Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Opinions on de Meirlier

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by neweimear, Sep 15, 2017.

  1. neweimear

    neweimear Senior Member

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    Hi
    I am just back from seeing de Meirlier. I was shocked at my results, he said I had extremely leaky gut and that I was intolerant to almost every food. I have no major digestive issues but since getting ME, my bowel habits are a bit erratic, fluctuating between constipation and loose bowel movements. He also said I had some neurotoxins going into my brain, that really scared me as I am an emotional wreck since becoming ill. I also stress or become angry very quickly.
    He said to continue eating as normal as I can't give up everything. He will post my results and prescription in 3 weeks. I dont want to go on an antiobiotic....does he prescribe antibiotics to everyone?
    If anyone received similar results, did his protocol help? I didnt realise my digestive system was such a mess.
    I am also sceptical, I am not sure what to make of him as a doctor. I appreciate any feedback
     
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  2. A.B.

    A.B. Senior Member

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    Yes. In his world, almost everyone with ME/CFS needs antibiotics. I got a lot worse on his treatment and he didn't care. His approach isn't based on good science and he seems to have a history of experimenting on patients and making empty promises about having discovered the cause of ME/CFs or a good treatment. My advice is to avoid him.
     
  3. neweimear

    neweimear Senior Member

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    I just found it hard to warm to him, it was very impersonal. I am not sure what to think. I will wait for prescription and see. Did he include any dietary advice?
     
    MEMum likes this.
  4. neweimear

    neweimear Senior Member

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    I am also sorry you got worse on his treatment. Gosh that is so disappointing after all the money spent.
     
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  5. PinkPanda

    PinkPanda thebiochemcorner.com

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    He prescribed the antibiotic for leaky gut treatment? I haven't heard of that before.
    Usually antibiotics rather worsen the gut because they wipe out all your gut bacteria, also your good ones.

    The leaky gut treatment I've heard of consists of probiotics and other supportive supplements like Slippery Elm or digestive enzymes. The tests I did on food intolerances also showed, to what degree I was intolerant to what foods, so I could judge better what foods I was the most intolerant to.

    Often elimination diet of the intolerant food is part of leaky gut treatment, but I agree, I wouldn't start leaving out almost every food. If your body doesn't get the nutrients it needs from foods anymore because you are leaving out so much that could possibly make you worse, too.
    I would wait to see if the test shows, which foods you are the most intolerant to and then maybe leave out a few foods and see if you notice improvement.
     
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  6. Valentijn

    Valentijn WE ARE KINA

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    No, not everyone goes on antibiotics. It depends on whether infections are found. The antibiotics used to treat gut problems don't get absorbed into the blood stream, so side effects should be limited to the GI tract.
     
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  7. bakhel

    bakhel

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    Do you know which specific tests he took?
     
  8. jstash

    jstash

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    I'd suggest that you might be opening a bit of a Pandora's box if asking for opinions on KDM.

    Some people love him, others claim he basically ruined them and made their health permanently worse. It's a bit difficult to get the nuance in that, and get some actual helpful data.

    I guess taking all the anecdotes with a pinch of salt would be wise and then weighing it with your own intuition.
     
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Someone will probably call me out for this, but I think he`s a total crook.
     
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  10. snowathlete

    snowathlete

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    I was also told that I had lots of intolerance. I was not given abx for my gut but was told it wasn't working great. At that point I had the same gut function as you. I went on abx for probable lyme and probable bartonella. The abx made me feel much worse, I was told it was a herx and wanted to believe it. After a while the abx induced ulcerative colitis, which I am now stuck with. Needless to say my gut is in a much worse shape now than before I saw KDM. If you take abx, or anything else for that matter, be aware they can make your gut worse, not everyone sees KDM and are made better, although it seems some people are.

    I decided in the end that the intolerance were largely not present, things like milk and wheat that the test said I reacted badly to were actually fine. I did develop lots of new intolerance related to the colitis mind you so can no longer tolerate things like preservatives whereas before I was fine with them. Like others, I suggest an elimination diet is a more accurate way of finding what your body doesn't like.

    I used to express a positive opinion about KDM by the way, before I got harmed by the treatment so I am not someone who has always had a negative story to tell. I am also not saying he is a bad doctor or that you shouldn't have treatment, I am simply urging caution, because I don't think KDM is as cautious as he should be.
     
    Last edited: Sep 15, 2017
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  11. neweimear

    neweimear Senior Member

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    Well, why??? Can you back up your statement?
     
