Anyone knows : Test negative after big 3 regiman treatment for 12 mo

I took meds for 18 months before I was "completely cured". Then after 2 months off meds I had NTM again. My doctor said it wasn't from the original infection but a new exposure, even though it was the same organism as before (M.intracellulare spp. chimerae). He also agreed with me that I most likely picked it back up from the same exposure as before, be it water, soil, or whatever. Take-home message, we can't completely let our guard down around these danged bugs.

We're in the "watchful waiting" phase now. These little suckers are slow growing and if I keep up with my AWC, good diet and exercise, and positive attitude, who knows? I may kick it myself without ever having to take meds again. It's possible!

Sorry to hear what happened to you. Hope your situation is stable and not to take the meds again. Enough is enough. I hesitated for over 15 years to take these antibiotics. The outcome is not compromising and with all these side effects, I don’t even want to give it a try. Just recently, I coughed up blood and CT shows cavities vs just dry cough for those years. Now the doctor prescribed big 3 and Arikayce, 3 times a week, then add one medication a week later , until then daily. Will take monthly blood test to monitor liver and kidney function. Vision and hearing test every 6 months. I can’t thank enough for this group for the support and heartfelt sharing .

@coffcoff my doc says it never completely goes away. You kill off most of the infection. But only need a few spores to start all over again. I have been on the big three or more several times. Test negative after 12-18 months. Then a few years later start again.

@westcottkm3040 Perhaps that is true but according to my NJH MD, who is an internationally recognized expert on NTM, 12 months of negative sputum indicate that the infection is gone. Really, who knows? I guess I'll just have to believe him, but anyway, seeing as the organism is literally everywhere in our environment, avoiding it is next to impossible. And if you, like me, have bronchiectasis and GERD, we're kinda screwed. Sometimes it gets me down, but mostly I'm philosophical about it and carry on the best I can.

My doc Is the head of infectious disease at the university of Alberta. But who really knows. Good luck with your drugs.

Thanks for your inputs. No matter what the outcome is, just treasure the best of our daily lives. If that is what we have to deal with, we just take one day (moment) at a time. Enjoy the sun, go outside, and pray we can go through it every day peacefully. We have friends and group like this that they are like angels around us.