Like you I have sought the answer to this question for the past almost 13 years. No doctor would ever give me an answer. I was diagnosed in 2010, failed the Big 3 twice, and up until last June remained fairly stable with the NTM waxing and waning. Last June I was advised by my NJH doctor that I needed to have robotic surgery to remove a portion of my upper left lobe, and that I needed to try the antibiotics again. When I returned to my hometown, I sought out a local pulmonologist and an Infectious Disease doctor in order to begin the drugs and prepare for returning to Denver for the surgery. Both doctors said that I wouldn't be able to take the drugs and that surgery wasn't needed. The ID doctor said that I should go and enjoy whatever life I had left. I was a jumble of emotions, both grateful and crying a million tears - then got on with it.
I'm a 70 year old woman who has had other major surgery (sub-total colectomy) and is in stage 3 kidney disease. I am 5'6 and weigh 115 lbs. I'm active, still walking 2-3 miles every day, playing with my dog, and up until the pandemic, continuing to work in our family business.
I just saw my local pulmonologist yesterday. He showed me the CT which shows a cavitary nodule that has doubled in size since last August. He said the drugs are a must but since we already know I'm allergic to azithromycin I need to see the ID doctor to find a substitute. First though, I must have a hearing test, vision test, and blood work done. I'll jump through whatever hoops I must while I wait for an appt with my NJH doctor...and try to continue living each day. It's been almost 13 years of a pretty darn good life in spite of NTM. Hang in there - I know I'm trying to.