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Best Labs and testing procedure for Lyme?

Discussion in 'Lyme Disease and Co-Infections' started by JBB, Aug 15, 2014.

  1. JBB

    JBB Senior Member

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    Hey guys,

    I have seen a lot of people seem to be using IGeneX or Infectolabs.

    1. Are IGeneX and Infectolabs these the top Lyme labs in the world and the typical ones used by us?

    Also with regard to testing I am wondering about breaking biofilms and antibiotics before the test to try to provoke more of a reaction (particularly with CPR surely this would make the test more able to pick up the broken bits of DNA). Does anyone do this / have Drs who recommend this? I did a doxy challenge ages ago and it did nothing to me although I took no biofilm breakers. So...

    2. Should one break biofilms / hit Lyme with a killing agent before testing to improve chances of a positive result?



    Look forward to your replies,

    J
     
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  2. JAH

    JAH Senior Member

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    I am also interested in this subject. I had a new Lyme test done at a lab in Milford CT, which was negative. (I have also had several igenex tests done) And would like to know if there if there could be any benefit to my getting the infectolab test as well.

    "The Molecular Diagnostics Department of Milford Medical Laboratory is the first, and at present, the only licensed clinical laboratory in the United States to offer a combined DNA Sequencing-based diagnostic test for Borrelia burgdorferi, the infectious agent for Lyme disease and Borrelia miyamotoi, the infectious agent of a similar Lyme disease-like illness found recently in the United States."

    http://www.dnalymetest.com/

    Like@jbb, would welcome feedback on efficacy of these different test, your experience. JAH
     
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  3. JBB

    JBB Senior Member

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    From a LLMD about efficacy of tests here...typical the site has just gone down so the following link will take you to a different place. Luckily I copied most of the info as below (there was also a great video, this was yesterday!):

    http://www.treatlyme.net/treat-lyme-book/how-to-diagnose-chronic-lyme-disease.html


    "Sensitivity" means the ability of the test to detect patients who have the disease, "specificity" means the ability of the test to exclude those who don't.

    So using Western Blot at IgeneX 27% of Lyme will be missed?? But if you are totally negative then you can be pretty sure you don't have it? I don't like those statistics!!

    From:
    http://www.igenex.com/labtest.htm


    Good "predictive value" then (chance test is correct). 50% prior probability??? What does that mean!?

    I have sent IGeneX an email with various questions about their tests. No reply yet.



    J
     
    Last edited: Aug 15, 2014
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  4. Valentijn

    Valentijn Senior Member

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    The infectolab test has 89.4% sensitivity (10.6% false negatives) and 98.7% specificity (1.3% false positives). That's when the threshold for a positive result is 3, so at 2 (which they typically use) there's probably fewer false negatives but a bit more false positives.

    So the Infectolab Elispot-LTT results in a LOT less false negatives, and a bit less false positives than Western Blot.
     
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  5. JBB

    JBB Senior Member

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    Thanks @Valentijn. That is very useful, much appreciation. Can you clarify a few things for me please?

    Are you talking about this combination of tests taken together?...

    http://www.infectolab.de/index.php?id=47&L=1

    Threshold is new to me. Is this the number of bands which are positive in the WB test? Isn't it pretty unlikely to get 3 positive lyme specific bands, or even two is pretty lucky?...or is this something else you are talking about. How does the LTT count in the threshold?


    Best wishes,

    J
     
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  6. justy

    justy Donate Advocate Demonstrate

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    I have had the infectolab Elispot LTT and I don't understand it at all. Can anyone explain how it works, what they are testing and what the three values listed mean? my result was 1 1 1, which they say is negative, but my doctor doesn't agree that I don't have Lyme and said its not exactly negative, but I don't get it at all??
     
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  7. JBB

    JBB Senior Member

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    This is from a cached page from the website I tried to open earlier who are now apparently wanting a subscription to access the info...thanks google!!

    http://webcache.googleusercontent.com/search?q=cache:gP4bnHUlo_4J:www.treatlyme.net/treat-lyme-book/a-review-of-lyme-infection-tests-pass-or-fail.html &cd=1&hl=en&ct=clnk&gl=uk&client=firefox-a



    Not sure how long the cache will last but I have now copied the whole page to a word document if anyone can't access it PM me.


