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Lyme testing

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

  1. roxie60

    roxie60 Senior Member

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    Follow the money....who benefits if IGenex is discredited? Also they have done enough testing to claim 92-97% specificity depending on the test. What is ELISA something like 55% (my memory may be in question but it is much lower than the IGenex tests and nearly all general doctors and some specialist still use it. Seems like ELISA is basically useless, unless one knows they had a tick bite within a couple of weeks of seeing a doctor. But then someone in power benefits every time an ELISA test is run and in nearly half the cases it is a useless use of time, money and blood draw.
     
  2. Ema

    Ema Senior Member

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    But you don't know, because you haven't read the full paper. I don't disagree that it will be critical of IgeneX testing but it seems a bit dodgy to report on a fully certified lab based on what was said by others on the Internet some 12 years ago.

    There was some investigation by NY state into IgeneX about 2000/2001 and they subsequently met all the more stringent requirements of that state for lab licensure except for in the case of two tests that are not offered in that state.

    It isn't "dodgy" testing. It's just limited...as is ALL testing. For example, at LabCorp last week, I ended up getting two CMPs run at exactly the same time on the same blood (two different orders from two different doctors). One would expect those to return the same results, right? Not one of the values from sodium and potassium to AST/ALT were the same. Some weren't even close! Shouldn't LabCorp's CMP be reliable? Or should we throw out all that testing too because it isn't able to be replicated? It's just ONE measure, not dogma from God.

    Ema
     
  3. Esther12

    Esther12 Senior Member

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    But nothing would stop those from selling alternative testing from doing there own blinded assessments of their techniques. Does this sort of work should be seen as a vital cost of doing business for them, before they start selling these tests to the public.

    My understanding is that the mainstream tests have become more reliable over time, and do have evidence for validity. If the mainstream tests are failing to detect large numbers of people shown to be positive with alternative testing, then this would also need to be shown according to the sort of blinded assessment that was used in the case of XMRV. Based on the evidence currently available, there is no reason to believe that the alternative tests are in any way preferable to the mainstream tests.

    I've not looked at the full paper. For me, the absence of good positive evidence for the validity of the Igenex testing means that I would consider it dodgy to sell to patients, even in the absence of evidence showing the testing to be unreliable. That there is also this research investigating validity, which found the results to be unreliable, is just further reason for concern and caution.

    A lab being certified does not mean that the testing it provides is of any value whatsoever.
     
  4. Ema

    Ema Senior Member

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    But the research that calls it unreliable is unreliable itself. That is a big problem.

    A lab being certified means that they have met certain minimum standards in terms of reliability. I sincerely doubt Medicare would deign to pay for any testing that they considered alternative or not medically necessary and they do pay for IgeneX.

    I agree that they could do their own double blinded tests. So could Labcorp and Quest. But they all do their own internal forms of validation and then they are accredited by licensing boards. That is the system. Why should IgeneX be held to a higher standard than anyone else just because people don't "like" what they are testing for? I agree the system needs more transparency but that is hardly the fault of any one specialty lab.
     
  5. Esther12

    Esther12 Senior Member

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    [1] As with XMRV, we do not need testing which is universally recognised as reliable to test the consistency of other tests. That is what was done in the Ignex study, and it was found to be internally inconsistent. Also, we do have evidence showing the internal consistency of

    [2] I think that this was discussed in this or the other thread, and certification just meant that they had to use certain procedures, give their staff certain training, etc. It did not mean that the validity of the testing had been assessed in any way. re Medicare paying for tests: I have no idea. If medicare have evidence of these tests validity, then they have not made this publicly available.

    [3] I think that all tests should be assessed under blinded conditions before they are sold to patients. Otherwise it's impossible for patients to make informed decisions about the value of the test results they receive. I'm only mentioning Igenex because others have, and there is a published paper on their testing being assessed under blinded conditions. For me this is not about one lab, but about what patients should be able to expect from all those selling medical testing. There does seem to be problems around Lyme testing, and I took the time to do a fair bit of reading on this a few years ago, so I'm more aware of the problems here, but I think that these minimal standards need to be lived up to everywhere.
     
  6. Ema

    Ema Senior Member

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    I
    Then we would have essentially no testing, if those are the standards we have to meet.

    That doesn't work for me and that is why I partner with smart, curious doctors. They help me parse the good with the bad and settle on appropriate treatments informed by imperfect testing.
     
  7. Esther12

    Esther12 Senior Member

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    I'm not sure what you mean here. Lots of medical tests have been assessed in the way I suggest is necessary.

