Thank you, Sue. I was diagnosed with MAC and BE several months ago. I see a Pulmonologist and an ID Doctor. Most of the information I found was through my own research which is where I have found groups like this. There are also some wonderful ladies I have spoken to by phone several times. I live in the Huntsville, AL area and it was suggested I go to UAB. They aren’t taking self referrals so I’ve turned to my primary care for help. The ID Doctor won’t refer me unless the treatment isn’t working nor does she want to answer questions. Trying to get answers from the pulmonologist’s staff has not been good, either. If this doesn’t work, I’ll ask for help in getting into Vanderbilt. So, you’re right. Finding a good Dr. is very important. I feel like I was told what I have, here are some things you should do, go figure it out.
I can’t thank everyone in the group enough.