I really can't take steroids because they are contraindicated with Lyme Disease. They make the infection go crazy.

Have they mentioned Plasmapherisis? (dunno if i spelled it right) When I had an MG crisis they did to me helped too..

http://www.ncbi.nlm.nih.gov/pubmed/10342905

Tracy, Do you have an endocrinologist? What if while you are on the Rifampin it looks like your thyroid is normal or hyperthyroid but then when you go off of it you get hypothyroid?

It might be worth it to get a scan of your thyroid, just in case you may have an autoimmune thyroid problem making things worse.

Be careful with taking oxygen. If you can't breathe out well, you can get too much oxygen, believe it or not. It's time to get a very good pulmonologist so you can have a Bi-Pap and/or oxygen while you are sleeping and probably awake. Obviously you need that but doing it without direct doctor supervision is not a good idea.

This may be gross but what about a potty chair in your bedroom? Of course, that would mean assistance from "someone."

It's not a bad idea to have an assessment by home care to see what else you could be able to use to make things better. Do you ever sleep in a recliner?

I hope you get more care soon.

Annie