pure red cell aplasia
Saw the hematologist on Tuesday. She agreed to let me stay on the Marshall Protocol and support with transfusions.
I am at approximately week 8 of the Marshall Protocol (MP). It hasn't affected my blood counts yet. I don't know if it will work for me but they've had good results with other autoimmune diseases. I've triple checked with 3 doctors (besides the prescribing dr) and they all agree the meds are very safe and won't cause any harm.
My biggest improvement is a huge reduction in chronic pain. I injured my back in 2001. I can also finally sleep without taking a sleep aid, and if I wake up I'm not awake very long. This is a major improvement in quality of life for me.
Treatments she thinks will work well for me include:
IVIG
ATG + prednisone
Cytoxan + prednisone
I asked about valproic acid but she doesn't think it'll work for me.
I've already tried cyclosporine which partially worked, kept my HGB stable at around 100, but had a lot of side effects.
With the MP med, I can ride my horse 4 - 5x a week due to back pain reduction, and run around with my dog at agility once a week.
I am taking 40mg olmesartan every 6 hours. Cost was negligible, and side effects are minimal.
I am hopeful but realize it is an experimental treatment approach for me as they don't have any experience with patients with a bone marrow disease. In the case that it doesn't work I have at least 3 conventional backup treatments to try.
Current counts:
HGB: 80
WBC: 1.0
ANC: 0.4
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