Questions About EBV and Lyme

Discussion in 'Lyme Disease Archives' started by pw7575, Oct 17, 2008.

  1. pw7575

    pw7575 New Member

    As some of you know I was just diagnosed with Lyme Disease last Friday so I am new to all of this. I tested IGM positive on a Quest Diagnostics Lyme test (I was positive on bands 23 and 39). I am still doing research but do have a question about how Epstein Barr (EBV) and Lyme are related.

    My question is on false positives.

    I have read all the info about western blot tests and what the results mean etc. I have read that if you are sick longer than one month and test positive with only IGM that it may be a false positive (my test results have that same disclaimer on it). BUT I have also read that some people only test positive with IGM even years after the onset of Lyme Disease. So I am not sure what to think about my test results. I have read that false positives aren't that common so I am inclined to believe I am actually positive.

    However...On one hand I have read that certain other illnesses can cause false lyme positives such as Epstein Barr, CMV, etc as well as rheumatic conditions. So I guess I need to be tested for these things to rule out a false positive? I plan to have my doctor run many of these tests for me on Monday if he will. My initial diagnosis 7 years ago when I first got sick was that they thought I had EBV (wasn't positive for an acute infection but had very high numbers) so I am not sure where I stand right now on EBV and how it might affect my Lyme test. I guess I need to rule out a reactivation of EBV causing a false positive?

    But on the other hand I have read that Lyme can cause us to become susceptible to other viruses or for them to come out of being dormant etc like EBV and CMV and HHV6 so these things can be present in people with Lyme.

    So I am confused. Does Lyme cause these other things to be present in high numbers or active in our blood OR do these other things cause false positives on Lyme tests?

    All this stuff is so confusing. I do think it is possible that I have Lyme but I guess I am nervous of finding out that it is a false positive. After 7 years of being sick I finally have a diagnosis (other than CFS which really means nothing other than you are sick and we can't help you). So I finally have a diagnosis and can get treated for something. So I guess I am just worried about having a false positive and going back to having an illness with an unknown cause and no real treatment. Lyme is awful but at least I know what I am dealing with and there are treatments for it.

    I thought the bands I had were very specific to Lyme. I didn't know that they could be a false positive from some of these other things.

    So can anyone clear this up for me?

    Thanks!
    Pam
  2. redhummingbird

    redhummingbird New Member

    Hi Pam-

    It's that which came first question-the chicken or the egg.

    I don't know much at all about Quest labs. I think it's pretty difficult to get a false positive.

    Lyme can bring down the immune system causing viruses like EBV, HHV 6, CMV, and others to reactivate. On the other hand, a damaged immune system can allow opportunistic bacterial infections to develop.

    Regardless, the lyme needs to be treated. Only time will tell if treating lyme will be enough. Some people get well by treating lyme, thus allowing the immune system to take care of the viral issues. Others, find they need to take an antiviral to treat the viral issues.

    In my opinion it's far more difficult to get a false positive, especially through Quest, than it is to get a false negative.

    Hopefully you'll find an LLMD who can treat you.
  3. pw7575

    pw7575 New Member

    Thanks for your response. I guess it does sound like it is pretty uncommon to get a false positive. It sounds like most people have a hard time getting any sort of positive from Quest even if they do have Lyme.

    I think this is probably an actual positive result and that I do have Lyme. I was just so confused on all of the EBV stuff. I guess all that stuff is pretty tricky. It does make sense that people with Lyme could have other things as well since it wears down your immune system.

    I have an appointment with an LLMD in 3 weeks. That is the soonest they had. So I am sure they will be able to help me more with all of this.
  4. redhummingbird

    redhummingbird New Member

    Pam-

    Good. I'm glad you'll be seeing an LLMD. It's also part of the process to have questions like you do. I don't know of anyone with chronic lyme who doesn't have elevated titers for EBV. It doesn't make the lyme less real.

    I wish you the best on your journey of recovery...
  5. mrdad

    mrdad New Member

    I too have Lyme and have had Mono in my College Days and
    who knows what other undetected bugs. You might consider
    getting a 2nd opinion thru an Igenex Lab Test. Even they
    are only about 70% accurate but highly regarded. See their
    website at Igenex.com It may help alleviate many of your
    concerns. A means of comparison may be of help to you.

    I also have CFS and am convinced it is a resultant of Lyme etc.
    rather than an illness "of and in itself".

    I wish you wellness,
    MRDAD
  6. pw7575

    pw7575 New Member

    Thanks so much to both of you.

    I think I just needed some assurance that this is actually a positive test. Like you said...I guess it is probably just part of the process to have these questions.

    I am going to try to get my regular doctor to order the Igenex tests on Monday. I want to do an Igenex test anyways to check for co-infections so I might as well throw in another Lyme panel just to hopefully alleviate my concerns.

    I don't know why I am questioning this. I am sure I do have Lyme. I guess I am just scared of going back to the unknown if someone comes back and says oops we were wrong you don't have Lyme.

    Thanks for the input! What both of you said did make sense.

    Pam :)