Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Bartonellosis

Discussion in 'Lyme Disease and Co-Infections' started by merylg, Jun 30, 2015.

  1. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
  2. IreneF

    IreneF Senior Member

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    Fascinating
     
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  3. GaryK

    GaryK

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    Canada Niagara Falls
    Merylg I Loved this Lecture! a Brilliant man. I hope he gets more funding.
     
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  4. duncan

    duncan Senior Member

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    Wow. A bit unsettling. They don't know what to look for or how to look adequately. Bartonella is immunosuppressent in itself. But how does it progress in already immunocompromised patients?

    Who is assigned to delve into these and related issues?
     
  5. acer2000

    acer2000 Senior Member

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    Yeah they are doing great work.
     
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  6. Hutan

    Hutan Kina solidarity

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    Thanks very much @merlyg. Seeing this video has given me renewed determination to followup on zoonotic diseases including bartonella which my family and I may have been exposed to. Clearly so much remains to be found out.
     
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  7. acer2000

    acer2000 Senior Member

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    Has anyone here treated for Bartonella? If so what was the treatment and how did you do?
     
  8. justy

    justy Donate Advocate Demonstrate

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    Rifampicin is the drug of choice. But it can cause hellish neurological/psych herx symptoms. After 3 days on it I was just about ready to kill myself and had to stop on the advice of my family Dr.

    Since then haven't been able to treat due to developing MCAS...
     
  9. justy

    justy Donate Advocate Demonstrate

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    So much that is great in this lecture. I highly recommend watching it.

    A couple of words stood out for me in relation to my personal situation.
    1, Mitral valve (just been dx with MVP with regurgitation
    2.Epistaxis - didn't know this meant nosebleeds. One yea after horsefly bite I had a severe M.E relapse that has continued since then. A notable feature at the beginning was daily prolonged nose bleeds that went on for a couple of years...perhaps I now have an explanation as I was dx last year with Bartonella. H
     
  10. justy

    justy Donate Advocate Demonstrate

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    Some great stuff in the questions and answers at the end. Bartonella can be cleared from the system with antibiotics but has a tendency to come back!! Perhaps even a year after testing negative...
     
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  11. duncan

    duncan Senior Member

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    I got my most recent Lyme tests back about 10 days ago, and I tested positive for both bartonella and babesia. I have not had the babesia confirmed via blood smear. In case anyone cares, my tests were done by an IDSAer.

    As I just came off six months of a good abx cocktail; I should not really do anything for a while. But all the symptoms blend together, so no harm. :cool:

    Babesia is a weird fish, though. Read up on that stuff. I have spoken to one of the leading experts in the world about it too. Basically, if it's in your system, you can never be sure it gets totally eradicated. Oddly, lots of doctors don't bother treating unless you're symptomatic - which is myopic at best, because supposedly it can be latent for years, and then out of nowhere, BAM!

    Bartonella, well, there are some who speculate Bartonella is worse than Lyme. No definitive proof it is passed on by tick vectors, but I've never owned a cat as an adult, while I've been tick-bitten more times than I care to count. So as an anecdote...here I am, ALDF/IDSA/CDC/NIH. :)
     
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