Some thoughts about a poor microbiome maintaining ME/CFS

bertiedog

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I have followed most of the up-to-date information/studies regarding FMT as a possible treatment for our illness and did think this could be the missing link as to why we don't get well despite eating a healthy diet, taking lots of pre and probiotics, managing stress etc etc.

However the other day when I was visiting a long time friend it occurred to me that because she has diverticulitis she has had to cut out all grains and fibre plus dairy from her diet for probably the last five years now. This has cut her G I symptoms back to just the occasional flare when she has eaten away from home.

This should mean that she has a very poor microbiome because her diet is completely devoid of fibre which is supposed to be necessary to supply essential anti-inflammatories like butyrate plus she should be short of many other bacteria causing many metabolites to be missing or low.

But at the age of 72 she is completely well, huge amounts of energy, engages in daily social activities and physical endeavours. Her energy hasn't changed at all since I have known her which would be around 43 years and she is rarely ill. She remains very slim probably a bit too thin but that is how she has been for all these years nothing has changed except her diet.

So having realised this it does make me rethink my original thoughts that I might not be improving because of my poor microbiome which is of low diversity and with very low butyrate plus lots of so called essential bacteria being low. Actually I am awaiting my latest UBIOME test to see if that has improved at all having been adding organic oats to my daily non dairy yoghurts for the past 6 months and I am trying to eat a small amount of cheese each day to supply at least a bit of dairy daily as I am highly intolerant of milk (butter is ok).

I wonder what everyone else thinks?

Pam
 

vision blue

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I've tested with ubiome a bunch, both for gut and other body parts. It's pretty hard to get anywhere useful i've found. As you know , there's also no discussion forum there, so you can't ask others to compare some things youre interested in and ubIome says their coparison populations are a secret and they won't divulge them. They also make mistakes on al l there graphs; i've emailed them about blatant contradictions; theyre always friendly, but no info that helps.

but on your point, there's an acknowledged chick and egg problem. what you eat influences what bacteria are present, but the bacteria also indluence what you can eat and what your health is. so its arguably just a 21st century "you are what you eat" tool. and we know that one size does not fit everyone, as your friends example demonstrates.

its also acknowledged in literature that some non european indigienous groups have wildly differnt looking gut microbiomes that look unhealthy from our perspective, but are not.

its still an open question as to whether changing the microbiome with fecal transplant will help, besides what it does for cdiff. I wanted to try it, but i'm reluctant because i think i'm allergic to anythign lacto, including lactobacillus. so what would happen to me if i suddently get a s*&^ load (sorry, could not resist) of lactobacillus? My counts are currently zero- not surprising given what i have to avoid.

incidentally, i had an intersting ubiome finding where there was bartonella found in a couple of placess, skin, and either mouth or nose. I repeated it, and was there again. in one place on ubiome it says its only found in 1.5 percent of other testers but in another place it implies its common so not sure what to think. did alert me though to wondering if i could have a chronic bartonella infection.

peole who have done th fecal transplant off label for AI disease are reporting mixed things. Not the miracle pill they were hoping but some say helps.
 

Wishful

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I had a low-fibre diet (just cornstarch and water for many months), and I've had high-fibre diets (lots of oats, whole wheat and flax) and very limited diets (cornstarch, and another (6 months?) period of just white rice and water) and very varied diets (rotational). None of them made a dramatic difference, aside from the rotational diet abruptly switching my type IV food sensitivity delay from 48 hrs to 17.5 hrs (no explanation for that).

I don't follow an antiseptic lifestyle, so I probably get exposed to an above average number of new bacteria, which should increase my chances of getting a new addition to my microbiome. I've tried probiotics and prebiotics. None made a significant difference. While I accept that the microbiome can make a difference to health, my observations convince me that it's not a major driver of health issues, and that simple modification of it is not a magic solution to health issues for most people. Yes it can make a big difference for some, but that doesn't mean that it will work for the majority.
 

