Does reducing exposure to Mycobacteria ( NTM) work?

Please share Dr. Joseph Falkinham’s paper with your pulmonologist.

Your pulmonologist is correct that high quality clinical trials in this area are limited. As a result, much of the guidance relies on microbiology research, primarily studies examining water and water systems rather than direct patient based research.
https://pubmed.ncbi.nlm.nih.gov/23460009/
PS - Twice daily airway clearance with hypertonic saline is the cornerstone of BE management and pathogen avoidance.

@scoop thank you so much for sharing the paper. I will show it to her . I have a feeling though , it will not change her opinion , since there is no evidence based science showing that by taking risk reduction precautions , you can prevent a MAC infection . It wasn’t that she isn’t knowledgeable about MAC sources in plumbing , air , water, etc. She was very studied and we discussed it all . , Her contention is basically what was stated in the paper ,
“All NTM-infected patients likely have a pre-disposing factor that makes them
much more sensitive to NTM. “
This is why I’m wrestling with it all. I’ve had mild BE for at least 8 yrs. ( shown on numerous CT’s) . Unfortunately this diagnosis was never communicated to me until a year ago…(long story).
As a result , I’ve never taken any precautions , because I didn’t know to. My lungs have remained stable . I neb daily . If this doctor is right , I would hate to spend a great deal of time and effort on trying not to catch something that I may not catch anyway, regardless of my shower head , drinking water , etc. If she’s wrong , I may eventually be on the Big 3.
I wish there was some definitive research on this very important subject .

@cholash & @scoop My pulmonologists (yes I am in the lucky very small percentage to have a team of 2 great docs who practice together!) have a theory. Caveat - in their own words, this has not been subjected to rigorous research - since I do not have reflux/GERD. even the "silent" version (after testing), my risk as far as drinking water, etc, is lower.

However they are now recommending shower-head/hot water precautions based on anecdotal experience with a colleague who developed MAC with mild bronchiectasis in spite of few risk factors.

They have always been adamant about soil exposure and wearing masks, and about masking in crowds, especially during cold/flu season and always on airplanes.

These precautions have kept me MAC free for over 6 years, after 2 very difficult years of antibiotic therapy.

@cholash my NTM specialist at NJH said the exact same thing to me, almost in the exact same words. What is hard to square with that position is that not long after that NJH visit, NJH had their annual NTM patient day, not sure of the program’s official title, and Dr. Honda was one of the featured speakers, addressing environmental exposures. Talk about mixed messages?!

@sueinmn I’m so glad you have been able to keep yourself well for so long! Thanks so much for sharing yours & your doctor’s experience . To clarify , the masking in airports & crowds is for other transmissions , but not MAC, correct ? Do you mask the entire flight ? I have a pilot friend who claims once in air , the HEPA filters take over . That’s what she was taught with AA. She wears a mask until at a good flying altitude , removes, then puts back on for the descent and until off the plane .

@bayarea58 wow, yes, makes it really hard to navigate it all when the “experts” don’t agree on this very important subject. FB groups go to great efforts , teaching you different ways to keep from getting MAC. They make it sound like a solid , proven science. That’s how I initially learned about precautions . I guess until there are finally some evidence based studies proving one way or the other , we are all left to wrestle with the unknown.

I dont think they actually know where/why some people get MAC - soil/air/water - could be numerous things or a combination of things - just like anything else and any other disease. I do believe I developed mine thru dirt/air from mowing our newly bought home and having alot of dirt/dust around me without wearing a mask. My pulmonary is blaming past lung damage to cigarette smoking when I was in my teens - I blame the last bout of covid that I had as I started having difficulty breathing after I had covid for the 2nd time. but it doesnt matter which it was, as at the end of the day - I had some prior lung damage and then caught MAC.

It was just on our news not long ago about new airborne lung infection (they didnt call it MAC) that was appearing around an area that was being newly developed for a new subdivision and all the earth being moved and particles in the air and warned people about it. (I believe they said the site was somewhere in TX but I could be wrong).

I was just diagnosed with it about 6 months ago - so far I am only inhaling 7% saline in a neb and using an inhaler 2x a day. It's manageable but I still cough and have to clear my throat. Im just not letting this disease define me and living my life as close to what I always have lived it. Good luck everyone!!!

@rockinkranch Agree that the dirt/dust Could (?) have been the issue. Seems potting soil & dirt are 1 exposure many of the experts agree on. I hope your new diagnosis stays manageable for you. I think you have a great perspective . Best of luck with your treatment !