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Probiotics and diet subdue ME/CFS symptoms most effectively...does this mean my CFS is (leaky) gut related?

Guwop2

Senior Member
Messages
255
I’ve had ME/CFS for nearly 8 years now and the only thing that have kept the worst of the symptoms at bay are the Renew Life Probiotics (‘80 Billion Colon Care’) and a very strict no sugar/no carb diet. Renew Life have recently discontinued this particular formula of probiotics I’ve been taking (the formula has changed - it took me 4 years to find that this only this formula worked out of all probiotics available on the market at large). I’ve yet to see if this new formula will work but I have to plan for the worst. I have booked an appointment with ME/CFS specialist here in the UK (Dr Bansal) who is able to prescribe antivirals, but the more I think about it my diet and the effect of probiotics are what has benefited me the most...so perhaps my ‘version’ of ME/CFS is gut related(?) Besides probiotics and diet, are there any supplements that can treat leaky-gut ME/CFS? I googled and Butyrate came up, but on here it appears in can sometime trigger latent HBV other virus’s. Could anyone advise me on some of the things I’ve mentioned here?
Thanks

(p.s. apologies for cross posting this from the Gastro thread, but i dont think that thread gets as much thoroughfare as this one, and pehaps my questions is more of a general nature anyway (being a noob when it comes to diagnosis stuff)
 
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Guwop2

Senior Member
Messages
255
No, it just means that probiotics are suppressing your immune system.
In this case then, would say that coming off of probiotics is better for long term recovery?
And also, how sure are you that this is what the probiotics are doing, are there studies that show probiotics suppress the immune system?- ive heard it said the probiotics modulate the immune system, just not heard they suppress it.
 
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HABS93

Senior Member
Messages
485
In this case then, would say that coming off of probiotics is better for long term recovery?
And also, how sure are you that this is what the probiotics are doing, are there studies that show probiotics suppress the immune system?- ive heard it said the probiotics modulate the immune system, just not heard they suppress it.
Don't ever literally take someone's advice as 100%. If something's working for you then keep doing it. Listen to your body first.
 

uglevod

Senior Member
Messages
220
In this case then, would say that coming off of probiotics is better for long term recovery?
And also, how sure are you that this is what the probiotics are doing, are there studies that show probiotics suppress the immune system?- ive heard it said the probiotics modulate the immune system, just not heard they suppress it.

in medical literature modulation equals suppression

probiotics suppress because eventually people relapse on them(in about 2..3 years)

there studies that show probiotics suppress

yes, they modulate gut microbiome to produce less endotoxin = less innate immunity stimulation

you can google something like "probiotics tnf alpha" and then "tnf alpha infections" making a note that all infections raise tnf alpha systemically and the importance of this cytokine for resistance against pathogens, while probiotics suppress it, also systemically

its always about short term palliation vs long term relapse - jumping from one palliative to another until they all eventually stop working - basically this is what people on this forum all do - so be extra cautious in taking advices here, since "misery always loves company"
 

Guwop2

Senior Member
Messages
255
its always about short term palliation vs long term relapse - jumping from one palliative to another until they all eventually stop working - basically this is what people on this forum all do - so be extra cautious in taking advices here, since "misery always loves company"
Are you advising against short-term palliation? What would your approach be?
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
so perhaps my ‘version’ of ME/CFS is gut related(?)

In my view this is entirely possible. I had severe ME/CFS for 6-8 years. By treating sibo/dysbiosis and the leaky gut caused by it. I've improved from severe ME/CFS to fairly mild.

Besides probiotics and diet, are there any supplements that can treat leaky-gut ME/CFS?

I just posted this in another thread-

Allison Seibecker has treated thousands of SIBO patients and is very successful at what she does. This is a link to her website that has tons of info on how to treat SIBO.

That link brings you directly to her "treatment" page. But she has much more info provided in the links at the top of the page.
 

gregh286

Senior Member
Messages
979
Location
Londonderry, Northern Ireland.
In this case then, would say that coming off of probiotics is better for long term recovery?
And also, how sure are you that this is what the probiotics are doing, are there studies that show probiotics suppress the immune system?- ive heard it said the probiotics modulate the immune system, just not heard they suppress it.

Its leaky gut - colon.
Or low grade inflammation. When colitis and diverticulitis flares in me my CFS goes thru roof. React to anything even tea or coffee. Have to go nil by mouth and soft fruits then.
If I do eat something like chocolate that goes go colon quickly I get racing heart and need to sleep. Facial angioedema can ensue. Brain fog. Massive histamine release. Cell danger follows with low exercise tolerance. Fast carbs are out the window.


I know its colon because I get tenderness in left side lower and is tender to touch by pinching the back of and front of my left side same time.

Poo goes bloody and..fluffy. fatty and irritable then can turn around in around 4 days.

