This might be way out there but have you investigated what the cost of going to another country and getting treatment there would be? You already have a correc

This might be way out there but have you investigated what the cost of going to another country and getting treatment there would be? You already have a correct diagnosis. You sort of know what needs to be done and only need docs qualified but unafraid to do it and cheaper meds. You might be surprised how comparatively cheap all that can be outside US and the local laws in other countries might mean that the docs there don't have to worry about treating you there like they have to in the US. (Anecdote: A friend of mine once calculated that despite what the insurance covered for him, if he had come to Bombay and gotten treatment at the best facilities staying in a 3 star hotel all the while, it would have cost him less and he would have received way better treatment from more qualified docs.) Good luck to you. Hope you get well soon.