|
This was the most painless BMB yet. I had Dr #3 instead of the one I expected, but I like #3 because he rambles everything he is thinking, so you get a lot of info and the thought process behind it.
At my hospital in Ottawa, they do autologous SCT mostly for Crohn's, MS & RA, basically autoimmune diseases. I was a bit surprised they don't do more marrow conditions, but basically there is no point doing them if you have a stem cell defect or cancer, as you are likely to get the disease back again.
They think the ATG & tacrolimus didn't work because I am still producing cells and the immune response is too strong. They are testing for CD34 cells as well as defects, MDS and probably looking a lot deeper this time than they've done before, which is a bit of a relief.
The old dr (who set up the transplant program) wasn't as enthused about recommending SCT for my condition, so that's why they're trying to get more data. They all do think it is an autoimmune condition.
I have been on the Marshall Protocol since Sept 2009, and I recently started LDN. The combination of olmesartan, minocycline and LDN does make me feel a lot better, but I don't think it is going to fix what is going on, I've been transfusion-dependent since 2009.
The info I got about the autologous SCTs is:
- using it for severe AI disease
- everyone engrafts
- most people get a remission
- a lot of people get a long term remission
- most or all patients are glad they did it
Despite this being the most painless BMB yet, I started to feel dizzy, sweaty and lightheaded near the end. He was going to do a 2nd sample but couldn't. I thought I was going to throw up or pass out, but after awhile I went back to my freezing cold self. Then got sent off for a CBC. So I hope they got enough and I don't have to go back for another one.
I see this dr again in 2 weeks, hopefully they will know more by then. Transfusion tomorrow, been feeling crappy all week so I hope I feel better tomorrow.
Deb
|