Personally I think the low carb low sugar think not really relates to change in energy cycle but takes longer to hit the holey colon from upper tract and reactions are less as process slower in tract....less reaction means less cell danger...IMHO.

I try and work through it with lactoferin...lot of small picky meals.....fats.....probios. lactoferrin good stuff.
Gut trigger remain elusive. Think its any grain. Even with gluten out.

Always a fight eh
 

gregh286

Senior Member
Messages
979
Location
Londonderry, Northern Ireland.
I’ve had ME/CFS for nearly 8 years now and the only thing that have kept the worst of the symptoms at bay are the Renew Life Probiotics (‘80 Billion Colon Care’) and a very strict no sugar/no carb diet. Renew Life have recently discontinued this particular formula of probiotics I’ve been taking (the formula has changed - it took me 4 years to find that this only this formula worked out of all probiotics available on the market at large). I’ve yet to see if this new formula will work but I have to plan for the worst. I have booked an appointment with ME/CFS specialist here in the UK (Dr Bansal) who is able to prescribe antivirals, but the more I think about it my diet and the effect of probiotics are what has benefited me the most...so perhaps my ‘version’ of ME/CFS is gut related(?) Besides probiotics and diet, are there any supplements that can treat leaky-gut ME/CFS? I googled and Butyrate came up, but on here it appears in can sometime trigger latent HBV other virus’s. Could anyone advise me on some of the things I’ve mentioned here?
Thanks

(p.s. apologies for cross posting this from the Gastro thread, but i dont think that thread gets as much thoroughfare as this one, and pehaps my questions is more of a general nature anyway (being a noob when it comes to diagnosis stuff)

Try garden of life RAW
Best I ever used.
And I tried many I assure you.
 

Guwop2

Senior Member
Messages
255
In my view this is entirely possible. I had severe ME/CFS for 6-8 years. By treating sibo/dysbiosis and the leaky gut caused by it. I've improved from severe ME/CFS to fairly mild.



I just posted this in another thread-

Allison Seibecker has treated thousands of SIBO patients and is very successful at what she does. This is a link to her website that has tons of info on how to treat SIBO.

That link brings you directly to her "treatment" page. But she has much more info provided in the links at the top of the page.
Thank, i'll take a look.
 

Guwop2

Senior Member
Messages
255
Its leaky gut - colon.
Or low grade inflammation. When colitis and diverticulitis flares in me my CFS goes thru roof. React to anything even tea or coffee. Have to go nil by mouth and soft fruits then.
If I do eat something like chocolate that goes go colon quickly I get racing heart and need to sleep. Facial angioedema can ensue. Brain fog. Massive histamine release. Cell danger follows with low exercise tolerance. Fast carbs are out the window.


I know its colon because I get tenderness in left side lower and is tender to touch by pinching the back of and front of my left side same time.

Poo goes bloody and..fluffy. fatty and irritable then can turn around in around 4 days.

Personally I think the low carb low sugar think not really relates to change in energy cycle but takes longer to hit the holey colon from upper tract and reactions are less as process slower in tract....less reaction means less cell danger...IMHO.

I try and work through it with lactoferin...lot of small picky meals.....fats.....probios. lactoferrin good stuff.
Gut trigger remain elusive. Think its any grain. Even with gluten out.

Always a fight eh

Thank you, though a lot of those symtoms aren't what i experience My symptoms are only inflammation over my body, the 'walking through jelly' viral fatigue feeling/sensation, head sensations too. My trigger seems to be all stimulants - basically sugar and caffeine ( and by sugar i mean all carbs and fruit. nothing above 10g per 100g of sugar). By the sounds of it im not sure if it is leaky-gut for me, if what you describe are classic LG symptoms.
 

gregh286

Senior Member
Messages
979
Location
Londonderry, Northern Ireland.
Thank you, though a lot of those symtoms aren't what i experience My symptoms are only inflammation over my body, the 'walking through jelly' viral fatigue feeling/sensation, head sensations too. My trigger seems to be all stimulants - basically sugar and caffeine ( and by sugar i mean all carbs and fruit. nothing above 10g per 100g of sugar). By the sounds of it im not sure if it is leaky-gut for me, if what you describe are classic LG symptoms.

I also have body wide inflammation. It attack my elbow joints and hips and head. Sometimes I can't focus sight correctly. It attack tendons and ligament.
Its a hyper immune all out attack
I'm telling you it.all start from leaky gut. Send body into crisis mode and thinks everything is invader.
As for sugar or chocolate its actually lucifer.
Natural yoghurt is a good food to break monotony
 

Hip

Senior Member
Messages
17,992
Probiotics and diet subdue ME/CFS symptoms most effectively...does this mean my CFS is (leaky) gut related?

ME/CFS patients can have several issues with their gut SIBO, colon dysbiosis, and leaky gut.

