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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Discussion about Armin labs (Split Thread).

Discussion in 'Lyme Disease and Co-Infections' started by justy, Jan 12, 2016.

  1. justy

    justy Senior Member

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    This thread was split from the 'Describe Your ME/CFS'.

    I still think you need to do a Lyme test and co infections. Arminlabs are the best bet right now.
     
    Last edited by a moderator: Jan 14, 2016
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member

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    With all due respect Justy, I would advise against getting an Armin Lyme test without a clinical assessment. Lyme results need to be interpreted in a clinical context anyway. From what I have gathered from all the sources I listen to it seems very likely that Armin labs are producing false positive results and people are taking treatment unnecessarily. I cannot prove that but it looks to me the likely situation. Lyme is not the first thing to be thought of with painful joints - it comes way down the list.

    Domiciliary visits used to be common enough but GPs stopped asking for them regularly some years ago. That may indicate a change in the rules but I suspect it had too high a cost tag. Even in the old days they were only used for one off situations that cropped up - often when a GP wanted a rapid opinion on someone housebound when not knowing whether or not to admit the person or refer to a different speciality. I do not know the history of their use in ME but my impression is that NHS physicians with an interest in ME like Nigel Speight and Esther Crawley have done them fairly regularly.
     
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  3. justy

    justy Senior Member

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    I am afraid this is just speculation. I suggest you begin a dialogue with Armin himself if you have concerns. Of course without a proper clinical assessment diagnosing and treating situations like Lyme is complex - but for many bedbound patients taking a test without clinical assessment may give them an idea of where to focus. I am personally in touch with many people misdiagnosed with M.E to varying degrees and for varying amounts of time who are improving on treatment for Lyme. It is always the elephant in the room and shameful that so many Drs are ignoring it (and other co infections) in the UK.
     
  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    The problem for me is that many ME-patients testing positive for lyme via arminlabs, will not have lyme. As Edwards points out, the clinical picture is currently the best biomarker when it comes to lyme disease. Starting long antibiotics-treatment based solely on the result from a armin lab test, when one might have ME, is risky.
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member

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    It is more than just speculation, Justy. I appreciate your point of view but I think it is important for PR members to realise that it is not the only point of view. The infectious disease doctors I know in the UK do not ignore Lyme. They are interested in it but want to make the right diagnosis.
     
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  6. msf

    msf Senior Member

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    How is it more than speculation? There haven´t been any studies showing that it has a lower specificity than other Lyme tests, so it must either be speculation or hearsay based on unpublished results.
     
    Last edited: Jan 12, 2016
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  7. msf

    msf Senior Member

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    I guess perhaps you meant that it hasn´t been validated by an external group yet, but as Valentjin pointed out in another thread, that´s really up to the doubters to arrange, they´ve had enough time already. Why don´t you suggest it to some of the Infectious Disease doctors you know?
     
    Last edited: Jan 12, 2016
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  8. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I think it is up to the people selling the test to arrange.
     
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  9. msf

    msf Senior Member

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    To arrange for other groups to externally validate their test? Is that how it normally works?
     
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  10. msf

    msf Senior Member

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    To me it seems like those ID docs are probably quite happy that no one has externally validated the test, since it means that they can point to that as the test´s main shortcoming. If it were externally validated they would have to come up with subtler arguments against it.
     
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  11. msf

    msf Senior Member

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    I will provide one free of charge: even if it does (with a high degree of specificity) show that someone has been exposed to Borrelia Burgdorferi, how do we know that the infection is still active? The makers of the original test have already anticipated this concern in creating their new test, the LymeSpot, which is supposed to show whether the infection is still active by measuring the ratio of Interferon Gamma to IL-2. Whether the new test is sufficiently sensitive to distinguish between active infection and past infection is another question. This is why BCA, Armin and KDM use these tests to inform their clinical diagnosis, not as a substitute for it. In this regard they are no different from the Western Blot or Elisa, as these also require the treating physician to judge whether there is an active infection or not.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member

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    You clearly do not know the ID doctors I know. I think it is unhelpful to suggest there is some sort of conspiracy going on. The ID physicians I know have no axe to grind against anything. They are just trying to do the right thing by patients in a system without enough resources. I wouldn't blame them if they refused to see Lyme cases because there is so much poisonous stuff around about them being unhelpful, but fortunately the ones I know insist on going on trying to help. Maybe because they are women.
     
  13. msf

    msf Senior Member

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    I wasn´t suggesting a conspiracy, just that doctors like everyone else have their biases, or their preferred explanations. I would suggest that you are biased towards an autoimmune explanation for ME. I believe that the ID doctors you know are biased towards the IDSA´s explanation of what Chronic Lyme is.
     
