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It's all in the Gut. Why we get ME/CFS

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by redo, Mar 26, 2011.

  1. redo

    redo Senior Member

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    ggingues. Please take that disussion up in PMs :Retro smile:
  2. leela

    leela Slow But Hopeful

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    Redo, I do appreciate your desire to keep this thread focused on the important topic you address throughout.
    However, I feel the need to reiterate that the gut begins at the lips and ends at the bottom ;)

    I believe it is important to be reminded of the alimentary canal in its entirety, as it is too easy to artificially segregate the different parts and systems of our bodies' miraculous cohesion. This thread itself is a fine example of the recognition of the complex balance and interdependence of the human body systems.

    Often when treating fungal infections of the gut, for instance, my doc would have me chew one of the three daily doses of nystatin, since the fungus "seeds" in the mouth. Similarly, it can become necessary to "snuff" some of it too, since infections in the sinus can end up in the stomach.

    Like I said, I hear you on staying on topic, but I also encourage everyone to include the oral cavity in their consideration of gut issues, and possibly the sinus as well.
    Sparrowhawk, sianrecovery and merylg like this.
  3. Mr. Cat

    Mr. Cat Senior Member

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    For the last 3-4 weeks, at the advice of my Chinese Medicine doctor, I have been on a rather strict alkaline diet (basically green vegetables, bananas, whey protein powder, avacados, bananas, nuts). Before, for several months, I experienced quite a lot of unexplained brain inflammation, and the diet has quieted this down quite nicely. When I have gone off this diet, and eat something I shouldn't, the brain inflammation returns, often within the hour. The acupuncturist suggested that the inflammation was due to some foods being attacked by an autoimmune response. Not sure how this connects specifically to bad bacteria, but when I eat the wrong thing, I certainly feel like I have some bad ones in there. Other CFS symptoms (low energy, sometimes a little foggy, minor brain inflammation after a long day) remain so far, but I am responding well to my second go-around on the non-folic acid B12 protocol.

    In 2005, my stomach problems were so bad that I pretty much couldn't eat anything without severe gut pain. I went on a very strict 3-month meat and vegetable diet, which knocked this out, and I was eventually able to eat fruit, which I hadn't been able to in years. I have been gluten and dairy free since then. Now the fruits and grains are cut out again, as is the meat this time (acidic). I wonder if the bad bacteria gets knocked out after a while when it doesn't get enough to eat.

    I have had CFS for 18 years, and digestive problems for the last 13 or so. I have had all sorts of symptoms with this illness, which usually stay a while, then morph into something else. It has been my experience that I will go through periods of either bad CFS symptoms or bad stomach troubles, but rarely bad cases of both (or bad cases of neither), which I find interesting. Has anyone else had this experience?
    merylg likes this.
  4. Gloria H

    Gloria H

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    Mr Cat

    You said "I have been on a rather strict alkaline diet (basically ..... whey protein powder.....).
    I have been gluten and dairy free....."

    Are you allowed whey on your dairy free diet? I'm on a casein free diet but whey is not allowed.

    Thot I'd mention that in case it was an oversight.

    Blessings to you!
  5. Jenny

    Jenny Senior Member

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    I find this interesting too Mr Cat - it's exactly what I experience - a kind of 'waterbed' effect. If I have gut problems I rarely have much pain - if I have pain my exhaustion is less severe - if I have anxiety and tachycardia I don't feel so shivery and cold etc etc.

    It seems as if while the body's resources are busy dealing with one thing, other areas are left open for attack.

    Jenny
  6. Mr. Cat

    Mr. Cat Senior Member

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    Gloria,

    You caught me! Well I guess I'm not on that strict of a dairy-free diet. :) No, for some reason, a little whey protein (or a little cottage cheese) doesn't seem to bother me. I have just learned to avoid the hard-hitting dairy like milk, cheese, and ice cream.
  7. RosieBee

    RosieBee

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    Its all in the gut; specific carbohydrate diet

    Hi Mr Cat,

    Have you looked at the Specific Carbohydrate Diet? Some people have trouble digesting certain complex starchy carbohydrates, especially those in grains. The incompletely digested carbohydrates can cause damage to the small intestine. You seem to have eliminated those types of foods and it may explain why you feel better.
  8. Gloria H

    Gloria H

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    I went on the Special Carbohydrate Diet for a few months after getting out of whack using a local Naturopath's yeast cleanse regimen. It helped me regain lost digestion ability. I still deviate from my casein free diet once in awhile by having a chunk of cheddar cheese. Guess it's easier to digest cuz the cheese is aged at least a month.

