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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. anniekim

    anniekim Senior Member

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    If gut problems are central to M.E/CFs, would treatment mean following restricted diets for the rest our lives, or just whilst we heal the gut? I ask because I'm hopeless at restricted diets and the thought of having to follow them for years is demoralising....
  2. ukme

    ukme Senior Member

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    That's what I said to myself about my daughter before we went to see KDM. Amazingly, all the tests proved otherwise. Strep, clostridium, numerous food intolerances and a severely ('top 10% of patients') leaky gut. Who knew?
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Annie, unfortunately, most of us come to the conclusion after years that we have to change our diets. It is hard, but once you commit to it, you get used to it.

    For certain treatments you might have to be on quite a strict diet for a while and later ease up. I have resigned myself that I will likely have to stay on a non-dairy, non-sugar, non gluten diet for the rest of my life. But I don't miss foods much anymore really--I found that I paid too much for eating things that didn't suit me.

    Sad, but true for many of us.

    Sushi
  4. Mya Symons

    Mya Symons Mya Symons

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    I just watched a youtube video kinda related to this. Please watch if you haven't. I think someone posted this on another thread. It is very interesting. <iframe title="YouTube video player" width="640" height="390" src="http://www.youtube.com/embed/Vn3hwgnfaW0" frameborder="0" allowfullscreen></iframe>

    I'm still having problems with a mysteriously inflammed sigmoid colon. I had a roter rooter test (colonoscopy) and it is not ulcerative colitis and Khron's disease usually doesn't affect the sigmoid colon. I'm getting really tired of diarrhea!!
  5. knackers323

    knackers323 Senior Member

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    hi ukme, did the treatment for what KDM found have any effect on your daughters condition?
  6. ukxmrv

    ukxmrv Senior Member

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    I've not found diets useful AnnieKim,

    Patients will probably stick to them if they have some good benefits. If not they will give up (as I largely have). There are so many treatments to try and things go in and out of fashion.

    Kept the things that were useful out of all the diets that I tried and discarded the rest. Also I notice that stomach symptoms can be different year to year so things that worked in the 80's may no long work now in my case.

    XMRV+
  7. SaraM

    SaraM Senior Member

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    ukme,
    I am eager to know what antibiotic drug KDM prescribed for Strep infection.Thanks.
  8. ukme

    ukme Senior Member

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    She took erythromycin and vancocin (not together!) I'm afraid I don't know what one was specifically for the strep , there was strep, staph and clostridium overgrowths.
  9. ukme

    ukme Senior Member

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    Yes I would say she improved from where she was at when she started the treatment 70-75% to 85-90%. I would love to say what has caused this, ie the fancy probiotic, the abx, the diet or a combination of everything but I have no idea, although the diet must have helped. However I have been in this long enough to recognise that her recovery is a very fragile thing. We go back to see him next week and I am hoping for repeat tests so we can see where the improvements have been. I am particularly anxious to get the CD14 redone, which came out extremely high last time.
    Hope that helps x
  10. redo

    redo Senior Member

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    I've been feeling aweful lately, so I haven't been able to reply in the threads I've created. I hope I'll get better soon, and get more active. Anyhow, here's some happy news. A person with MS got the treatment for the microbes in the gut (faecal transplatation). http://www.freakonomics.com/2011/03/04/freakonomics-radio-the-power-of-poop/

    And, I stumbled across this one. It says pretty much of the same as I wrote in the first post:
    A active infection (e.g. a retrovirus) leads to a active unbalance in the gut flora, which leads to a active dysregualtion of the immune system, which gets us symptomatic (of course simplified, but that's the short story).

    http://www.lapislight.com/wp/2010/08/06/changes-in-gut-flora-can-turn-on-autoimmune-genes/

    "these findings link host genotype and viral infection with a response to chemical challenge, resulting in Crohns-like symptoms, a virusplussusceptibility gene interaction. However, the story gets even more complicated, because this interaction was shown to depend not only on the host inflammatory cytokines TNF-? and interferon-?, but also on the gut microbiome"

