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Anyone familiar with My Lyme ID - a new test from Pharmasan labs

Discussion in 'Lyme Disease and Co-Infections' started by JanisB, Jun 22, 2011.

  1. JanisB

    JanisB Senior Member

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    My Dr. did this new test and, after years of coming up negative for Lyme, I came up positive on the part that tests the cytokine response. I was equivocal on the antibodies and negative on the Western blot. I'm not sure what to make of these results.

    My Dr. (Vinitisky) says it means I have Lyme (as well as CFS, mold illness, and whatever :D else seems to be the 'in' thing to have). Last year Dr. Lerner in Michigan said I had 'serum negative Lyme' meaning he thought I had it even though it wasn't showing up in tests.

    Anyway, I want to find out more information about this kind of testing, but everything I search gets me to the lab that does it and nothing from an independent, reliable source.

    JanisB
     
  2. illsince1977

    illsince1977 A shadow of my former self

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  3. redo

    redo Senior Member

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    There is no good way of either excluding or confirming lyme, but many do improve quite a lot when they are given long term combination treatment for it. I am guessing you had a "6" on your Western Blot if it was a Microgen WB. Many interpret that as that you have lyme if the symptoms fit, many also interpret that as negative. So it's not easy.
     
  4. Athene

    Athene ihateticks.me

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    I don't know this test.

    I'm not sure what the "equivocal on antibodies and negative on Western blot" means. As far as I understood it, the western blot is what looks for antibodies.
    Some doctors say you have a negative western blot when others would say it is positive - thay haven't agreed on which bands are Lyme specific and which could be triggered by some other infections. There are 32 different identified strains of Borrelia and they each trigger different bands more easily. It would be good if you could find out exactly which bands were positive - these is a website which tells you the exact meaning of each one.

    Also, some people have a borderline or totally negative Lyme test because their immune system is so badly suppressed by the infection, then after about 3 months or so on antibiotics, their antibody levels are suddenly really high, as their immune system starts to wake up.

    Finally, all Lyme doctors look at CD57, the main marker of Lyme suppression of the immune system. If that is low, there is an extremely strong case for Lyme based on symptoms and this result alone, even in the absence of specific antibodies.

    I hope this info helps.
    I can also direct you to a good Lyme forum if you want to enquire there a well regarding this test you've done.
     
  5. JanisB

    JanisB Senior Member

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    Wow! A lot to look into.
    What I gathered from reading last night is this:

    1] when the Borrelia burgdorferi antigen is introduced to my white blood cells, I get a cytokine/chemokine response in terms of an increase in 4 out of 5 of those measured, but my baseline is already high on two of those.
    2] At the same time, I had a weak antibody response to two of those antigens, but no response (e.g. negative) to the other three.
    3] For the Western Blot, the only positive band I had was IgG p 41; the others were negative, and two IgM bands p. 23 and p 36 had a very weak response which they called 'equivocal' They didn't even seem to measure band 57 on this test.

    These are the antigens/mitogens used for the antibody response:
    OspC - Early antigen appears shortly after tick bite or transfer of the spirochete
    p41 - Early and late antigen that provides mobility to the spirochete
    VlsE-1 - Late antigen appears after spirochete infection
    p100 - Late stage antigen
    DbpA - Essential protein needed for overall virulence

    My mild antibody responses, e.g. equivocal, were to VisE-1, and to OspC

    Now I know they got a big grant to do this innovative research. I'm just wondering if the low antibody response and lack of bands on the Western Blot indicates immune suppression, letting Lyme run rampant, or whether it could mean I had exposure once and got better, or whether my immune system reacts to the antigen because it is similar to something else I encountered.

    I certainly don't want to take antibiotics. They always make me feel crappy.
     
  6. floydguy

    floydguy Senior Member

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    I had this test done. I am not sure what to say except that Klimas wasn't all that impressed with it but of course she isn't a Lyme doc. I am curious to hear anything that you dig up on the relevance of the test. Lyme makes a lot of sense for me but loads of anti-biotics didn't make one difference in any of my symptoms.
     
  7. WillowJ

    WillowJ Senior Member

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    if my cd57 is super low, and I had a bullseye rash and positive ELISA at one point in my life, do I really need to spend $250 on Igenex Western Blot?
     
  8. Athene

    Athene ihateticks.me

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    Personally, I don't think so. I think this is absolutely definitive proof.
    But many doctors think you have to follow up a positive ELISA with a western blot for confirmation.
    It may make the difference as to whether your doctor is willing to prescribe you truckloads of antibiotics or not. Some doctors get a positive Western blot and still say no. So I would certainly check his policy before spending the money. Or else just go to a Lyme literate doctor right away.
     