    Blessings to you!
  9. Zuriel

    Zuriel

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    What's a Special Carbohydrate Diet?

    Will someone please tell me what constitutes a Special Carbohydrate Diet? As an Asian, I consume rice almost daily. Don't know if this is the reason why I'm having severe gut issues. My esophagus & stomach seem to contract on top of extremely slow stomach emptying for the past 6 months. All this while, food fermentation must have released loads of toxins into my body, causing me to feel extremely unwell; brain firing, nauseous and unable to lie down or sleep at night. What other alternatives to replace rice, a grain which I agree, further damages my already leaky gut?

    Mr Cat- What is a non-folic acid B12 protocol? Is that the Methyl B 12 5000mg from Jarrow Formulas?

    Thanks.
  10. madietodd

    madietodd Senior Member

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    I think Gloria is referring to the Specific Carbohydrate Diet that Rosie mentions. If you google it, you'll get a lot of information. If you try the diet, start a thread about it and we'll talk more there.

    Good luck,

    Madie
  11. Gloria H

    Gloria H

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    Hi Zuriel
    madietodd is right, I meant Specific Carbohydrate Diet.

    Here are some links to info about Specific Carbohydrate Diet:
    http://www.scdiet.org/1about/default.html

    I'd encourage you to aim at that diet so you can eat food you'll be able to digest. You probably have some body signals that tell you how your digestion is working.

    For me, the main body signal that digestion wasn't working was flatulence [gas from lower bowel]. If I hadn't eaten beans, but had flatulence, I knew the food I had eaten didn't digest well. I took HCl [stomach acid] & enzymes for 30 yrs. That helped a bit. But what helped so much was quitting gluten [in many grains], casein [dairy protein] and cutting sugar way down 15 years ago. I didn't know about the Specific Carbohydrate Diet at that time. It was the Blood Type Diet that got me off gluten & casein 15 yr. ago. I knew my blood type was O. Then my digestion worked much better. Also I had trouble with head colds every year where I'd get fluid in my ears that would stay there for weeks after the cold left. I was hearing as if I was under water. That left and I've never had it back since.

    Blood Type Diet is here:
    http://www.dadamo.com/faq/smartfaq.cgi
    http://www.dadamo.com/typebase4/typeindexer.htm

    I still refer to Blood Type Diet sometimes when making decisions on what foods or supplements are apt to work best for me.

    Blessings to you!
  12. boomer

    boomer Senior Member

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    Autism and ME Gut Problems

    I understand that people with autism have the same gut issues as people with cfs and even parkinson's. I could be wrong on this - I just know they have gut issues but how similar I' m not that sure. I have also heard that many people with autism do not know the extent of the issues they have until they have been tested. I know in my relative's case, who has cfs/me, we were very surprised to find out the extent of the problems shown in the Diagnos-Tech, Inc. test. I am sure there must be a large population with cfs that aren't aware of the gut issues until they are tested, particularly in Canada where this test is not available. What i am wondering is whether people with autism receive health services for their gut issues in Canada. If so, and people with cfs have the same issues, is this one way to obtain health services from the system? Thanks.
  13. sensing progress

    sensing progress Senior Member

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    Here's something interesting I read the other day, particularly in light of the recent Rituximab story out of Norway and its possible implication of ME/CFS being an autoimmune disease:

    "Good glutathione recycling helps tame autoimmune diseases in another way. One thing I have found universal in all my autoimmune patients is poor gut integrity. They all suffer from some degree of leaky gut and repairing the gut is vital to the recovery process. Studies show glutathione may play an important role in gut barrier function and the prevention of intestinal inflammation."

