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The De Meirleir Experience

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 28, 2013.

  1. Daffodil

    Daffodil Senior Member

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    thanks snow. i understand he does not do this often..the IV...but i have been reading and if one has neuro problems, IV is recommended - at least when it comes to lyme bacteria. perhaps he doesnt do it often because most of his patients are from afar
    xoxox
     
  2. liquid sky

    liquid sky Senior Member

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    IV antibiotics are stronger and more effective than when taken orally. They give a good swift kick to the bacteria and then the oral antibiotics can be used to continue therapy.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This is the approximate number of bacteria tested for in Redlabs Metagenomics gut test. This is an anaerobic test using DNA.

    Sushi
     
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  4. maryb

    maryb iherb code TAK122

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    I know people who tested positive for Lyme used to attend the Break-spear clinic daily for IV a/biotics and then hopefully go on to have the nurse via their GP carry it on at home, others used to live down near the clinic for months. The reason for IV a/biotics is it floods the blood immediately, faster acting because if doesn't have to go through the gut, so its far more effective at targeting bacteria, I don't think its necessarily different a/biotics to the oral ones, this is what they would do in a hospital setting.
    KdM's setup isn't conducive to treating with daily IV a/biotics I don't think? Unless someone has had them?
    He tests stool and blood for bacteria/parasites/viruses and then prescribes a/biotics, as far as I know he doesn't do long term a/virals maybe someone else knows differently, he prescribed 2 weeks of acyclovir for me, not a lot of good I think, that's the standard treatment in the UK:(
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    If you are staying in Brussels the set-up for IV abx is good at KDM's clinic, but if you live elsewhere you would have to convince a local doctor to administer them--I think that is the issue.

    Sushi
     
  6. maryb

    maryb iherb code TAK122

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    Yes thats what i meant Sushi - most of his patients travel from afar and couldn't afford to stay for the months it would take of IV a/biotics for say Lyme treatment. I know B/spear used to run a 7 day a week treatment, in that respect they were very good - if you had very very deep pockets full of cash......
     
  7. Jenny

    Jenny Senior Member

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    Yes, I had IV ceftriaxone 6 days a week for 12 weeks from the Breakspear for alleged Lyme and co-infections. Administered by a nurse at home; luckily my husband's BUPA health insurance covered it. It did nothing for me, good or bad. Nor did any other oral abx which I was on for 2 years or more.
     
  8. beaverfury

    beaverfury beaverfury

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    I wonder what the success rate is for treating lyme , or chronic (?)lyme with AB's? I mean, i wonder how many patients go into remission from a me/cfs- like state after treatment for lyme?

    It doesn't seem miraculously successful from what i've seen anecdotally on the web.
     
  9. Jenny

    Jenny Senior Member

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    When I had my treatment I was in contact with quite a lot of others also trying abx for alleged Lyme. One or two improved a bit but no-one recovered.
     
  10. wallace

    wallace

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    Yes but what is his success rate overall? How effective is he in getter people better?

    It seem to me focussing on the gut as well as chronic infections is a useful strategy to follow but what if lyme coinfections such some strains of Bartonella and Mycoplasma dont show up in any existing test.? That is the contention of herbalist Stephen Buhner in his new book Healing lyme coinfections.

    ME/cfs patients need to pay more attention to developing treatment strategies for chronic lyme or MSIDS as its called as it does affect us!!
     
  11. Nanou

    Nanou

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    Sorry I ve been looking but I haven t found the test de meirleir is doing? Are they the same as the burn out Klinik in Munich? Any answer is very much appreciated.
     
  12. Valentijn

    Valentijn Activity Level: 3

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  13. naoise

    naoise Senior Member

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    @snowathlete
    Hi I'm not sure if you are still here or seeing dr.KDM but I am due my test results from him in 4 weeks. At the moment I'm in a bad crash and was going to have a phone consult but have heard bad things. Did you have a phone consult and if so how was it? Thanks and hope you are doing well
     
  14. snowathlete

    snowathlete

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    Hi @naoise I have had phone consults with him before and they were just the same as in person really, in terms of getting what you need out of the appointment. The only thing I remember was that I had to phone up and the receptionist would often say he wasn't available at the appointed time, so to call back in 30 minutes, and that happened a few times making it a little difficult to actually get hold of him, but it was fine once I did. Just plan what questions you have for him.

    Good luck with your results.
     
  15. naoise

    naoise Senior Member

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    @snowathlete thats good to know as I was worried the phone consult wouldn't be as good. I'm looking forward to results..hoping for help on my gut issues!

    Has you helped you much?
     
  16. snowathlete

    snowathlete

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    Unfortunately, I had ten months of treatment with no improvement at all. Worse than that the antibiotics I was taking as part of the treatment caused me to develop ulcertative colitis, which I still have a couple of years on.
     
  17. naoise

    naoise Senior Member

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  18. sarah darwins

    sarah darwins Dauer Power

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    Hi @snowathlete — I keep meaning to ask: was there one particular antibiotic that you felt triggered the UC?
     
  19. snowathlete

    snowathlete

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    Hard to say. I was on Rifampin the whole time and alongside it Clarithromycin at first then Ketek, then back to Clarithromycin. There is an old paper about Rifampin causing ulcerative colitis in one patient that was reported, but then again I bet a bunch of different abx have this effect at times as they all destroy your gut flora. All I can say was it took several months of abx before my body broke and it started to recover instantly when I stopped taking them.
     
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  20. sarah darwins

    sarah darwins Dauer Power

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    Thanks. I had a feeling that "avoid X" would be too easy. It's never that easy!
     

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