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Recent Diagnosis + lupus (SLE)

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Lyme Disease
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Posted 12/16/2013 2:38 AM (GMT 0)
HI,
my name's Brittaney and I live in Central Florida. I was diagnosed with lupus in 1998 as a young girl. I was just diagnosed this september 2013 with Lyme disease. I am currently in my 3rd week of iv antibiotic treatment and anti-parasitic (oral) medications. I am extremely unhappy with my dr. as he told me that he wasn't coming into his office on a friday to do my dressing change ( it was due to be changed on thursday), that I could wait until Monday. Although he wanted me to be taking another anti-paraseti he told me that he wouldn't get another parasitic pre-approved by my new issuance company because of the paper work. So, now I'm 3 weeks into my treatment, I feel absolutely horrible, and I don't know where to go. Any advice?
Thanks
Posted 12/16/2013 2:48 AM (GMT 0)
You probably got Lyme because Lupus is an immune system problem. Or do you think you were wrongly diagnosed with Lupus?

Do you think you need to change to a different LLMD?

Do your research. And remember, one small step at a time. You can't eat a watermelon whole!

I think you probably need more suggestions, but I'm tired! Margaret
Posted 12/16/2013 2:49 AM (GMT 0)
Hi Margaret,
I'm looking for a LLMD in the Central Florida area. If you have any contacts I'd greatly appreciate it.
Thanks!
Britt
Posted 12/16/2013 2:54 AM (GMT 0)
The truth is you can go more than a few days without getting your dressing changed. However, you do need to visually inspect your dressing and be mindful of any redness, tenderness, swelling or infection in the area. These IVs should be taken seriously, because a small surface infection can lead to an infection of the heart.

I'd call your insurance company and assist in the preapproval process. The costs of these anti-parasitic drugs can be stupidity staggering (Albenza for example was going to cost me thousands of dollars AFTER the insurance kicked in.) My own doctor doesnt accept insurance or even process any paperwork, so consider yourself very lucky.
Posted 12/16/2013 3:03 AM (GMT 0)
Hi Brittaney-

My Mom was diagnosed with lupus for 20 years before it turned out to be cancer so terminal that they couldnt treat it. Growing up with my Mom, I actually know a lot about Lupus and enough to know that you need to be very skeptical about the doctors that arent searching for an underlying cause. In your case, I think you got lucky: its very likely your Lyme created symptoms indistinguishable from Lupus.

So I wanted to ask, did you have Lyme prior to being diagnosed with Lupus, or did the doctors not have any other classification for your symptoms at the time back in 1998?
Posted 12/16/2013 3:45 AM (GMT 0)
HI,
So sorry to hear about your Mom.
I'm being treated as if I've had the Lyme as long as the Lupus because I have never been tested for Lyme. I don't think Lyme was considered an option when I was first diagnosed, but my symptoms are definitely found in both diseases.
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