    Source: http://drknews.com/glutathione-recycling-for-autoimmune-disease/
  14. Alistair

    Alistair

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    Wagga Wagga
    Analysis. ie analysing the fecal balances of bad bacterium to see if there are any of the nasty overgrowths of good or bad pathogens ie;

    Pseudomonas aeruginosa (IgA),
    Pseudomonas aeruginosa (IgM),
    Citrobacter koseri (IgA),
    Citrobacter koseri (IgM),
    Hafnia alvei (IgA),
    Hafnia alvei (IgM),
    Klebsiella pneumoniae subsp. pneumonia (IgA),
    Klebsiella pneumoniae subsp. pneumonia (IgM),
    Morganella morganii subsp. morganii (IgA),
    Morganella morganii subsp. morganii (IgM),
    Pseudomonas putida (IgA),
    Pseudomonas putida (IgM).

    Gram negative bacterium (anything that thrives on sugar), the bad bacterium which are needed in a particular balance gets out of balance more quickly in a ME/CFS hence why sugar and white breads , white highly refined carbohydrates that easily convert to sugars are advisable to avoid.
    http://en.wikipedia.org/wiki/Pathophysiology_of_chronic_fatigue_syn...
    CFS patients reportedly have higher rates of Chlamydia pneumoniae infection than controls.[46][49] The possible influence of mycoplasma is disputed, with reports for[50][51][52][53] and against.[54] A review concludes the role of mycoplasma as causal agents, cofactors, or opportunistic infections is not clear.[55]Gram-negative enterobacteria and increased intestinal permeability may be associated with severity of CFS symptoms.[56] Associations of multiple bacterial and/or viral co-infections (mycoplasma, Chlamydia, HHV-6) with increased severity of signs and symptoms have also been proposed.[49]
    End Wikipedia quoat
    As a result, particularly the bad bacteria can go out of balance very quickly because our bodies have a reduced ability to modulate the bad bacteria balance due the reduced natural killer cell activity, altered cytokine expression, chronic lymphocyte activation, hence incresed infections and also hence increase in GI pain, bloating, wind and IBS- d or c due more rapid bad bacterium growth rates. (Men are often IBS-d, Women are often IBS-c. When this occurs we are far more susceptable to triggering Immune intollerance levels of either Salicylates and or Amines and or Glutamates as well as migraines, crashes are more frequant and our general immune activity is higher or much higher thus limiting our bodys ability to ward of infection, infections are therefore more common, and we are more susceptable to a relapse with a multitude of symptoms (bush fires all over the place to try and control). A very exhausting scenario.
    sianrecovery likes this.
  15. leela

    leela Slow But Hopeful

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    Waverunner and redo like this.
  16. redo

    redo Senior Member

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    Why it's all in the gut 2.0, this is a sketch of the revised hypothesis

    Please do comment this newest version of the hypothesis! Look for parts where I have overlooked something, or am wrong. Here goes:

    I think the best way to push forward is to assemble a hypothesis and see if it's waterproof. No matter what lies behind ME, it must explain these three vital questions.

    Three big questions in ME
    Why can so different things such as EBV or vaccines, food poisoning or the flu trigger the disease?
    How is the disease transmitted?
    Why has it been increasing so much in prevalence in the Western world?


    While I don't sit with all the answers yet, I will offer my explanation. The short story of theory is this:
    There is a latent (yet to be identified) virus -> We get a temporary immune suppression ("trigger") -> the virus becomes active -> autoinflammation/autoimmunity becomes rampant -> ME symptoms arises

    In this article I will do my best to explain the three big questions and the domino chain leading to the disease.

    Why can so different things trigger ME? This is the most puzzling question. What dose EBV and a vaccine have in common? Or a giardia infection and a heavy flu? There are many more triggers as well, but the only common nominator I have found is that they temporary suppress the immune system. But that's that. A giardia and a vaccine aren't likely to cause the same type of immune suppression - unless. Unless there is a middle link, something they both can trigger, and something which than causes the symptoms. The prime suspect as to what can go undetected is RNA viruses.

    How is it transmitted? If a RNA virus is to cause disease in the patient group, it must come from somewhere. And what could that be? Given how there are no prime suspects, I have come to the conclusion that to the question as to how it's transmitted, the answer is really that it isn't transmitted. We're born with it. It's called endogenous RNA viruses and all humans are born with them. The reason why we all have them, but they don't do harm to humans is because the body has, throughout evolution, adapted, and learned to silence them. Of the endogenous RNA viruses, it might be a known one, or it is a yet to be identified one.

