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Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

Leopardtail

Senior Member
Messages
1,151
Location
England
@MeSci

I remember seeing a study some time ago in which KDM experimented with a cocktail of supplements including 5-MTHF to restoring the digestive tract. Does it ring any bells will you? I have been having trouble re-locating it.

B.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@MeSci

I remember seeing a study some time ago in which KDM experimented with a cocktail of supplements including 5-MTHF to restoring the digestive tract. Does it ring any bells will you? I have been having trouble re-locating it.

B.

Not familiar with it, sorry. I haven't been following the methylation threads so didn't even know what 5-MTHF was - had to do a search. A forum search for 'tetrahydrofolate meirleir' produces 6 hits. Maybe one of those will relate to what you want.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Not familiar with it, sorry. I haven't been following the methylation threads so didn't even know what 5-MTHF was - had to do a search. A forum search for 'tetrahydrofolate meirleir' produces 6 hits. Maybe one of those will relate to what you want.
@MeSci could not remember the spelling of his name, so thanks for that.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Then what source of carbs can you consume safely? Without grains, legumes, or nightshades..... what else is left? I also heard fruit was bad for those with gut issues.
The long and short of this, is it depends what is causing your gut issues.
If you are under-methylated, then beans lower absorption of MethylFolate, for many other issues they are helpful. I went semi-vegetarian some years ago and found my gut reacted badly when I first ate a lot of beans, but I was much more healthy once my gut got used to 'em.

Personally, I find my health responds much better when I eat plenty of firm beans (e.g. black eye beans) and other legumes. I know some people just can't tolerate them.

I tend to find if a dietary option is going to work better, I either know immediately, or at most within a few days.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Not familiar with it, sorry. I haven't been following the methylation threads so didn't even know what 5-MTHF was - had to do a search. A forum search for 'tetrahydrofolate meirleir' produces 6 hits. Maybe one of those will relate to what you want.
Treid the same search and got one hit LOL, c'est la view I guess.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Treid the same search and got one hit LOL, c'est la view I guess.

I just did it again and got 9, but that now includes these 3 messages. Are you using the search box on the top right? When I said 'forum search' I meant a search of all the forums rather than just this one, viz. unticking the box that says 'search this forum only'.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I just did it again and got 9, but that now includes these 3 messages. Are you using the search box on the top right? When I said 'forum search' I meant a search of all the forums rather than just this one, viz. unticking the box that says 'search this forum only'.
Tried one search, got the wrong stuff, then searched again.
It seems to have'searched my 'search results'.

I repeated from the home page and got the same result as you. Did not find the bit of research though sadly. will come back to it another time.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
NSAIDS cause leaky gut.even acetaminophen?

Looks like it from this very technical paper.

I would guess that occasional small doses would be quite safe. I take about 7 tablets a week that contain 500 mg acetaminophen (paracetamol) and 8 mg codeine phosphate, but I seem to tolerate it OK gut-wise. Maybe the codeine helps to offset the acetaminophen?
 

end

Messages
263
Firestorm, if you are looking for a proven cure then look in Heaven. If I knew what cured CFS I'd be rich right now- and healthy, and not on this forum, but winning the Nobel prize. My point is that fixing 'leaky gut' could be the key to remission in SOME people but it takes ALOT of time and effort. If you take away anything from my post it is that: it takes ALOT of time and effort. And, that one can't go by how one's stomach feels.

Leaky gut is caused by broken tight junctions in cells in the lining of the small intestine where nutrients are absorbed and the villi and Peyer's patch (immune system of the SI) are. The most common triggers are the foods I listed in a previous post. To heal this, it takes a lot of PROTEIN in a very easy to digest form. Bone broths are best. Until it is healed, solid food irritates it and more sensitivities can develop (esp. in severe cases). That is why, if this is a cure, it would not be so apparent. No one wants to go on a mostly liquid diet for who knows how long.


As for geographic tongue, like scoliosis, it is considered an idiopathic, mostly benign condition by the medical establishment- the same people who do not recognize CFS/ME. But I have observed a direct correlation with the state of my tongue with my health and diet. Scoliosis is also related to nutritional deficiencies- also not by the mainstream medical establishment but by alternative Dr's who have been successful at treating it. Yes I had to wear a brace then again in my late thirties when I started to have breathing problems. There are also exercises that help correct it. The ringworm did respond to treatment.

I think of the CFS geographical clusters that have appeared in people with no previous health problems. Here CFS looks like an infectious disease, probably not leaky gut. But we can't assume CFS is caused by the same thing in everyone. We don't all have the same history. We were not all robustly healthy people who suddenly came down sick.

In my case, it was more slow and gradual. I have always been weak. My mom told me when I was three I used to shake violently after eating a piece of toast (gluten) and kicks herself that she didn't pick up on the sensitivity then. I am posting this so that may be someone like me can benefit. But in the end one has to trust themselves and go with what they think will work for them. Don't waste your time and energy on healing leaky gut if you don't think it will help. But don't dismiss it either, if it works for someone else!

