These are always hard decisions. Whatever you decide, don't second guess yourself.
Also, I would recommend having your blood tested by Igenex lab. It is a lab that specializes in Lyme. My docs don't give it much mind, but, at least it can rule OUT Lyme. Mine admit I could have a post lyme issue...that is now an autoimmune disease. I always wonder when folks have GB like profiles. I had Lyme, and they caught it right away, but my labs are negative everywhere but by Igenex. Liza Jane may have a link to the lab on here, I don't know.
I am not on long term antibiotics....they did me no good either.
I do think IVIG takes a while to work for some people and progress is not getting worse. I too am debating adding some 'chemo' like drug, which I KNOW won't sit well with me. Just really hard decisions....I understand.