I hear you when you say "...My gut says my poor lungs are just getting too much stimulation/irritation from all the nebbing— but if I stop, then the mucus builds up..." I have wondered about that with some people who seem to have invest a lot of time in airway clearance. So, is it possible that all the irritation by the nebs is increasing mucus production? Or, is it possible that the A. Baumanii infection or the drugs that treated it has really sensitized your lungs, so your old regimen needs to be changed up to calm things down?
So, no way I would try to prescribe a routine for you, but there are other things that can help thin mucus - montelukast (Singulair), guaifenesin (Mucinex or similar - without additives), N-acetyl Cysteine or glutathione tablets/capsules (to avoid introducing any more substances into your lungs) and LOTS of water. Could you ask your doc about using one or more of these?
Also, since your doctor suggested you could go off the budosenide, why not try it? Since you are using it 3-4 times a day, just reduce by once a day every 3-4 days if you are not comfortable with "cold turkey."
Finally, nebulized levalbuterol is irritating to some people, so you could ask the doc about opening your airways with 2 puffs of the inhaler instead. This is what I do unless I am in an active asthma attack.
I'll leaves you with one final thought, from my ID doc 4 years ago "MAC is slow to grow and slow to go" - since this has been going on for years, changes and improvements come very slowly as well. Hang in there!
Sue
Saint Sue, thank you for the time you’ve put into these replies. Yes, it’s So frustrating as ALL the things I’m nebbing can have side effect of irritation….
Yes, I am planning to make a request of my doctor but wanted to accumulate ideas from the forum first as sometimes you guys have had more experience with all this than even my pulm.
I am going to try the lev inhaler tonight instead of nebbing it — did I interpret correctly that you think perhaps inhaler is less irritating than the nebbing of Levabuterol?