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Lyme testing

Discussion in 'Lyme Disease and Co-Infections' started by Esther12, Sep 10, 2013.

  1. Esther12

    Esther12 Senior Member

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    [edit: These posts have been cut from a thread about adding a new 'Lyme' sub-forum]:

    Post XMRV it's probably also worth having a sticky warning people of the danger of unvalidated tests. It's been a while since I looked into this, but when I last did, it seemed that no lyme testing was 100% accurate, and that there were loads of rubbish alternative tests which were leading to a lot of patients being wrongly given a diagnosis of Lyme. Unless there is published evidence that a test is at least somewhat reliable under blinded conditions, then I would encourage everyone to avoid them and those who sell them.
  2. Clodomir

    Clodomir In hibernation mood

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    Hi,

    So, for you, Lyme is not an option?
    Lou likes this.
  3. Lou

    Lou Senior Member

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    No, Clodomir, it's a bit like the CDC and that Tahoe malady, never mind the myriad abnormal tests (T-4/T8 ratio, B cell damage, low T-4 suppressor cells, sky-high ebv antibodies, and ridiculously close/matching clinical symptoms) if we can't test for it you're not sick.

    However, we're not nearly as exacting for inclusion into our mental illness group, why don't you step to the back, wait on one of our psyche doctors.

    With regard to so called Lyme we do give some credence to an unfortunate outcome of one of its co-infections, albeit post mortem. If we find someone drowned in bed in a pool of sweat Babesia is not completely ruled out (yes, kidding/venting here, but not much. Have they admitted yet it's even possible to get Lyme in the southeast USA? If so, it took too long).
    JBB, rosie26, Wayne and 3 others like this.
  4. Esther12

    Esther12 Senior Member

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    I'm not totally sure what you're asking. I think that the reliability of all blood tests should be able to hold up under blinded conditions - if it cannot, then the test is of no value. Some people definitely suffer from Lyme disease, and it can be really serious. Also, some people are wrongly told that they suffer from Lyme disease because of dodgy tests, and this can cause serious problems for them too.
    svetoslav80 and Svenja like this.
  5. Daffodil

    Daffodil Senior Member

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    what do you guys think of the ELISPOT test? my local doctor, who is not even a CFS specialist and who sometimes will not prescribe me drugs that are suggested by my out of country CFS doctors, didn't even argue when I mentioned the ELISPOT and gave me the antibiotics right away. I think he even said he wouldn't give them to me before but he said he knew what an ELISPOT was.
    Clodomir likes this.
  6. Ema

    Ema Senior Member

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    It would help if the mainstream doctors didn't use the worst of the worst tests (ie ELISA) to deny people proper care.

    Tests are always just one piece of the puzzle. Many illnesses have this trouble with labs not telling the whole story. This is hardly just a Lyme issue.

    Ema
    Wayne, taniaaust1 and snowathlete like this.
  7. JT1024

    JT1024 Senior Member

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  8. Esther12

    Esther12 Senior Member

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    Sorry not to be able to given any advice, but I've forgotten all of the details for this stuff. There can also be dodgy labs selling what should be reliable tests, so it's worth checking out the lab which is being used too. I wonder if there is somewhere that keeps track of the different levels of reliability of different tests?
  9. snowathlete

    snowathlete

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    I agree with caution regarding unvalidated tests but to say a test is of no value just because it hasn't been validated (say by the FDA) is a bit too black and white for my liking. Although it is true that a wrong diagnosis of lyme (or another co infection) can be detrimental, it is also the case that some other people who receive a clinical diagnosis with or without unvalidated tests to suport it, go on to have treatment and recover. Caution is justified but it is a grey area and going completely in the opposite direction can also result in harm.
    JBB, Lou, Valentijn and 3 others like this.
  10. Esther12

    Esther12 Senior Member

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    I don't know anything about FDA procedures, so cannot comment on that, but I do think it's fair to say that blood tests which do not hold up under blinded conditions are of no value, and are just like tea leaf reading.

    Everyone has their own judgements to make about risk and potential benefits for experimental interventions, but I think that testing procedures need to have been shown to have some level of reliability under blinded conditions before it is fair to sell them, or use them to guide treatment.
  11. snowathlete

    snowathlete

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    A lot (probably the large majority) of FDA approved tests start out that way though - as unapproved research tests available for sale. Until validation there are no guarantees but I think this is pretty much the norm for all diseases.
    Clodomir and Wayne like this.
  12. Esther12

    Esther12 Senior Member

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    Those conducting or recommending the testing could still do their own blinded trial, and I think it would be unethical for them to sell their tests to others before they had taken such steps to ensure that the testing was of at least some real value.

    There is a grey area around some of this stuff, but it's still important for doctors to maintain some minimal standards, even for patients who are willing to try anything.
  13. snowathlete

    snowathlete

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    I agree, but who is to say they don't run such tests? I expect many do but they aren't made public.
    There are some tests like these that have been published for non-validated Borrelia tests.

    Putting the cost and time aside for a moment, and assuming the test has been developed to a point where it is not going to get better (because some might consider it reasonable to start selling a test when it is effective, but not fully perfected yet) there has to be something to test against to compare the new test to. In some diseases there is no authorised test to compare against so how do we know the new test is good or bad? I don't know how the FDA answer this question when they have to decide if a new test is anygood; it can't be easy.