  9. Athene

    Athene ihateticks.me

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    Hi Janis,
    I'm afraid I don't know what this cytokine business means, but why not try posting a copy of this message on this Lyme forum? Someone there may know about it.
    http://health.groups.yahoo.com/group/EuroLyme/

    CD57 isn't one of the bands of the Western blot, BTW, it is an immune system measure that has to be done separately. I would try to find out about getting that measured if I were you, it's very important in Lyme testing.
     
  10. WillowJ

    WillowJ Senior Member

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    thanks much. he is supposed to be Lyme literate, but he doesn't have tons of experience... however I would have to drive 3-4 hours or more (each way), to get to a LLMD with more experience
     
  11. Athene

    Athene ihateticks.me

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    Is he a member of Ilads? Some doctors say they are "Lyme literate" but they aren't really. I would only trust one who is a member of Ilads, as this means they follow Ilads diagnostic guidelines and attend the conferences to keep up to date with treatment research.
    If you go to Ilads.org you can email them to find out about him.
    I actually had to fly to another country for my Lyme doctor! But only once, now he does all appointments by phone. Which is better for me, as it is actually less tiring phoning him than going to my local doctor!
     
  12. pine108kell

    pine108kell Senior Member

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    Of all the facts you have presented, the comment above most suggests lyme could be an issue for you than any of the immune testing. Not saying this proves you have it, only that it is the best evidence you presented in my view.

    I learned many years ago that no one really understands the testing for lyme. Igenex gives different results than other labs, CD57 may not be specific for lyme etc, etc. I don't understand all the testing, maybe there are some new things, but it seems to be rarely helpful. Few cases are really clear cut.

    However, most everyone with lyme feels really horrible in a big way on antibiotics (herx) and I don't mean the typical side effects. Possibly those with other chronic bacterial infections do also but this is classic for lyme.
     
  13. soxfan

    soxfan Senior Member

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    I have had 3 WB tests done through Igenex and they all only had 41+. I also had some that were IND but in my opinion that means nothing. I was seeing Dr. H in New York and he said that having a 41 positive doesn't mean much and that most people have a response to that particular band. I also had a very low (21) CD57. After 30 months on abx with no resolution of my symptoms I would say I didn't have Lyme.
    I also just tested positive on the Elisa but then it was sent to Immungen for confirmation and they found no antibodies. I was also told that bacterial or viral infections can cause a postive Elisa test.

    In my case I believe I was misdiagnosed with Lyme when I had CFS all along...I also want to add that I felt terrible on abx but never got rid of my symptoms.
     
  14. WillowJ

    WillowJ Senior Member

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    I don't know about Ilads membership. That's a good question. Thanks so much. I'll follow up on that! Appointments by phone sounds really good right now, lol. :)
     
  15. pine108kell

    pine108kell Senior Member

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    Your conclusions may be correct; however, just because you have lyme and herx on antibiotics does not mean you are going to get well. Antibiotics are usually not a particularly effective treatment for eradicating chronic lyme--it is just the only recognized treatment for most doctors (and most do not even do that). I think it is also possible to have this disease we call CFS and have chronic lyme--and this may be common--although no one really knows what the relationship between the two might be. I tend to think "CFS" may be the bigger beast and lyme is on for the ride, but who knows?
     
  16. Athene

    Athene ihateticks.me

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    Hiya Pine,

    For what it's worth, My Lyme doc thinks that chronic Lyme starts people on the way to CFS, and it turns into CFS either if it goes untreated for too long and reaches some horrible point of no return, or else in the presence of some other chronic infection (he mentioned parvovirus and a few others) that seem to render Lyme incurable. This does make sense to me. He thinks other people can end up with CFS without Lyme, as a result of various other combinations of more than one infection at the same time which the immune system cannot deal with.
    As far as I know this has not been researched at all, though a lot of us here do know we have several infections that could be candidates for this type of scenario..
     
  17. liquid sky

    liquid sky Senior Member

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    Igenex is a publicly licensed and inspected lab. It does not have to be to operate, but chooses to be to show it's results are not rigged. I trust their results.

    I believe that HGRV's are involved when one has Lyme but cannot recover from antibiotics alone. There are LLMD's who are very interested in the research on XMRV. I took antibiotics for a year and got only worse.
     

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