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.

@westcottkm3040 I agree with your doc. I think it kills the majority but I reckon the bacteria is like an army, only killing those on the front line and the others are safely tucked away to rebuild. That’s how my mind sees it. I read somewhere about UV light bottles that they will destroy the culprit but allow air and light into play and they can rebuild. My next experience after MAC treatment will confirm my suspicions. I had a negative result 3 months after starting meds. Will finish in March 15 months total. I will continue to boil water, do airway clearance and see how I go 🤞

My doctor from the beginning that it might return. When I had it 10 years ago it showed on chest x-ray and that is where it showed up again. It has always showed up that way since I don’t have a productive cough and can’t get a sputum sample.

@laneyk
I have never produced any sputum either. I had nodules in lungs. Doc did biopsy wash. Negative for cancer but positive for mycobacterium intracellulare. (MAI). Scheduled for another broncoscopy in December. No biopsy this time.
Nov 25th marks one year on meds.
I was told ct would show nodules forever and Bronchoscopy was only way to confirm only if infection was gone. I live in a town that doesn’t have good resources and I do not have a choice in doc.
What else can I do?
Any suggestions would be greatly appreciated.

@arkie01 I have scarring too, that will forever show on chest x-ray and CT. It sounds like you’re doing all you can do. I was able to produce sputum while in hospital 10 years ago and my recent stay. I don’t know if a bronchoscopy will be done this time or not. I’m voting for not. I wish you well!