← Return to Anyone doing "watchful waiting" with ACTs but no antibiotics?

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I was diagnosed last year with macrolide resistant M. Abscessus. May 2nd, 2025, I started on Arikayce, Nuzyra, and Linezolid, which made me nauseated 24/7. Zofran did nothing for me. I lost my voice to a whisper-due to Arikayce. I went to NJH and they told me there had been no changes in my CT scan since March of 2024 and my count was only 400, so I decided with my doctors approval to go off the meds and do "watchful wait". Last week, I got a message that none of my cultures were growing mycobacterium. Two sputum cultures were taken during my NJH stay. I still have 1 week left on test but considering M. Abscessus is fast growing, most likely I will get a negative test result. Cause for celebration? Most of us know, antibiotics are taken at least 6 months after the first negative test and think in most cases it's 12 months. So, I will be returning to NJH for my 3 month follow up in August and if everything looks good, I will go every 6 months. I use the Aerobika with the Ombra compressor with 7% saline twice per day. Suggested use is before breakfast and dinner. I highly recommend the Ombra, since the tubing and filter can be changed. I am also swimming at least 4-5 days per week in an outdoor pool. I live in AZ and in the summer it's too hot to walk. NJH recommended I do airway clearance before swimming.

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Replies to "I was diagnosed last year with macrolide resistant M. Abscessus. May 2nd, 2025, I started on..."

Things sound pretty promising for you! Thanks you for sharing your good news. It really helps me a great deal to know that others have chosen watchful waiting as a pathway. Brava to you for having the courage to explore this possibility. Please keep me in the loop from time to time. Your courage helps me a great deal. Thank you! Nancy