You are such a wonderful new addition to our group - which I always say is "full of wonderful people who would rather not be here."

When you say, "I am not aware of any study tracking reinfection rates beyond a few years (which I do think is problematic given the high reinfection rates over time)"...I hear you...In the ideal world, researchers and doctors would have all the time and money they need to devote to studying illness and disease, but we all know that doesn't happen. The real problem with the research and study of rare diseases is that dollars are scarce. Compared to Asthma & COPD, Bronchiectasis is a rare disease, and NTM/MAC is far more rare, even though it may not seem like it to us. A choice must be made in most cases between developing new knowledge and treatments and following known patients over time (in our very mobile society.)

And this analysis is right on point: "This group is likely somewhat of a biased patient population. We may be more symptomatic, more frequently dealing with infections and other challenges, more vigilant, more data and research oriented, more anxious and need of support, or just overall more curious than the average patient." In fact, if I had not become a mentor on Connect and in this group, after I lived with my infections and Bronchiectasis, I might well be one of those who only checked in occasionally.

So you will see me say, day after day, in many of our discussions, that every person has a different experience with MAC & Bronchiectasis, different underlying conditions, and a different tolerance for risk in their lives.

Frequently I remind people in other groups, like Joint Replacement or Osteoporosis of the same thing - only (some of) those with problems come looking here for solutions. Even fewer actually post here - maybe one out of 10 members who are reading our discussion actually comment.

I try to remember to respect that aspect in our members, and try to never say "you must", or "never" or "always" and rarely say "you should"...

All that said, I feel like a success story, MAC & Pseudomonas free for over 5 years, with stable Bronchiectasis, and finally controlled Asthma - but knowing that can change at any time. I am forever grateful for all I have learned here, and for all those who have supported me, not just in this group, but the several others where I spend time.

My Dad was always fond of saying "There but for the grace of God go I" and never passed on the opportunity to help, support or cheer up someone else - family, friend or stranger - it is what the other volunteer Mentors and I try to do here each day.

Hi bayarea. You're right about people being treated successfully then not checking back in to the MAC groups. Happened to me. I was so happy to be done with 3 solid years of treatment that I was like "I'm outta here and never want to come back!" I think I started the Mac horror show in 2016. The big 3 didn't seem to work. I was jamming those monsters down my throat for two solid years and still.... mac mac mac. So Arikayce was added to the mix. Another year went by where I was taking the big 3 and arikayce with it. I probably didn't even need those 3 dumb meds. It was the arikayce that did the trick. Anyway by the time I endured 3 years of treatment --- and when I finally got 6 months of negative cultures back I was sick to death of the whole routine so I decided to never go back to a doctor again. I'm done I don't care to even know if there's mac in there. Doesn't seem like it to me. I live alone on a little homestead in the country and I work like a 35 year old man. (I'm 71) When I'm chopping wood or cutting and stacking a field of hay with hand tools I think to myself . "I'm cured." My mind says I'm cured and I believe it.