    Best wishes,

    J
     
    Last edited: Aug 15, 2014
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  8. Valentijn

    Valentijn Senior Member

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    No, those are the stats for the Elispot-LTT alone.
     
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  9. JBB

    JBB Senior Member

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    Aaah thanks @Valentijn. Wow, that's pretty impressive!

    I'd be interested to know any details people have on how to interpret this Elispot-LTT test.

    @justy KDM (I guess?) didn't agree that 111 was negative? Did he give any more details about how he was interpreting it or did he not agree based on clinical grounds?


    Best wishes,

    J
     
    Last edited: Aug 15, 2014
  10. justy

    justy Donate Advocate Demonstrate

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    He didn't agree based on: symptoms and clinical picture, immune tests (SCD14 very high, but CD57 was not that low at 70, but in general he feels my immune system is very poor and perhaps not producing an immune response?) and the presence of Bartonella and Chlamydia Pneumonia which he felt were more common as co infections with Lyme, rather than on their own.

    He is going to re test.
     
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  11. JBB

    JBB Senior Member

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    That argument seems pretty sound justy. I found this about CD57 - it can fluctuate. In video no.12 with KDM he says that he thinks the NK cells go into tissues to fight infection hence the low readings, not that we don't have them...guess this could be an explanation why there can be fluctuation.

    http://www.lymediseaseaction.org.uk/latest-news/uk-usa-labs-in-talks/


    Guess in context of other immune markers / extremely low results there must be some significance to a trained eye though.

    Would you mind sharing any symptoms which were thought more Lyme specific as appose to ME? I have disappearing rashes on wrists / knees which seem to me more specific to Lyme in my mind - anything like that? Clinically I have had a tick bite when I was young and possibly many as my family had dogs which often got ticks.

    What sort of stuff was he picking up on clinically?

    Did he do anything prior to the tests such as antibiotics / biofilm breakers to increase reliability of the test results?


    I found the following interesting on how Borellia can lie latent for years after the initial infection:


    http://www.mesupport.co.uk/index.php?page=lyme-disease-borreliosis-m-e-in-the-uk



    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448627/



    Best wishes,

    J
     
    Last edited: Aug 15, 2014
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  12. justy

    justy Donate Advocate Demonstrate

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    I think he was picking up also on high inflammatory markers, and he felt I had brain inflammation, which was possibly backed up by tests. Other than that I just gave him a long, detailed history and a tick box questionnaire - he doesn't spend a lot of time discussing things so I don't know what he specifically thinks points to Lyme clinically other than the brain inflammation - but then Bart can cause that too.

    I don't remember being bitten by a tick, but I grew up with dogs and had my own. What I do remember is cats and fleas a plenty (bart?) as well as spending a lot of time as a teenager and young adult in fields (misspent youth!) and also a nasty horse fly bite which swelled up for two years!! the horsefly bite cam just before my severe relapse after years of almost complete remission.

    I have had a lot of psychiatric symptoms as well over the years - but that could be the Bartonella too. I do have some joint pain, but mainly small joints like fingers, knuckles, and ankles and I also now have weakly positive ANA - KDM says he sees this all the time in his Cpn patients.

    I am starting Rifampicin (oral) for Bart soon and then some IVIG, then he will re test.
     
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  13. kevinj

    kevinj

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    I want to get tested for this one too.

    But I heard some people get tested a few times and it is negative and then finally they get a positive
    Very complicated

    Studying up.
     
  14. JBB

    JBB Senior Member

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    @kevinj Yes it would appear that is the case. Also you can get back a result which is kind of borderline. Having said that my quote above suggests that from IGeneX around 73% of patients will be picked up by their western blot alone, add 30% CPR to that (looking for DNA of borellia) and you are looking at 80%...not sure about IFA from IGeneX, I was told that if this is positive they consider you +ve but there is some controversy over whether the test cross reacts.

    If you are unsure on your first test there is a second test they do with antibiotic challenge looking for DNA in urine, it is on their site as a followup if your first test is negative. Don't know the stats for this one.

    Same with LTT, difficult to tell how accurate it is as it is not "standard" if there is such a thing. Although what valentijn said is very impressive if that is truly an indicator. But...I wonder what the chances of getting 3's are, if they call 2 +ve the stats could be completely different.

    I am trying to email the labs to get their stats on certain tests but finding it difficult to get an answer.


    Best of luck,

    J
     
    Last edited: Aug 24, 2014
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