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Just found out I have Lyme

Discussion in 'Lyme Disease and Co-Infections' started by k-AUS, Sep 27, 2013.

  1. k-AUS

    k-AUS

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    australia
    After 7 years of being diagnosed with ME/cfs and fibromyalgia I just found out I have lyme disease and chlamydia pn. I sent my blood to infectolabs in Germany and this is what they found:

    Borrelia burgdorferi antibodies (immunoblot)
    Borrelia-Blot-IgG-antibodies negative
    Borrelia-Blot-IgM-antibodies negative

    Borrelia burgdorferi Elispot LTT
    Borrelia burgd. Fully Antigen + 11 SI <2
    Borrelia OSP-Mix (OSPA/OSPC/DbpA) + 13 SI <2
    BorreliaLFA-1 + 3 SI <2


    Chlamydia pneumoniae Elispot LTT
    Chlamydia pneumoniae-Elispot LTT + 14 SI < 2
    CD 57 positive NK-cells 30 /μl (range 100-360)



    Im so glad my cfs/me dr. in Melbourne, Australia took initiative and did this for me. I believe I am one of hundreds of Australians who are now receiving this diagnoses. Many are fighting for this diagnosis and proper treatment as it is not recognised as even existing in Australia.

    Sure, I have been to west coast US and Canada twice, however i have spent little time there - the two times I developed a lyme like fever and rashes were in Melbourne in 1992 and 2006. It does not coincide with when I was overseas!!

    Unfortunately our Govt. is burying its head in the sand and our doctors are absolutely clueless (geez I even remember having scrapings of my rash sent to path. to see if it was a fungal infection) this was after a severe virus with joint swelling :thumbdown:

    off to see the dr in the next few weeks to discuss treatment.
    cigana, roxie60, taniaaust1 and 3 others like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    k-AUS

    Good discovery! Wow, your numbers are high--nice to get something definite and not equivocal.

    So....anti-biotics?
    Sushi
  3. atoska

    atoska

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    rome italy
    That is good news!! First step to recovery! :)
    good luck!
  4. k-AUS

    k-AUS

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    Haven't been back to see the dr yet, but I'm assuming antibiotics will be the way to go. The thing I'm curious about now is whether my teenage daughter has it too. She has had terrible joint, bone and muscle pains and always has weird rashes that the Dr's have labelled as uticaria and hives. Recently a specialist diagnosed her with fibromyalgia. She will be tested hopefully before Christmas. Could it be lyme as well???


    atoska

    thanks for your kind words. I'm 80% housebound and pacing activities around my bed. Even a 50% recovery would gain some life back :)
  5. Esther12

    Esther12 Senior Member

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    Best of luck with everything.

    I was discussing some concerns of Lyme testing in this thread: http://forums.phoenixrising.me/index.php?threads/lyme-testing.25260/

    I think that some post were deleted from there, and it's easy for these things to get a bit heated, but I'd say it's best to be cautious, look carefully at the evidence, and try to get informed second opinions if you can. Best of luck with it all.
    k-AUS and Katherine like this.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It could be. There does seem to be the possibility of passing it from mother to child. Sure would be worth getting her checked.

    Best wishes. I am in a similar place with you around a Bartonella diagnosis.

    Sushi
    k-AUS likes this.
  7. Sparrowhawk

    Sparrowhawk Senior Member

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    West Coast USA
    On the Chlamydia pneumoniae there is this site, fyi: http://cpnhelp.org/ not sure if it might be helpful to you.

    Would you be willing to share what it cost to send a blood sample to that German company? Did it have to be sent frozen?
    k-AUS likes this.
  8. k-AUS

    k-AUS

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    australia

    The actual price list is found on the infectolabs website. Here is a breakdown of what the dr. ordered for me:

    Borrelia Elispot LTT (CPDA) 184.49 (euros)

    CD3-/CD57+Cells
    (Heparin+EDTA) 106.68 (euros)

    Borrelia IgG and IgM-EIA
    (serum) 139.88 (euros)


    Bartonella-IgG Antibodies
    (serum) 89.19 (euros)

    Chlamydia pn. Elispot LTT
    (CPDA) 84. 81 (euros)


    In total (thanks to the calculator on my iphone - you'd think having an accountant and 2 kids doing secondary school maths I could find a freaking normal calculator)o_O. Anyway the total is...............................................................................

    605.05 euros

    This does not include costs of the blood draw or shipping

    Also don't forget the dollar conversion


    PS - I dont know if the blood was sent frozen or not, but they did pack it in a polystyrene box with a cold pack and it was sent asap. Hope this is helpful
  9. Sparrowhawk

    Sparrowhawk Senior Member

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    West Coast USA
    Thanks, indeed very helpful. That's approx US$817.00.
    k-AUS likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I once looked up cost of sending blood overseas and it was a crazy amount.. more then the cost of the lyme test. Im very interested to know what you paid to get it there.
  11. Lymelight

    Lymelight

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    Brussels, Belgium
    I just found out that Infectolab has an australian website: http://www.infectolab.com.au. I read there :

    Valentijn and k-AUS like this.
  12. k-AUS

    k-AUS

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    taniaaust1 my melb. me/cfs dr sent a group of patients blood to infectolabs, so it cost me less than doing it individually. It cost me $100 for the blood draw and shipping. It would be worthwhile giving Infectolab Aust. a call as Limelight suggested.

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