posted
-------------------------------------------------------------------------------- I was told 10 years ago that I had SLE (Lupus), but I really question that diagnosis. I have the joint pain (which move from one joint to another), major fatigue, headaches, palpitations, general aches and pains but daily and occasionally my liver enzymes show abnormally high. I have abdominal pain also but my pain seems to move around. About a month ago, I passed out at work. I was tachycardic and BP was up. Was sent to cardiologist for tests. Waiting on echo results now. Growing up, I have had many tick bites. Four years ago, I was diagnosed with RMSF which put me in the hospital for a week. When I turned 32, I came down with an extremely bad case of MONO! In hospital for a few days with that one getting spinal tap and lots of tests! I seem to get the strangest things! Because I work in the healthcare field, I am familiar with Lupus labwork and I just don't think my bloodwork adds up to Lupus. I did have a weak positive ANA (speckled), elevated liver enzymes and elevated ESR. But the last ANA test was negative. I really think if I had Lupus, my ANA would stay positive. I have read that Lyme can mimic Lupus. I just don't know how to approach my primary care about this issue. Does anyone know of a doctor near Charlotte NC that knows about Lyme? Any help would be appreciated.
Posts: 3 | From NC | Registered: Feb 2012
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I was told by a major university hospital that I had Lupus. I had a postive ANA and all the symptoms but failed to meet any of the other lupus lab work. 11 years later I learned that my lupus was Lyme disease. My ANA is back to negative and things are improving.
I am not from your area, but I would recommend that you start a new post in the seeking area if you want faster doctor information. Also specify if you are will to travel.
Can you approach your primary doc with the idea that you would like to rule Lyme disease in or out? Would the doc sign for IgeneX testing?
I hope you get the help you need!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Thanks ya'll! I did get a lot of information on the list. I am planning to ask my primary about the IgeneX testing. If I don't feel like she is taking me serious, I will contact one of the docs on the list. I would really love to know that the Lupus Dx was wrong. My Mom reminded me that they did some type of testing for Lyme when I came down with RMSF but said it was negative. From what I have read though, that could have been a false negative. I'm so ready to start feeling better. My kids are growing up with a mother that wants to be very active with them, but my health really limits me.
Posts: 3 | From NC | Registered: Feb 2012
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Lupus or Lyme? I was diagnosed with Lyme in 2008. In 2011 I decided to see rheum specialist, just to "keep all of my options open". Tests came back positive but not still not "positive enough" to be diagnosed with Lupus, just suspicion for Lupus.
With Lyme treatment my "lupus" symptoms calmed down and results are coming back OK so far.
Posts: 191 | From va | Registered: Sep 2008
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