MAC Diagnosis and Medication side effects

This morning I met w Infectious Disease doc for first time, I've chosen to do 'watchful waiting' (instead of Big 3) and CT scan in 3-4 months. Although I do have mild bronchiectasis, I don't seem to have symptoms of MAC (that I notice?) and am a fit/active 53 yr old.
Also, I asked the doctor if the presence of NTM bacteria always correlates w MAC lung disease. She said no, it doesnt. If NTM is isolated in a bronchoscopy or positive sputum culture it should be interpreted cautiously as it does not always indicate lung disease. Has anyone else encountered this information? It was news to me.

Just to understand, will you be having a CT scan in 3-4 months or will you have a follow-up CT scan every 3-4 months?

Exercise and being active is so helpful in so many ways for everyone- lung disease or healthy people. It's good for us physically and mentally!

I had waited 5 weeks after diagnosis and getting susceptibility testing results before starting the big 3. My upper left lung grew a 10 cm cavity without treatment within 30 days. The damage this disease can do is much worse than any side effects of any meds. Once any kind of damage starts, it's almost impossible to reverse it any time soon. I'd be more afraid not to start the meds

I think I'd get another opinion. I was pretty much like you and had a 10 cm cavity grow in my left lung within 30 days before starting treatment. I'd be sure to do your ct scan sooner than later. Any thing going on within the lungs including br
bronchiectasis makes you vulnerable for this mac etc to take over.

By the time I was diagnosed (after years of symptoms), I had a cavity with scar tissue that even made a resection not possible. 6 years later, it is about the same size.

Resection for me was scheduled originally on my left lung. A week before surgery, my right lung collapsed from the MAC spreading. I did go on Arikayce and the cavity shrunk to 5cm but not until 3 years later

I had my first CT scan 4 months ago, and doc wants another in July - so that will be 8 months in
between first and second CT scans

Perhaps this will be helpful. For non-cavitary bronchiectic MAC lung disease, untreated - in this study, only 8% of the patients developed cavities.. The average time for cavity formation was almost 4 years. And that was in patients who had previously been diagnosed with tuberculosis. Yes, new cavity formation is one of the reasons to start antibiotic treatment.
Nodular MAC progresses slowly, cavitary MAC can progress quickly. https://www.sciencedirect.com/science/article/pii/S0954611121000469

"Observation without treatment is recommended for a substantial number of patients with non-cavitary nodular bronchiectic MAC (whoo, that's a mouthful!) after diagnosis considering the possible adverse reactions due to multiple antibiotics."

Follow up CT scheduled for October 2024