How Many of you Have Lyme but Tested Negative

Discussion in 'Lyme Disease Archives' started by HppeandMe, Jul 9, 2007.

  1. HppeandMe

    HppeandMe New Member

    Hello Lyme friends!

    I really need as many people who this has happened to and how they were diagnosed with Lyme.

  2. hopeful4

    hopeful4 New Member

    The first time around with lyme testing, I was negative on the Elisa test. That is fairly common.

    Months later, a different doctor gave me the Igenex Western Blot, a more reliable test. On that, I was CDC positive.

    Lyme is a clinical diagnosis, so a negative test does not necessarily mean that one doesn't have lyme. A knowledgeable lyme literate doctor (LLMD) will evaluate one's history, possible exposure, symptoms, and labs, and then make a diagnosis based on the entire picture.

    Best wishes,
  3. amk33

    amk33 New Member

    I tested negative for Lyme on the Elisa test and Western blot done by Quest and MDL laboratories. I also tested negative on PCR test by MDL. I've been told by many doctors that I don't have lyme, and also been told by 2 LLMD's that I do indeed have lyme.
    Tested positive by Igenex western blot at least 3 times, and now by Flow Cytometry test by Central Florida Research laboratory. I had the lyme vaccine which complicated the western blot interpretation, but the positive bands that I did have were beyond those that show up wth the vaccine.
  4. grace54

    grace54 New Member

    But my PA treated anyway due to symptoms.
  5. bunnyfluff

    bunnyfluff Member

    I was negative on the tests, but it showed up when I had a "live" blood screen done. I have probably had Lyme all along, not necessarily CFS/FMS. It is very common, especially if you have taken Abx, like I did, for acne, or anything else.

    It is supposed to be Dx'd by symptoms, but most Dr's do not know this. You need to find the best LLMD you can.

    There are lots of medical papers that have been written about chronic Lyme on the internet. Those will be of the most use. Here is a lengthy, but great article that spells it out:

  6. DiannaS

    DiannaS New Member

    Missed diagnosed for YEARS! Treated for FMS. Tests were all negative. My primary care doc tested me many times for Lyme over the years but due to lack of information, he just wasn't aware. I worked with a Phycian's Assistant who specialized in Lyme treatment and she is the person that insisted that I had it. Finally had the Igenex test done and came back positive. Now under treatment. My CD57 is still not where it should be so...looks like continued abx treatment for me.
  7. BluePetals

    BluePetals New Member

    was diagnosed with Lyme three months ago although the tests was negative. She got a lot better but now she is having pain very similar to mine. I have fibromyalgia. I think she needs to find a doctor to follow up on this.
  8. mollystwin

    mollystwin New Member

    Fibro pain is a very common lyme symptom. Have your daughter talk to her lyme doctor about this. It could be a herx symptom.

    Have you ever been tested for lyme yourself? Many with fibro really have lyme.

  9. Di1207

    Di1207 New Member

    I tested negative in 2005. Every DR that asked have you been tested and I replied yes and it was negative. Not any of them tested again. What did I know. My family DR (who is lymes +) treated me in april of this year and 2 weeks later I tested Postive on my western blot. Twentyfive Drs /speicalist later. Scarry right?
  10. clerty

    clerty New Member

    Me for a live blood test !!

  11. kking0412

    kking0412 New Member

    negative on the standard test at the primary doc's office, positive on the western blot lyme test.