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Lymes disease testing options HELP

Discussion in 'Lyme Disease and Co-Infections' started by Deltrus, Jun 22, 2017.

  1. Deltrus

    Deltrus Senior Member

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    I live in Canada and am currently looking to get tested for lymes. The single Canadian test came back negative. So far it is quite confusing on how to get tested and not get false positives.


    My uncle got the Igenex test, but apparently that has had a very high false positive rate in 2014?

    http://forums.phoenixrising.me/inde...-57-5-false-positive-rate-im-horrified.49417/

    Is igenex still bad in 2017 or what?


    Also there seems to be a new tests coming out. Tickplex from armin labs was supposed to come out in late may but I don't see it on their website? This pdf says thye have it and it has 98% specificity. This means thta there is only a 2% chance of getting a false positive, correct?

    And then there is lymedx from ceresnano that is fairly new, what does everyone think of this? https://www.lymedx.com/

    I would be very greatful if someone could enlighten me on what is the best approach to diagnosing lyme.
     
  2. Mel9

    Mel9 Senior Member

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    NSW Australia

    Firstly: why do you think you might have Lyme (Borrelia inection)?

    (What are your symptoms?)

    It is much more likely to have a false negative than a false positive test result
     
    wherearemypillows, duncan and Deltrus like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I doubt there is any point in shopping around for tests. Lyme disease can only be diagnosed by a doctor who can interpret the tests on the background of your history. Moreover, I doubt that any tests beyond the one Used by the health care system are worth having.
     
    Thinktank and Deltrus like this.
  4. Deltrus

    Deltrus Senior Member

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    Thanks. Honestly I don't even think I have lyme, my symptoms are very bad fatigue, unrefreshing sleep, muscle inflammation and imbalance, jaw joint inflammation, lots of overwhelming and annoying headache/burning/buzzing sensations around the head and chest. When I exercise I get a sore throat, becoming itchy, and very uncomfortable. Sometimes after exercise I feel like fainting. But I don't get significant PEM, my fatigue waxes and wanes randomly.

    My mom is the one who is constantly having some sort of anxiety "but what if it is lyme and it is treatable?" because my uncle got better on antibiotics and got a test from igenex. She gets her information from bad sources and I have a hard time convincing her they are bad.
     
  5. Deltrus

    Deltrus Senior Member

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    Is this really the case? Because the one study said igenex gave 40% false positives, if the false negatives were high as well then that would be very rediculous. I hear the standard doctor provided tests have a lot of false negatives, though.
     
  6. duncan

    duncan Senior Member

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    But who can't do that?

    I recommend the usual battery, i.e., if you can get a Western Blot, do so, and if you can get the C6, get it. Even if you get both of these, they can be wrong.

    But their results narrow the possibilities.

    Edit to add: Where it gets interesting is what @Jonathan Edwards alluded to: the interpretation. The only way to moderate that is to educate yourself; sorry, no short cuts.
     
    Last edited: Jun 22, 2017
    Mel9 likes this.
  7. Jonathan Edwards

    Jonathan Edwards Senior Member

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    The great majority of doctors. Only inflectiousdisease specialists with considerable experience are likely to have a clue. Just as the great majority of doctors have no real idea what to do with a rheumatoid factor test.
     
  8. duncan

    duncan Senior Member

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    Where I come from, it would be the sad exception that wouldn't have a semi-informed opinion.

    Maybe 20 or 30 years ago that statement might align with the real world, but today, not so much - at least not in the US. I'd be interested in reading why you would think so, though.
     
    Last edited: Jun 22, 2017
    Mel9 likes this.
  9. barbc56

    barbc56 Senior Member

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    Because of the scientific evidence? Infectious Disease doctors have years of experience studying these conditions.

    If you are referring to LLMDs, you don't have to have these qualifications. Any doctor can call themselves an LLMD but it doesn't necessarily mean they have the same training.

    http://www.thedailybeast.com/predator-doctors-take-advantage-of-patients-with-chronic-lyme-scam
     
    Last edited: Jun 25, 2017
  10. duncan

    duncan Senior Member

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    Yes. And if I had to pick, I'd run with an infectious disease doctor. But any GP can make a Lyme call if you embrace IDSA criteria. All the major labs supply that sort of insight (i.e. whether a patient satisfies the criteria) for the ordering doctor. In the US Rheumatologists can and do make that call quite frequently. Come to think of it, isn't Alan Steere a Rheumatologist?

    The point is, there is no mystery to making a Lyme diagnosis if you subscribe to IDSA doctrine. But if you see limitations in that doctrine, then one needs to know more as to the nature of those limitations. The average ID guy is likely not going to be familiar with the back roads of that terrain - few clinicians of any sort are.
     
    Last edited: Jun 25, 2017
  11. nyfirefly11

    nyfirefly11

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    1st, you want to find an LLMD, ideally (healing well forums may be able to help).

    2nd, do the Stony Brook University (if you can get it done in Canada) and do Igenex Western Blot and PCR. I you can do the co-infection tests too, do those.

    Other sites are BetterHealthGuy and Stephen Buhner works.
     
  12. Daffodil

    Daffodil Senior Member

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    @Deltrus I tested negative to every test in the USA, including Igenex. Then, I tested positive to the LTT ELISPOT from Germany (Armin or Infectolabs). I am in Canada also
     
  13. barbc56

    barbc56 Senior Member

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    I'm not that familiar with Armin/Infectolabs so need to find more information.

    No disrespect, but one scenario. might be that the LLT test is not valid for diagnosing Lyme.
     
  14. Daffodil

    Daffodil Senior Member

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    @barbc56 its one of the tests used by the world's best CFS doctor....and the antibiotics helped me a lot.
     
    Mel9 likes this.
  15. valentinelynx

    valentinelynx Senior Member

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    Tucson
    Read Cure Unknown by Pamela Weintraub. She is a reputable science writer whose family was devastated by borrelia infection (Lyme disease is a colloquial term for this). Initially skeptical of the seemingly hysterical group touting "chronic Lyme disease" in the face of the accepted word on the matter (IDSA stance) she did her research. It is truly astonishing, when you look into it, the good scientific work that is being overlooked in the name of "what is known to be true..."

    Meanwhile, I suggest you also look into Mast Cell Activation Syndrome (MCAS or MCAD): your exercise-related symptoms: "When I exercise I get a sore throat, becoming itchy, and very uncomfortable. Sometimes after exercise I feel like fainting" suggest to me you might have this. Just to confuse things, MCAS often accompanies both ME/CFS and tick-borne diseases (and Ehlers-Danlos Syndrome just to throw another thing in the pot—oh, and don't forget POTS!)

    sorry, I shouldn't be writing right now... :p I hope you find the answers you need.
     
    voner likes this.

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