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Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by A.B., Sep 18, 2017.

  1. A.B.

    A.B. Senior Member

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    At the time of this post, Kenny de Meirleir diagnoses one or multiple bacterial infections in nearly every ME/CFS patient he sees and has been doing so for several years. This conclusion is based on my time as member of a forum for patients of de Meirleir where I had the chance to see the diagnoses and treatment plans of other patients.

    These diagnoses are in stark contrast to published research which shows no evidence of such high prevalence of bacterial infections in ME/CFS patients.

    I have repeatedly asked supporters of de Meirleir to explain this massive discrepancy but have so far not gotten any real answers. I am hoping to finally get some answers in this thread.

    If you are a patient of de Meirleir and knew about this discrepancy, why did you choose to trust him?

    Edit: some people are challenging the idea that de Meirleir diagnoses one or multiple bacterial infections in nearly every ME/CFS patient. I reviewed 30 cases in the aforementioned forum and in 21 cases the diagnosis was explicitly a bacterial infection (almost always lyme disease). In 7 cases the patients did not disclose the diagnosis but where prescribed antibiotics, in 1 case EBV was diagnosed, and 1 case no diagnosis was made since the patient already had a lyme disease diagnosis from a different doctor.
     
    Last edited: Sep 18, 2017
  2. Bansaw

    Bansaw Senior Member

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    How do you know a majority of his patients are diagnosed with bacterial infections when you don't have access to his patient data? It could be the case that many of his patients have no bacterial issue but simply don't post on this forum.

    It could also be the case that the people going to see him already know that they have been compromised with a bacterial infection. I myself knew that I caught a bacterial infection in Africa and I chose to see him based on the fact that he is a leading doctor in this specific area.
     
  3. JES

    JES Senior Member

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    Do we really need another thread when almost everything about KDM has been said in this one? I suppose he bases his diagnosis of bacterial infection on lab results, otherwise it would be very wrong. I have not seen KDM, but I have got antibiotic prescriptions from half a dozen of private doctors in my country. My Lyme and Mycoplasma titers were on the threshold of being positive, which was enough to convince them, one even gave me half a year of continuous antibiotic course. You might as well toss a coin with my lab results, but that hasn't stopped doctors from prescribing me antibiotics, which did nothing.
     
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  4. unicorn7

    unicorn7

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    What bacterial infections are you refering to? Lyme and co? Or do you mean the gut problems?

    I do get specific antibiotics (rifaximine) for SIBO. This is not absorbed, so it only works locally in the gut. I can find a lot of scientific research about this treatment for SIBO and IBS, it did work very well for my gut problems.
    It gave me a half year reduction of symptoms as well.
     
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  5. Valentijn

    Valentijn Senior Member

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    I disagree with your observation, so I don't believe an explanation is required. People repeating accusations over and over doesn't make them true.
     
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  6. Daffodil

    Daffodil Senior Member

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    @A.B. I chose to trust him because I was almost dead and had seen several other specialists and tried many other medications (many toxic).

    And boy am I glad I did.

    And it isn't true that there is no research showing the possibility that bacterial infections are players in autoimmune disease; Garth Nicholson and others have been saying this for years.

    ps @JES even if you were on the right abx, 1/2 year wouldn't do much. I had to wait 3 1/2 years before I saw results. I think it depends how long you were sick.
     
  7. keenly

    keenly Senior Member

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    UK
    Nearly every patient has bacterial infections that is why.
     
  8. A.B.

    A.B. Senior Member

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    I collected data on this and it shows that 28 of 30 patients in aforementioned forum were diagnosed with a bacterial infection (usually lyme) or prescribed antibiotic treatment consistent with a diagnosis of bacterial infection. One was diagnosed with EBV. Another patient was diagnosed with lyme disease by a different doctor.

    If you wish to argue that antibiotic therapy was merely treatment of bacterial overgrowth with rifaximin, know that this applied only to one case. In the other cases where no diagnosis was explicitly mentioned the treatment approach appeared to be most consistent with treatment of a bacterial infection.

    You are of course free to argue that this is merely a highly unrepresentative sample and that it's all a misunderstanding.
     
