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Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

Discussion in 'Lyme Disease and Co-Infections' started by Helen, Apr 15, 2015.

  1. Helen

    Helen Senior Member

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    I can´t find any earlier post about this radioshow from October, 2014. Please tell me if I am wrong and this should be deleted.

    The radioshow was produced by Katina Makris in Lyme Light Radio, with the title Lyme disease in Belgium. The first part is an interview with a Belgian Lyme patient and from about 31:20 you will hear Dr. De Meirleir talk about ME and Lyme, their connections, research, future a.o.

    I would recommend listening, as there is much food for thoughts and hope whether you are diagnosed with Lyme or not.

    http://www.thedrpatshow.com/shows/mak-141001-van-dromme.mp3
     
    Last edited: Apr 16, 2015
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  2. Sushi

    Sushi Senior Member Albuquerque

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    It is here somewhere. I can't look at the moment, but try a Google Site Search.

    Sushi
     
  3. Helen

    Helen Senior Member

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    Thanks Sushi, I did , but I will delete the post.
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    I just took a quick look and don't see a dedicated thread on it, so let's leave it here unless someone finds the earlier post and bumps it up.

    Sushi
     
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  5. Folk

    Folk Senior Member

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    So... That's the first time I Dr. Meirleir says with all the words CFS/ME is actually late stage lyme.
    Am I right?
     
  6. Helen

    Helen Senior Member

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    Hi @Folk, I wouldn´t say that, rather that he, among other findings, has found that ME and Lyme patients have the same abnormal lab results compared to healthy controls.
     
    Last edited: Apr 16, 2015
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  7. shannah

    shannah Senior Member

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  8. duncan

    duncan Senior Member

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    To borrow from David Hume, "It fell stillborn from the press."
     
  9. msf

    msf Senior Member

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    Shannah, I pointed out some of the problems with the Natelson study in another thread, I think it was the one about the latest Lipkin study.

    Wow, did anyone one else get a chill when KDM says ´It´s exactly the same thing?´ I mean, I think we all knew this is how he views it, but it´s still something to hear him say it in plain English.
     
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  10. Helen

    Helen Senior Member

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    I did. That is why I posted the interview ;).
     
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  11. msf

    msf Senior Member

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    Haha, good point! Well, thanks for doing so.
     
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  12. Folk

    Folk Senior Member

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    Yep totally I did too... I don't know if this is good or bad.
    At least he's putting his foot down.

    Now only time will tell if he's correct I guess.
     
  13. msf

    msf Senior Member

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    In my opinion, the only real question is what proportion of people who have been diagnosed with ME actually have chronic Lyme? The two doctors who have seen the most ME patients (with the most success, or at least the best reputations) are Lerner in America and De Meirleir in Europe. The first finds Lyme in a proportion of his patients, the second now finds it in the majority of his patients. Allowing for the difficulties in Lyme testing, it is likely that a higher proportion of Lerner´s patients have Lyme, and that some of them are undiagnosed. The real proportion will also be affected by environment, so Lyme will make up more of the burden of illness in those areas particularly affected by Lyme.

    The other remaining question, as I see it, is whether the remaining cases are caused by another infection or from some purely auto-immune process. From De Meirleir´s necessarily simplistic outline, it would seem possible that other gram-negative bacteria, such as Yersinia, could cause similar symptoms. It is also likely that those who are more severely affected by Mono are also represented in most patient populations, along with patients with more glamourous but less common diseases such as Q fever, Ross River fever (present in the Dubbo cohort), and West Nile Virus.
     
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  14. Folk

    Folk Senior Member

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    But there's more I guess.

    First is ok, De Meirleir is finding Lyme in most of his patients but how accurate are the tests? If they were 100% wouldn't Lerner ( for example) be using too, and finding simmilar %?

    Second is the other treatments bringing results. Like Dr. Chias and his gut enterovirus findings + treatment and specially Rituximab, I don't understand, is there anyway Rituximab could be effective if the target is Lyme?
     
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  15. justy

    justy Donate Advocate Demonstrate

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    Thanks Helen, have given this a good listen this time around. At approx. 48 minutes he talks about a soon to be, large study showing the same abnormalities in cytokines and other immune parameters in M.E/Lyme patients versus healthy matched controls - he says its a large study and being written up. He states that from just looking at these 4 parameters in the blood he can identify an M.E/Lyme patient from a healthy person.

    Does anyone know what happened to this study?
     
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  16. justy

    justy Donate Advocate Demonstrate

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    He states ' there is negligence here' - the same thing he told me a few weeks ago when I asked him if I had made my daughter ill - he feels patients have been very seriously let down by the medical profession. It's nice to hear him sticking up for patients in this way.
     
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  17. shannah

    shannah Senior Member

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    Wonder if there's any distinguishing between long term patients and under 3 years as in Lipkin/Horning study.
     
  18. justy

    justy Donate Advocate Demonstrate

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    That would be interesting to see - but I shouldn't think KDM sees a lot of patients who are less than 3 years ill, most who go to him have been though many Drs, many diagnoses before going to him.
     
  19. msf

    msf Senior Member

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    Folk, your first question can basically summed up as, why are different doctors using different Lyme tests? The answer is because there is no standard test in the absence of a gold standard (culture) for testing. However, it is likely and logical that Lyme is underdiagnosed rather than overdiagnosed using the two-tier test.

    Re: Rituximab, you´ll notice that KDM mentions that it ´ME/Chronic Lyme´is no longer a purely infectious disease, i.e. there is likely to be an auto-immune component too. There was a thread posted in the Lyme forum yesterday about the potential benefits of Dexamethasone in Lyme, another drug (like Rituximab) that is used in Rheumatoid Arthritis, an auto-immune condition.
     
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  20. duncan

    duncan Senior Member

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    msf, the thing about that Tulane study is that it is recommending steroidal treatment in acute neuroborreliosis cases. That's really striking because the general consensus - I think found in Burrascano's guidelines? - is to avoid steroids. It's one of the big no-no's.

    So, this study would suggest that there are times steroids are not necessarily contra-indicated, and when used in conjunction with abx therapy, may hush an aroused immune system after spirochetes have been eradicated.

    Of course, they only looked at rhesus monkeys, and only up to 14 weeks. I would be interested to know what would have happened at four months out, or six months - would the bacterial load have returned with a vengeance?

    I would have kept checking for at least two years.
     
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