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Thanks Greg.
I apparently don't have any clones, and no genetic abnormalities. They're pretty much convinced I have something that is immune-mediated. The dr explained that somewhere along the line, my immune system learned to attack my red cells & precursors. I'm still sticking to a viral / bacterial cause, but who knows for sure. At least I still have some CD34 cells.
I quit taking tacrolimus on the weekend, I posted in my LDN thread. I am supposed to start taking cyclosporine again - neoral this time in the hopes of not having so many side effects.
I decided to take Feb "off" and see if the LDN kicks in, as I've been taking it since Nov with tacrolimus. I took 18mg of tacrolimus a day - apparently a whopping big dose - and it had no effect. The dr is not hopeful cyclosporine will work now either, and I'm really not looking forward to cyclosporine after the side effects the last 2 times I took it.
So my plan is to start the cyclosporine in March if nothing has changed by then. My current doctor is a little more open to me making suggestions and I see him again April 20. He was the one who brought up autologous stem cell transplant.
Deb
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