I have been and am currently being treated for chronic Lyme/Babesiosis since April of this year, unfortunately with little relief of symptoms. Because during these three months my dry eye/mouth symptoms severely worsened, I decided to see a rheumathologist and was diagnosed with Sjogren's. My dilemma is that my LLMD told me that my Sjogren's was caused by my Lyme and would go away when the Lyme was sufficiently treated and pleaded with me to stay away from any immunusuppressive drug. My rheumathologist told me I don't have Lyme because of now negative blood tests (only Band 23 showed, as always) and advised stopping treatment and starting on an immunusupressive drug to slow down my Sjogren's. I'm confused and afraid. What if my LLMD is wrong and my Sjogren's progresses. What if my Rheumathologist is wrong and my Lyme/Babesiosis goes wild and causes more damage? Anyone here have Sjogren's due to Lyme and can share about it? Any words of wisdom regarding any of this would truly be welcomed. Posted by Rivendell (Member # 19922) on :
Do you recall being bitten by a tick? Did you have a rash - bullseye? (Some people don't get bullseye rashes and some people never get a rash at all, but still get lyme.)
Anyway, if you had the famous bullseye rash, then you definitly have lyme. But you can have it even without a rash.
I really don't know anything about how to interpret Western Blot, but my guess is that the Rheumy doesn't either.
I would put more faith in the LLMD.
It takes time to see results, especially if you have been sick a long time.
Also, having both Lyme and Babesiosis means that your case is more complicated and will take a longer time to overcome.
I think you are giving up too soon.
Posted by nutsforcrabs (Member # 27180) on :
I had a rash and positive blood tests for both Lyme and Babesiosis 3 years ago, as well as for only Lyme 10 years ago. I was treated 3 yars ago for only two and a half months and told I was cured. Since then, I have had on and off what I called my "bouts of weakness" that lasted for days or weeks, with "remission" in between, consisting of, just to name a few symtoms bone-crusing fatigue, rashes, numbness/tingling, fevers, body aches, brain fog, blurred vision, tremors - you name it - along with a dry eye diagnosis. It got so bad this past January after a bout with the flu that I had to take a hiatis from my passion and sport of competitive road cycling and have not been able to ride even at a casual level since. There also has been no "remssion." I HATE taking all of these antibiotics and mepron and even my vitamins and probiodics. They make me nauseaus 24/7, my stomach hurts, and I have zero appetite. You are right. I was, maybe am, giving up, hoping that Sjogren's is the answer and I can stop all this medication. I guess that's silly because I would be trading the antibiotics for even crazier medication. I think the one symptom that I want gone YESTERDAY is the fatigue. I want to get back on my bike. I am fustrated that I don't have the energy to ride. I feel like my life is passing me by. I'm sad and discouraged and am giving up hope. How to you and everyone else stay focused, determined and positive...and stong? This is so hard.
Posted by Lymetoo (Member # 743) on :
I'll be back later.. Moving this to Medical Questions.
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