  15. Hip

    Hip Senior Member

    Messages:
    11,337
    Likes:
    19,337
    When looking out for FMT donors, it may be wise to avoid a donor with obesity, as there was one case of a fecal microbiota transplant from a donor who was mildly obese that resulted in the recipient rapidly developing obesity herself.

    This probably occurred because obesity has been linked to pathogens such as adenovirus 36, which may have been passed via the stool. Adenovirus 36 infects adipocytes cells and causes those cells to accumulate more fat, leading to obesity. Obesity is also associated with higher gut levels of certain Firmicutes bacteria in relation to Bacteroidetes bacteria.
     
    MeSci, Moof, Art Vandelay and 2 others like this.
  16. knackers323

    knackers323 Senior Member

    Messages:
    1,468
    Likes:
    468
    @Master4thDegree have you written about the diet you followed and supplements like resistant starch etc. anywhere?
    I could not find it mentioned on your site
     
    ljimbo423 likes this.
  17. Hip

    Hip Senior Member

    Messages:
    11,337
    Likes:
    19,337
    I am curious if you ever tried the antibiotic rifaximin which is often recommended for SIBO, @Master4thDegree, and if so what your results were? Rifaximin is particularly effective for IBS or SIBO because it is not systemically absorbed and thus remains and concentrates in the digestive tract.
     
    Last edited: Oct 12, 2018
  18. Learner1

    Learner1 Administrator

    Messages:
    3,308
    Likes:
    5,722
    Pacific Northwest
    Agreed, I am well aware of this. The issue seems to be access to screened donors, not so much the methodology.
     
    Hip likes this.
  19. junkcrap50

    junkcrap50 Senior Member

    Messages:
    367
    Likes:
    544
    Best FMT donor/source is a healthy family member, who's health history you know.
     
    Judee likes this.
  20. Learner1

    Learner1 Administrator

    Messages:
    3,308
    Likes:
    5,722
    Pacific Northwest
    ...and, if you don't have that, you're screwed?
     
    S-VV likes this.

See more popular forum discussions.

Share This Page