The 12th Invest in ME Research Conference June, 2017, Part 2
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is Igenex the ONLY reliable lab?

Discussion in 'Lyme Disease and Co-Infections' started by yabby02, May 4, 2015.

  1. yabby02

    yabby02

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    I had a Lyme test run recently, and it came back negative. It was sent to the Mayo Clinic, and they checked for Lyme IgG Western Blot and Lyme IgM Western Blot.

    I did ask my doctor at the time about Igenex labs, but I was told we can't really use them because of insurance.

    If I were to pursue this and press for Igenex ... well, it's just REALLY expensive. Are the tests run at Mayo really unreliable??
     
  2. valentinelynx

    valentinelynx Senior Member

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    Too tired to go into details at this time, but there is plenty of info out there on this topic. The basic problem is that labs other than Igenex may report a "negative" test because the number of positive bands on your Western blot does not reach CDC criteria (which were intended only for surveillance purposes, not for clinical diagnosis), even though the bands that show up on your test may be highly specific for Lyme disease. If the lab that did your Western blot reports the results of all the bands on the Western blot you can still use it to interpret your chances of having Lyme disease. Igenex reports all bands routinely.

    I'll leave it to someone else to tell you which bands are important to look for.

    But also keep in mind that a negative Western blot does not rule out Lyme disease. One reason this disease is so frustrating. A compromised immune system, a bacteria that hides from the immune system and compromised the immune system at the same time leads to an infection that is not easy to pick up on a test of immune reaction to the infective organism.

    Oh, also you have to take into account that the Western blot is set up to the proteins of one strain of Borrelia, while there are hundreds of strains out there and they can change their protein expression even after you get infected with them.

    Sorry this is kind of a mess. Hope it helps a little.

    If you like, you can post the results of your Mayo Western blots and we can help you figure out what they might mean or not. List the bands and the results associated with each.
     
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  3. Helen

    Helen Senior Member

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  4. yabby02

    yabby02

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    This is all the info I have on my test:


    SEE COMMENTS
    (NOTE)
    Specific serologic response to B. burgdorferi infection is
    not detected, but cannot rule out early infection during
    which low or undetectable antibody levels to B. burgdorferi
    may be present. If clinically indicated, a new serum
    specimen should be submitted in 7-14 days.

    -------------------ADDITIONAL INFORMATION-------------------
    CDC criteria require >=5 bands for IgG or >=2 bands for IgM
    for the Immunoblot to be considered positive. Bands
    (e.g.,p41) may be detected in patients without Lyme
    disease, and patterns not meeting the CDC criteria should
    be interpreted with caution.

    Immunoblot should be ordered only on specimens that are
    positive or equivocal by a FDA-licensed Lyme disease
    antibody screening test (e.g., EIA).

    Test Performed by:
    Mayo Clinic Laboratories - Rochester Superior Drive
    200 First Street SW, Rochester, MN 55905
    Laboratory Director: William G. Morice, II, M.D., Ph.D.
     
  5. Esther12

    Esther12

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    I think that there may be problems with IgeneX, or at least the way in which their tests are often interpreted.

    There's only been one double-blind study testing IgeneX's testing, and that found it to be unreliable... although they have since stopped using that specific test.

    I would be very cautious with any Lyme stuff outside of the 'mainstream'... and a bit cautious with the mainstream stuff too!
     
    Last edited: May 6, 2015
  6. Ema

    Ema Senior Member

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    There is a very long contentious thread on Lyme testing already on this forum which doesn't bear repeating on this thread.

    Succinctly, IgeneX is the gold standard lab at this time for Lyme testing. It's fully certified by CLIA, it's tests are covered by Medicare and there is no evidence of any problems with their testing at this time. They have been proven reliable in order to receive these certifications in all states including NY and CA which have very strict standards.

    Is there a "perfect" Lyme test? No, and that's unfortunate and why Lyme disease remains a clinical diagnosis. But it's the best we have at the moment and we make do with the best testing we have for many other conditions. Lyme is no exception.
     
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  7. Ema

    Ema Senior Member

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    The Mayo test looks to only test using one strain of Bb. There are nearly 40 known strains of Bb and IgeneX tests for more of them.

    IgeneX also uses a higher quality gel medium which improves their sensitivity and reports results on each band as positive, negative or indeterminate. Most other labs report even weak activity on a band as a negative result when most LLMDs believe that any activity on a band is evidence of exposure. Regardless, it's an important piece of information to know the strength of the reaction on each band.

    Mayo also looks like they only reflex testing to blots if the original ELISA testing is positive...this makes me wonder if you did have a positive ELISA test first?

    Either way, if you have symptoms of Lyme disease, I would strongly consider following up with an LLMD and getting better testing.

    From the Mayo website:

     
    Last edited: May 5, 2015
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  8. yabby02

    yabby02

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    this is the first and only test I've ever had in regards to Lyme; I don't even know what an ELISA is. If they tested for it, I was never told.

    what is an LLMD?
     
  9. Ema

    Ema Senior Member

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    ELISA is a testing method. It's a part of the CDC's two tier testing plan but the problem is that it is not specific enough to be used in the way they try to use it. It's no better than flipping a coin yet this is the way most people get tested for Lyme in this country. If the ELISA happens to be positive, then the CDC recommends moving on to the Western blots, which are a better, more specific test, but still only are as good as the testing materials and the strains that the testing laboratory chooses to use.

