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Originally Posted by onebeed
Madisongrrl - Are you being evaluated my a Lyme literate doctor? Do you know the kinds of tests they did? The standard tests aren't very accurate. If your tests come back negative, you may still have Lyme. Consider a test from one of the tick specialist labs like Igenex, Stony Brook, or AdvancedLabs. Or at least ask your doctor to run a CD57 test through LabCorp. Insurance will usually cover the CD57 and it gives a good indication of whether or not you have Lyme. If your number is over 200, you are normal.
I have not heard of Naltrexone. I will have to check it out. I also have a real problem wearing shoes. They are incredibly painful. I have had to give up socks.
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My doctor is well versed in Lyme, co-infections, and functional medicine etc. She is running several different tests on me - none of which are standard. I think she very much ascribes to a Dr. Horowitz type of medical approach.
If you are an outdoors person in Wisconsin, it would not be unusual to pull a handful of ticks off of yourself every single week. I used to race mountain bikes, so camping and ticks came with the territory. Ten years ago I was bitten by a deer tick in northern Wisconsin and had Lyme symptoms a few weeks later. I had 4 negative elisa tests from my under educated HMO and thus never received proper treatment. So I've been on the negative Lyme test merry-go-around before...
This Lyme doctor put me on low dose naltrexone to help my immune system function properly. There are 2 known mechanisms for this drug - 1. it promotes regulatory T-cell function, which serves to keep your immune system balanced and 2. it regulates CNS inflammation by blocking receptors on your white blood cells that cause pain and inflammation. It seems to be taking an edge off the pain so hopefully we can figure out if tick-borne illness is driving my immune system dysfunction, which is driving the body-wide neuropathy symptoms.
So the nurse who did my patient intake at the Lyme doctors's office has a daughter that had persistent Lyme and developed SFN from it. Her poor daughter is only 20 and has to wear a cooling vest outside if it's 75 degrees or warmer. I just about fell out of my chair when I heard that.
I'm happy that you were able to find a cause for your symptoms. Please keep us all updated with your treatment and hopefully your improvement!
