Very interested in MAC/NTM and how it impacts our community. For a year now I have had horrific sputum coughs, almost completely throughout the day, sometimes with, but usually without blood. I had a bad bout of COVID in the fall and I got a bronchoscopy at that time where they did all the cultures/tests for MAC/NTM, but they all came back negative, even the 8 week acid fast smear. All came back negative, but my fear is that those tests all happened while on high dose IV antibiotics, which may have pushed MAC/NTM back enough to get negative tests, but not necessarily enough to clear it from my system (of which I hear it can take over a year of antibiotics to clear).

I'm in a situation now with elevated sed rate and CRP, both over 50. I'm back on high dose pred to get through the day, but this isn't sustainable. I don't know if this is a flare or MAC/NTM. Pulmonology assures me this not MAC/NTM, but I am skeptical as beyond respiratory issues, I am not having any of my classic accompanying GPA symptoms (joint pain, elevated HR, ear/eye/sinus issues). I did have a CT where my Ground Glass issues from COVID in the fall cleared, but I have new Ground Glass in my lower right lobe.

Maybe I should consider myself blessed, but my first 5 years of this I was pretty much in the clear beyond prednisone side effects. However, the last year of respiratory issues has me wondering "does Rituxan no longer work for me?", "am I never going to feel better again?". Am I just clinging to something ultra rare like MAC/NTM in my mind because I can't reconcile the fact my GPA is uncontrolled.

Doctor situation is always a mess. They hate it when they think "you think you know more than they do". I had a rheumatologist shut down on me because I demanded she order a complete urinalysis with microscopic examination because protocol for our disease dictates an examination for red blood cell casts. She was like "who do you think you are: I know one thing, I'm a board certified Rheumatologist, and you're not?". I'll never stop advocating for myself though (and that witch ultimately ordered the test I demanded).

Best wishes to all on this board keep fighting the good fight maybe someday soon I'll figure out what's going on with me.