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

[Mary]

ADVERTISING LINKS (WEBSITE & BLOG) HAVE BEEN REMOVED FROM THIS THREAD -

 

[S-VV]

Did something happen, or was there some spammer that got removed?

 

[ljimbo423]

Did something happen, or was there some spammer that got removed?

I'm not sure but I think it was the link to the original posters website/blog.

 

[S-VV]

Strange, I wasnt aware he was selling anything. His website seems to be under construction though

 

[Mary]

Strange, I wasnt aware he was selling anything. His website seems to be under construction though

He was offering to provide "coaching" through his website and would not provide the assurances we required that all services would be provided for free. (see Rule 6, Forum Rules)

 

[PhoenixDown]

By the way, given that eradication of SIBO (if present) has been shown to improve the symptoms of ME/CFS (see here)

That study only uses the CDC criteria for CFS (Doesn't even mention ME), which is too loose to be applied to ME patients.

 

[Hip]

That study only uses the CDC criteria for CFS (Doesn't even mention ME), which is too loose to be applied to ME patients.

Quite possibly if the patients were mild CFS patients (on the scale of mild, moderate and severe). But if the patients had severe ME/CFS (bedbound patients), then I doubt there would be much difference between the cohorts selected by the CDC Fukuda criteria and the CCC.

Like most ME/CFS studies, the Botody study does not specify the severity. I always find it unsatisfactory when studies do not mention the severity of the ME/CFS patients they treated.

 

[kangaSue]

I've had a thought for doing autologous FMT.

There's a couple of studies around suggesting that one positive predictor for the efficacy of FMT in IBS patients was having a donor that contained high amounts of the Bifidobacterium genus, the suggestion being that this may be the factor that stimulates a patient's microbiota to recover from decreased diversity to the microbiota level of the donor.

It's often mentioned here (PR) that taking bifidobacterium supplements doesn't do much for symptoms or isn't even tolerated but I wonder if you can improve your own faeces sample just by adding bifidobacterium to it then proceed with autologous FMT.

Being strictly anaerobic bacteria could be a problem but maybe it's possible to cultivate them somewhat with the likes of AnaeroPack's mentioned in this paper;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637308/
Bifidobacterium-Rich Fecal Donor May Be a Positive Predictor for Successful Fecal Microbiota Transplantation in Patients with Irritable Bowel Syndrome.

http://ageless.mgc-a.com/product/anaeropack/

 

[wonderoushope]

Was the original poster only in remission for a few month with increased energy?

I recovered for 14 months which allowed me to do strenuous exercise. Unfortunately, by the 16th month PEM reared it’s head for the first time and went back downhill from there.

I don’t think a few months can be called success.

 

[Master4thDegree]

Was the original poster only in remission for a few month with increased energy?

I recovered for 14 months which allowed me to do strenuous exercise. Unfortunately, by the 16th month PEM reared it’s head for the first time and went back downhill from there.

I don’t think a few months can be called success.

From your perspective I could see who success would be mitigated by relapse in that case. Indeed, relapse ever looms, yet for the meantime I have continue to progress.

In the study below Search or scroll down to the section heading.
"Faecal microbiota transplantation"
When time permits I will explain why your results should be even higher in likelihood. These figures should be highly reassuring.

Let's connect again tomorrow or Wednesday to go over logistics and preparation of you GI tract.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5301046/

 

[Master4thDegree]

I've had a thought for doing autologous FMT.

There's a couple of studies around suggesting that one positive predictor for the efficacy of FMT in IBS patients was having a donor that contained high amounts of the Bifidobacterium genus, the suggestion being that this may be the factor that stimulates a patient's microbiota to recover from decreased diversity to the microbiota level of the donor.

It's often mentioned here (PR) that taking bifidobacterium supplements doesn't do much for symptoms or isn't even tolerated but I wonder if you can improve your own faeces sample just by adding bifidobacterium to it then proceed with autologous FMT.

Being strictly anaerobic bacteria could be a problem but maybe it's possible to cultivate them somewhat with the likes of AnaeroPack's mentioned in this paper;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637308/
Bifidobacterium-Rich Fecal Donor May Be a Positive Predictor for Successful Fecal Microbiota Transplantation in Patients with Irritable Bowel Syndrome.

http://ageless.mgc-a.com/product/anaeropack/

That would make great sense in many cases. Some people I have conversed with have had low butyrate producing bacteria, or a really hard case of someone clearly missing lactobacilifamily of bacteria. Due to the uniquness, I have found that erasing the gut and performing a transplant helps avoid the guesswork. I bet someday we will be able to better target specific families of bacterium.

In the study below Search or scroll down to the section heading. Of course relapse is still possible, but this shows a high degree of coorelation at least to the gut.
"Faecal microbiota transplantation"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5301046/

 

[gbells]

The easiest way to test for low butyrate is to just supplement it and see if that improves energy.

https://www.iherb.com/pr/Nutricolog...dR_WfDT3UaDzpX6iGo4aAg2WEALw_wcB&gclsrc=aw.ds

 

[kangaSue]

The easiest way to test for low butyrate is to just supplement it and see if that improves energy.

