Who has tested negative for lyme

Discussion in 'Fibromyalgia Main Forum' started by maps1, Jan 31, 2009.

  1. maps1

    maps1 Member

    Just curious, in the process of doing the Igenex lyme test and was just wondering if anyone has ever tested negative.

    I have not seen anyone mention a negative test but I am not on the board a lot these past few months so have probably missed a lot.

  2. Cinderbug

    Cinderbug New Member

    Oh yes!

    In 2003 I was bitten by a yellowfly and had a very large classic bullseye rash on my thigh that took 3 weeks to fade! It is rare but Lymes has been known to be carried by yellow flies.

    Shortly after that was when my pain symptoms began. My doctor took a lymes test right away, then again in 3 months and again in a year. All three tests were negative and that is when he first dx me with Fibro.

    I now suffer from CFS since after a bacterial infection in 2005.


  3. gapsych

    gapsych New Member

    Good question. I wonder how many have been diagnosed negaive by an LLMD?

  4. victoria

    victoria New Member

    this question has been asked before over the past few years, tho I don't know how well the search feature is working these days. But (if it's working well), you'll find the answer is yes. IGenex reports only up to a 70% reliability rate for detecting lyme anyway so obviously there are many negatives.

    You might like to know that there are more infections than Lyme that can go intracellularly and hide out, such as mycoplasma... many of the abx and protocols used by LLMDs will kill these as well. So you may or may not have lyme and yet get results from the same protocols.. as anyway one usually has more than one infection if bitten by a tick as they usually are carrying more than 1 infection. Or because an opportunistic infection (viral &/or bacterial) helps to further complicate things. LLMDs will also look at viruses.

    Again, keep in mind, one may not have Lyme specifically but can still have other stealth infections, transmitted by ticks &/or other ways (like mycoplasma). Many of the abx used obviously kill more than one organism. And again, LLMDs do look for and treat more than lyme.

    Unfortunately testing for any of these infections, viral or bacterial or parasitic, is pretty unreliable, which is why the CDC says it usually remains a clinical diagnosis.

    Also unfortunately, abx alone, long term or short, may not totally cure 1 person who unquestionably has lyme, while it does another. Seems like, as usual, there is a spectrum of responses.

    The "Why" of the differences in pt's experiences remains the center of controversy. I doubt there will ever be an easy answer, especially if you also add in & consider how opportunistic infections impact as well as one's genetics.

    all the best,

    [This Message was Edited on 02/01/2009]
  5. gapsych

    gapsych New Member

  6. Nanie46

    Nanie46 Moderator


    Here's what happened to me:

    Dec 2007: Had lyme screen (titer or IFR) at my local lab :negative

    Dec 2008: Had Western Blot through Lab Corp: Only band 41 present-interpretation was CDC negative

    January 2009: Had Igenex Western Blot, lyme screen (IFR) and PCR whole blood and serum:
    Interpretation of Western blot was CDC negative, Igenex negative,
    Lyme screen: Indeterminate; PCR was negative.....

    now here is the important part:

    Even though my Igenex western blot was "officially" Igenex negative, I have enough significant species specific bands present to warrant a diagnosis of lyme, along with my history and symptoms.

    This is because Igenex requires you to have at least 2 "double starred" bands present to be considered Igenex positive.

    Lyme expert Dr Joseph Burrascano states in his updated guidelines that you only need to see at least band 41 and one of the species specific bands (18, 23-25, 31, 34, 37, 39, 83, 93).

    I have more than one species specific band present, plus band 41 and others on my Igenex western blot.

    Only Borrelia burgdorferi would cause a person to make antibodies to those bands that are species specific.

    That is why it is soooo important to get a copy of your Igenex western blot and compare it to Dr Burrascano's guidelines. Even a band with a result of IND can be significant.

    If you just take a Dr's word for it that your western blot is negative, you could miss getting a correct diagnosis and treatment which could lead to recovery.

    My western blot done through Lab Corp was a total waste of time and money. They do not test for all bands, and they obviously missed all my postive bands except 41.

    Lab Corp tested for 10 bands on the IgG and only 3 bands on the IgM!!! Igenex tested for 14 bands on the IgG and 14 on the IgM (and that is with 23-25 being reported as one and 83-93 being reported as one!) Plus it is very clear that Igenex was much more accurate.

  7. maps1

    maps1 Member

    I am also going to have the pcr mycoplasma test done as i was positive for that three years ago even without using pcr testing.