From the research that I have done, I think CFS is UNIVERSALLY caused 99% of the time by a virus and 90% of the time by an intestinal virus. And there is PLENTY of proof / evidence for that! Fixing leaky gut is how I have decided to fight that virus since Equilibrant and other herbal immune modulators either give me horrible panic attacks or have not been effective. And I don't like what I am hearing about the side effects in inefficacy of anti-viral drugs. But the proof is in the pudding. Will keep you posted.

@Adlyfrost

I could not agree more on multiple points. I have come to the same basic conclusion, as my CFS mainly having a viral and/or intestinal viral infection trigger and/or cause.

I think it's also interesting that you haven't been on the forum since late last year - may indicate your feeling better :)
 

kyzcreig

Senior Member
Messages
141
Location
Houston
@Hip

It sounds like you have trouble with similar foods/chemicals as myself. I had a lot of success when I cut out chloramines a few years ago. Generally I too do better on a paleo diet. How is your leaky gut progress coming?

In my own case I've found improving glutathione and downregulating ONOO to be helpful. You can read a bit more about that here:
http://sanjosefuncmed.com/intestinal-permeability-clinical-unwinding-leaky-gut/ (references at bottom)
 
Last edited:

Hip

Senior Member
Messages
17,858
I had a lot of success when I cut out chloramines a few years ago.

That interesting. What sort of improvements in symptoms did you noticed from removing chloramines from your drinking water? (You might want to answer this question on the chloramine thread).

In my case, cutting out chloramines significantly improved by IBS-D in a matter of days.
 

manna

Senior Member
Messages
392
healing leaky gut is probably my prime objective. i use diet and pulsors mainly. pretty much achieved it a couple of times but the vase wasn't set and it cracked. kind of makes still being ill a bit of a grater when i was so close. its not easy to do but, for me, the addition of sleeping with 3 pulsors on my body, 2 either side of my navel, steered the balance in my favour.

i'll share my diet::
day 1
quinoa (cooked as a porridge) plus boiled fennel for breakfast
baked sweet potatoe, coconut butter/oil, little salt and boiled fennel for lunch
chopped and boiled courgettes, raw sprouted mung beans and sprouted fenugreek with boiled and lightly grilled lamb liver

day 2
slightly sprouted amaranth (cooked as a porridge) and boiled celery
baked butternut squash, sea salt, ghee and boiled celery
boiled leeks, raw sprouted brown lentils and fenugreek and lamb liver (all organic)

one difficulty i find with this particular diet im doing is when the sweet pots or butternut squash are too starchy. if i overdo the starch its like being punched in the solar plexus for a day, not nice.

it might sound a little dull but it tastes great to me. it uses the hay combining diet; which is no concentrated proteins with concentrated starches, like fish and chips or rice and chicken. it helps with indigestion and acid reflux which can be caused by starches fermenting proteins. its gotta be organic i think, especially if its plain food. i have tried non-organic butternut squash and found it to be inedible and probably needing various condiments, oils and flavouring to mask that fact.

like myself, some folk may benefit from avoiding cruciferous veg. i would prefer to have a 3 day rotational diet but there isn't enough food i can handle to do that. still, i find i can move forward on the above even though i'm a liitle allergic to celery and leeks.

i drink pure water with no chloramines.

i've noted a decent improvement in saliva quality and flow since inclining my bed, plus a few other things digestion wise, so am hoping thats gonna make it easier.
 
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kyzcreig

Senior Member
Messages
141
Location
Houston
That interesting. What sort of improvements in symptoms did you noticed from removing chloramines from your drinking water? (You might want to answer this question on the chloramine thread).

In my case, cutting out chloramines significantly improved by IBS-D in a matter of days.
Tachycardia, headache and bloating. And then fatigue and poor sleep following the next day.
 

Hip

Senior Member
Messages
17,858
Tachycardia, headache and bloating. And then fatigue and poor sleep following the next day.

And how quickly did these symptoms resolve once you cut out chloramines from your drinking water?

In the case of my IBS-D, my diarrhea symptoms were significantly improved within two days of cutting out cloramines. So the results I experienced manifested quickly.
 

kyzcreig

Senior Member
Messages
141
Location
Houston
And how quickly did these symptoms resolve once you cut out chloramines from your drinking water?

In the case of my IBS-D, my diarrhea symptoms were significantly improved within two days of cutting out cloramines. So the results I experienced manifested quickly.
Some mix of those symptoms still occur depending on what I eat. But I noticed benefits immediately, within a day actually.
 