  14. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Why do you think I am biased towards an autoimmune explanation? I have indicated that I think it is plausible that that might be one of the causes, largely for system dynamic reasons, but I am not of the opinion that it is the case. You seem to have some fairly strongly held beliefs, I admit. And why should my colleagues be biased about Lyme? You have absolutely no reason to think that they should be, let alone believe it. As far as I can see that is an uncalled for insult. Fortunately these physicians will not mind. But one of the things we can do usefully on PR is make it clear to the medical world that we do not go in for irrational beliefs. Sniping at NHS professionals seems to me to be something we could do well without too. There are some notable exceptions who have made fools of themselves by indicating their own irrational beliefs but that is another matter.
     
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  15. msf

    msf Senior Member

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    Yes, I am biased towards an chronic infection explanation for ME. Perhaps it would be better to say that you are biased against a chronic infection explanation for ME, rather than towards an autoimmune one in particular.

    Perhaps we are using the term ´bias´ differently. I did not mean it as an insult. In the field of history it is assumed that everyone has a bias (even nice guys like Nelson Mandela and Gandhi). To the historical mind it is the unavoidable consequence of people having different genetics, educations, social positions and so on.

    I think if you ask them yourself whose approach to Lyme they are more comfortable with, the IDSA´s or ILADS´, most of them will say the former.
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I should not think they are the slightest bit bothered by the 'approach' of organisations in another country. They just read the literature.
     
  17. msf

    msf Senior Member

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    Well, I´m sure the people in both those associations just read the literature too, but they happen to have two different approaches to Lyme.
     
  18. msf

    msf Senior Member

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    Here is a quote from a HPA document on Lyme Disease and Services in the HPA

    http://www.hse.gov.uk/aboutus/meetings/committees/acdp/161012/acdp_99_p62.pdf

    The International Lyme and Associated Disease Society (ILADS) guidance is at variance with the
    internationally accepted position, recommending prolonged courses of antibiotics for "refractory"
    Lyme disease and the use of combination therapy. A number of independent practitioners and
    private clinics have produced complex cocktails with multiple drugs given concurrently or
    consecutively for months at a time (see e.g. http://lymedout.wordpress.com/) . No microbiological

    or clinical trial evidence supports this approach. A number of papers have been published that claim
    to test antibiotics in "better" methods than standardised MIC and pharmacokinetic procedures (Sapi
    et al.) and advocate drugs such as tinidazole. The methodology is deeply flawed and there is no
    information on how the results could be extrapolated to an in vivo situation.


    It might be the internationally accepted position, but a summary of the ILADS guidelines are now available on the US National Guideline Clearing House website: http://www.ilads.org/ilads_news/201...the-national-guideline-clearinghouse-website/
     
  19. Hip

    Hip Senior Member

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    I agree it is likely that many patients tested positive for Borrelia by Arminlabs may not be infected with this bacterium (they will have false positive test results).

    Although whether this is a good or bad thing is a matter of debate, because when you have a test like the Borrelia one, which is significantly less than 100% accurate in terms of sensitivity, and imperfect in specificity as well, you are going to get some false negatives and some false positives.

    Remember that:

    In all imperfect tests like the Borrelia test, the testing lab can play about with the numerical threshold for whether a patient is classed as positive or negative on the test. By playing about with the threshold, you can decrease the amount of false negatives the lab gets, but at the expense of increasing the amount of false positives. Or you can set the threshold to decrease the amount of false positives the lab gets, but at the expense of increasing the amount of false negatives.

    With Arminlabs, Dr Armin Schwarzbach may have just set the threshold of his tests to reduce the number of people that get a false negatives on his tests (ie, people who have Borrelia, but are incorrectly tested negative, so will miss out on the benefits of antibiotic treatment); but that of necessity will mean that he is going to get more false positives (ie, people who do not have Borrelia, but are incorrectly tested as positive, so will get antibiotic treatment when they do not need it).


    But the issue here is to try to evaluate the pros and cons of having less false negatives at the expense of more false positives (or vice versa). This is what setting your test's threshold is all about.

    Every false negative means a Lyme patient misses out on treatment. Every false positive means someone without Lyme gets antibiotics when they do not need them (though provided the antibiotics used are well tolerated and with a low incidence of side effects, that may not be problem medically, but will be an unnecessary medical expense; although it will be a problem in the sense that if the patient thinks they have Lyme even though they don't, they may stop searching for other causes of their symptoms).

    So the issue here to set the threshold for a positive test result in such a way that you try to avoid as many false negatives as possible, but without then having an inordinate number of false positives as a consequence. Different Borrelia testing labs will likely have different views on where to set the threshold, and I think Arminlabs probably sets the threshold to try to minimize false negatives, which means Arminlabs will have higher rates of false positives.

    Whereas other more conservative labs may set the threshold to try to avoid an inordinate number of false positives, but as a consequence will get more false negatives.
     
    Last edited: Jan 13, 2016
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  20. barbc56

    barbc56 Senior Member

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    I think we can speculate the same thing about the labs in question. They will be happy to keep running the tests, making money off of patients all without validating the test which might turn out to be bogus.

    Of course I am speculating about this.

    Barb
     

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