    An LLMD is a Lyme literate medical doctor...typically one that follow ILADS protocols rather than IDSA.

    http://www.ilads.org/
     
  10. SOC

    SOC

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    How does one find an ILADS LLMD?
     
  11. Ema

    Ema Senior Member

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  12. SOC

    SOC

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    Yeah, but they want all my contact information before they'll give me a "referral". I don't want a referral at this point and I don't want to give out that info to an organization I don't know much about yet. I want to know who are the ILADS doctors relatively near me and to do my own research about who I might want to see.
     
  13. Ema

    Ema Senior Member

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    You could give them a fake name and throwaway email address?

    I don't think it is a traditional referral but just a list of members near you. No one ever contacted me from there to try to set up an appt or anything.

    There are also state specific Yahoo groups that can also tell you who people see in your area.
     
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  14. duncan

    duncan Senior Member

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    I'd call the ALDF and ask them for a list of ILADS doctors in your area.

    I'd call the IDSA and ask them, too.

    While I was at it, I would reach out to the Lyme team at the NIH and see if they had any ILADS recommendations.

    I suspect you won't get any ILADS names, but I will wager you'll have some fun. :)

    P.S. yabby02, don't you do that; the other people that have posted on this thread know that's a silly joke.
     
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  15. SOC

    SOC

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    Thanks, I didn't think of that. :rolleyes: If I'm just going to get a list, that seems like the best way to get one. :)
     
  16. Misfit Toy

    Misfit Toy Senior Member

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    Here's a question....does anyone think there are any reliable tests in the US? I was told you have to send bloodwork to Belgium for accurate diagnosis. This is another WTF disease....

    This is why I scratch my head and say why bother. If you look for dirt, you will eventually find dirt. It's like...keep searching until you find a positive test result. Western Blot was the gold standard, then it was something else...it's ever changing and a whole lot of WTF.

    I believe in Lyme, but how many tests must one take or spend money on?
     
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  17. duncan

    duncan Senior Member

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    There are tests that can be used to help devise a Lyme strategy. The Western Blot is one, but you need to deep-six the five bands mandate, as well as the IgM mandate that says no such thing as positive IgM's beond three months. You need to understand that a negative may not be a negative - that's why a WB is important: It allows you to know which bands are positive, and since certain bands are Bb specific, you can pretty much have a fair assumption if two or three bands lite up that are Bb specific you've got Lyme.

    I am also a believer in the utility of the C6. It is very specific to borrelia, and if you're sporting a positive score post treatment, you got one hell of a strong indicator for an active infection, despite treatment.

    There's also the George Mason urine test.

    So, there are tests. But most labs only look for one strain of one species ( IGeneX uses 2 strains). Most labs wear blinders. So a negative in any of these tests may not be meaningful - then again it might.

    All the while you are juggling in your mind the strengths and weaknesses of a single test for a single strain of a single species, you must never lose touch with the possibility your symptoms are caused by a co-infection like Bartonella or Babesia. Think tests for Bb are a cluster f**K? It arguably just as bad, and in some cases worse for co-infections.

    If it were me, I'd order a Western Blot; I think you get the biggest bang for your buck that way. But go that route and you've a decision of whether to adhere to IDSA.CDC two tier protocol, or go rogue and adopt a diffferenet scheme - say, 2 Bb-specific bands are enough to prompt you to place an order for doxy.

    With the WB, I'd get a C6 peptide, because the C6 peptide, when you run a series of them, can tell you numerically if you are improving or growing sicker.
     
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  18. Misfit Toy

    Misfit Toy Senior Member

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    @duncan -this is when a Lyme specialist is needed and yet the issue I have with that is if you go to one...I truly believe they will automatically diagnose you with Lyme. That's what they know and no one likes the diagnosis of CFS, so let's make it something you can truly treat.

    I am wondering if just going on Doxycycline and bypassing all of the testing is a wise decision. It seems since all of this testing is sort of mixed...treat it....see how you feel and then order testing before going the 2 tiered route. Just a thought.

    I have had the Western Blot and Igenex and then I believe it's called the Spot test and they are all negative. But the doc who does them is straight up CFS. He also had CFS and I don't think he is super knowledgeable about Lyme. Could be wrong, but he knows CFS and that's it. I had Sjogrens come up positive for 10 years and he ignored it and just treated the CFS....bad move.

    I know some with Lyme who become deathly ill from antibiotics and I mean on deaths door and never come back and that's what freaks me out about Lyme. Then....forget going to the bathroom again or having normal stools.
     
  19. duncan

    duncan Senior Member

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    Yes, it's a problem.

    Here's how I see it: Go IDSA, and if you aren't CDC compliant, odds are you won't get diagnosed, and that means no treatment.

    Go ILADS, and they are clinically driven. They will employ Lyme tests, but some might ignore a negative score because clinically, the patient presents with a TBD. That's potentially a dangerous thing to do, on more than one level.

    Also, an argument has been made that some ILADS doctors over prescribe, and this can be very expense - not to mention dangerous.

    So, it's a conundrum.

    Personally, I do my own research, and I can find what works for cases like mine. I share what I have learned with my doctor, and 9 times out of 10, he goes with my recommendation, both in terms of how to read the diagnostics, and what treatment to pursue. But doctors like him are hard to come by.
     
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  20. Misfit Toy

    Misfit Toy Senior Member

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    @duncan -what is an IDSA? Not sure. thank you! Infectious disease? Yes, I have been looking up ILADS and man they are expensive and don't take insurance and yes...it is quite expensive with IV's, etc.
     

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