k07 said...
I've only been there once and have had a few phone appts. I do not see MB though - I see John. Supposed to have an appt with Dr. H in December. I took a leap of faith in going there - mostly because he's been hinting at a possible cure. It's been ok so far - they did discover a few coinfections, so that alone was probably worth it.
I hope the appointment will go well for you! Dr H is a funny guy, he is like a little tornado, a sort of tasmanian devil, lots of energy, 20 thought processes going on at once in his mind ;) and I mean that as a compliment hehe. I think he is smart and thorough, I appreciate that. Maybe a bit overextended in his practice and outside commitments like books and traveling, but to me it has been worth going to the practice so far.
I've only been once as well. It's very far for me (I'm in Phoenix). It's been such a long hard road getting proper treatment, and I'd had such a bad year where I went through a sort of herx death spiral. Dr H and MB were able to help me stabilize my body and finally get to restarting treatments. We'll see where things go, I was just thrilled they were able to stabilize my body where I could actually start treating again, for a while I thought I'd never be able to!
I'm excited that several of us at the forum will be getting on dapsone, will be nice to have some patient feedback on this drug for the other forum members. Hopefully the drug will prove helpful, but either way it's good if we can get more info to other forum members. Lord knows I've relied so much on other forum members' stories, experiences, information, and research to help guide me in my own decisions! grateful there is such a good network of patients who are helping each other :)