My body was reacting badly in every way to the antibiotics once the frequency was increased from 3x weekly to daily - nausea, fatigue, body aches, hair loss, weight loss, depression... I never had a negative sputum culture, but after 18 months the nodules were smaller and fewer, the gray areas (ground glass opacities) were gone. So with my ID doc and pulmo, I decided to stop the meds and continue 7% saline and airway clearance along with healthy diet and exercise. I have had some a exacerbations we treated with nebs and occasional steroids. I think I may have had one round of antibiotics for bronchitis.
Now I am awaiting word on whether we will do just a CT or a sputum culture as well as I approach 4 years off the meds. My team believes there is nothing to be gained by doing a culture as long as my lungs are stable in the imaging, and we have no intention of ever starting meds again unless I become seriously symptomatic.
We are all so different in our response to treatment...
Sue