what's the most reliable test for lyme?

Discussion in 'Lyme Disease Archives' started by Catseye, May 25, 2008.

  1. Catseye

    Catseye Member

    I thought I'd come ask the experts. All this talk of lyme combat has got me wondering. I had a test years ago when I first got sick and it was negative. I don't remember what it was, I don't believe it was anything special, just something the doctor ordered. But my new doc says, and so do lots of you guys, that many people test negative when they're not.

    So what's the best test and about how much does it cost?
    I imagine my current treatment is not going to change much, the gut dysbiosis has to be fixed whether there's lyme or not, but the doc did say lyme's particularly nasty to treat and there's a whole slew of supplements to take for it. He sounded pretty confident about helping me whoop it if need be.

    Looks like I'm having a tough time convincing people they need to check the state of their guts like some people are saying we should all be reliably tested for lyme. I'm sure about the gut thing, so I'm looking into the lyme thing. After all, it can't hurt and we have to cover all bases to get well, right?

    thnx

    karen
  2. erica741

    erica741 New Member

    Hi Karen,
    The consensus seems to be that the Western Blots through Igenex lab are best.

    http://igenex.com/Website/

    This is the test requisition form and the specific tests to order:

    http://igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf

    #188 Lyme Western Blot IgM
    #189 Lyme Western Blot IgG

    If you have or may have viral issues, you may want to also go ahead and order the 30/31 band confirmation tests. EBV and other viruses can give false postives on bands 30 and 31, so the confirmation tests will be able rule out false positive on those bands.

    The confirmation tests are:
    #488 30-31 kDa Confirmation IgM
    #489 30-31 kDa Confirmation IgG

    Your lab might not understand the draw requirements, so you can also call Igenex and request the kit they send out for the initial lyme tests.

    I'm glad you are going to take this simple extra step to rule out (or maybe even diagnose!) lyme disease.

    Good luck!
    Erica
    [This Message was Edited on 05/25/2008]
  3. buttercakes

    buttercakes New Member

    Karen, sounds like your on the right track already, I was very ill last summer and was tested for lyme 3x using Quest
    and came up negitive every time. I finally found a Dr. who
    used Igenex, and tested positive the first time.(even CDC positive) The treatment is long and hard, but worth going through to get well. good luck Sandie
  4. EricaCFIDS

    EricaCFIDS New Member

    It's nice to see you over here and very smart of you to rule out lyme, especially considering your experience with ticks!

    I've done the Western Blot test through IGENEX several times with significant activity on specific bands, but still "negative" results. I took Doxycycline for 3-4 weeks and was amazed at the change in my energy and cognition, among other things, so I am convinced I need to go in this direction.

    I am very interested in as definitive an answer as I can get, so my LLMD suggested I do the urine antigen test through IGENEX. He is putting me on 4-5 different classes of ABX for a 5 day period (the first 2 days are Bicillin injections) and having me take urine samples throughout. If I truly have lyme, then pieces of the dead organism will be detected in my urine. It's a fairly "absolute" test when done correctly. The different classes of ABX will find the lyme in all of it's forms and places (hiding inside of cells, in cyst form, etc.) and absolutely kill some of it off.

    Apparently though if I have lyme, I may herx pretty bad on day 4 or 5 or so. It will be an interesting test and I'm up for it. I'm doing it in a few weeks, so I will post back on how it goes and what I learn.

    Good luck in your path of testing! I think IGENEX is definitely the lab of choice! Finding an LLMD to interpret the results would be ideal too.

    All the best,
    Erica
  5. Catseye

    Catseye Member

    Sorry, I couldn't resist, you just gotta love that term!

    Okay, gotcha. Thanks, guys. I'm going to print this out and talk to my doc about getting tested.

    hotpepperfan - they're basically the same where we're concerned. Gut dysbiosis means you have an overpopulation of the bad gut flora, and that includes yeasts and bad bacteria. The term leaky gut is what happens when it has been going on long enough to disrupt the integrity of the gut lining. By then, you can't digest your food so undigested food becomes a poison, going through the gut lining and into the blood stream. Now your immune system is busy with "food" along with an infection. I can see how a bad gut will predispose you to all sorts of infections since the heart of the immune system is in the guts. Bad digestion and compromised immune system means any opportunistic infection can come along and mess you up.

    And even if you have lyme (or any other particularly nasty virus or bacteria lurking), you still have to fix the gut whether or not you fix the lyme. Once digestion has been badly disrupted and the gut flora is way out of balance, it won't be able to fix itself. A specific diet and supplements will be necessary. I would fix both at the same time: the infection AND the gut dysbiosis. Any use of antibiotics will probably worsen the gut problem so keep that in mind.

    thanks everyone

    karen
  6. victoria

    victoria New Member

    glad to see you're investigating this!

    all the best,
    Victoria