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DiscussionDoes reducing exposure to Mycobacteria ( NTM) work?
MAC & Bronchiectasis | Last Active: Apr 5 8:30pm | Replies (37)Comment receiving replies
Replies to "@annagh I’ve heard of your doctor , and recognize that he’s kind of a big deal..."
@cholash I was nebbing twice a day in the beginning, plus walking, which I find very helpful in bringing up mucus. Then in a video I saw Dr. Winthrop say he thinks exercise is more important than a second nebulizing session. So when I had trouble fitting it all in I’d skip the second nebbing session, which didn’t seem to make much (if any) difference. I eventually settled on one session per day.
My CT scans have been relatively stable since my diagnosis in 2022, and MAC only shows up in an occassional sputum sample, so I was on watch and wait. But this year Dr. W looked again at the older scans and said, although it’s slow, there is a decline over time and advised treatment. I’m now on daily azithromycin and ethambutol for a year. Within three weeks my cough was gone and almost no mucus. He said while I’m on treatment I can nebulize every other day, so that’s what I’ve been doing. One day though, I was doing some yard clean-up without a mask. It was dry and a bit breezy and I started coughing, so I came in and nebulized. Going for that ounce of prevention!
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@cholash I started out nebbing 2x daily using an AeroEclipse XL attached to an Aerobika, but when I switched to the Pari eRapid I cut down to just 1x per day. More than that felt like I was stripping my lungs! I use 7% saline, but worked up to it, starting with 3%, then 6%.
I very much appreciate this thread's discussion of prevention via aerosolized saline and airway clearance and masking. Makes me feel less crazy for doing these things when I'm "healthy"! I do them to stay that way.