Hi Ellie,
Try not to lose hope yet. I go to that well known LLMD in SF and I don't pay much more than Sarah does. He took insurance until this past year. He is normally expensive but as Sarah mentioned, he doesn't charge much for poor people. It may be hard to get in under that premise, I've been seeing him for a while. Hopefully, there are other LLMDs near you that are equally generous.

Please be careful about who claims to be an LLMD. There are some out there who claim to be so trained, but them "suggest" all kinds of crazy stuff to their patients who usually listen to their doctor.

Generally, doctors will stick with orals for a while to see if they will help, simply because there are likely to be more unexpected problems with an IV. Doxy is normally the first antibiotic prescribed and has pretty good brain penetration, but people have different levels of success with different antibiotics. Also, allergies limit what can be taken as well (PCN and anything related to it for me, I am massively allergic). I think which antibiotic is more important than how it is adminstered, in general. I think people's bodies make more antibiotic available in our systems when administered through IV, but if the antibiotic doesn't work as well as an oral antibiotic, that isn't going to matter as much.

It sounds like you've probably had every test involving your brain there is but SPECT scans are very good at both verifying the pressence of lyme (you get a big head!) and at tracking how you're doing over the long haul.

I'm new to the forum but I've had lyme at least 23 years, was diagnosed four years ago (by accident actually) and my symptoms are almost all neuro. I can really relate to the lyme brain. It is very frustrating sometimes.

I hope you get over this quickly, just make sure you do not go off antibiotics too soon.