$1200 Ouch!
It was a 1.5 hour consult and he went over all my paper work.
He asked me several questions and was pretty knowledgeable about many things that are out of his category (unlike most of the docs I've seen). I am glad I went, but I am really not sure what to do.
It was easy to gather that he feels that bacteria are the etiology of autoimmunity. He feels that I have Bartonella. He went way back in my history and was interested in many things that I thought were irrelevant.
He said that lyme is easier to treat than bartonella but he's helped people with certain antibiotics and that antifungals can work but that the therapy can take a year.
I told him I couldn't consider neurotoxic drugs because of my condition (small fiber neuropathy- autonomic dysfunction...) and he felt that tetracycline and an anti fungal would be a good combo. I am not ready to do anything yet.

Some of the questions he asked me were things I forgot to even mention to him such as...Do you have myoclonic jerks? When-at night? Is your vision blurry? Do/did you have diarrhea? Sensitivity to lights and sounds? Yes Yes Yes and yes to almost everything.

I am going to think about it and research and speak to my primary doc. He doesn't know what the heck to do either though so probably no point.

The lyme doc is sending me for more blood tests. He said there are so many strains of bacterias that don't show up on Quest testing so he doesnt even think its worth it but he ordered it anyway along with several other tests to look at my red blood cells. He seems to be the only doctor who is curious as to why my ferritin is so low and why my copper is deficient. He is testing for deeper red blood cell problems and said maybe I should see a hematologist.
I must admit that I went in with the attitude of "of course this guy is going to say I have lyme with all my symptoms and go on about how flawed the CDC testing is", but yet I felt it was necessary to explore this option as no one has been able to help me.

What I find to be convenient though is this: my neurologist strongly believes that I have sjogrens. My Rheumatologist mostly feels that I do. My lip biopsy was borderline and with my SFN (significant on biopsy) and autonomic dysfunction, dry eyes, joint and muscle pain, it is all they can conclusively arrive at.

SoThey want me to try Plaquenil. Lyme doc said plaquenil in conjunction with antibiotics can fight Bartonella. He said the plaquenil should give me a herx after about three weeks if it is lyme/bartonella where as if it isn't -it won't. I have no worries of placebo so I am feeling very inclined to try since it would be the therapy either way. I just hate medicine, but I don't know what I have to loose. I want my life back. I'm so freaking confused and have much to absorb as this was just last night that I got back from the appointment.
What do y'all think?