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  • ? undiagnosed Lyme?

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    Old 12-12-2008, 06:53 AM   #1
    cindy1928
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    ? undiagnosed Lyme?

    I was doing some online research and noticed that many of my symptoms are symptoms of Lyme. About 8-10 years ago my gp thought I had Lyme and began treatment but never tested....I had the mark and rash had removed a possible tick the day before.....saw a dermatologist the next day who said NO.....I stopped treatment and stopped seeing gp.....I started having swollen glands/lymph nodes, heart palpatations, then joint pain, now chronic fatigue, and seizures. I have been diagnosed with left frontal lobe epilepsy, ostio arthritis, lab proven sjogrens disease, fibromialgia, diabeties......could it be Lyme? all this time?

     
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    Old 12-12-2008, 09:58 AM   #2
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    Re: ? undiagnosed Lyme?

    Quote:
    Originally Posted by cindy1928 View Post
    I was doing some online research and noticed that many of my symptoms are symptoms of Lyme. About 8-10 years ago my gp thought I had Lyme and began treatment but never tested....I had the mark and rash had removed a possible tick the day before.....saw a dermatologist the next day who said NO.....I stopped treatment and stopped seeing gp.....I started having swollen glands/lymph nodes, heart palpatations, then joint pain, now chronic fatigue, and seizures. I have been diagnosed with left frontal lobe epilepsy, ostio arthritis, lab proven sjogrens disease, fibromialgia, diabeties......could it be Lyme? all this time?
    I just spoke with my family doctor and he said my symptoms could very well be Lyme and I am going in for testing on Monday.

     
    Old 12-12-2008, 12:12 PM   #3
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    Re: ? undiagnosed Lyme?

    Good for you! Everything you posted could be a Lyme symptom!! Make sure he uses a reputable lab for testing!

     
    Old 12-12-2008, 02:00 PM   #4
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    Re: ? undiagnosed Lyme?

    How do I do that? How do I know which lab to ask him to send it to?

     
    Old 12-12-2008, 04:13 PM   #5
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    Re: ? undiagnosed Lyme?

    Igenex is one of the most reliable labs for testing for any tick-bourne illness. Do not accept a basic ELISA test, because they are often not reliable. No test is fool-proof, but Igenex is the lab most good LLMD's will use for testing. They should run an IgM and IgG, western blot... your doctor might also request a urine antigen test, and (if you can afford it), co-infection testing. If your doctor gives you a basic test through a typical hospital lab, and it comes back negative, do not assume you are negative for Lyme. You need to get a copy of your test results as well, and perhaps post them here where fellow Lymies can help you figure them out.

    I was bit by a tick in 1987, and had been experiencing a myriad of symptoms for .. well, obviously a very long time. It wasn't until I came to a forum like this (and had somebody suggest that I test for Lyme) that I found a doctor willing to have me tested. I go out of state monthly to see him. (I've been in treatment since May of last year.) My ELISA test through LabCorp (which most hospitals use) was negative.. in fact, only one band showed up, and it was negative. However, I did the testing through Igenex and was CDC positive for Lyme. I would highly suggest looking for a Lyme Literate doctor, if you don't have one. Best of luck to you!

    Last edited by datgrlstef; 12-12-2008 at 04:15 PM.

     
    Old 12-12-2008, 05:41 PM   #6
    cindy1928
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    Re: ? undiagnosed Lyme?

    Thank you! I have been through so much and just thought it was all unrelated illnesses...then I remembered about the stuff with the possible Lyme 8 or 10 years ago. I just want answers. I hope my doctor has knowledge or there is one close by that does. Thank you for your advice. If anyone has any knowledge about SC doctors let me know.....

     
    Old 01-04-2009, 07:29 AM   #7
    cindy1928
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    Re: ? undiagnosed Lyme?

    I had a neg Lyme tyter? doc refused more test

     
    Old 01-04-2009, 08:23 AM   #8
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    Re: ? undiagnosed Lyme?

    In 2002 I had a lot of the same symptoms you speak of and my doc suspected Lyme's. After many, many tests and a change in docs, I was properly diagnosed with H.Pylori and treated for such. The new doc tested me for (what he called) any 'off the wall' diseases that are not typically addressed in ordinary blood/urine tests. He was surprised when I tested positive for H.Pylori. Goog it to find more information about it. Just a thought.

     
    Old 01-23-2009, 08:23 AM   #9
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    Re: ? undiagnosed Lyme?

    Quote:
    Originally Posted by cindy1928 View Post
    I had a neg Lyme tyter? doc refused more test
    Another thought is: Lyme diagnosis is a CLINICAL diagnosis.

    Diagnosis is NOT determined by ANY test (alone) out there---including IgeneX. Test results can support the clinical dx, however,
    tests cannot RULE OUT lyme.

    There are 100 strains of Lyme in the U.S. of which very few are tested for.
    Reasons for False Negatives: [url]http://www.anapsid.org/lyme/lymeseroneg.html[/url]

    Suggestion: seek out a LLMD for differential diagnosis.

    Best of luck to you!

     
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