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are positive tests as unreliable negative ones?

Discussion in 'Lyme Disease and Co-Infections' started by Aerose91, Jan 28, 2015.

  1. Aerose91

    Aerose91 Senior Member

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    I have had probably 10 Lyme tests from quest and LabCorp over 2 years and 2 have them have popped up positive randomly. About 6 months ago LabCorp showed band 41 positive but then I did a stonybrook test and all was negative. A couple more negative quest tests then most recently I popped positive for bands 39 and 41 on quest.

    Money is very very tight so I can't just jump in and do the IgeniX test unless it's absolutely necessary. Could these all be false positives?
     
  2. halcyon

    halcyon Senior Member

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    Band 39 and 41 IgG or IgM? Band 41 IgG was the only positive on my western blot. If I recall correctly, that band can be cross reactive with the flagella of many different types of bacteria.
     
  3. anciendaze

    anciendaze Senior Member

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    The problem here is that you need so many tests to get past frequent false negatives, using the FDA-approved kits, that you raise the probability of false positives to a level that can't be ignored. Testing 10 times and getting two positives doesn't mean much. You can even get false negative serological tests in patients who exhibit actual spirochetes in synovial fluid or cerebrospinal fluid. After spending that much money you deserve an answer better than "maybe".

    We badly need a test which is more reliable in both directions.
     
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  4. Aerose91

    Aerose91 Senior Member

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    It was bands 39 and 41 igG. My igM has always come back negative.

    Also, if it matters my total igG came back slightly high on this test and that's the first time I've had that. The range is 0-0.90 and mine was 0.97

    I actually had a spinal tap about 18 months ago while in Yale and they tested for Lyme and Rocky mountain spotted fever, both were negative.
     
  5. halcyon

    halcyon Senior Member

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    I wish that would be enough to say you're negative, but as anciendaze points out, it sadly isn't.

    The CDC criteria for a positive on the western blot is 2 out of 3 bands positive for IgM and/or 5 out of 10 Bb specific bands for IgG. So, per the CDC, all of your results so far would be considered negative. For whatever that is worth.
     
  6. Sidereal

    Sidereal Senior Member

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    Spinal tap to test for Lyme is of no use whatsoever.
     
  7. Aerose91

    Aerose91 Senior Member

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    Huh, Interesting. Hopefully my doctor can give me sole more insight into this when we go over it. Thank you for the help.

    As twisted as this sounds, I somewhat hope Lyme is in my equation somewhere because that's the only thing that could possibly explain how bad my brain is. I may have to bite the bullet and go through IgeniX at this point.
     
  8. Aerose91

    Aerose91 Senior Member

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    Really? Why
     
  9. Sidereal

    Sidereal Senior Member

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    Apparently it's positive in only a small percentage of cases even when the disease has spread to the CNS.
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My insurance covers Igenex--I think many plans do.

    Sushi
     
  11. halcyon

    halcyon Senior Member

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    I believe this is probably common with other pathogens as well. This case study sticks in my mind as an example. A patient with rapid onset dementia, his CSF was negative for enterovirus by PCR. They then did a brain biopsy which was positive for enterovirus. They also mention in the paper that in an outbreak of aseptic meningitis due to enterovirus 71, only 30% of the patients had positive CSF PCR findings.

    I think it parallels the situation of not finding pathogens in the blood of ME patients. They're in the tissues, not the fluids.
     
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  12. Aerose91

    Aerose91 Senior Member

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    What plan do u have? Every doctor I've seen has said no way will insurance cover it. Would be great if they did
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Medicare. If Medicare covers it, other plans often to too.
    Sushi
     
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  14. Aerose91

    Aerose91 Senior Member

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    Bummer, I have blue shield and just called them and they don't. Worth a try, tho
     

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