    Why is it increasing so very much in prevalence in the Western world? It has increased in prevalence the last century. One could say, naaahh, that's just better diagnostics. But that's just a small piece of the story. We would surely know about it if 0.2-0.4% of all farmers (and people) lied in bed unable to tolerate sunlight, or unable to do daily tasks because of ME symptoms some hundred years ago. Better diagnostics doesn't explain it. Only a fraction of it. We have been seeing a steep increase in ME cases, and it's still growing in prevalence. And, it barely exists in the poorest countries in the world. Both in Africa and Asia there are large regions where you can't find ME sufferers. Why is that? One of the biggest differences is this reason; and it's also the same reason why it's been growing so much in prevalence in the west: What we put inside our 30 feet long intestinal tract. There are 20 trillion cells in a human body. There are 200 trillion cells in the intestinal tract. Microbes which defend and define us. Microbes which may be a reason for disease if they're the wrong ones. Gut Bacteria Lend a Molecular Hand to Viruses, and aids in making viruses pathogenic. We know for certain that if we eat a western diet, we have much bigger chances for getting overgrowth of the wrong bacteria in the mouth, leading to cavities. But, what happens if we get overgrowth of the wrong bacteria further down? There are thousands and thousands more bacteria in the gut than the mouth. Can we do that without consequences?

    Research is actually pointing towards a new gut flora being responsible for giving RNA viruses the possibility to act out. What happens is that the new flora creates a hole in the immune system, which specifically paves way for RNA viruses. Now, we're in a situation where endogenous RNA viruses, which the body has learned to quench throughout evolution, suddenly can become active. All it needs to activate is a trigger, and in some cases it doesn't even need that.

    When the disease is triggered it has very close resemblance to how the human immunodefiency virus acts the first months: First in ME there is a period with tender lymph nodes, general malaise and a flu like feeling which doesn't go away, and than it progresses on to the later stages month by month. Aside from the obvious, a big difference is that there is no latency period after it's first begun.

    So to sum it up: We are looking at a latent endogenous RNA virus (which most, if not all humans have), it gets triggered by an immune suppressing event and the RNA virus than becomes active, the activation of the RNA virus leads to autoinflammation/autoimmunity which in turn leads to the ME symptoms.

    Why can severe stress be a trigger for the disease? Among other things, severe stress can change the gut flora for the worse, and thereby "sweep the rug" under the immune system for a period of time. That period of time might be enough for the endogenous RV to go from latent to active.

    Why do we get PEM? The PEM, a very common symptom in ME, is mediated though methylation, glutathione and levels of autoinflammatory cytokines. The malaise and general worsening ME patients get after exercise is unique from ME, and the reason why these three things happen is either because an active RNA virus goes direcely at it, and makes it happen. Or it's because gut problems does not only lead to activating of RNA viruses, but it also leads to these kinds of problems. At the moment I am leading towards to first of those.

    Why does our symptoms get worse from concentrating? An important thing which happens when we concentrate is that the body releases dopamine and nordadrenaline. With ME patients we have problems breaking down those catecholamines, which means they just keep building up and up and it's making us worse and worse. Taking a long time out from concentrating (hours or days) is what's needed to get back to square one again. The reason for these problems is changes in the gut flora.

    Why is it we get somewhat better with probiotics, antibiotics, antivirals and Rituximab? (they are such different things!)

    With probiotics, what we do is alleviate the gut problems which have risen. What happens is that if we are able to change the gut flora for the better, the body is more able to handle the RNA virus, as very much of immune functioning lies in the gut. The reason why some of the patients get worse so quickly of sugar (within days) is because it temporary changes the gut flora allowing for the wrong bacteria to get a stronger hold.

    With antibiotics, there's more a mixed bag of results. I've heard many stories of people getting worse from certain antibiotics, and what they do is suppress helpful bacteria in the gut, and allows the harmful bacteria to get a stronger hold. But, with other antibiotics, it could really go after the wrong bacteria, and be very effective at it, doing much more good than harm. What happens than is that patient feels better, because the immune system functions better as a result of less of the wrong bacteria in the 200 trillion cell thing which is our gut content. And on top of that some antibiotics may act as anti inflammatory drugs regardless of the gut pathway of action.

