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  • re-test for lyme disease not possible?

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    Old 01-18-2009, 05:39 PM   #1
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    logger HB User
    Question re-test for lyme disease not possible?

    hello everyone,

    a couple of years ago i had lyme disease confirmed by blood test. i was treated with doxycycline and slowly the symptoms i had (uveitis, head aches and swollen knees) seemed to subside. now i have a return of the uveitis and problems sleeping. i was told that once you have lyme the test will always come up positive whether you still have it or not - is that true? if so then what option do i have? just to take the meds over again or try a different med?


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    Old 01-21-2009, 11:09 AM   #2
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    marshrose HB User
    Re: re-test for lyme disease not possible?

    Alot of regular drs will retest you after your round of antibiotics and see usually you lose a few bands here or there to create a negative IGM as it's 2 out of 3 bands on a western blot test for cdc positive that most dr's go by (not LLMD' of course).

    I would try and remember if you were restested and so, what the results were. Usually your IGG will pick up where your IGM leaves off to an extent.

    I had severe symptoms for a year, then they said ohh lets do a lyme test! Full blown (by cdc standards) positive. After the 6wks oral antibiotics, a 'cdc' negative IGM (1 lyme specific band), and a cdc positive IGG (shows exposure to the lyme bacteria), rounds of doctors, rounds of tests, ruled out other diseases, then yet years later with drastic symptoms had a positive spinal tap to lyme.

    Symptoms, and with some doctors western blot correlation is what you go by with this disease.

    Some people stay positive and feel better, some are always negative, turn positive after treatment, some are book standards turn negative after treatment and are not symptomatic ever again.

    When your symptoms are mimicing Lyme but you've got NO (not by cdc I mean) lyme specific bands, always go the route and rule out other diseases before going back to Lyme. It's a long battle for some, and ruling out other things is the only way for sanity and dealing with most doctors who are not the 'llmd's'.

    Just my opinion. Good luck.

    As for treatment, it depends where you land, if nothing else correlates for a reason for your symptoms go for lyme treatment again. Or goto your pcp request a lyme test since you've been unwell and start there to see where you land on your bands since you had it prior and can compare results.
    BUT by no means is a cdc negative result, a negative lyme test.

    Last edited by marshrose; 01-21-2009 at 11:26 AM.

    Old 01-22-2009, 07:43 AM   #3
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    Re: re-test for lyme disease not possible?

    Hi Logger, it sounds to me like when you were treated you were not treated long enough. Possibly just long enough to get it into remission. Many doctors only treat with 100 to 200 mg of doxy for up to 6 weeks then say you are cured.

    This is not true!

    You need atleast 300 to 600 mg of doxy, Plus you need something such as Flagyl to break open the cyst form.

    I have never heard of you will always have a positive once you have lyme. All kinds of stories out there.

    But my opinion sounds like you never got rid of it and now for some reason such as stress or a drop in the immune system it has popped back out.

    You need a Lyme Literate Medical Doctor. You can look above under the thread "Doctors and Clinics" for a specialist near you. Or look for a support group in your area, someone I am sure can guide you to one. Or post a new thread asking for one. There aren't many, so you may have to travel.

    Make sure to be tested for co-infections also.

    Good Luck!


    Old 01-25-2009, 07:53 AM   #4
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    logger HB User
    Cool Re: re-test for lyme disease not possible?

    thanks rosepetal and jojo for the info. i have another appointment this week and i am going to request the retest and/or treatment.



    Although the world is full of suffering, it is full also of the overcoming of it.
    - Helen Keller

    Old 01-25-2009, 03:19 PM   #5
    Join Date: Dec 2003
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    marshrose HB User
    Re: re-test for lyme disease not possible?

    np logger good luck! Do try and get a copy of your lyme test though. As I tried to explain the lyme western blot (run after an elisa titer test when positive) is the one that shows the 'bands'. For a cdc positive (cdc-center for disease control) you need 2 of 3 specific band numbers to be present for almost any regular pcp to treat you with antibiotics for 6 weeks or more. IGM is the immediate and current immune response to the lyme bacteria. BUT as I said in my post, I had ONE IGM band for years, and was tested for everything under the sun as no pcp after my 6 weeks antibiotics considered ONE lyme specific numbered band on my test to consider I still had it. Years later and a positive spinal tap to lyme (with a by cdc NEGATIVE western blot) I had to have massaive treatment for CNS Lyme.

    Do get your results and you can research the numbers that show up to see if any in your IGM are lyme specific.

    Good luck ! Feel better!!

    Old 05-22-2011, 05:48 PM   #6
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    Re: re-test for lyme disease not possible?

    This is such an old thread, but Logger, are you still here?

    uveitis, knee pain, headaches ..... that's me too!

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