Posted by alchemy on August 6, 2012, at 21:29:17
In reply to Re: Desperately looking for a novel med now! » papillon2, posted by Slabicki on August 6, 2012, at 21:09:19
> Thank you for your ideas. I wish the pills would work, but they are just sugar pills for me.
> I'm just in my desperate search now.
> I've checked:
> doxycyline - it causes depression
> celebrex - causes depression
> infliximab - too risky to try
> Also - rapamycin, the studies were conducted just
> on mice. I don't know what to think now - I will try anything and my wonderful Pdoc will prescribe it as a compassionate way just to try it.
>
> I haven't try Ketamine and GHB yet. My Pdoc was reluctant to prescibe GHB, and I don't think he will.
> I've tried many off label meds in the past.
>
> SlabickiDid your dr let you try the off label meds? I had to push mine to try one of the parkinson drugs. I'm pretty sure I am his most treatment resistant patient. He has hinted that I only need to learn how to cope with nothing really working.
I have read where people have learned to just "accept" their illness and work around it. I cannot live this way. It is non-relenting and has been haunting me for 30 years. Sorry my post isn't helpful right now. I am looking for the other responses as well. I guess I just keep painfully in the semi-survival mode. I'm not stuck in bed all of the time, sometimes I can put on the happy mask. I'm glad I at least live in an age where there are treatments, but I do not respond to them.
poster:alchemy
thread:1022678
URL: http://www.dr-bob.org/babble/20120803/msgs/1022816.html