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Hi,
I finally met Dr Wells and boy is he ever nice. Not only that - we are from the same city and may have even gone to middle school together - I think he was in my class! My husband went to the same high school as he did.
He thinks I have some symptoms of pure red cell aplasia except it's not really pure since it involves the WBCs. He also thinks I have symptoms of mild-moderate aplastic anemia. So I am going back on Friday and he will do another bone marrow biopsy. He is not going to start me on any treatment until I have had more testing and he is satisfied with what is going on.
Having said that, he figures the treatment would probably involve ATG and another immune suppressant - thankfully not cyclosporine because I am so miserable on it. He mentioned tacrolimus.
He thinks the IVIG was like trying to put out a fire with gasoline - that it actually fueled the process.
I also mentioned the Marshall Protocol and briefly explained the theory of CWD bacteria infecting macrophages and screwing up the VDR and the treatment is a VDR agonist. He said "I am interested in the nuclear receptors" and he is going to do some research into it. I am glad because I wasn't there to defend the MP, I really wanted them to tell me if it would work or not, and I couldn't ask for more than for him to research into it.
We are very glad we went and got a 2nd opinion. There is no comparison, he is not assuming what I have, and IS going to figure it out and THEN figure out a treatment plan. Yay. That alone was worth the 850 km return trip.
So here I am, getting a transfusion since 7:30 am this morning. I am really hoping to sleep in tomorrow!
Deb
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