Hello @ruhdesb and @justjanet,

When I was diagnosed about 9 years ago, there was no blog like this. My Internal Med doc didn't know about NTM/MAC and my CT scans looked like I had lung cancer. I got a very good pulmonologist who was familiar with NTM/MAC. He did not elaborate about side effects, so I didn't know to be scared. But I was quite ill at the time, with cavitary MAC and lesions. He did say some of his patients on the 3 drugs had to find their own way when taking the drugs. And he asked me for a 6 month commitment on the drugs. I saw him monthly for 6 months then every 3 months until he moved to Florida to practice. I then got a fabulous pulmonologist in the same teaching hospital, so familiar with NTM & MAC.

Bottom line is this . . . if you don't know to be scared about the 3 drugs, you most probably won't be. Concerned about them -- yes; scared about them -- no.
And YOU are in control here, it's YOUR body. I negotiate with my current pulmonologist of 7 years. Thru the years, he's given me samples of inhalers to no effect, and we talk about when to do a bronchoscopy or lung lavage and the reason for it, when to try to go off the drugs, when to do breathing treatments, etc. I think I may be an unusual person on this blog . . . I have been on the drugs since 2007 - except for a 6 month stint - and NTM/MAC has always been there. But I feel fabulous and have no complaints. My advice -- find the best doc you can, TALK with him/her and keep them informed, and negotiate your treatment! And enjoy life!

Paula