They said my Lyme was gone...I know it's never gone...but, now they want to tell me I have Lupus??
Hey Y'all! Hope everyone's feeling as good as they can today. I dealt with crazy neurologic lyme from 2007 - 2009 - PICC line and then lost my gall bladder...the works. I really did feel better. I swear. However...now, not so much. So, I went to the doctor...a different one from my Lyme days - he's WAY too expensive. They called me and told me I tested positive for Lupus. I argued there was no Lupus test, but the lady disagreed and recommended a rheumo to go to.(I have an appt. on 11/15)
As with most of us, I asked for the blood work and have been googling things ever since. The only indication my doctor had for stating I had Lupus is a "moderate positive" ANA (that's what it says and is still in the normal range), however, my ANA w/ titres is 1:1280 with a mixed speckeled and homogenous pattern. And here are my symptoms:
Ridiculously drenching night sweats
Numbness and discoloration in fingers - to white or blue
Headaches which are getting progressively worse
Chronic Fatigue - which my doctor gave me Nuvigil for...but, I don't think the doseage is effective anymore and I am not sure if it is the right drug for me
Anyway, my question is, do I have Lyme again (still)? I mean, I know it never goes away...but, we already lost our house and spent all of our money...it's done. It's gone. Bye Bye. I'm going all in-network now...and none of these guys know BOO about Lyme...could it be Lupus??? I don't get rashes and LUCKILY have never had joint or muscle pain, except for about a month after I found the bullseye...about a year before I was diagnosed. I've been crazy lucky...only neurological issues...had to learn how to speak again...the easy stuff. (tongue in cheek)
Any thoughts?? The last rheumo I went to didn't do anything for me and I ended up spending most of my time at the neuro and the internist. A little less time with the gastro and the endochrin guy and almost no time with the rheumo and the hemotologist.
Any clue? Anyone relate?
Homogeneous and speckled pattern is both seen in SLE (systemic lupus) and numerous other autoimmune diseases. 1,280 IS a significant ANA reading, and should be followed up. The numbness and discoloration in fingers is called Raynaud's. I would think if you don't have joint pain, then it probably is not lupus. But would advise further testing to narrow down what is going on. There are many other autoimmune diseases that can cause a possitive ANA.
Thanks for you very clear and to the point post. Praying for you. Let me know if I can help in any other way. ~Kara
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