Hi Cattleya, I too had M. Avium Intracellulare (MAI twice and then MAC) prior to testing positive for M. Abscessus. Treatment for the most recent infection included IV amikacin for six months until I developed tinnitus. But I also developed mild cognitive impairment which resolved about 90-95% by a year post-treatment. My pulmonologist also prescribes Levaquin for upper respiratory infections and it works really well every time.

If your pulmonary function tests (PFTs) and CT scan are improved over previous, and you're feeling well, then my understanding is you don't meet criteria for NTM treatment. It's definitely worth a discussion with your doctor at your next visit. While my ID doc wanted to treat when I got sick, my pulmonologist did not, and so we waited until the acute infection resolved and then I felt better again. They work together and agree mostly, but pulmonologist prefers bedaquiline and omadacycline to tigecycline and linezolid as tigecycline can exacerbate malnutrition. And they both agree that while I feel well and am functioning that it's better to wait.

My PFTs improved slightly when I began an inhalent medication (Symbicort) which calms inflammation. PFTs have been stable for several years (at 52% capacity). I have a slight enlargement of a small cavity (2-3cm) and "chronic extensive lung scarring is not appreciably changed" over the past year, and similar over several years. I practice airway clearance (chest vest, nebulizer w/saline and albuterol, spirometer and PEP) and am feeling much better since I began weight training. The sputum dries up and coughing is due to post-nasal drip only so I manage environmental allergies to keep that in check. No night sweats.

Weight training and Pilates or Yoga are so much easier than cardiovascular training which gets me sob if I try to jog. I just walk fast on a treadmill and get HR up to the 120s for a while. You're a lot fitter than I am right now. I'm 62, not working but hoping to resume part-time work virtually. Thanks for asking.

How are your PFTs? Do you have a cavity or two or just nodules or scarring or plugging?

There may be more information on the Facebook group. I'm not on it and don't know its name but you might learn more there. If you can, let us know how your appointment goes in January.