1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Borrelia – In the Lymelight

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

  1. roxie60

    roxie60 Senior Member

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    Sorry guys, I did not realiz my earlier posts were going here, I though I was just adding to someone's thread. Hope I didn't derail this important blog.
     
  2. roxie60

    roxie60 Senior Member

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    Thank you so much Joel for writing this. You did a good job explaining the expereince we have trying to pin down what is wrong with us and how controversial Lyme is on so many levels. I thought I got treated poorly when CFS was considered my diagnosis now with the possibility of Lyme it is even more of a nightmare expereince. I did not think that was possible.
     
  3. snowathlete

    snowathlete

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    I don't mind it going here, personally. There is nowhere better for it at present.

    Thanks, and you're welcome. My experience of Lyme so far is that people get it more than ME/CFS but not by much. The public understand what it is a bit more, and some doctors seem to take it seriously, compared to ME/CFS at least, but then some others do not. It's certainly inadequate on many levels either way you look at it. I'd like to write more about Lyme, but I'm too sick. :ill:
     
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  4. roxie60

    roxie60 Senior Member

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    I look forward to you feeling better and sharing your thoughts about lyme when you are better.
     
  5. merylg

    merylg Senior Member

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    Valentijn and GcMAF Australia like this.
  6. GcMAF Australia

    GcMAF Australia Senior Member

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    merylg likes this.
  7. merylg

    merylg Senior Member

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  8. merylg

    merylg Senior Member

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  9. GcMAF Australia

    GcMAF Australia Senior Member

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    http://www.spirochaetalalzheimersassociation.org/launchmtg.html
    Inaugural Meeting of Spirochaetal Alzheimer's Association-London
    some selected quotes
    "
    Even Dr. MacDonald's subsequent discovery that the Borrelia was causing miscarriages and killing infants was ignored.

    In 1985, whilst attending a conference in Vienna, Dr. MacDonald heard European researchers refer to Tertiary or Third-stage Lyme Disease of the brain.
    Dr. MacDonald relates how he began his investigations using monoclonal antibodies to detect Borrelia, later switching to DNA-based techniques such as the Polymerase Chain Reaction (PCR),
    and most recently, Molecular Beacons - extremely accurate DNA probes.

    On the screen we see distinct bands on a strip, relating to seven of ten Alzheimer brain specimens which were PCR-positive for Borrelia.

    'DNA sequence analysis - this is the most precise identification technology available today
    [​IMG]

    By 2021, the UK is predicted to have one million dementia sufferers - most of them victims of Alzheimer's. Worldwide, the human toll is staggering, not to mention the potentially destabilising economic costs of round-the-clock care for millions of people. Dr. MacDonald has asked if mankind is prepared to widen the keyhole view of Lyme Disease. The question is, can we afford not to?
     
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  10. roxie60

    roxie60 Senior Member

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    @GcMAF Australia I wish this doctor would get more people listening .....or maybe those in charge dont want to know the truth? Another great presentation by dr mcdonald.
     
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  11. GcMAF Australia

    GcMAF Australia Senior Member

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    Thank you @rixie60
     
  12. Daffodil

    Daffodil Senior Member

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    I am not sure lyme is any better..chronic lyme is just as hard to treat and probably has autoimmune component too
     
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  13. GcMAF Australia

    GcMAF Australia Senior Member

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  14. GcMAF Australia

    GcMAF Australia Senior Member

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    Thank you Daffodil
     
  15. GcMAF Australia

    GcMAF Australia Senior Member

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    I know of 1 US and 3 Australian doctors where about 90% of ME/CFS patients were then diagnosed with Lyme disease
     
  16. GcMAF Australia

    GcMAF Australia Senior Member

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  17. Gijs

    Gijs Senior Member

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    Which test do these doctors use? And what are there names? I don't believe that 90% have Lyme. It is bullshit. Sorry.
     
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  18. roxie60

    roxie60 Senior Member

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    I dont think that sounds far fetched. The wah I interpret that statement is 90% of the patients those drs saw ended up having lyme &co-infections, it is not saying 90% of all cfs/me, als, ms, etc have lyme, just the patients that sought them out. If they are specialists in lyme it would not surprise me a arge percentage of their patients were found to have lyme.

    many reasons for this, most regular mds and other specialists dont have a clue how to dx lyme and co, they dont know how to interpret the variius tests nor aware how often the tests are negative and yet one can have lyme and coinfections once the history of symptoms evaluate d by experienced lyme drs.

    I was told I had fibro, possibly ms (based on mri), cfs, depression none of which were true and in my spirit I knew there was something causing this. Fi ally after ten years this year lyme suspectec, coinfections confirmed and 4 months into treatment seeing slight improvement s. Jmo
     
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  19. Gijs

    Gijs Senior Member

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    The Meirleir from Belgium says that 95% of the patiënts with CFS have chronic Lyme based on a not validated LTT test. This is a big statement!
     
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  20. Valentijn

    Valentijn Activity Level: 3

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    It my case it seems to have been quite accurate. The antibiotic used thus far has had a fairly good effect on several symptoms and general functioning. I also had a textbook Herxheimer reaction while on it, which is very strong evidence of a bacterial infection involving spirochetes.
     
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