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

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Hip, Nov 29, 2011.

  1. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I know I should be taking digestive enzymes, have tried them in the past, they clearly helped, but too much gave me an upset leaky gut. They are in that 4R protocol for leaky gut. Uggh just now I have intestinal inflammation... a sneaky, slight, ever-present nuisance... I think dairy kefir is definetely not helping.

    I am gonna get a food intolerance test for 200 foods and go from there. And gluten and dairy are out, I became weak for some months but is a no brainer.

    BTW:

    Here is the story of someone that got diagnosed with CFS and cured via curing his leaky gut (among a host of other things lol):

    http://curezone.com/forums/fm.asp?i=15993#i
    http://curezone.com/forums/am.asp?i=67508
    Sparrowhawk likes this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    You can't rely on isolated forum posts. They could be written by people who are kidding themselves, want to mislead, or have vested interests in manufacturers (if they include reference to branded products).

    I pay little attention to these, but do pay attention to scientific studies (as long as they are not on non-human animals) and to multiple reports of experience on forums like this.

    There are links to scientific studies in this thread. They are not complete and convincing evidence on their own, but quite strong when combined, and are in keeping with other research papers on the same subjects (intestinal permeability and autoimmunity).
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Well yeah I do the same MeSci, but knowing that intestinal permeability is a well characterized phenomena in the medical field (at least in studies and such) and the effects of this disorder are well established as you know then accounts of people curing it as part of their journey curing CFS make sense to me.

    And this one isnt an isolated forum post, if you click the poster you will see he has thousands of posts reaching 4 months ago and even a website devoted to media where he has a bio in which he talks about how he cured.
  4. Sparrowhawk

    Sparrowhawk Senior Member

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    Beyond, thanks for posting that article. I tend to feel each of our journeys, should nothing major be discovered by research, may wind up being as convoluted and individual as the path he outlined. I've tried a ton of things but right now can barely tolerate any supplements no matter how "good" they may be for me. So I try to learn from each success, take notes, occasionally try one thing that may make sense...but I'm pretty sure the complete path of what worked for someone else is not likely to work for me. Too many variables.
    Beyond likes this.
  5. August59

    August59 Daughters High School Graduation

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    What is the scoop on this "4R" that is being talked about?
  6. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I agree. Everyone is probably different, although some cases might be very similar. For example he says probiotics gave him a very bad response, itchy reddish face and what not, and I dont notice anything from them. I took the mentioned Sach. Boulardii in this thread without benefits, often in very large doses (I wanted to end that bottle! lol) It is a matter of finding what you need... It took him a couple of years to get well... he was sick for 15 years.

    August59 , the 4R´s are the basic program that most of health practicioners have posted on the net as being the most succesful for leaky gut.
  7. August59

    August59 Daughters High School Graduation

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    In the context that it was being used I was under the impression that there was going to be a forthcoming product based on that protocol? I was also taking that it was insinuating that the date of availability is very close?

    Thank you for the quick reply and the useful information. Have a great day!
  8. Adlyfrost

    Adlyfrost Senior Member

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    Whole chicken bone broths- if you cook the whole chicken long enough the fat gets emulsified. I add zucchini, onions and celery and (a little carrots just for flavor) to it for vitamins and calories. That stuff could sustain me (as long as I put the veggies in) thru the winter. Also as a treat I make apple fiber chocolate: 4 heaping TBSP's in 4 TBSP's of coconut oil, 1 TBSP chocolate, water to make a syrupy consistency. At the end I drizzle tons of flax oil over it. Also my family gives me the chicken skin and steak grissel. Avocados are also good satisfyers and weight sustainers- I like mine with fresh garlic, lemon and olive oil and fresh onion. Surprisingly this diet has caused me to lose zero weight- it has been amazing.
    end and Beyond like this.
  9. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I dont know how beneficial it might be but chicken broth really tastes fantastic.
  10. mermaid

    mermaid Senior Member

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    I have just read all of this interesting thread. I am treating my gut as if it is leaky, though I don't have a specific diagnosis for that. I have been labelled with IBS, then gastritis, and more recently SIBO and had some tests done along the way.

    Whatever the label, I have certainly had gut symptoms for a very long time, say about 40 yrs +

    While I think it is a really good idea to follow the 4R protocol and I am doing this, there is one thing that bothers me.....if you have had this leakiness for a long time, then it has possibly caused autoimmune illness. I have or have had a number of autoimmune conditions over the last 30 odd years. Some of those are really not going to be fully reversible I would think after so long...yes, one can put them into remission maybe but maybe the damage is done,and even to mend this leakiness will not heal everything. e.g. I have been hypothyroid for 18 yrs and therefore it seems unlikely that will change.

    Also, I am no scientist, so cannot express this in the right language, but presumably the kind of damage that can happen in the body once one thing goes awry can lead to a cascade of other things, and maybe in time major organs get affected?

    That seems to be the problem with ME/CFS for some people, and also the older you get the harder it is to put it all right - it's not just fix one thing and all will be well. I had idiopathic thrombocytopenic purpura in pregnancy nearly 30 yrs ago (autoimmune), and this causes low platelets. I have noticed that every time I have a blood test that though I am in range as far as the doctor is concerned, I am always at the low end of the scale, or just below it now, so clearly all is not well there either.

