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The De Meirleir Experience

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

  1. GcMAF Australia

    GcMAF Australia Senior Member

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    Thanks beaverfury.
    there is a conference in Sydney on Tick/Lyme diseases
    http://www.karlmcmanusfoundation.org.au/
    This includes the CEO of Infectolab
    and the chief medical officer of Australia will be attending.
    Hopefully this will be a big leap forward.
    beaverfury and merylg like this.
  2. alexa

    alexa

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    I was diagnosed with Brucella by De Meirler and currently on antibiotics, not sure how this will affect my disease in the long run, but he told me that many of his patients had other pathogens
    GcMAF Australia likes this.
  3. GcMAF Australia

    GcMAF Australia Senior Member

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    I think Pubmed does not list all "journals/science papers" The whole science publication thing is not necessarily clear cut. and not all that is published is true. Even Nature has science that is fraudulent, at least one famous case in physical science.
  4. GcMAF Australia

    GcMAF Australia Senior Member

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    Thanks for your contributions.
    Obviously it is important to consider everything.
    This is what makes PR a great site.
    Bacteria/viruses etc have been around billions of years or so.
    They have been around the block a couple of times.
    Modern science has been around 20 years or so (OK maybe about100 if you include antibiotics)
    So we have a bit of catching up to do.
  5. GcMAF Australia

    GcMAF Australia Senior Member

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    How about a Sydney woman, breast cancer, 20 years ill with something undiagnosed. Diagnosed as having Sarcoidosis some time ago. 2 weeks ago tests came back as having Lyme. Of course the Australian Govt and Drs have "so called proof" that Lyme is not here. Tests
  6. Solstice

    Solstice

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    Am on antiobitics for bartonella myself at De Meirleir. And indeed loads of people seem to have pathogens.
  7. Firestormm

    Firestormm Guest

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    Has anyone read what Dr Jamie Deckoff-Jones had to say on her latest? Pertinent perhaps though only an opinion and one borne through bitter experience. I haven't accessed the Medscape article myself yet:

  8. madietodd

    madietodd Senior Member

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    My doctor ordered this "free test" from Advanced Lab Services, and I think it's a marketing scam. The test kit is free, but when you send it in you have to pay $595 by credit card. What's completely free is enrollment in some trial they're going to set up in the future. but they don't even have an enrollment questionnaire yet.

    It took a half hour on the phone for my doctor's office to get this information out of the lab people. They are being exceedingly not-transparent.

    Madie
    Firestormm likes this.
  9. snowathlete

    snowathlete

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    Not sure this is very relevant to the topic to be honest. Culturing Borrelia is nottiriously difficult and there are lots of people trying to do it. It's controversial in part because not everyone agrees on whether or not the current tests are reliable or not. The FDA do say that diagnosis should be clinical, not based on the existing FDA approved tests though which suggests the FDA don't consider them entirely reliable.

    Mayb this lab has a good test, maybe it doesn't, but eventually a culture test from someone will likely get FDa approved and be more reliable. But as we know too well, getting FdA approval is not quick, cheap, or straightforward. At the moment, if you buy a test that isnt FDA approved then perhaps you don't know what you're getting but that doesn't mean it's a scam. Though certainly i would be wary if like Madie you cant get some straight answers when you ask the lab. As I said in my article though De Meirleirs staff were very forthcoming with info when I asked for it, which sounds completely in contrast with this other lab selling this Borrelia test. I'm happy that labs are developing and making tests available though, else your options are even fewer.

    As for the bit about de meirleir at the end, I can understand the view, but he wasn't the only one to think XMRV was true was he! People wanted to buy tests for it before it was confirmed, and that was their choice. Personally, I didn't get one because I wasn't convinced there was enough evidence to justify the cost. People should probably be cautious in the same way regarding Lyme tests though I can understand with the lack of good alternatives, why people suspecting Borrelia might still decide, knowing the risks, to buy such a test despite the lack of FDA approval.
    SOC, Sushi, justy and 1 other person like this.
  10. GcMAF Australia

    GcMAF Australia Senior Member

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    From Infectolab in Germany
    fresh Borrelia infections in Germany in 2009:- around 800.000 new cases. So if around 10 % get chronic statistically, we find around 80.000 chronic Lyme cases just in Germany.
    see also http://www.hilysens.eu/
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    Don Lewis in Melbourne has 40 Lyme people, newly diagnosed.
    He thinks that the immune system with Lyme people was low before the Lyme set up shop.
    So he is taking a particular protocol. It is early days.
    (it seems many people made their own rash treatment descisions and end up herxing badly??)
  12. barbc56

    barbc56 Senior Member

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    Dr. Joseph James Burrascano, Jr is an ILAD's doctor and not a IDSA doctor, which would call into question the diagnostic criteria of Lyme disease used for this test as well as the recognition of chronic Lyme disease which does not have any scientific basis. ILAD's doctorst often prescribe dangerous long standing antibiotic treatment.
    http://www.nejm.org/doi/full/10.1056/NEJMoa1114362
    http://blogs.wsj.com/health/2012/03/27/doctors-clash-over-best-treatments-for-lyme-disease/

    Barb
    ETA. I thought we had a separate Lyme board but it looks like Lyme topics are under Other Health News and Research.
  13. GcMAF Australia

    GcMAF Australia Senior Member

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    This question of relapse versus new infection then seems to fit Dr Lewis's opinion that the immune system is not working properly before the tick bites. Also could be that there is some immune suppression by existing Lyme which allows another strain to infect??
  14. snowathlete

    snowathlete

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    How do we know that they weren't infected with multiple strains in a single event?
  15. barbc56

    barbc56 Senior Member

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    I think both of the above hypothesis are possibly and are certainly food for thought but need to look into these questions more thoroughly to see how probably they are. I need to find some sources and would appreciate any.

    Thanks in advance.
    Barb
  16. madietodd

    madietodd Senior Member

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    snowathlete, I thought this was a marketing scam, not that the test is bad. Sorry if I took this thread in the wrong direction.
  17. snowathlete

    snowathlete

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    madietodd, no worries, no need to appologise. I think the forum could do with a Lyme/Tickborne pathogens section too.
    justy likes this.
  18. Daffodil

    Daffodil Senior Member

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    hi all. i heard dr. demeirleir tests for 67 different types of bacteria. would it be possible to find out which ones so one may be able to have testing done in north america?

    someone implied to me that for severe neuro cases like mine, he might prefer IV antibiotics (if i test positive for some bacteria)...however, i will not be able to afford IV. i see that many of you were given antibiotics. did dr. demeirleir say anything about IV being better?

    thanks :)
    sue
  19. Daffodil

    Daffodil Senior Member

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    can someone tell me if they have been helped with the antibiotcs Dr. DeMeirleir prescribed? Is he prescribing for LPS / bacterial translocation from the gut, or is it always for Bartonella / Borellia? I wish I could talk to someone who knows this stuff! :-/
  20. snowathlete

    snowathlete

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    Is IV just to get more of the actual drug into the blood or is the drug used different? I don't know under what scenario DeMeirleir does this I'm afraid but hopefully someone else does and will reply.

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