Messages
29
Hello all, I read this thread with heavy interest, thanks for all the valuable postings. I want to mention recourses which may be of help:

http://www.doctor-natasha.com/ The book was already mentioned here. This book describes very detailed the leaky gut phenomenon. It is the most detailed book on that matter I came across. Also it provides a detailed strategy to heal the leaky gut including recepies (e.g. meat stock/ bone broth). It was written for ADHD, dyslexiia and autism sufferers but if we follow the argumentation here that this is applicable for CFS/ME too there are many valuable explanations in it. For example why stomach acid is usually low, which brobiotics to take, why meat stock is so healthy (inc. recepies), what to avoid, which medication is recommended (not much), why leaky gut has severe consequences on brain+ allergies and immune system, why vegetarism might not work when having leaky gut. And most important she claims to have helped many patients, so it seems her recommended strategy really helps, but I have to warn you it is very detailed, time consuming, long (at least 2 years) and strict.

Since Palaeo was mentioned here also, which is similar to GAPS here is a quick comparison http://www.phoenixhelix.com/2013/01/18/comparison-of-3-healing-diets/
Also there is a more strict regime of Palaeo for autoimmun disorders http://autoimmune-paleo.com/

Two years ago I was on heavy Palaeo/GAPS without having known the books just because I could not tolerate vegetables (firbres, allergies) and I avoided any carbs (esp. gluten) due to allergies and intolerance. I had significant success with my ADHS symptoms and belly problems. At that time I also had a light CFS/ME issue which was slightly improved but was cured by something esle (fixing my jaw problems). Unfortunately now i am back to gut problems so I try to implement the diet again.

By the way since L-glutamine was mentioned here for gut cure. According to Amy Yasko people with neorological inflamation shall not take it because it increases glutamate levels. I know one at least one woman in a german forum who has severe CFS/ME who can not tolerate any L-glutamin.
 

end

Messages
263
Hello all, I read this thread with heavy interest, thanks for all the valuable postings. I want to mention recourses which may be of help:

http://www.doctor-natasha.com/ The book was already mentioned here. This book describes very detailed the leaky gut phenomenon. It is the most detailed book on that matter I came across. Also it provides a detailed strategy to heal the leaky gut including recepies (e.g. meat stock/ bone broth). It was written for ADHD, dyslexiia and autism sufferers but if we follow the argumentation here that this is applicable for CFS/ME too there are many valuable explanations in it. For example why stomach acid is usually low, which brobiotics to take, why meat stock is so healthy (inc. recepies), what to avoid, which medication is recommended (not much), why leaky gut has severe consequences on brain+ allergies and immune system, why vegetarism might not work when having leaky gut. And most important she claims to have helped many patients, so it seems her recommended strategy really helps, but I have to warn you it is very detailed, time consuming, long (at least 2 years) and strict.

Since Palaeo was mentioned here also, which is similar to GAPS here is a quick comparison http://www.phoenixhelix.com/2013/01/18/comparison-of-3-healing-diets/
Also there is a more strict regime of Palaeo for autoimmun disorders http://autoimmune-paleo.com/

Two years ago I was on heavy Palaeo/GAPS without having known the books just because I could not tolerate vegetables (firbres, allergies) and I avoided any carbs (esp. gluten) due to allergies and intolerance. I had significant success with my ADHS symptoms and belly problems. At that time I also had a light CFS/ME issue which was slightly improved but was cured by something esle (fixing my jaw problems). Unfortunately now i am back to gut problems so I try to implement the diet again.

By the way since L-glutamine was mentioned here for gut cure. According to Amy Yasko people with neorological inflamation shall not take it because it increases glutamate levels. I know one at least one woman in a german forum who has severe CFS/ME who can not tolerate any L-glutamin.

L Glutamine powder combines with stomach acid and forms 'Amines' which can be toxic to many of us. Enteric coating is needed and is what I have used.

L Glutamine powder causes a anxiety/neuro reaction in me.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
L-Glutamine is converted to Glutamate generating a little energy in the process - this is thought to be one of the causes of anxiety in ME patients.
As you rightly point out it also contains Ammonia this depletes BH4 needed for Neurotransmitter production.
 

Hip

Senior Member
Messages
17,858
By the way since L-glutamine was mentioned here for gut cure. According to Amy Yasko people with neorological inflamation shall not take it because it increases glutamate levels. I know one at least one woman in a german forum who has severe CFS/ME who can not tolerate any L-glutamin.

I had severe anxiety disorder as a result, I posit here, of chronic neuroinflammation causing high glutamate levels in the brain; however, taking high doses of L-glutamine (for example, 15 grams of glutamine powder daily) did not worsen my anxiety symptoms, and in fact if anything I found this high dose glutamine had a calming effect on my generalized anxiety disorder. This is probably because glutamine has anti-inflammatory effects, and thus may reduce brain inflammation, which in turn should reduce glutamate release in the brain. So I suggest that you don't exclude glutamate on theoretical grounds, because you might try and find it to be fine.

As for ammonia: "L-glutamine helps protect the body against ammonia toxicity by transporting ammonia, in the form of L-glutamine's amide group, from peripheral tissues to visceral organs, where it can be excreted as ammonium by the kidneys or converted to urea by the liver." Ref: here.