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

[Judee]

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

Also this article talks about viruses like EBV can hide in our B cells:
https://scienceblog.cancerresearchu...rus-and-the-immune-system-are-cures-in-sight/

 

[ljimbo423]

@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.

 

[knackers323]

@Master4thDegree hello
Have you outlined the diet you have been following while doing this treatment anywhere?

 

[Learner1]

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?

 

[Hip]

This is a quote from Thomas Borody's study on Fecal microbiota Transplantation (FMT) in ME/CFS-

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:

In recently presented work, 60 patients attended CDD (36 female, 24 males; average age 55 ± 11.5yrs) with Chronic Fatigue Syndrome. Of these, 52 had IBS in conjunction with their CFS and another 4 presented with constipation. All underwent bacteriotherapy for their CFS.
...
All patients received a single transcolonoscopic (TC) infusion of 300cc of anaerobic bacterial culture. Fifty-two of the 60 patients then underwent a single, rectal infusion the following day while 3/60 patients underwent two days of rectal infusions

Bacteriotherapy involves the infusion of a mixture of 13 non-pathogenic enteric bacteria (a combination of Bacteroidetes, Clostridia, and E. coli), in attempt to correct imbalances in the composition of the flora.

Faecal microbiota transplantation (FMT) offers an attractive alternative to bacteriotherapy as it enables the reintroduction of a complete, stable and 'healthy' bowel flora. Similar to bacteriotherapy, FMT involves the infusion (via colonoscopy or enema) of bacteria.

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?


At Borody's own clinic, the Centre for Digestive Diseases in Australia, he does not appear offer bacteriotherapy or FMT treatment for ME/CFS. According to the website, he treats ulcerative colitis and IBS with FMT, but not ME/CFS. So his study claims to have found an amazing cure for ME/CFS with IBS, but he is not offering this treatment at his clinic.

 

[Hip]

I have completed a detailed explanation of how I made FMT pills.

Thank you, Master4thDegree.

I found the following from your write up very interesting:

Time is of the essence, most of the best microbes are anaerobic, and can’t ‘breathe’ in oxygenair.

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?

As you can see we are playing a game of Russian Dolls with these capsules. One could chance it with just double encapsulated, but triple is highly advised to avoid early release and breakage in the stomach.

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!

Then into the centrifuge as 3000 rpm for about 10 minutes.

Be slow and gentle when removing the tubes, you don’t want to mix them up again. You will have three distinct layers. Bottom layer is undigested matter like fibers. The top layer is mostly very liquid saline and toxins removed.

The middle is where the magic medicine is. It will look and act very much like peanut butter.

Very interesting about the centrifuge. I wonder if FMT clinics use this centrifuge process to prepare the infusion?

 

[Learner1]

Thanks for reaching out to OpenBiome and I am sorry to hear of your health challenges. Unfortunately, the FDA currently only allows for use of FMT to treat recurrent C. difficile not responding to standard therapies. Patients wishing to receive treatment for any other indication, i.e. ME/CFS, must be involved in a clinical trial. I am not aware of any trials for your indication, but as you mentioned, you can search for a trial using the clinicaltrials.gov website and specify the state and determine if you are eligible for any enrolling trials in your area. If you have any questions about the trial, you can contact the listed investigators under the contact information section on the website.

Please let us know if you have any questions.

Best,
The OpenBiome Team

 

[Master4thDegree]

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?

Detailed post at the site our2ndbrain.com now

Yes, also no food in stomach for 2-3 hrs is critical to avoid stomach acid and a long pause before entering small intestine. Water will just push right in.


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?

I do feel that the clinics cannot provide even a fraction of the success rate based on careful examination of procedure.

 

[Master4thDegree]

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

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.

 

[Master4thDegree]

Posted on SIBO website as you suggested. Great call.

 

[keenly]

I believe CFS starts in the gut. It did for me.

 

[Learner1]

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...

 

[ljimbo423]

It is my belief that ME/CFS has a large sub category of SIBO victims.

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.

 

[ljimbo423]

I believe CFS starts in the gut. It did for me.

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.

 

[Hip]

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...

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.

 

[knackers323]

@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

 

[Hip]

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.

 

[Learner1]

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.

Agreed, I am well aware of this. The issue seems to be access to screened donors, not so much the methodology.

 

[junkcrap50]

Agreed, I am well aware of this. The issue seems to be access to screened donors, not so much the methodology.

Best FMT donor/source is a healthy family member, who's health history you know.

 

[Learner1]

...and, if you don't have that, you're screwed?