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Studies find that microbiome changes may be a signature for ME/CFS

tyson oberle

Senior Member
Messages
213
Location
tampa, florida
Enzymedica, Kiwi Regularity, Kiwi , 30 Relief Chews (iherb.com)

Yes, my symptoms improved, especially fatigue.[/QUOTE
I also bought Kiwi Regularity and I hope it works for my fatigue also, but I don't like the added sugar (tapoica dextrose) and other added ingredients, But my local health food store had it in stock and so I bought 2 bottles to start right away. In the meantime I ordered the same product from Amazon as MonkeyMan did. thanks @MonkeyMan for letting us know
 

gregh286

Senior Member
Messages
979
Location
Londonderry, Northern Ireland.
I just ordered these 2 products from Amazon -

A bacteriophage (to gobble up the bad bacteria and make room for more good guys)
Gold kiwi powder (for the reasons discussed in this thread)

Also, I've been taking heaping tablespoons of this ripe banana powder everyday, and it definitely helps with my bowel function, and possibly my energy.

Just to put all this in context, my ME/CFS started when I was taking heavy extended doses of oral tetracycline antibiotics to treat my acne. All that tetracycline caused severe, prolonged intestinal dysbiosis / candidiasis, which in turn caused the ME/CFS that I've battled now for nearly 40 years.

hi
would golden kiwi fruit itself not be as effective?
thats bascially all that supplment is
 

BrightCandle

Senior Member
Messages
1,175
I am going to say this now, but eating 2 kiwi fruits a day has gotten pretty old quite quickly. I like kiwi fruit and I didn't manage to find any pill forms easily so seemed like I could put in a couple of kiwi a day but I wouldn't underestimate it the impact over a week! In a months time I'll be glad when it ends.

I don't have much confidence in it doing much. I am pretty certain the gut dysfunction is all the result of the immune system going haywire and impacting the microrobes that live there and any change I make is likely temporary and wont change the course of the disease. After Bhupesh's paper on EBV/HHV6 I suspect I have those and Covid in my brain and Central Nervous system and everything else is just playing with the downstream impact of that chronic infection my body can't clear.
 
Messages
31
-Sudden onset March 17, 2007
-Experienced remission in July 2007 after taking a liquid vitamin for about a week to ten days.
-Life's Fortune brand, if I recall correctly. And I probably do not.
-I naively thought the whole thing was over. The remission lasted for a little over a week; I was back in the gym, etc.
-I worked a stressful eight or nine days straight and the CFS returned to stay.
-I was never able to replicate the success and another remission.
-At the time, I thought it the vitamins caused everything to get back on track (temporarily). Now I wonder if my gut microbiome was changed for a brief period.
 

BrightCandle

Senior Member
Messages
1,175
-At the time, I thought it the vitamins caused everything to get back on track (temporarily). Now I wonder if my gut microbiome was changed for a brief period.

You will likely find this very interesting: https://twitter.com/remissionbiome

A pair of scientists doing a self experiment using Antibiotics trying to induce a remission event under this exact theory. But they are doing a wild amount of testing of the biome and metabolites before, during and after the event to see if they can capture what is important. They are I think hoping to induce today.

I had my own from HASPD v3.2 by Joshua, it started out as described and then I had a remission event where I went up to 80%, suffered no PEM and started to look like I was staying that way, lasted about 2 months and then I crashed and I have been better than before that started but only a bit.
 
Messages
31
That is interesting. Thanks. Previously, I thought PEM was due to something going into the bloodstream due to exercise. Their study shows nothing is happening.
Is "HASPD v3.2 by Joshua" an assessment or protocol of some sort?
The other thing they discuss is oral microbiome. In my case, I experienced the initial sudden onset for several days and then was fine for several weeks until I had dental crown work done. That was followed by a severe crash.
 

BrightCandle

Senior Member
Messages
1,175
My second biomesight results came back. In my first one 1.5 years ago I had about half the F Prusnitz I should have, too much gram negative, low butyrate producers generally, little bifiobacterium. My latest my F Prusnitz is normal and butyrate producers are also normal or slightly higher than average. Butyrate is not the cause of ME/CFS and its not really a contributing factor that I can see.