Wishful

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incidentally, i had an intersting ubiome finding where there was bartonella found in a couple of placess, skin, and either mouth or nose. I repeated it, and was there again. in one place on ubiome it says its only found in 1.5 percent of other testers but in another place it implies its common so not sure what to think. did alert me though to wondering if i could have a chronic bartonella infection.
Our bodies do have bacterial populations that seem to be limited to certain locales. One example I read was that the bacterial populations of our right hands are a closer match to the populations of another person's right hand than they are to our own left hands. Despite the number of times we touch our hands together in a day, those populations remain separate. So, it seems logical that you can have significant populations of bartonella on your skin without it developing in your gut or wherever else that it might be a problem.

I have a weed (tall buttercup) here that grows wildly on roads and paths, but it doesn't spread significantly into the woods bordering it, despite growing on those roads probably for many decades. I'm sure that seeds spread out, but various factors prevent them from developing into full plants. The same principle seems to apply to microbes.

My non-expert guess is that having some bartonella on your skin does not in any way suggest a chronic internal population.
 

ljimbo423

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I have followed most of the up-to-date information/studies regarding FMT as a possible treatment for our illness and did think this could be the missing link as to why we don't get well despite eating a healthy diet, taking lots of pre and probiotics, managing stress etc etc.
What I have learned in the last 12 years, through trial and error. Is that probiotics, prebiotics and low carb diet, would not kill off the overgrowth of pathogenic bacteria in my gut.

Not until I finally added high doses of antibiotic herbs into my protocol, did I start to see and feel noticeable changes, very slowly. Many of the bacteria in the gut are very resistant to even pharmaceutical antibiotics. So it makes sense to me that probiotics, prebiotics and a low carb diet will not rebalance my gut.

I have gone from the middle of moderate to mostly mild symptoms in the last 2 years with probiotics, prebiotics, low carb. diet and high doses of antibiotic herbs.

Most people that try to add in antibiotic herbs, to kill off pathogenic bacteria in the gut get severe die-off symptoms from it. This was a huge hurdle for me to overcome but I finally did with 2 courses of Rifaximin and a low carb diet, 2 years ago. I was then able to slowly increase my dose of antibiotic herbs.

I have been taking the equivalent of 12-14 grams a day but I'm sure would be doing much better on 2-3 times that dose but I still get side effects from increasing the dose too fast. Treating my gut microbiome is a slow process but it's the only thing that significantly and consistantly improved my CFS in 12 years.

I am doing a 15-20 minute stretching routine, every day. I do 30 reps of arm presses every other day, with light weights. I have been doing both of these for about a month now without issue. I walk 1/2 to 1 1/2 miles twice a week, in addition to several hours of other physical activity a day and continue to improve.

This should mean that she has a very poor microbiome because her diet is completely devoid of fibre which is supposed to be necessary to supply essential anti-inflammatories like butyrate plus she should be short of many other bacteria causing many metabolites to be missing or low.
There is so little known about the gut. Your friends diet might actually be helping her gut. Our gut microbiomes are as unique as our fingerprints and the types of food that help one persons gut, might hurt anothers.

I was reading a while back about someone that went on the carnivore diet, then had his gut microbiome tested. He had a VERY high biodiversity, I think it was 95%! This is with an all meat diet without any fiber. He acually posted his tests to prove how his microbiome changed.
 

Wishful

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There is so little known about the gut. Your friends diet might actually be helping her gut. Our gut microbiomes are as unique as our fingerprints and the types of food that help one persons gut, might hurt anothers.
I agree. At this point in our understanding, there's no way to say 'this bacteria will be good for you, and this one will be bad', at least in general. I think they can make reasonably good decisions about some bacteria for some people, but they're not at the point where they can do a microbiome assay and from that reliably prescribe a treatment that will work. It's certainly not as simple as 'Everyone should eat more oat fibre' or anything like that.
 

Aerose91

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I think part of it is that if we are swayed toward a TH2 immune response it doesn't matter how much we kill stuff off, it will just grow right back. Our immune systems need to be fixed alongside repopulating our gut in order for it to stick, IMO