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  12. Marc_NL

    Marc_NL .

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    If you're looking for statistics you won't find them (like with any other doctor).
    Looking at anecdotes it seems that most patients improve, from a little to a lot.
    I am somewhere in between after one year of treatment. I have substantial improvement after years of getting worse.
    Some don't improve and a small percentage get (much) worse.
    The above is my impression.

    As far as I can see the people that have gotten much worse got worse early on and continued treatment with the idea that it's a herx (like @snowathlete above here) and should eventually get better. So I think it's important to monitor how you feel yourself and if it makes you worse really reconsider if you should continue because he will probably not tell you to stop. Try to educate yourself on the antibiotics and potential side effects.

    I'm glad I never had to make that decision since I didn't have any side effects from the drugs he prescribed me.
     
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  13. keenly

    keenly

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    Great man, but nobody has all the answers.

    I think Martin Pall and Dr Cheney know much more, but the gut is always involved.
     
    LivingwithFibro likes this.
  14. keenly

    keenly

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    Yet he charges less than any other CFS doctor for his time.

    Name calling helps nobody.
     
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  15. snowathlete

    snowathlete

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    I got a "herx" early, but it was several months before I started passing blood and later still that this was diagnosed as UC induced by the abx. KDM failed to pick up on that and was all for me carrying on. It was me who stopped the abx not KDM. It seemed a common problem for most patients that they got supposed herx reactions to abx, and the general wisdom was that it was a good sign and to carry on and you'd get better. I think in hindsight that was a misguided view. I agree with Mark that you have to listen to your body and not other people.

    I think as well that too many people are treated with abx when there is not enough evidence of an infection. If I had definitely tested positive for an infection that would have been a much more reasonable idea. It's not clear to me if the OP has tested positive for infections or not.
     
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  16. Marc_NL

    Marc_NL .

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    That's more or less what I was trying to say.
    I don't say it's right but it's something you better be aware of before starting the treatment.

    It's hard to find out if this counts for "most patients", this is not my impression.
     
  17. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Expected this type of reply.

    What you should ask yourselves is - Can Merleir back up his treatment with well conducted studies, not just loosely based hypotheses?
     
    ghosalb likes this.
  18. snowathlete

    snowathlete

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    That's the problem though isn't it, both your statements and mine about the proportions of patients experiences are best guesses based on what we've heard and experienced ourselves. We don't know for sure what proportion of people are harmed, we don't know what proportion of people truly get better, or what proportion it does nothing for.

    All I can see is that I informed myself at the time as well as I could, I joined lots of different groups and was in contact with several dozen past and current patients privately as well, and virtually everyone told me they too had had herx to the abx, that it was a good sign, and that if I just carried on taking them I'd turn the corner, that it would take maybe 3 months, 6 months, then 7, then 8, then 9 etc.
     
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  19. Joh

    Joh Inactivist

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    @neweimear, I've not really anything helpful to add, sorry. Just that I believe I can relate a little to your feeling of being torn, although I haven't been to KDM yet. I'm still undecided. He's the only specialist in Europe, so it's basically either him or no specialist care.

    I had 15 years of no treatment and getting severe, so I'm desperate to at least try a treatment for a change and not just spend more decades waiting. On the other hand I'm also skeptical. If I had the choice I'd rather visit OMI or other places. But such a long journey is out of the question.

    I also can't afford several specialists/treatments. So I think about the hypothetical possibility, that I spend my last savings on KDM (or someone else) now, and suddenly there might be a biomarker/testing/a promising treatment available somewhere else in the world in the next years and I can't afford it anymore. On the other hand I might wait and save money until it's too late. So it's an endless loop of not being able to decide.
    Tried to ring Himmunitas a few weeks ago to make an appointment but they were on summer vacation. So I went back to thinking and being torn again.

    @Jesse2233, just in case you're comfortable to write about it. I think you didn't mention your treatment recommendations from KDM? I was very curious, after you wrote about your first visit to him. After you've been to several specialists (KDM, OMI, Chia) I'd be interested if their recommendations fundamentally differed? As I said, just if you feel comfortable. And I understand if someone doesn't want to be drawn into a discussion about KDM. Thanks!
     
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  20. neweimear

    neweimear Senior Member

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    Joh, would you not keep your money and possibly try rituximab? We will know alot from phase 3 trials and we know already that it gives improvement to a subset. I was too hasty running off to KDM, I am sick a year but severe and I feel I am slipping recently. Desperation will make us try anything.
     
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