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Thread: Did Your Doctor Think You Had Lyme Disease?

  1. #1
    Join Date
    Mar 2012
    New Albany, IN
    Thanked 6 Times in 6 Posts

    Default Did Your Doctor Think You Had Lyme Disease?


    I'm new to this website, and I am newly diagnosed with Lupus and Rheumatoid Arthritis. For the longest time my doctor thought I had lyme disease. It was frustrating because so many medications that I was taking weren't working and I wish there would have been an easier way to diagnose it. Did anyone else have that problem? Why did it get confused with Lyme? Isn't Lyme disease considered an infection but Lupus is considered autoimmune? I know a lot of people can have chronic Lyme, but I'm just puzzled on why a doctor would confuse the two. They did a bunch of blood work on me, so I would imagine they'd find out which one it was easily but it wasn't so simple.


  2. #2
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    One of the things about Lupus is that there is no test for it. Because of this the only way to get a real diagnosis is to rule out everything else that could cause the symptoms you are having. Lyme disease is one of the things that acts a lot like Lupus. When you add that to the fact that our blood tests don't always come out the way the doctors think they should, a suspicion of Lyme disease is quite common.

    Many people here took many months or years to get a diagnosis and were either misdiagnosed or assumed to be hypochondriacs until a real diagnosis was made. There must be some advances made not only in our meds but in the understanding of our disease.

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

  3. #3
    Join Date
    Nov 2011
    Thanked 318 Times in 192 Posts


    Along with Lupus and some other autoimmune junk, I have Antiphospholipid Antibody Syndrome (also called APS or Hughes' Syndrome) - which means I test false-positive for Lyme's and (yikes!) Syphilis.

    My Lupus, Sjogren's, and raynaud's were fairly recently diagnosed, but I found out about the APS 24 years ago when my husband and I had our blood tests done for a marriage license. It came back positive for syphilis - which seemed HIGHLY unlikely to me, they did more testing and found the APS. Docs said I would always test mild-positive for anything that comes from a spirochete organism because APS (and apparently Lupus) show up in the blood and can affect the body in similar ways.

    I did have a false-positive Lymes about 15 years ago, too. As far as I can remember, they did further testing and determined it wasn't Lymes - but at the time they didn't bring up the APS or any other autoimmune stuff. But I had crappy insurance and the medical facilities in my area weren't terribly good at the time - so maybe another (better) doctor would have caught the Lupus/Sjogren's then. I dunno.

    I also find it interesting that one of the most time-honored treatments for these autoimmune disorders is an anti-malarial drug (Plaquenil/hydroxychloroqine). I wonder if someday they will find some connection among all those conditions. HOPEFULLY it will yield a treatment or cure for ALL of them!!!!

    Anyway...that's my experience with it, in case it helps.

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