    In the case of Lyme there is an existing validated test that you can compare against, so the picture is clearer, but this is still not ideal because the existing validated test has a lot of questions hanging over it's efficacy.
    Clodomir likes this.
  14. Esther12

    Esther12 Senior Member

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    Like with XMRV, they can test to see whether they are able to distinguish samples from those previously tested positive from healthy controls under blinded conditions. For some of the alternative lyme tests, they can't even do that.

    There are difficulties and uncertainties around these sorts of things, but it does seem that much of the alternative lyme stuff doesn't even reach the bare minimum of acceptability. I certainly think that patients should be free to choose to do things that I would not, and everyone has different attitudes towards cost/risk/etc, but this all needs to be done under a framework of informed consent. When things like the unreliable nature of certain testing is not being explained to patients, or not even being assessed by those providing the testing, then patients are being robbed of their ability to provide that informed consent.

    There have also been problems with more 'mainstream' approaches to lyme meaning that patients were being given unwarranted reassurance, and that's terrible too, but shouldn't be a reason to lower our standards for what should be acceptable in medicine around Lyme, and to me, it does seem that there is a lot of dodginess in this area.
    Svenja and Valentijn like this.
  15. snowathlete

    snowathlete

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    True, and I agree that tests should be consistant and reliable in that sense. But as with XMRV, that alone is not enough to mean the test has any value (as I think you are pointing out). But that aside, if any test can't at least prove a good level of consistancy then clearly it wouldn't be any good. I don't know how often anyone sees data like this though, but I'm all for transparency of data.
  16. Lymelight

    Lymelight

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    What do you really mean by
    Can you be more specific on this ?
  17. Esther12

    Esther12 Senior Member

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    Any of the testing which has not been able to display any degree of consistency under blinded conditions. Or, any testing which ends up reporting near 100% infection rates for Lyme.

    I do not have a list of tests like this, although I was suggesting that it could be worth trying to find out which tests have/have not been assessed in this way, and what level of reliability they were found to have, so that it could be stickied at the top of any new Lyme forum.
  18. beaverfury

    beaverfury beaverfury

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    A doctor should use clinical diagnoses as well as Western immunoblot and Elisa tests for borrelia antibodies.

    If you have a cfs/me-like illness, were bitten by a tick, and the above tests come up positive it would be quite odd to assume you didn't have Lyme.

    Positive test results from combined Immunoblot and Elisa seem quite accurate, if wiki can be trusted below.
    Though i'm not a scientist and I have no expertise in these areas. ( Or any areas really ).

    'The serological laboratory tests most widely available and employed are the Western blot and ELISA. A two-tiered protocol is recommended by the Centers for Disease Control and Prevention (CDC): the sensitive ELISA test is performed first, and if it is positive or equivocal, then the more specific Western blot is run.[88] The reliability of testing in diagnosis remains controversial.[2] Studies show the Western blot IgM has a specificity of 94–96% for patients with clinical symptoms of early Lyme disease.[89][90] The initial ELISA test has a sensitivity of about 70%, and in two-tiered testing, the overall sensitivity is only 64%, although this rises to 100% in the subset of people with disseminated symptoms, such as arthritis.[91]
    Erroneous test results have been widely reported in both early and late stages of the disease, and can be caused by several factors, including antibody cross-reactions from other infections, including Epstein-Barr virus and cytomegalovirus,[92] as well as herpes simplex virus.[93] The overall rate of false positives is low, only about 1 to 3%, in comparison to a false negative rate of up to 36% using two-tiered testing.[91]'

    The only other issue is- who is doing the testing? Once again, you are trusting your doctor to find a reputable lab. I can only hope there's a fair degree of consistency and rigour in the borrelia testing sequences across laboratories, because I don't really know.

    Infectolabs of Germany run these tests for me.
    Laboratory Tests Stage III (chronic Lyme disease):
    1. Borrelia IgG- and IgM-EIA incl. VlsE
    2. Borrelia IgG- and IgM-Immunoblot incl. VlsE
    3. Borrelia Elispot-LTT
    4. CD3-/CD57+Cells
    I had three positive bands come up for an Immunnoblot test and a positive for the Elisa. Considering my illness and tick bite history what could I do but consider that Lyme is at least a factor, if not the full problem of my illness?
    sianrecovery, Lou, Lala and 2 others like this.
  19. beaverfury

    beaverfury beaverfury

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    Didn't mean to make that font ,HUGE !! That's another area I lack expertise in
    Esther12 likes this.
  20. Esther12

    Esther12 Senior Member

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    I totally understand. It's really difficult for anyone to really know, and it's normal for people to just trust their doctors to use worthwhile testing. And they should be able to! It's ridiculous that we're in a situation where patients need to try to hunt through the internet to check whether the tests they've been sold are worthwhile or not.

    I don't know about infectolabs. To me, after some googling, it did look like it was one of the labs finding many more people positive for lyme than others tests, but who had not provided any data showing the reliability of their testing. That seems a bit dodgy to me. But also, I didn't find any data showing that they were unreliable.

    When googling, I found this old post of mine, which still sums up my position really:

    Indeed, as time continues to pass without credible evidence of the reliability of any of these alternative tests, the dodgier it is to continue to use them imo.

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