Not sure if I have Lyme, some tests positive, Dr says no

Discussion in 'Fibromyalgia Main Forum' started by laspis1, Feb 3, 2006.

  1. laspis1

    laspis1 New Member

    This Lyme stuff is confusing. I have tested a number of time for both Ehrlichia and Lyme. Ehrlichia comes back strong positive every time. But with Lyme I would get some test positive and others not, and even though those that were positive, the Dr would say they are not positive enough even though the lab marked it as High. So what is the ultimate authority on this? How can a test be 'not enough positive'? I figured someone here must know since there seem to be so many Lyme victims. I do not want to add another disease to my list, and Lyme would be sth I definitely would like to avoid at any cost. Unfortunately all I have to do is step outside. There are deer in my back yard every day and my dad caught Lyme working in my yard twice already. He did however get very ill rather quickly and did get the bulls eye rush so he was treated immediately. I have never seen his as sick as he was then. One thing he told me though is that now he understands how I must feel. Luckily he seem to have recovered even though I do think he is suffering some residual effects.
  2. Countrymom

    Countrymom New Member

    go to the website lymenet dot org

    there is tons of information over there on how to interpret a western blot test.

    I would have to guess that you are positive and need to see a lyme literate doc asap

    Good luck dear,
    Dani
  3. laspis1

    laspis1 New Member

    my Dr is a very reputable one and one would hope that he would be able to make some sense out of it. It just strikes me as odd.
  4. laspis1

    laspis1 New Member

    I went to one of the Lyme sites and requested a referral to a Lyme specialist in my area. There should be quite a few. It is worth my peace of mind to get a second opinion. I guess in my mind, the antibodies are either there or not.
  5. hopeful4

    hopeful4 New Member

    I would assume that you have it based on what you've said. If your Dad got it twice in your very own yard, and you have symptoms, and you have a co-infection, and you have some positive lab results...bingo.

    The doctor who tested you does not know enough about lyme testing and diagnosis. Lyme is a clinical diagnosis based on history, symptoms and lab results. Even a completely negative lab does not rule out lyme disease.

    Most lyme testing is not reliable to begin with. The Igenex Western Blot and the Bowen are two tests that are more reliable.

    Please get a copy of your labs if you have not already. You can post them here or on lymenet dot org and someone can explain them further to you.

    I hope that you are able to get in to see an authentic LLMD (lyme literate medical doctor) who can give you an accurate diagnosis, and who knows how to treat you.

    Best wishes,
    Hopeful4
  6. hopeful4

    hopeful4 New Member


    WESTERN BLOT IN LYME
    . Reflects antibody response to specific Bb antigens- they are reported as numbers called "bands"
    . Some bands are seen in many different bacteria- "nonspecific bands"
    . Some bands are specific to spirochetes
    . Some bands are specific to Bb
    . Positive blot contains bands specific for
    Lyme
    . Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93
    . Spirochetes in general: 41
    . Nonspecific: All others!
    . The more specific bands that are present, the more sure the diagnosis

    NOW THE BAD NEWS! PITFALLS OF THE WESTERN BLOT
    . Very difficult to produce and interpret a western blot
    . Bands do not easily line up
    . Appearance affected by subtle changes in temperature and chemistry of the test system
    . The specific strain of Bb used to produce the antigens may not match the strain the patient has!

    HOW DO YOU MAKE THE DIAGNOSIS?
    . Lyme is a clinical diagnosis
    . Even the best Lyme tests are only an adjunct
    . Use the ILADS point system

    POINT SYSTEM
    . Tick exposure in an endemic region 1
    . History consistent with Lyme 2
    . Systemic signs & symptoms consistent with Bb infection
    (other potential diagnoses excluded):
    . Single system, e.g., monoarthritis 1
    . Two or more systems 2
    . Erythema migrans, physician confirmed 7
    . ACA, biopsy confirmed 7
    . Seropositivity 3
    . Seroconversion on paired sera 4
    . Tissue microscopy, silver stain 3
    . Tissue microscopy, monoclonal IFA 4
    . Culture positivity 4
    . B. burgdorferi antigen recovery 4
    . B. burgdorferi DNA/RNA recovery 4

    POINT SYSTEM DIAGNOSIS
    . Lyme Borreliosis Highly Likely
    - 7 or above
    . Lyme Borreliosis Possible
    - 5-6
    . Lyme Borreliosis Unlikely
    - 4 or below

  7. laspis1

    laspis1 New Member

    I will dish out the tests and posts, but based on what you wrote, it takes a lot more than one test. So I will try to find a good specialist here. I have been treated for three weeks for the ehrlichia, but saw no change in how I felt or how much pain I had. The treatment was given probably a yr and a half after I was first diagnosed. I was told that it was the virus that was making me sick and not the ehrlichia. Anyway, too late to dwell on that, but have to find out if I need further treatment.
  8. redsox10

    redsox10 New Member

    Please see a lyme literate doctor right away. Both my son and daughter are being treated for lyme. My daughter was sick for 2 years and diagnsoed with CFS efore the lyme. After 1 year of treatment for the lyme she is improvong. My son was recently diagnosed with neuropsych lyme. Lyme is hard to diagnosis and treat. Please see a lyme specialist ASAP. Where do you live?

    If your father is showing residual effects of the lyme he is not better. He needs to be treated by a llmd. Most lymespecialist feel antibiotics are needed for a full 2 months after ALL symptoms are gone.

    Please get help for both of you.
  9. laspis1

    laspis1 New Member

    Finding a Lyme literate doc is the next thing I intend to do. I live in CT so it should not be too hard to find one, but on the flip side it may be too hard to find one that is taking patients. My father was treated for 3 weeks both times and I got so upset with the drs because he was definitely in the need of longer treatment but they refused to extend the prescription. I have argued with them and lost. I do not think 3 weeks is enough for this pest.

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