    I totally agree with you about getting copies of your test results and i also keep a copy of the requesition, beleive it or not doctors do not remember all the tests they have ordered. I tell my docs I need a copy for my insurance company.

    The last batch of tests done by my doc were actually requested by my naturapath and she was the one who discovered i do not have the results of five of the requested tests, still trying to get them.

    thanks and regards
  8. DiannaS

    DiannaS New Member

    My husband tested negative. I, on the other hand, tested positive. When my test came back positive from Igenex we decided that it would be a good idea that he get tested also. His came back negative.

    That was what my niece's doctor said too...right before he dx'd her with MS. She actually tested positive for Lyme disease from a Quest lab and he said there were not enough bands to indicate a positive result. When she asked about testing at Igenex he said that he would not even draw the blood in his office and that he has NEVER heard of a negative result from Igenex, which is why "well informed, responsible" physicians do not use that lab. She has since switched doctors and is being treated for Lyme. She does not have MS (her neurologist's opinion). Oh, did I mention that she's a Veterinary Technician? Do you think she may be high risk?
    I hope you had a good outcome on your test and/or treatment.
    Be well,
    [This Message was Edited on 06/03/2009]
  9. Hootie1

    Hootie1 New Member

    I may be repeating another post, but... I read that band 41 could also be positive due to an ongoing tooth infection, which I had. I had a cap put on one of my teeth and had to have IV antibiotics 2x.. my band 41 had multiple +'s.

  10. isiselixir

    isiselixir New Member

    I was tested for lyme twice, both negative... not by a LLMD though.
    I'm fairly sure these tests were accurate though, I don't have many of the symptoms that lyme patients have such as pain.
  11. hdparadis

    hdparadis New Member

    also. The funny thing is I was in the Urgent Care Clinic (it was a holiday and my doctors office was closed) with a HUGE bulls-eye rash on my thigh when they took the sample for the test! The rash was the whole reason I went in to be seen because it itched like crazy but hurt to touch so I couldn't scratch. It was driving me nuts!

  12. Nanie46

    Nanie46 Moderator


    A bullseye rash is all you need for a Lyme diagnosis, no testing required.

    Usually an antibody response may not show up that early.

    I hope you have been treated adequately???

    Feel free to leave posts for me on the lyme board if I can help you further.
  13. hdparadis

    hdparadis New Member

    CRAP!!!! I'll see you over on the Lyme board.
  14. Doober

    Doober New Member

    negative testee here.

    Someone mentione getting the bullseye and rash after a yellow tail bite.

    I have read somewhere that any bitting insect can actually transmit Lyme as well as other things. Those nasty mosquitos can carry several diffent diseases and infections that it is just too scary to do anything or go anywhere these days on those wonderful nights in the summer.
  15. Nanie46

    Nanie46 Moderator


    It is important for everyone to know that lyme is never, never ruled out by just a negative lab test.

    Lyme is a clinical diagnosis based on history and symptoms.

    Lyme tests are not 100% accurate.

    The lyme ELISA is not even recommended by lyme experts.

    The criteria for reporting western blot results are simply that....reporting criteria originally created for surveillance purposes, not diagnostic purposes.

    Igenex has the best testing methods and tests for all bands. Most other labs leave out some very important lyme spcific bands.

    You can have a negative western blot or ELISA and still have lyme.....it happens all the time.

    Unfortunately, 99% of Dr's rule out lyme based on just a negative lab test, leaving many people undiagnosed.
  16. meowee

    meowee New Member

    I have been tested twice, negative both times.
  17. jess

    jess New Member

    I had Igenex, with co's and confirmation test for band 31. 41 was +++, confirmation negative and 39 was Ind. My LLMD said negative but have low CD-57. He did many tests including Fry and it was negative for Bartonella. All co's were negative on other tests he did. There is one more which hasn't come back but he doesn't think it is Lyme. So looks like it really is cfs to me. The adaptive or compensatory state the Dr. Chaney talks about. Jess
  18. hermitlady

    hermitlady Member

    Sorry, I don't remember what test was used. It came back negative. I wasn't very well informed back then, I should probably revisit that w my doc.
  19. Cinderbug

    Cinderbug New Member

    3 times

    Once right after having a 4" bullseye rash on my thigh for 3 weeks

    Again 3 months later

    And again after a year.

  20. bigmama2

    bigmama2 New Member

    i tested negative for lyme. cant remember which blood test it was.
    [This Message was Edited on 06/04/2009]