Best test for Lyme?

Discussion in 'The Best Laboratories & Diagnostic Tests' started by bct, May 21, 2013.

  1. bct

    bct Member

    Can someone PLEASE give me advice on Lyme tests. I have had several Indeterminates on two Igenix test , five years apart. Is there a totally accurate test for those who have "chronic" Lyme?

    I live in Lyme country (NW CA.) and have been bitten innumerable times by ticks (I live in the country, lots of deer and mice), and had a "bulls -eye rash (but doc didn't see it). Oh what to do.

    I have NO arthritic problems, just bad "CFS" starting in '94.

    So I have MUCH INTEREST IN ANY NEW , DEFINITIVE TESTS THAT ARE OUT THERE, IF ANY.

    Blessings,
    Barry
  2. Nanie46

    Nanie46 Moderator

    Hi Barry,
    There is no Lyme test that is absolutely and totally accurate.

    There is a new Lyme Culture test done by Advanced Laboratories in Sharon Hill, PA. It is different and more accurate because the culture is looking for the actual bacteria, instead of depending on an antibody response such as in the ELISA or western blot.

    You can Google "Advanced Laboratories Lyme Culture" and you should find their website.

    With that said, it is important for you to know that a bullseye rash is diagnostic for Lyme Disease.....period.
    When you say you had several indeterminates on two Igenex tests, do you mean that you had some indeterminate bands? Do you mind posting your band results? Or do you mean you had an indeterminate on an ELISA?

    There are some bands that are considered Lyme specific.

    With your history of tick bites, a bulls eye rash and a diagnosis of CFS for 19 years, it would be a good idea for you to see a Lyme literate MD/ND. Many people with Lyme end up with a diagnosis if CFS (or FM).

    Not everyone with Lyme has arthritis. There are many possible symptoms, with fatigue, sleep problems, thinking/cognitive problems and pain being the most common.

    Ticks also spread many other infections besides Lyme. Babesia, for example can cause extreme fatigue, night sweats and other symptoms. Bartonella is another common coinfection and there are many more. Many people with Lyme also have some of these other infections.
  3. bct

    bct Member

    Nanie --- Yes, I meant that I had some indeterminate bands on the Igenix test results.

    2006:

    IGG : **41 kDa IND
    IGM : **23-25 kDa IND
    **39 kDa IND
    **41 kDa IND


    2011:

    IGG: **41 kDa IND

    IGM: **39 kDa IND


    I also got the Multiplex B. b. serum test and whole blood test for DNA sequences (I think that's what they were for). They were both negative. Also negative was the Lyme Immunofluorescence Assay.

    There is a lot of Lyme in my region. I wish I had known of the disease earlier. I focused all my researches on CFS!




    Thanks Nanie,
    Barry (bct)
  4. Nanie46

    Nanie46 Moderator

    Hi Barry,

    Band 23-25 and Band 39 are both species (Lyme) specific.

    See the Diagnosing Later Disease and western blot information near the bottom of page 7 of this paper by a Lyme expert:

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

    Are there any LLMD's in your area?

    BTW, my Lyme tests were officially negative including my Lyme PCR. I had an Indeterminate on an ELISA and some positive and IND bands on my Igenex western blot, although it was read as CDC negative, Igenex negative. I knew from that paper in the link above that I had some Lyme specific bands, so I did not listen to the Dr's who told me I did not have Lyme and I found an LLMD. I improved with long term treatment.
    bct likes this.
  5. vickiw

    vickiw Member

    Hi Barry,

    In my case, all blood tests came back negative. The test that was positive was the Lyme Dot Blot Assay Panel - a urine test. 3 samples came back positive. As Nanie says, no test is 100% accurate, for positive or negative results.

    I also did not have arthritic problems. My worst symptom was orthostatic intolerance, to the point where even sitting up for any length of time was impossible. Forget about standing. That topped the list of many symptoms...

    Vicki
    bct likes this.
  6. bct

    bct Member

    Nanie and Vicki, thanks so much for your input. It is MUCH appreciated. I think I will get my doc to run another Igenix test to compare with my last results. This will be a new doc. Medicare covers Igenix here, otherwise I couldn't afford it, probably. And I will present a written history -- brief and succinct -- to let him know what he needs to know -- i.e. bull's-eye rash, a thousand tick bites, a known Lyme area, etc. etc. And hope for the best.......

    Barry
  7. Nanie46

    Nanie46 Moderator

    Barry,

    You are very welcome.

    You could consider printing the Lyme symptom list on pages 9-11 of the following paper, and filling it out to show your Dr how many Lyme symptoms you have.

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

    In the end, it is very important to remember that Lyme should never be ruled out based on a lab test...they are too unreliable. Lyme is a clinical diagnosis based on your history, symptoms, exam and labs together.

    When you add tick bites+bulls eye rash+chronic fatigue and other symptoms=Chronic Lyme Disease (and possible coinfections). It is likely that only a LLMD will really understand that though. 99% of Dr's really know next to nothing about tick-borne diseases. I found that out first hand and I know of many people who had the same experience. Those non-lyme literate MD's don't treat long term.

    I encourage you to consider finding a LLMD who can really evaluate you properly. If you need help finding one, let me know via a private conversation, or go to lymenet.org and post a request on the "Seeking a Doctor" board asking for LLMD's in your state.

    I will be away from the boards for a few days starting tomorrow, but I'll be back on May 28.
  8. refugiolanier

    refugiolanier Member

  9. tooks

    tooks Member

    Another new and pretty accurate test using different methods is the LTT test from Infectolab in Germany. http://www.infectolab.de/index.php?id=51&L=1

    Getting the blood there fast enough might be tricky though. I had blood drawn when I was in Belgium and combined this test with a PCR that would be followed by genetic sequencing if it was positive.
    Nanie46 likes this.
  10. ladybugmandy

    ladybugmandy Member

    negative everywhere including igenex....years of various lab tests...then positive with ELISPOT test.
    Nanie46 likes this.