I also cannot find -anything- that is more of a spot-on diagnosis than late-stage Lyme (15 years after an episode where a friend of mine and I were camping in the backcountry during the state's worst tick outbreak [we did not know this] ever. We had to camp at least one night. It was so bad that I remember turning back the sweat band on a baseball cap and having more than a dozen in there).
It's one of those "oh 95% of those apply and 5% don't" deals.
My doctor has done all the standard rheumatological bloodwork, including Lyme antibodies which shouldn't be anywhere in my system this late on. I talked to him about the ELISA test (the special one mentioned) and he mumbled about referral to the Infectious Disease specialist and things being unresponsive to antibiotics, etc. etc. He dismissed me. The ELISA is supposed to be able to show the presence of the disease at any stage if I am not mistaken.
The cognitive effects are far, far beyond fibromyalgia and 'neurological disorder NOS', and idiopathic peripheral neuropathy. They also are continuing to get worse.
Especially interesting is the cartilage deterioration in my knees/hips and shoulders, advancing neuropathy. My knees are bad enough to get disability on their problems alone. Not RA, no tests show the slightest hint of it.
Hmm. What can we do?
Originally Posted by guitargal
the more i read about lyme disease the more i wonder if that is what i have.