I wonder if your friend or someone caring for them has ever made contact with the Global Lyme Alliance. They have patient support services and information about clinical trials as well as up-to-date research.
Patient Support Services - Global Lyme Alliance
p.s. I just read an article there when I was checking the url and someone has written about how they were losing vision but are now doing better. They had developed swelling on the optic nerve. It's in the blog section.