I think it's safe to just assume you are low in butyrate anyway as a large number of the gut microbiome studies into a variety of conditions are finding that butyrate, along with acetic acid and propionic acid, are very prevalent deficient factors.

 

[gbells]

I think it's safe to just assume you are low in butyrate anyway as a large number of the gut microbiome studies into a variety of conditions are finding that butyrate, along with acetic acid and propionic acid, are very prevalent deficient factors.

I disagree. I have CFS without low butyrate. However, I think CFS patients have reduced energy production as a consequence of the disease and are more sensitive to it. Most American CFS patients are probably eating the Standard American Diet (SAD) of red meat and simple carbohydrates that promotes bad bacteria balance. I'm not. It would be easy to mistakenly attribute the bad effect of the SAD diet to CFS patients if you don't tease it out of the data.

However, if my MD put me on an antibiotic for a few weeks it would make sense to use it as a crutch until I got the bacterial flora re-established.

Butyrate is an expensive supplement. People shouldn't waste money on it if it isn't needed.

One book I like a lot for tips on what to eat is The Plant Paradox by Gundry. It isn't perfect but its a start.

 

[Wayne]

The easiest way to test for low butyrate is to just supplement it and see if that improves energy.

Butter is one of the richest sources of butyrate, so monitoring how we feel after eating butter might be another test. I've found that eating something with a pat of butter on it in the evening almost always helps me sleep better. And the difference is pretty significant.

 

[gbells]

Butter is 4% butyrate but mostly saturated fat which is unhealthy (causes insulin resistance and fat gain). That means you have to eat a lot more sat fat to get the same dose of butyrate that you could get in the Butyraid supplement.

https://www.deannaminich.com/the-benefits-of-butter-a-rich-source-of-butyrate/

 

[Wayne]

Butter is 4% butyrate but mostly saturated fat which is unhealthy

I'm not positive that it's the butyrate that helps me sleep, perhaps it's some of the fat as well. -- Just to mention, I don't believe that good saturated fats are unhealthy, and unfortunately, I bought into that notion for too many years.

From what I can gather, the idea that they're unhealthy was invented by the vegetable oil companies to try to drum up more business. They funded their own "scientific research" (???) which eventually made its way into conventional medicine dietary guidelines. -- As a yardstick, it might be good to consider that the fat content of mother's milk is generally 40-50% saturated fat.

As far as the insulin resistance is concerned, I've noticed a very much improved ability to maintain normal blood sugar levels by swtiching to a more ketogenic type diet. I really do believe I somewhat harmed myself for many years by not eating enough good natural fats. The fact that I sleep so much better after eating small amounts of butter in the evening tells me I'm on the right track.

 

[MeSci]

I'm not positive that it's the butyrate that helps me sleep, perhaps it's some of the fat as well. -- Just to mention, I don't believe that good saturated fats are unhealthy, and unfortunately, I bought into that notion for too many years.

From what I can gather, the idea that they're unhealthy was invented by the vegetable oil companies to try to drum up more business. They funded their own "scientific research" (???) which eventually made its way into conventional medicine dietary guidelines. -- As a yardstick, it might be good to consider that the fat content of mother's milk is generally 40-50% saturated fat.

As far as the insulin resistance is concerned, I've noticed a very much improved ability to maintain normal blood sugar levels by swtiching to a more ketogenic type diet. I really do believe I somewhat harmed myself for many years by not eating enough good natural fats. The fact that I sleep so much better after eating small amounts of butter in the evening tells me I'm on the right track.

I think (hope!) that coconut oil, which is also saturated, does a similar thing for vegans. I did similar to you, although a vegan version, for many years. It wasn't until I ditched the gluten that I got to a sustainable and healthy weight and lost the constant hunger.

 

[gbells]

I think (hope!) that coconut oil, which is also saturated, does a similar thing for vegans. I did similar to you, although a vegan version, for many years. It wasn't until I ditched the gluten that I got to a sustainable and healthy weight and lost the constant hunger.

Coconut oil doesn't and contains no butyric acid. Totally different purpose. Butyric acid is a byproduct of healthy bacteria digesting leafy greens. It is an energy source for the intestinal cells in your gut wall. Coconut oil is a medium chain fatty acid which can serve as a source of glucose in a low glucose state.

 

[Wayne]

It wasn't until I ditched the gluten that I got to a sustainable and healthy weight and lost the constant hunger.

Moving toward a more ketogenic diet the past couple of years started improving my "constant hunger". When I gradually increased my length of time between my last eating on one day to the first eating of the next (intermittent fasting), my constant hunger improved even more. Incorporating a fasting apple cider vinegar drink, in the past couple of weeks has been another boost. I now average about 16 - 20 hrs. of intermittent fasting every day, and experience very little hunger when doing so. My former "constant hunger" was pretty torturous in some ways, so this feel like a huge relief.