Thread: update
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Old Wed May 11, 2011, 02:45 PM
Lbrown Lbrown is offline
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Join Date: Oct 2009
Posts: 361
update

Hi guys,

I had ATG last July and had a hard time with C difficile 3 times and it seems like everything that could go wrong, did.

I just finally quit tacrolimus. It did nothing for my counts.

My options are now autologous stem cell transplant or donor transplant. I will get checked to see if they can harvest stem cells. Hematologist says trying anything else like campath could make things worse, and make an autologous SCT impossible.

I have chosen to stay on the Marshall Protocol, and LDN. I feel better in every way on the MP and LDN, except for my HGB. All I can say is I figure that has to count for something, and it sure beats feeling like crap. So, no more immune suppressants. The tacro was starting to make me feel sick, my creatinine was too high, my body temp was too low and I was freezing all the time. I think it would have trashed my thyroid if I continued to take it. I would wear 2 - 3 sweaters to work and still have chills and goosebumps all day. The day after I quit tacro, my body temp went up at least a whole degree C to 36.7 C, and I do feel a lot better with more energy, no nausea, and no longer cold all the time.

All I know, is that there is a lot yet to be discovered about the immune system, and I am following my gut which is telling me to stay away from more treatments.

I told the hematologist I was burnt out and needed a break from the treatments. I may consider ASCT if that turns out to be an option, but it wouldn't be something I'd do anytime soon.

Up until now, I've been lucky that my neutrophil count has been just high enough to keep me from getting infections.

Deb
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