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Borrelia – In the Lymelight

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 8, 2013.

  1. justy

    justy Senior Member

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    Did he say this to you? I believe what he actually says is that he finds chronic bacterial infections is 95% of his patients. My results came back with chronic Chlamydia pneumonia, which fits with symptoms, chronic Bartonella, which also makes sense to me given history and he thinks I have Lyme, although my LTT test was negative, my immune function is very poor, which can affect testing (more false negatives). It is very possible that I was bitten by a tic, given my immune dysfunction, co infections, high levels of inflammatory cytokines and history etc
    Hanna, merylg, Sushi and 1 other person like this.
  2. Gijs

    Gijs Senior Member

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    He said it in public. He thinks you have lyme? But the test are negative. Is the Meirleir paranormal :) A few years ago he thought that his patiënts had XMRV. I thought he was a professor and scientist.
    GcMAF Australia likes this.
  3. justy

    justy Senior Member

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    Did you read my above post? Testing is notoriously difficult - especially in immune-compromised patients.
    Diagnosis is often clinical. I had a lot of opportunity to be bitten many years ago - plus a horsefly bite 6 years ago, just before I got really ill.
    merylg and Valentijn like this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Could you point us to an exact quotation from him?

    Sushi
  5. GcMAF Australia

    GcMAF Australia Senior Member

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    I would prefer that you did not use the word bullshit.
    Maybe you could do a bit of research before commenting on things.
    many of the doctors have been mentioned in my posts if you would care to read them.
    In the Australian Lyme groups 4 or 5 people have died from Lyme disease in 1-2 years.
    A couple have committed suicide.
    Also maybe contact a few Lyme Doctors.
    I shall mention some here-
    Dr Lewis Melbourne
    Dr Durham Perth
    Dr Klinger
    Dr Macdonald
    I have an email from a third regarding misdiagnosis.
    The tests are done by the latest advanced tests which includes cDNA assays and in many cases DNA sequencing.

    I contact the Lyme researchers and practitioners through a internet site where many of the major people who have dealt with Lyme for many years. Their knowledge goes back to around the time when the town of Lyme had the out- break.

    I am a researcher with many many years of experience. this includes many years of bacteriology, virology, cancer etc etc and leading DNA sequence work.

    I have worked in a lab where Nobel prize winning research was carried out (Warren and Marshall- H. pylori)
    If you know of a scientist with better knowledge I would like to met him/her.

    Best wishes to all
    GcMAF
    Last edited: Jul 28, 2014
  6. GcMAF Australia

    GcMAF Australia Senior Member

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    As people know the Lyme tests are notoriuosly difficult,
    This has finally been recognised by the CDC arm of the US government who find that
    • 300,000 US people are diagnosed with Lyme each year
    and
    • The US Lyme tests that are described by CDC are only 50% accurate
    I know that about 40% tests in one Australian group are coming back positive.
    Whole families can be infected and devasted by Lyme

    Regards
    GcMaf
    merylg likes this.
  7. GcMAF Australia

    GcMAF Australia Senior Member

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    who said it is not a valid test??
    best gcmaf
    Last edited: Jul 28, 2014
    Valentijn likes this.
  8. GcMAF Australia

    GcMAF Australia Senior Member

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    "We never had, in the last 5 years, a single Alzheimer Disease, Lou Gehrig's Disease / ALS, Parkinson's Disease, Multiple Sclerosis / MS patient who did not test positive for Borrelia Burgdorferi (Lyme Disease bacteria), not a single one!" - Dr. Dietrich Klinghardt MD
    Regards Dr Klinghart
  9. GcMAF Australia

    GcMAF Australia Senior Member

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  10. Lou

    Lou Senior Member

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    southeast US
    GcMAF Australia likes this.
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    Lyme tests are quite problematic , especially the older ones.
    and there are many false negatives.
    Symptoms can be indicative of co-infections,
    and many use clinical diagnosis as a guideline>
    Best
    Gcmaf
    I have some information and some contacts.
    GcMaf yogurt is being used in Melbourne
    I have a contact in the UK , but will need to get the email address, as i am travelling for about 10 days.
    @Sushi her is using it and others and she can be very useful
    Lou likes this.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is often recommended as a support treatment for Lyme, but usually after the infection has been knocked down a bit as, before then, patients may react with an uncomfortable inflammatory response.

    Sushi
    merylg, justy, Lou and 1 other person like this.
  13. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
  14. merylg

    merylg Senior Member

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    ABC Radio National (Australia) program went to air tonight. Presenter Dr Norman Swan.

