One of my primary doctors sent me to a hematologist to get help for the CAEBV. This is because apparently the only known solution for CAEBV is a stem cell transplant. So, I saw the hematologist yesterday and guess what? He said that there is nothing that he can do to help me, and that I need to see an infectious disease doctor, even though none in the area will take me.
This makes me wonder if the health care in the area is really bad or something, because it seems like none of the professionals know what to do for this condition. It’s kind of scary, actually. I’ve talked to other people online with CAEBV who have gotten help from infectious disease doctors and hematologists, but apparently not around here.
I’m not sure what to go going forward. The best thing that I could do would be to see a naturopath, but I can’t afford the out of pocket testing (naturopaths are not covered by my insurance). I’m still thinking, though, about visiting the Naturopathic college in Seattle, but that’s just one more long drive in my already too many drives to that area.
I’m seeing my primary on Tuesday and am going to ask her if she has any ideas. There is also a new antiviral out that is in trials right now that it supposed to treat CAEBV and HHV6.
Overall, it’s really frustrating and heartbreaking to have a rare and serious condition that no doctors seem to know how to treat. And honestly, I’m kind of at a loss for words right now when it comes to it. I’m just upset that I got a no from another doctor in the area.
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