    With (normal) antivirals, many have immune modulating properties (such as also Montoya have proposed is the mechanism of action) and it alleviates symptoms. It might do it via going after a somewhat active co-virus, or directly by immune modulation.

    With Rituximab and other immune modulators you go more directly at the immune dysfunction caused by the RNA virus. Autoantibodies or cytokines could very well be it. Wiping out the pathogenic ones, could work wonders on the patients.

    Why do more women than men get ME? The endogenous RNA virus model would be a parallel to the HERV-W model in MS. While much is uncertain about the gender bias in ME, it seems to affect more women than men. MS affects women two to three times more often than men. The reason for this is the same as what's behind the HERV-W (RNA virus) hypothesis of MS. The genders respond differently, and much of the reason if the differences in the immune system.

    Note. The links in the text are meant to be sources where one could read more about the general idea of a topic. More like a interesting to read list, than actual sources for evidence.

    My health is really poor at the time, so I haven't put in all the links which is supposed to be there. And this is a first draft of the revised endogenous (instead of exogenous) retrovirus theory. Let me know what you think? Are there any holes? Are there anything supporting the theory not mentioned? Is there something which crashes with the theory?
    Adlyfrost and sianrecovery like this.
  17. Enid

    Enid Senior Member

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    Very interesting redo - I can very much agree with your thinking here. The strange thing in my case was the expression of latent viruses when at my worst. Symptoms included polio, hepatitis, and measles/chickenpox coming out. What triggers suppression of the immune system initially I still wonder about but no scientist.
  18. redo

    redo Senior Member

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    Thank you for the feedback Enid. If there is some ambiguous sentences in there I'd like to know. As for the theory, I added "yet to be identified" to the hypothesis. It might be a known RNA virus, or one which isn't known to man, but it isn't identified yet. Might be HERV-W as well as it's high in prevalence in so very different things such as MS and psychiatric diseases.

    As for the theory: There are two immune suppressing events. At first everything is hunky dory fine, we're living with a latent endogenous RNA virus, the changes in gut flora allows for the virus to become active if triggered, we have a temporary immune suppressing event (EBV, Vaccine, giardia, flu etc) which triggers the RNA virus, the RNA virus than becomes the main problem, and as RNA viruses often does, it causes persisting problems with the immune system. The endogenous RNA virus could activate without a specific trigger as well (in many cases it does). And when the RNA virus is active and one is at ones worst, it's not unlikely that it could make other co-infections more problematic (such as what you mentioned).
    Adlyfrost likes this.
  19. redo

    redo Senior Member

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    I am thinking about naming the theory the GUTTEA theory of ME. Because the theory goes like: GUT -> Trigger -> Endogenous RV -> Autoinflammation/autoimmunity. Does that sound alright? Any other thoughts on names?

    Maybe the GISTRA theory would be better. Gut > Immune Suppressive Trigger > endogenous Rna virus > Autoimmunity/autoinflammation. Or the GIRA theory (using only the first letter in "immune suppressive trigger")

    Reminder to self. Put stuff from post #253 #273 into the post above. Browse through my dropbox for word files for possible reasons behind the syndrome (and also look for more of the 'big questions' about the syndrome). Change the order so that gut problems is a prerequisite to getting the endogenous RV activated. But, it's also acts as a factor for maintaining the RV at a active level, and making the gut flora worse can make the endogenous RV infection worse.

    I am thinking about making the theory into a video. It would most likely be a really simple video with a drawing of the sketch above, zooming on the various parts when they are spoken about in the video, and adding a voiceover from fiverr. Now that youtube can display videos with higher resolution it's possible to make something which would be alright in fullscreen.
    Adlyfrost likes this.
  20. redo

    redo Senior Member

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    I have found something which doesn't fit with the revised theory. If almost everyone living in a western society gets changed gut flora because of the diet (and people are for the most part healthy, not getting ME) than it has to be more to it when it comes to the hypothesis of we getting symptomatic (in getting worse while concentrating) because of changes in the gut flora. I'll have to make some adjustments for that.

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