    Touched on Lyme, Neuroborreliosis, CFS, medically unexplained symptoms, Australian & UK approach, German approach. Interesting panel. Podcast here:

    http://www.abc.net.au/radionational/programs/healthreport/past-programs/

    Mon 8th Sept 2014
    Unexplained medical symptoms - a panel discussion
    Hanna and Valentijn like this.
  15. GcMAF Australia

    GcMAF Australia Senior Member

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    Here is some good news
    For Lyme sufferers
    and others too
    https://mail.google.com/mail/u/0/#inbox/1485ccd77360fdd3


    House Passes Lyme Bill

    The Lyme Disease Association, Inc., LDA, is pleased to announce that the Lyme bill, HR 4701 - "Vector-Borne Disease Research Accountability and Transparency Act of 2014" as amended, was discussed on the floor of the U.S. House of Representatives today, September 9, and passed the House by voice vote.

    [​IMG]

    Representative Chris Gibson


    "This legislation is truly constituent-driven and represents a significant step forward in what has been an extensive process," said Congressman Gibson. "For the past few years, I have worked with physicians, patient advocates, professional researchers, patients and their families throughout New York and the United States on a bill that focuses solutions. I want to thank Pat Smith and other Lyme advocate leaders for their significant and persuasive engagement and unyielding commitment to change the direction of U.S. policy to bring solutions and relief for our chronic sufferers. This bill is dedicated to those patients who have been ill for years, at times seemingly without hope, wondering if anyone in Washington was listening or cared. We hear you. We do care, and today we passed this legislation to help you get better."


    The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress to include "a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections; ... a plan for improving diagnosis, treatment, and prevention."


    The bill also specifies that the Working Group established shall meet at least twice each year and that it shall be subject to the Federal Advisory Committee Act (FACA), which requires transparency in operations of the Working Group. Under FACA, meetings must be publicly announced, open, and provide an opportunity for divergent viewpoints. Minutes, as well as other records and reports must be made available to the public. FACA also stresses the importance of having a fairly balanced membership in terms of points of view represented.


    "This bill provides Lyme patients with a much needed voice in the shaping of public policy in Washington, DC, in a transparent setting. All aspects of the Lyme disease question including, chronic Lyme, will be examined, with participants of differing viewpoints coming together in discussion with the same goal in mind, finding research pathways which will help find a cure for Lyme disease and prevent new cases of all tick-borne diseases," said Lyme Disease Association President, Pat Smith.


    The LDA led a nationwide campaign to support this patient protective legislation and organized a letter signed by 154 Lyme & tick-borne disease groups and others that was sent to all members of the House Energy & Commerce Committee.


    The LDA thanks Representative C. Gibson (NY), bill sponsor; original co-sponsors C. Smith (NJ), Courtney, Peterson, Wolf, Barletta; and other bill sponsors and Representatives who supported the bill; the Energy and Commerce Committee; and leadership of the House. Also, we appreciate the favorable remarks about the bill on the floor after Mr. Gibson spoke, from Mr. Maloney of NY, and Mr. Smith of NJ.


    We also thank our partner groups nationwide who were instrumental in the effort to pass this legislation, and all Lyme groups across the country, patients, and other groups who worked on this effort. The next step for the bill is to go to the Senate, where we hope it will be given prompt consideration.
    justy, snowathlete, RustyJ and 4 others like this.
  16. GcMAF Australia

    GcMAF Australia Senior Member

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  17. Helen

    Helen Senior Member

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    Thanks @GcMAF Australia.
    I find the quotation interesting as this is discussed among doctors. Some tells it is enough with 2x100 mg daily and others tell that it has to be 2x200 mg daily to overcome just a bacteriostatic effect.

    Joe Burrascano, MD


    “Doxycycline 400 mg daily. Not 100 mg. Not 200 mg. That’s not strong enough.”
    merylg and GcMAF Australia like this.
  18. GcMAF Australia

    GcMAF Australia Senior Member

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    i think IV doxy would be better
    I would think gettingt it into some areas would be difficult
    Helen likes this.
  19. Helen

    Helen Senior Member

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    I agree. I live in a country where 2 weeks of oral Doxy 2x100 mg cures all Lyme according to the official authorities. This opinion is based on peer-reviewed studies !?
    Fortunately there are doctors who know from personal experience that this is wrong for some people, but still IV abx is more or less banned.
    Last edited: Oct 14, 2014
    GcMAF Australia and maryb like this.

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