    That said, I would still rather be doing this now though than not at all, as I feel sure if I had just carried on as I was, then worse would be in store.
    justy and Beyond like this.
  11. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    In fact mermaid, why Maes and others stopped pursuing the leaky gut thing after having an impressive 50% of improvement or remission success with 40 patients? They discovered that those that had the illness longer were the ones not responding or responding poorly to the gut treatment. Remember, who cured completely of CFS with the leaky gut treatment by Maes initially that made them try a larger trial with adults? A girl of less than 14 years old. They do indeed argue in scientific terms the same as you, permament damage, complex pathological cascade, autoimmunity... However normalizing the gut is the first step, even if you are a chronic case there will be some improvement.

    At the end of the day, Maes stopped pursuing the leaky gut thing because it wasn´t enough for the complexity of chronic illness. These doctors are looking for a definite cure I guess and treatment that only helps a segment of sufferers seems to not have interest. However is still of use healing our guts, even while it is not "the cure". For me, is just an step. Curing is like peeling an onion, or more like rebuilding that onion - that is onion is us.
    Last edited: Nov 14, 2013
    mermaid likes this.
  12. mermaid

    mermaid Senior Member

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    Ah that is interesting. Yes, I do agree definitely that it is worth pursuing. When I began sorting the gut around 4 yrs ago and then worsened after a relapse, I had the most horrible insistent pain, that was my worst symptom. It used to affect my mind as well as my stomach, almost as if there was a direct link with the brain, which I believe indeed there is!

    I went to acupuncture for 18 mths which was probably 12 mths too long, but the practitoner was a darling and half my age, and used to listen to me whingeing on (need a smiley here...), as it was the stomach was the thing he couldn't get a handle on at all or really help in any way.

    Only changing my diet drastically has done this and though it was a struggle mentally, I have done it and feel better without the pain. I have just had a little setback but I think it's mostly adrenal related, so once I fix that then maybe I can live with the rest. Maybe at the age of 61 I have to settle for what I have and maybe at the age of 91 I will be healthier than all other 91 yr olds!
    MeSci likes this.
  13. Crux

    Crux Senior Member

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    Hi mermaid;

    I agree that the program may not cure everyone, but, it's possibly helpful.
    I think also that leaky gut can be one cause of autoimmunity, as well as genetics.
    It is much harder as one ages, isn't it!
    I thought I might bring up to you that B12 deficiency is associated with gut issues, and lowered platelets, in case it might help.
    mermaid likes this.
  14. mermaid

    mermaid Senior Member

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    Yes, I am assuming that leaky gut probably did cause some of my autoimmune issues, having had the gut problems so long. I suspect that if I had known what I know now, and had cut gluten early on then things might be different.

    Thank you re the B12 issues. I have a hunch that maybe I was deficient around 10 yrs ago, though no one was testing me then. Not sure if they would have tested me in pregnancy, but would hope so if I had the low platelet issue.

    As for now......I did inject about 3 yrs ago for 6 mths, and have my levels checked now. I noticed a drop recently, though it could be that I am absorbing better due to improved stomach, but just in case I am injecting a small amount again. I get the Methyl sort now, but 3 yrs ago couldn't get it so easily and was using another kind, forget the name....

    Actually I am reading up about B12 in a classic book at the moment, and have become a B12 bore, telling all and sundry to get their levels checked!
    justy likes this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I am 100% sure that there is. There is the vagus nerve for example, which connects the 'gut brain' to the 'head brain'. I mentioned to a GP decades ago that when I had discomfort and bloating in the bowel I also could not think properly. Being an idiot, the GP said that there could not be a connection. Same GP who said that my hypertension did not have a cause and nor did most hypertension!
    Beyond likes this.
  16. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Nothing has a cause MeSci... in fact everything has! (Maybe God/Source does not have a cause??)
    GP´s are often so stupid.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It's possible that you may not be able to fix everything when you have been ill for a long time (as have I), but something is better than nothing, eh?

    My improvements include:
    • Cleared sinuses
    • Cleared dermatitis
    • Reduced anxiety
    • Better sleep
    • Increased resilience to exertion (i.e. much less PEM)
    • Cessation of bouts of desperate hunger between meals, which used to be followed by nausea if I didn't eat something quickly
    • Loss of excess fat
    • Increased muscle strength and general flexibility (possibly due to one or more of my supplements)

    and of course improved bowel function!

    Would I go back to my previous carb-heavy diet even though I have had to give up some favourite foods?

    No way! I prefer improved health to short-lived pleasures! :)
    aimossy and Beyond like this.
  18. mermaid

    mermaid Senior Member

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    That's a good list MeSci! Definitely well worth pursuing, and I really am not knocking it - honestly. Just wish it would fix a bit more for me right now!

    Luckily I sleep well so no change there....
    Have lost a stone in weight - so very welcome.
    Lost the horrid stomach pain mostly - great! This led to bad thoughts, but curiously often I had more energy.
    Resilience to exertion is worse currently - but there may well be other causes.
    Blood pressure/temp at the moment lower and too low - may be other causes, and going to post about this.....
    Bowel function - still not good - but known other causes in my case.
  19. mermaid

    mermaid Senior Member

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    At least my GP is humble enough to admit she doesn't have the answer for most things. Not that this is particularly encouraging to be told that you know more about the thyroid than she does though.

    Thanks for the reminder re the vagus nerve - I knew there was one at least.
    Beyond likes this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Elsewhere you have said that you had acid reflux but are taking betaine HCl. If so, this could be a problem. Acid reflux is usually treated with an alkali, not more acid. Maybe worth trying? It would perhaps be best to get your acid levels checked, although I went down the alkali (sodium bicarbonate) route without any checks and it seems to have helped. It is perhaps significant that I am vegan, so may not need as much stomach acid as omnivores.

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