    Different syndrome, but much of the same mechanisms discussed.
  11. SaveMe

    SaveMe *****

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    Redo, i think your onto something. I hear of people who took strong antibiotics (cipro and levaquin) who later develop CFS/ME. Are you an M.D by any chance?
  12. redo

    redo Senior Member

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  13. redo

    redo Senior Member

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  14. mellster

    mellster Marco

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    Hey Redo - I think the likelyhood that the gut plays an important role is extremly high. Mine did not start before the gut started going bad following a viral infection. And while everybody tells you it's good to be thin and not eat too much my personal experience is that I feel stronger the more I eat - if I can. I think that malabsorption/inflammation caused by the intruders/bad gut flora makes you weak. I also think you don't have to experience gut issues, for a while mine were very subtle and barely noticeable after the initial gastritis was gone. But who knows - interesting thread.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Mellster,

    I am a patient of Dr. De Meirleir and as you may know, he does extensive gut testing--even biopsies on some patients. I didn't have gut symptoms but the tests I just got back showed 2 infections--one very intense--and no measurable "good" bacteria, despite taking probiotics every day.

    Also, I was positive on the H2S urine test, indicating gut problems, and was very high on CD14, indicating (among other things) dysbiosis.

    As a great deal of our immune system is in the gut, these problems can't be ignored. De Meirleir puts together individual protocols to deal with what tests reveal.

    Sushi
  16. redo

    redo Senior Member

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    mellster.
    Here's a sentance I find striking about HIV:
    "The gut-associated lymphoid tissue (GALT) is the largest lymphoid organ infected by human immunodeficiency virus type 1 (HIV-1). It serves as a viral reservoir and host-pathogen interface in infection"

    I have been feeling awful lately. Numbness close to paralyzation in the feet have been one of the symptoms. As well as a havoc in my body in general. Hair loss, vision getting poorer rapidly. Brain foggier. I've been taking VSL#3 lately. I doubt VSL#3 is the reason for this worseing. But it might be.

    What I did yesterday was to begin on ciprobay and bifidobacterium (some other gut bacteria). And within the day I began improving. Or, should I say, the worsening began rolling back.

    I really do have a hard time finding other reasons for such a quick improvement than effects on gut bacteria. I mean; if ciprobay were to work on an infection in - let's say the brain. It would first have to be taken up into the plasma. It would have to reach a high plasma concentration (takes at least a day of taking pills I guess). And then it would have to reach the microbes, and do so for as long as one division (at least). Antibiotics work when the bacteria multiply... So, I am having a hard time imagining that it is that. If someone knows anythung else it might be, then please do post. All suggestions are very welcome.

    Reaching the gut is done instantly when taking abx. So improvement within the day is more likely. But then again, how is it with other gut infections. How quickly do people improve when getting abx for ulcers, for c. difficile or crohn's? Latter isn't proved to be a gut infection, but it's often treated with abx.

    It might be the bifidobacterium which have caused the improvement as well.
    "supplementing with Lactobacillus- and Bifidobacterium-containing yogurt (AB-yogurt) was shown to improve the rates of eradication of H. pylori in humans."
    that points even more in the direction of the gut.
  17. redo

    redo Senior Member

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    Lately I've been thinking what if we're dealing with a pathogen which may enter both the gut, and cause auto immunity there, but also enter the blood and cause havoc there as well...

    The last week I've been losing sensation in my feet, and it's crawling slowly upwards to my calves. What scares me is the development. What if it doesn't stop.

    When I see which results fecal transplants gave in the case report above, it makes me want to give it a shot. Nothing to lose. It's just hard to find a doctor willing to help.
  18. globalpilot

    globalpilot Senior Member

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    Glynis,
    I have had my lactic acid in urine tested through Great Plains lab. Would this rule out d-lacticacidosis ? I'm confused about the difference between lactate and d-lactate.

    Regards, GP


  19. Glynis Steele

    Glynis Steele Senior Member

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    Hi GP,

    From what I can gather, d-lactate needs to be specifically tested for, however if your total urinary lactate is high, this would warrant further investigation for d-lactate. D-lactate in urine and blood has a cirdaian rhythm, and builds up during the day, after each meal, so to test for high lactate, a late afternoon, or early evening test is best, if this were high, then d-lactate should be suspected. Morning lactate testing would not necessarily be a good way of investigating d-lactate.

    Hope this helps,

    Glynis x
  20. globalpilot

    globalpilot Senior Member

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    Thanks for the fast response! My urinary lactate levels (measured twice) were both normal. Would that rule out d-lacticacidosis ? if not, do you knwo where I could get this tested ?

    GP

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