SIBO in particular, just on its own, is able to cause fatigue and brain fog, so when you have SIBO on top of ME/CFS, it can make the fatigue and brain fog much worse. ME/CFS patients who have addressed their SIBO may find their ME/CFS symptoms improve substantially.

Probiotics are beneficial for SIBO, so this is one area you might want to look into (some overview on SIBO testing and treatment is found in this roadmap, if you search for the word "SIBO").
 

Guwop2

Senior Member
Messages
255
ME/CFS patients can have several issues with their gut SIBO, colon dysbiosis, and leaky gut.

SIBO in particular, just on its own, is able to cause fatigue and brain fog, so when you have SIBO on top of ME/CFS, it can make the fatigue and brain fog much worse. ME/CFS patients who have addressed their SIBO may find their ME/CFS symptoms improve substantially.

Probiotics are beneficial for SIBO, so this is one area you might want to look into (some overview on SIBO testing and treatment is found in this roadmap, if you search for the word "SIBO").

I did look into SIBO, but the testing seemed hit and miss, and the treatment (antibiotics) seemed brutal and if it didn't work would amke me feel really bad. Luckily i dont get brainfog - i feel so fortunate on this point - but the fatigue can be quite bad. I will look again into Herbal treatment for SIBO, i bought some Black Seed Oil and got Herxeimers reaction to when taking so stopped because i was busy at the time - perhaps i should contonue to take it since the Herxing (iirc) is a sign it's doing something good.
 

Hip

Senior Member
Messages
17,992
I did look into SIBO, but the testing seemed hit and miss, and the treatment (antibiotics) seemed brutal and if it didn't work would amke me feel really bad.

Yes, the breath tests for SIBO are not that reliable, with a sensitivity of only around 55%. That means only 55% of people who actually have SIBO will receive a correct positive result on the breath test (the other 45% will receive an incorrect negative result).


One study showed that herbal treatment of SIBO can be just as effective as antibiotic treatment, although it takes longer (a month or so). And herbal treatment has the advantage that you can continue it, in order to keep SIBO at bay (SIBO often returns after antibiotic / antibacterial treatment is finished).

One study found that a physician's elemental diet (to starve the bacteria) for two weeks was highly effective at eradicating SIBO. 1 More info here.
 

Guwop2

Senior Member
Messages
255
The physicians diet looks very promising. I may well try that. You dont happen to know if taking probiotics during this period is allowed? (i cant see why not)
 

Hip

Senior Member
Messages
17,992
You dont happen to know if taking probiotics during this period is allowed? (i cant see why not)

I would have thought that probiotics will further enhance the effect of an elemental diet, but I don't know for sure.
 

EddieB

Senior Member
Messages
613
Location
Northern southern California
..so perhaps my ‘version’ of ME/CFS is gut related(?
Hi Guwop2,
My worst ME/CFS symptoms are also gut related. The original onset 30+ years ago began with what seemed to be a bad case of food poisoning, that hasn’t ever really gone away.
I’m currently looking at the following, some things for you to consider...
1. SIBO -
Did the breath test, but I’m skeptical of the results. Within 45 minutes/ hour of eating any sugars, I’m hit with abdominal pain and/or diarrhea. Probiotics also produce negative effects. Taking pre/probiotics with SIBO is a two edged sword, you really need to know what you’re feeding. They did appear to be helpful at one time, but no longer.
Years ago, I was prescribed the antibiotic medications for SIBO, but it made me violently ill. Currently trying different natural anti microbials, mastic gum, marshmallow root, etc.
2. H pylori-
Again, have had tests, but antacids (that I’m trapped on) can skew the results, causing false negatives. H pylori can have a number of other symptoms besides the stomach, like hives and fatigue. And there is the echo/entero virus that many here are chasing as well. I did the blood tests, but came back negative. Hoping that the natural supplements may have an effect.
3. Stress/ anxiety/ hidden emotional issues-
This is what the gastrologists have diagnosed. Could be a result, rather than the cause.
Last year, I went down their rabbit-hole of antidepressant medications, which didn’t work and have left me in worse shape than before. I have been to the phyc as well, but again, they are throwing pasta at the wall with their diagnosis. So while I’m not totally dismissing this as a factor, I’m resistant to trying more drugs without a better basis.

Tried prescription antivirals, cannot take, too hard on the already damaged digestion.

Everyone of us is different, for myself, most everything that should help, makes things worse. So if you were able to find something that helps you to feel better, my opinion/ vote is to stick with it, while continuing to look for answers. You should be able to find out what strains were in your original formula, and recreate it accordingly. Most formulas have a primary strain, maybe start with it. And above all, be sure to NOT take something that wasn’t in the original formula.
What one bug fears, another has for dinner, so proceed with caution.
 
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