    If you mean for CFS, then there are lots of tests which can help identify alternative/additional diagnoses and medical problems. There isn't a diagnostic test for CFS, but I don't see that as a reason for patients to turn to testing which has not been able to show it is of any real value. It's up to all individual patients to decide for themselves how to respond to their illness, and I certainly respect your right to settle upon any course which you choose for yourself, but I think it is difficult to give truly informed consent when one does not have access to blinded assessments of the reliability of the testing being used (although that you are aware of these problems and decide to proceed anyway certainly does make it less problematic). I do think it is dodgy that these sorts of tests are being sold as reliable to patients without having provided published information from blinded assessments.
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Is anyone get cd57 lymphocyte tests done as i understand it is generally low in chronic lyme cases.
     
  9. Ema

    Ema Senior Member

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    The reasoning just doesn't hold water for me.

    Even the viral antibody tests used by top experts in the field are subject to interpretation. So are hormone tests and the tests for immune system function. None of these tests are perfect but all provide useful information that can help people feel better. None of them have the type of testing you describe and all have limitations. So why are they acceptable and Lyme testing is not?

    Standard of care left so many of us lacking and in the dark. I can't see gong backwards and ignoring progress just because medical science hasn't done all the perfect tests. The truth is that the perfect tests may never be done because of reasons that have nothing to do with science and everything to do with politics.

    I would never want to discourage people from getting testing that might change their lives like it has changed mine. Everyone deserves that chance.

    I think it would be really hard to live in a world where nothing is worthwhile without some completely unattainable level of proof.
     
    SOC likes this.
  10. Ema

    Ema Senior Member

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    It's being done less because it can be low or high. If low, it can be from other causes. And some people improve when their counts improve but some don't and vice versa. Some really sick people have normal counts and some mildly ill people have low counts.

    Unfortunately CD 57 testing isn't specific enough to be diagnostic for Lyme. It can be another test that is used as part of the puzzle though when used by a competent doctor.

    It's not a perfect test though so I suppose we should never use it!
     
    snowathlete likes this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I just read some info from infectolabs and it said that nk numbers ie cd3 and cd56 are generally also low, for me cd3 is always high and cd56 within range. Thought it might give me an idea as i think i have an underlying bacterial infection as i feel alot better on abx. if i did have lyme then i have taken abx long enough to have sorted it out??
     
  12. roxie60

    roxie60 Senior Member

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    Yes, just had CD57 done last week and I was LOW (below range) doctor now finally suspecting Lyme after many years and just sent off blood to IGeneX for testing.
     
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  13. roxie60

    roxie60 Senior Member

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    Here is a rather dated article but I think lays out each test available and the potential usefulness. Also mentions the early error regarding diagnostic guidelines that were never intended but became standard and result in missed diagnosis. Emphasis is on clinical dx with testing used as just a tool. Educational on ELISA, IFA, WB, PCR.

    http://www.igenex.com/labtest.htm
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    So would it be best to get a cd57 test done first and if low then get the other lyme tests done. I ask this as its not cheap getting lyme tests in australia and im guessing that a cd57 test should be free for me here as i get other lymphocyte tests done for free under our health system.
     
  15. roxie60

    roxie60 Senior Member

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  16. roxie60

    roxie60 Senior Member

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    Probably a crap shoot .... as Ema indicated it has been reported that people who feel well have low values and people really sick have high values. It is hard to know what to do but I decided to explore if I have Lyme based on this cd57 result.

    My insurance did cover the CD57 (at least I think they will have not got bill yet for all the latesst blood tests). The IGenex test I am not sure yet because I have to wait for IGenex to send me a receipt so I can submit it to my insurance company and see if they will cover any of it, currently I do not know if they will and the initial Lyme panel was $475 US dollars.

    There was a note on the CD57 test result indicating it is currently not used for diagnostic purpose (I gather it has not yet received the blessing of those in power) hense the reco from my doctor to get the IGenex test. I was reluctant since I am so sick of doctors and testing but desparate for answers so I can improve my health. Also only two labs in US are said to actually properly perform the CD57 test (it has to be processed in short time span (12 hours?, and of course I had to trust the lab was completing the test on time). I gather more than 12 hours and the results could be questionable. So the lab that performs the CD57 has to understand the requirements. Hope that helps Heaps and good luck.
     
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  17. roxie60

    roxie60 Senior Member

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  18. roxie60

    roxie60 Senior Member

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  19. roxie60

    roxie60 Senior Member

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  20. Esther12

    Esther12 Senior Member

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    I'm not asking for an unobtainable level of proof. I'm asking for evidence which could be easily achieved by tests which were of value. There may be periods of time where a really useful and important new technique has emerged, and has not yet had published research to show it's value... but this should not be decades! If the research being done shows that the techniques developed and used a decade ago do not hold up under blinded assessment, then that is reason to be sceptical of new techniques which are being sold by the same people as valuable, but again lack good supporting evidence.

    There is difficulty with funding, but for labs like Igenex, profiting from the sales of their tests, providing evidence of their validity should be seen as a normal cost of doing business.
     

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