That being said, I was pretty bad (hospital stay) by the time I was diagnosed. I've been to every western and eastern doc I can afford, and now I'm just trying to eat as purely as possible, and trying to balance rest with getting stronger. I'm putting my fingers in my ears and saying "LALALALALALAICAN'THEARYOU" to the word refractory.
I don't have much to offer, just know you're not alone. Keep your chin up, and keep searching for answers.