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Best forum for Lyme?

Discussion in 'Lyme Disease and Co-Infections' started by switters, Nov 30, 2012.

  1. switters

    switters

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    I've suspected Lyme for many years, but my test results have been equivocal (borderline positive IgenX, low CD-57 count but negative on other tests). I decided to do the new Lyme culture assay from Advanced Labs, and I got the results this morning: positive.

    I made an appointment with a LLMD for January. In the meantime, I'd like to learn more. I've already read Cure Unknown, and just purchased a few more books. I have training in the sciences and I'm a health care practitioner myself, so I'm also interested in reading the original research.

    What is the best forum for Lyme? I don't see one here, but I know there's overlap between ME/CFS and Lyme so I thought this might be a good place to ask.
  2. GcMAF Australia

    GcMAF Australia Senior Member

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  3. kgg12003

    kgg12003

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    Ema likes this.
  4. Ema

    Ema Senior Member

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    I have Lyme and I haven't found a great forum for it honestly. I have found good discussion of Lyme on this site though as well as on the Addison's forum that I belong to. It's tough because some Lyme folks can get quite militant on the subject and I'm not sure that is always the most helpful.

    I also like this blog:
    http://www.lymemd.blogspot.com/

    And this book: The Lyme Disease Solution, Singleton

    Also, Insights into Lyme, http://www.lymebook.com/insights-book-connie

    Movie: Under Our Skin

    Ema
  5. LHCTom

    LHCTom

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    The Lyme situation is sad. I am now convinced Lyme is my primary problem. The testing is a disaster and treatment is even worse. Its very hard to get competent help. Most mainstream doctors don't know how to properly test for Lyme if you can convince them to do it. Then they do the CDC 2 tier and if you fail the ELISA, you have an impossible road ahead. If you are lucky enough to get a positive, they will give you inadequate treatment. If you go to a LLMD, they will bend the test to show a positive in many cases. Then they don't know how to treat it. The only hope is to study the research yourself. Find a doctor who doesn't have a stake in the Lyme Wars on either side and who is flexible with testing thoroughness and treatment. The militants on Lyme Forums will convince you that you have Lyme based on posted symptoms. It took me 2 years to sort it out. Under Our Skin is entertaining but is hardly balanced. It is good in that it shows that you need to advocate for yourself and don't buy into either side without lots of evidence. Dr. Burrascano's slides from Boston are about the best summary you will find:

    http://www.ilads.org/media/boston/slides/burrascano/burrascano.html
  6. GcMAF Australia

    GcMAF Australia Senior Member

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    Hi
    there are apparantly only 2 tests that work for lyme, these use cDNA to check for the presence of the bacteria
    best wishes
  7. LHCTom

    LHCTom

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    What do you mean by cDNA? PCR tests that utilize DNA are 30% sensitive at best. The ALS culture seems to be the best if the PCR option is used to verify and identify the Borrelia. Even with DNA, its still possible depending on the primers used, to miss some species. A positive culture that is confirmed with DNA is the best I've come across. In the US, mainstream doctors will typically only believe the CDC 2 tiered antibody test. Historically, a culture has been considered the gold standard in ID since growing the bacteria from ones blood is pretty bulletproof if its not contaminated and identified correctly.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Here is another lab that has an interesting method of testing: http://www.infectolab.de/index.php?id=51&L=1

    They have several modes of testing for Lyme and co-infections--you might find exploring their site interesting.

    Sushi
  9. GcMAF Australia

    GcMAF Australia Senior Member

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    LHCTom
    sorry i meant PCR
    in australia the tests are pretty poor (i realise you are not here) and Lyme doesnt even officially exist here.
    Although people are dying of it!
    I am not sure how easy it is to culture the bacteria?
    I see from your other posts that you have looked at a lot of the posts.
    Chronic Illness Recovery https://chronicillnessrecovery.org/
    Has had some success with Lyme and other things that are bacterial related
    I dont have personal experience with this
    AFCFS likes this.
  10. AFCFS

    AFCFS Senior Member

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    Even if not official, I had always found this site interesting - Lyme Disease Association of Australia. Seems clear, concise and to the point.


    This also seems a pretty good overview with an Australian perspective - Department of Medical Entomology: Lyme Disease, but seems to show a more conservative bend, stating "It has been reported from every continent (except Antarctica) although doubt remains as to whether it occurs in the southern hemisphere in general, and in Australia in particular."
    GcMAF Australia likes this.
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    yes thanks, good site
    interesting that over 200,000 Australians may be infected with Lyme disease
    AFCFS likes this.
  12. AFCFS

    AFCFS Senior Member

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    Not sure how these work, and not sure if you need to be in the US or not, but may want to try something like this :

    http://health.groups.yahoo.com/group/STATENAMELYME
    e.g. newyorklyme, except for South Carolina, which has a hyphen between the statename and lyme, i.e. southcarolina-lyme
  13. Lotus97

    Lotus97 Senior Member

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    GcMAF Australia likes this.
  14. Wayne

    Wayne Senior Member

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    Jenna's Lyme Blog

    (Not a forum, but lots of good articles and educational material)

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