Hi,

FIRST: Beware of what's online, lots of untrue and outdated information. I think it's pretty rare for someone to die from MAC. I've been on this site for 2 years and I haven't heard of anyone dying from just "MAC", including those that were diagnosed 20 years ago, or more. Possibly, if one has very severe lung damage-but these days there's lung resection for that. And the future advancements are promising, e.g. phage therapy, new antibiotics, etc. I totally agree with Barbara, you should be around for a long time to enjoy your daughter as a woman.

I live in Scottsdale AZ and there is a Center of Excellence for NTM/BE in Phoenix. Their location and contact information is:

Norton Thoracic Institute at St. Josephs Hospital and Medical Center
500 W Thomas Rd
Phoenix, AZ 85013
(602) 406-4000

I requested a list of doctors there that specialize in BE/NTM from the National Association for BE/NTM and will send via private message. You might want to call and inquire as well but the NTM Association may provide more specific information in regard to an MD's experience and background.

I would also recommend National Jewish Health. Many on this site (including me) have local doctors and doctors at NJH. In my opinion, NJH is the best of the best. The "Centers of Excellence" are trained by NJH. I went for about 9 days, and it was the best decision I made. The locally prescribed treatment that I had just started for M. Abscessus was scrapped-the first week by my NJH ID Dr.
Keep us posted.
Kathy