Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Interesting first appointment with Dr. KDM

Discussion in 'ME/CFS Doctors' started by SamB, Mar 27, 2017.

  1. Daffodil

    Daffodil Senior Member

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    i dont think he has found the cause but rather, how to treat the inflammation. I dont think they know where the inflammation is actually coming from..maybe HERV, maybe some kind of bacteria, maybe something else.
     
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  2. Theodore

    Theodore Senior Member

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    I think he sees the Bacteroidetes (From the MSA test) the wrong type. He likes it when it's less than 10%.
     
  3. ChrisD

    ChrisD Senior Member

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    Isn't that to do with bacteria such as Citrobacter Freundii in the Gut?
     
  4. knackers323

    knackers323 Senior Member

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    What makes you think that dd, are you a patient of his?
     
  5. Daffodil

    Daffodil Senior Member

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  6. knackers323

    knackers323 Senior Member

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    Ready when you are kenny
     
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  7. LivingwithFibro

    LivingwithFibro Lily

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    I came here to post the same thing. I just came out of hibernation because it's July... waiting
     
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  8. Folk

    Folk Senior Member

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    Kenny also stated more than a year ago he has found 95% of ME patients actually had Lyme. So that would be the cause, for him of course. (there's a thread about it somewhere)
    So he either changed to another cause or that's old news and unproven.

    I had an appt with him and I watched several patients over the years being treated by him with no success or small baby steps towards something they think (or want to believe) it's good. I wouldn't hold my breath to anything he says.

    And to his patients that say "some of what he tried with me helped, other stuff didn't". I assure you I can treat you with the same success or more and I'm no doctor.
     
  9. adelheid55

    adelheid55 Senior Member

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    So, I wasn't diagnosed with Lyme and have recovered to a point I had not expected. And this in only one year.I have been ill for more than 30! years. I can't imagine you could have done this.:)
    KDM is no magician and he is not Jesus but I think he is the best one in Europe to find out what you are suffering from and be able to treat it.
    I know not every patient of his is getting better so much as I did but every bit that helps you is a step forward. Babysteps are still steps. No offence!
     
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  10. msf

    msf Senior Member

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    Are you familiar with the terms ´proximate cause´ and ´ultimate cause?´

    Re: KDM´s methods, they have helped me go from mainly housebound to a point where I feel I am ready to study full-time. And your claim about being able to treat people with the same success as KDM is supposed to be a joke, right? One not even based on personal experience if you only had an appointment with him.
     
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  11. Helen

    Helen Senior Member

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    I´m a patient of KDM and he never claimed that (my) Lyme infection is the cause of my ME. I´m convinced his focus is in other areas. Time will tell.
     
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  12. Folk

    Folk Senior Member

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    Not really a joke and I'm happy for you but I've seen patients and patients taking 3-4 years of abx and having nothing but the supposed herx. And people that got way worse, or even another chronic illnesses from too much abx.

    There's an interview here in the forum if you don't mind searching where he states that. 95% of PWME actually have Lyme.
    No trying to diss, just pointing the facts.
     
  13. msf

    msf Senior Member

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    There is no doctor anywhere in the world who hasn´t seen patients get worse. I don´t think you´ve been very scientific in forming your view of KDM, and as I said, yours isn´t even based on personal experience (put another way, if we were in court I would be a witness to the event, and your testimony would just be hearsay). It´s basically your reaction to hearing some negative stories - I could do the same Rituximab and those doctors who prescribe it, but I try to be a bit more objective than that.
     
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  14. Helen

    Helen Senior Member

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    I don´t doubt your quotation, but the fact that many ME-patients also have Lyme infections doesn´t confirm that ME is caused by Lyme (KDM explained the connection to me in quite another way). I think this distinction is important.
     
  15. Daffodil

    Daffodil Senior Member

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    @Folk i know some who gave up cuz it took too long. he told me that because i have been sick so long, i would see significant improvements at the 4 year mark. i saw enough at 3 1/2 yrs to convince me i was on the right track
     
  16. adelheid55

    adelheid55 Senior Member

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  17. Folk

    Folk Senior Member

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    Ok I don't mean to fight with you or anyone. I hope the best for all. But I wouldn't recomend a loved one to see KDM. I had an appt for +-10 minutes where he didn't even touched me till I asked for it, and he just touched me to show a place where I would have pain when we talked about stomachache (I have pain all over my body, not that hard to find). He asked half questions and we all know how complex this illness is.
    I had an 2-3 hour appt with dr Kaufman to cover it all... And yes I recovered a lot with his treatment in one year. So I don't regret making that choice.
    I don't remember where you cand find this but KDM also said all his patients under 30 should expect 95% improvement from his treatment and under 50 at least 75% (I think thats the number). Perhaps you'll find on youtube. I just went to find the radio where he states 95% of patients have Lyme so I'm not on the mood for another search hehe :)
    On the other hand if you take Rituximab you'll be aware of the risks.

    https://www.thedrpatshow.com/shows/mak-141001-van-dromme.mp3
    Here he says it all. He said it is caused by Lyme and that is found in 95% of the cases.
    He starts around 31:00.
     
  18. msf

    msf Senior Member

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    I´m glad that Kauffman has helped you; you will of course be aware that Kauffman also diagnoses Lyme in his ME patients (which I applaud him for). I think the thing with KDM is that he does mainly treat based on tests, which has its advantages and disadvantages, but is quite a common thing in today´s medicine, and besides, he doesn´t have 2-3 hours to give to each patient; Kauffman has other doctors in his practice (or did), whilst KDM doesn´t even have other doctors in Europe (unless you count the Charite in Berlin, or perhaps the place offering Rituximab in Norway).
     
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  19. Helen

    Helen Senior Member

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    I have listened to this interview many times before, and even posted the link on the forum, but I hear other things than you do. I don´t want to argue for its owns sake, but I think we should get this correct not to quote KDM wrongly. I hear KDM tell that he thinks ME and late stage Lyme/post Lyme (and even other types of infections that has been ongoing for a long time) are the same, with identical abnormalities in a genetically predisposed group (in his opinion).
     
    Last edited: Jul 25, 2017
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  20. unicorn7

    unicorn7

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    I don't want to pretend to know what's going on in KDM's head, but as I understood it:
    I was mild-positive for the elispot, but all the other test were not pointing to an active Lyme infection. He called it a hit-and-run, post lyme. The lyme came along and helped me get sick, but is not present anymore.

    My interpretation is that certain infections are known for "helping" to get your immune system and gut out of order. There's post-lyme, post-Q-fever, post-viral etc etc. I can imagine that it's more important to treat the cascade of problems that this causes, than to know which infections caused the problem in the first place. Unless it's still an active infection.
     
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