Hey, Becky! I'm glad you are doing okay.
That's very evolved of your doctor to say they don't know everything but let's care for you until they do! I like it.
Remission would be great. I think of it kind of like remission and cancer. Someone can go into remission but they still have the risk of having the cancer come back. It's a hard thing to live with.
How insufficient is your valve? Is your blood pressure high because of it? I'm asking because my Dad had rheumatic fever in the Navy and it damaged his aortic valve. He couldn't have it replaced until the 80's. Years of undiagnosed high blood pressure had caused kidney failure. Has anyone checked your kidney function?
Also, some people can have strep in their bodies, attacking tissues. You don't have to have a sore throat. There's a blood test called a strep titer that they can run to see if you have it "somewhere" in your body. It has been implicated as causing some cases of Tourettes. Just a thought.
I'm glad you stopped by to say hello!

I hope you continue to feel better.
Annie