    Last edited: Sep 18, 2017
  9. Daffodil

    Daffodil Senior Member

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    what difference does it make? no one in the world is treating CFS according to a proven cause because there IS no proven cause. so the choices are: wait if you can tolerate it or try whatever you can, if you cannot tolerate it.
     
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  10. A.B.

    A.B. Senior Member

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    Either Kenny de Meirleir has made an important discovery or he is making major mistakes that are hurting patients. This is an important question.
     
    Last edited: Sep 18, 2017
  11. unicorn7

    unicorn7

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    I think a lot of people go to KDM, because they already suspect Lyme. I actually asked to be tested on lyme and especially q-fever, because my contact with q-fever was very high. I didn't have q-fever, was positive for lyme, but not active, so no treatment for lyme. I am being treated for my gut.
     
  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Nor does not answering them make them false..
     
  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    It`s a curious question, which i wonder myself, so let`s stick to topic. What`s his basis for diagnosing infection? ( I genuinly wonder, I`m not trying to start a war between patients of his and non-patients)
     
  14. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I think so too.. What you often end up with is patients being diagnosed with both ME and Lyme. And so they get confused, trying suggested treatments for both ailments. Certainly Lyme is a condition, but I dont think the tests at this moment are accurate enough to say "Ah you got lyme, not ME".
     
    Orla likes this.
  15. A.B.

    A.B. Senior Member

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    Lab tests from a private companies, primarily Redlabs and in some cases Arminlabs. I believe @Jonathan Edwards has expressed the view that these companies are unreliable.
     
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  16. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Yeah i remember that thread, this was his immediate response to a thread wondering bout his stance

    "
    The view I express is the view of what appear to be sensible specialists in the field who are just ordinary people going about their work with no axes to grind. And the whole set up with these commercial labs rings danger bells for me anyway. There are times when particular individuals in the medical world are ahead of the game and the standard wisdom is out of date. But in my experience you can tell when people are ahead of the game because they have everything openly documented and in general make no special claims, simply give their case. The controversial Lyme testing labs in no way fit that picture to me. There are a whole lot of other reasons why I take the view I do but they are best kept confidential.

    I am not suggesting anybody takes my opinion as carrying weight, simply that other opinions may be ill-founded and that it is sensible to consult with specialists who have no financial interest in the matter.
    "
     
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  17. Daffodil

    Daffodil Senior Member

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    well he has made an important discovery. his patients have said that on this board many times.

    i am not trying to offend anyone...there are no concrete reasons to do things that are considered experimental unless, as i said before, you have nothing to lose.

    KDM's treatment is pretty safe, relatively speaking. before him, i took HIV Meds and vistide..both of those have caused permanent damage for me. i am sure you can say that the docs who gave me those drugs were doing something dangerous too, but they knew i was going to take my life so i guess they decided to help.

    i am just not sure why you are making these arguments..no one is forcing you to do these treatments. what do you care if desperate people take antibiotics? he isnt the only doctor giving them for this and other mystery illnesses.

    if anything, you should be happy that there are doctors out there giving people some hope.
     
    justy likes this.
  18. A.B.

    A.B. Senior Member

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    I am such desperate patient and have been harmed by Kenny de Meirleir's treatment and have now heard from a number of other patients that have stated that de Meirleir has damaged their health. I do not believe that supporters of this approach are adequately informing other patients about the risks and how little evidence there actually is to justify such treatment. False hope is given to vulnerable patients. A particularly worrying aspect is the secrecy and unwillingness to engage in a real debate. I have also noticed the de Meirleir reguarly claims he has made some breakthrough but it never materializes.

    What important discovery has he made?
     
    Last edited: Sep 18, 2017
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  19. Daffodil

    Daffodil Senior Member

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    @A.B. May i ask what happened to you as a result of the treatment? I do know of someone who developed Crohns or something? from the antibiotics....but thats all i have heard.

    I didnt mean to come off as cultish...it is healthy to question...and i didnt know you were adversely affected. i am sorry to hear that
     
    erin likes this.
  20. A.B.

    A.B. Senior Member

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    Something sufficiently serious to break the emotional attachment and desire to believe that can blind patients.
     

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