The treatment involved a bunch of things like Milk Kefir and one of the consequences of those is a redution in diversity and some pathogenic bacteria from Milk fats. My bifiobacterium got worse despite yoghurts containing it and various probiotics also containing it.

I don't really know quite what to make of this. My initial thoughts are that probiotic pills don't work. The main growth I got was from what I eat and now my gut looks like my diet so there is a strong chance Kefir doesn't work and yoghurts don't either. I have had a remarkably stable diet over 1.5 years and somewhat restricted and my gut biome reflects that diet which is too high in milk fat due to the Milk Kefir and home made yoghurts. While trying to mostly grow Bifidiobacterium I went the opposite direction and all but wiped it out.

I will do a bigger write up as there are lots of things to compare and detail on my diet but all I know is butyrate is not the cause of ME/CFS, it can't be I have 10% more than the average person in my gut now.
 

SWAlexander

Senior Member
Messages
1,987
The NIH-Funded Gut Studies Pt. II: A Gut Origin for Chronic Fatigue Syndrome (ME/CFS)?
It was remarkable to see two studies and an NIH blog suggesting that a biomarker may have been found for chronic fatigue syndrome (ME/CFS) get published on the same day. The effort to promote and link these studies together worked and numerous media outlets have covered them. Part I of this series examined the large study coming out of Ian Lipkin’s ME/CFS research center.

Excerpt:
When it came to distinguishing the ME/CFS patients from the age and sex-matched healthy controls it wasn’t the low butyrate but the low “evenness” found in the ME/CFS patients’ microbiome that really set them apart. Less common bacteria that produced compounds like tryptophan, butyrate, and propionic acid were less abundant. (The Williams Lipkin study also found a depletion of rarer microbes). That, of course, brings up the question of what could throw the microbiome off in that way.
With regard to microbial genes, people with ME/CFS displayed decreased genes involved in the production of betaine (an anti-inflammatory), sphingomyelin, serotonin, and cholesterol. Sphingomyelin was also found reduced in Lipkin’s peroxisome study as well as low cholesterol.

https://www.healthrising.org/blog/2023/02/14/gut-origin-chronic-fatigue-syndrome/
 

lyran

Senior Member
Messages
194
I also think butyrate or imbalanced gut bacteria overall is not the cause of CFS/ME but just one piece of the puzzle. If it all would be gut related, why patients who get a fecal transplant are not cured? it is usually just a temporary remission at most.

Still, it would be a great treatment if you stay on remission by consuming poop pills.
 
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tyson oberle

Senior Member
Messages
213
Location
tampa, florida
El-Salhy et al makes the donor freeze the fecal immidiately after arrival in their studies. Its quite possible that this technique makes more anaerob bacteria survive. They also place the fecal at the start of the small intestine via a cable instead of having someone eat a pill. Also they use what they call a super donor with perfect health and gut health. They had huge results in their studies on ibs.
Surely, there must be many other good bacteria killed when exposed to oxygen. Wouldn't it be better to insert whole unprepped pieces of donor stool into the rectum without doing anything to it? I'm thinking that the good bacteria inside the donor stool wouldn't be exposed to oxygen and therefore wouldn't be killed?
 
Messages
22
Location
Greater NYC area
Well, my skepticism is less now. I started taking the Gold kiwi powder three days ago, and let's just say (to avoid TMI) that the results have been spectacular! The question is, will this continue??

I‘ve added the gold kiwi pills to my probiotic, prebiotic, and butyrate regimen and my IBS is literally completely gone. No change to my me/cfs though. Curious if anyone’s had a change to their me/cfs….
 

MonkeyMan

Senior Member
Messages
408
I‘ve added the gold kiwi pills to my probiotic, prebiotic, and butyrate regimen and my IBS is literally completely gone. No change to my me/cfs though. Curious if anyone’s had a change to their me/cfs….

WOW!! That's awesome to hear, a huge step forward. How long have you been on the kiwi pills? I haven't noticed a change in my ME/CFS yet but hoping to over time.
 
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