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.

Does your bloodwork show elevated white cells? or depressed white cells?

Steroids suppress the immune system and if you have any infection, it might be stimulated. Low white cells may indicate an active viral process too. But then lupus does affect white cell production as well.

Steroids will flare herpes, or any other active viral process.
So you should consider this aspect carefully.

My lymphocyte count was in the normal range for my regular blood test. For my spinal tap it was very high but I had what they call a "traumatic tap". I don't know exactly what that means but they didn't mention anything at all wrong with my spinal fluid at the hospital.
On my spinal tap it indicates that my rbc count, neutrophils, lymphocytes, monocytes, macrophage, and eosinophil were very high.
When I went to the infectious disease dr., he was visually scanning my records and I heard him say to himself, "bloody tap". I have never officially asked anyone exactly what those levels indicate, but thought it might be because blood got in that shouldn't be there

Mrs D,
I often wonder about the active viral process as well as bacterial.
Can someone have an active viral process for years though?

A traumatic tap means a blood vessel leaked when the needle went in. So all those markers would elevate since spinal fluid is devoid for the most part of blood constituents. Elevated white cells with no RBCs would be a different matter.

Cool!
Ok so the first vial of fluid came out with rbc count of 915 and lymphocytes 36.
The second vial had an rbc count of only 2 and the lymphocytes were 90.
I was thinking that the lymphocytes should go down when the rbc did, but then I don't know how cells settle when they are being extracted and put into a tube. What do you think?

Bottom line.... Don't let a student to a spinal tap. It took 30 minutes and was excruciatingly painful.

I can't answer that, sorry. That is a technique question... and
beyond my training and knowledge.