MAC forever?

Hi Harry! I am living proof that MAC can go away. Some people do what you do, and it helps them. I had no choice and did both oral and inhaled medication. As of 8/2022 I am MAC free, so yes it is possible to be free of it. I was diagnosed in 2015 so it was a long road. Like you I did not want to do medication . Life is all about choices. Mine were pretty much taken away from me as I was so sick, but I’m MAC free and still here! ( irene5)

I was diagnosed with mac in 2018 and had no symptoms till 2022. I was very sick for months before I started the treatment- constant cough so deep and exhausting without anything coughed up, lung infections etc- so when I started the treatment I was relieved on one hand and scared of the side effects on the other hand. Well I am doing it since April and I am surviving; I still have some cough, nothing to cough up but do the deep breathing, huffing, aerobica and walk every day if weather permits. So i would say the side effects such as nausea etc you might have or might not- I do not although I was terrified of them before I started the treatment. Some days you might be very tired and some days you function pretty well. I learned to go by present day and I do not even plan a day ahead. It is not easy but then you think there are other people like you and you can share your thoughts on this forum.

MAC can go away, it can always come back along or another infection can set in.

Harry, it can all be overwhelming. I was diagnosed fall 2021 with bronchiectasis in a CT and MAI through a bronchoscopy. My pulmonologist sent me to an ID doctor and both wanted me to start the antibiotics even though I had no symptoms and didn’t cough up sputum. I refused. She started me on airway clearance a month later (albuterol & 7% saline 2 x day) but no instructions etc. I balked at doing that too but then reading posts from the people on this forum drove home how important it is so I started being more consistent with airway clearance. I ended up going to National Jewish Health last December for their knowledge and input. My 3 sputum samples from there did not show the MAC nor did another sputum sample this spring. They don’t think it’s gone but knocked down. They agreed with my decision not to take the treatment. I do show other bacteria- Haemophilus influenzae but they said if I wasn’t having symptoms, they wouldn’t treat it either (even though it would be a short round of a single antibiotic). So as many have said, it is possible the saline can keep the NTM knocked down. I do mask up when shopping and other things that require me to be inside and I very rarely eat in a restaurant. Because of the bronchiectasis I know I’m susceptible to different kinds of bacteria settling up shop in my lungs. As far as nebbing the rest of my life, I’m resigned to it. I’ve had longer to adjust to it and I’ve been blessed to show it can pay off.

Thanks! That's encouraging. I had a CT last week, and get the results
7/25 when I see the pulmo. I think I'm scheduled for more sputum
samples in Sept.
Harry