Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Current opinions on Elispot

Discussion in 'Lyme Disease and Co-Infections' started by Fudge, Dec 12, 2016.

  1. Fudge

    Fudge

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    I have had severe ME since 2004, and earlier this year was tested for Lyme. Please can I have people's opinions on the Elispot and Lymespot revised? It seems like they are still not validated for a Lyme Disease diagnosis. I recently saw an ID Consultant who told me that no trials have been carried out to prove their reliability. I've had both tests and whilst the Armin Elispot came back positive, the BCA Lab one came back negative. The latter is an accredited laboratory, but I don't think that makes a difference for this particular test. No surprise, I have zero confidence in this blood test. Thanks
     
  2. Valentijn

    Valentijn The Diabolic Logic

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    There isn't really an official validation process for diagnosing a disease. Even the people who developed the current Lyme tests (which the CDC uses for reporting) say they are not reliable enough for diagnosis. Diagnosis remains primarily clinical, based on symptoms and exposure.

    That isn't true, for the LTT Elispot from Germany. The lab did publish regarding the specificity and sensitivity, and it was very good in relation to the mainstream tests. The one caveat is that they used a score of 3 or higher as the threshold for diagnosis in that paper, whereas they now use 2 or higher for diagnosis with the test. So 2 is rather borderline, but was accurate in my case - possibly it was borderline due to having been infected by an American strain instead a European one, and/or having been untreated for 20+ years.

    Accreditation just means the laboratory is operating properly. It doesn't reflect the accuracy of the test.
     
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  3. Fudge

    Fudge

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    Thanks for your reply. I know what you mean about the accreditation, it's just that from my experience Consultants will throw out the 'that laboratory isn't accredited' comment. Armin is still going through the accreditation process, I'm not sure when it will be completed. My BCA Lab immunoblot was accepted because the Lab is accredited and the test validated for use in Lyme diagnosis.

    What I mean by validation, is the standard Lyme Blood tests have been through trials, which are needed for an investigative test to receive validation. I better make it clear that I know all blood tests for Lyme are unreliable, I'm just explaining the process. The subject was mentioned back in June, and I just wondered if anyone here knew if the Lyme Elispot external validation had been done. Going by the Lyme Disease Group conversations, the position seems to be the same as earlier in the year.

    Just in case you don't know, Armin has changed his breakdown of the Elispot. It now says
    0-1 is negative
    2-3 is weak positive
    greater than 3 is positive.

    Where you say the Elispot was accurate for you, does that mean you have Lyme Disease and/or ME?
     
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  4. Valentijn

    Valentijn The Diabolic Logic

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    For some reason the people slamming alternative Lyme tests are (almost) never willing to fund validation trials :rolleyes: But essentially it has been validated in research, and if someone wants to dispute that they need to do their own research to prove it. The test has been shown to be accurate unless someone proves otherwise.

    I had a standard Jarisch-Herxheimer reaction to antibiotics targeted at Lyme, with regular fevers and an additional form of hypotension different from my usual orthostatic intolerance. I've also had some sustained improvement in symptoms, such as cognitive function.
     

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