I went to my neuromuscular dr. today about the tongue thing. I don't know why his secretary said I had to come in when we could have spoken on the phone. Kind of crazy for a 4 hr round trip.
Anyway, he wanted to see my tongue and ask if I had any difference in taste or smells. No and no. Then he did a basic exam. He spent 40 minutes with me and really let me ask a lot of questions so it wasn't a complete waste.

For anyone who remembers that I saw a lyme dr., I told the neuro this and asked him what he thought. He doesn't feel comfortable with the long term antibiotics, but can't say that it wouldn't work or that it isn't lyme or bartonella. He also said he thinks the plaquenil is safe enough to try for about 6 months. He was hoping for spontaneous remission for me, but seeing that its been over 2 years since this started and 7 months in this bad phase, he said we might try steroids. Yuck. I know he does not like meds which is why I like him, but he said something along the lines of steroids sometimes being able to put things back in check. He wouldn't want to keep me on them. I need to think and get some feedback here.