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 !

@cholash What an interesting post and responses to it.
There is a fairly wide range of opinions even in the scientific community about how to avoid or who might be susceptible to NTMs and MAC.

Is there research that shows that ‘never smokers’ are less likely to have MAC? That might make some sense, but there needs to be scientific studies. Never smokers may have also been exposed to second hand smoke.

Exposure to soil and the peat moss in potting soil is something I try to avoid by masking or moistening the soil and working in non windy environments. I don’t swim in indoor pools. I use bottled spring water or a Lifestraw bottle when travelling.

It would be hugely beneficial if we could easily test water for NTM. With all the new technologies available, this might happen?

The pulmonologist’s statement that some people might be inherently more susceptible to these diseases should be explored if there isn’t ongoing research now.

Is there a biological cause or even a precipitous event in someone’s life that coupled with other factors causes them to develop MAC?

Thanks for posting.

@scoop @rockinkranch @bayarea58 @sueinmn @cholash
So many say "Living My Life".
I can't say I am.
Yes I feel well, MAC Intercellular down to nearly nothing without the antibiotics, light exercise before nebulizing, postural drainage with percussion before and after, mask 99% percent of the time, hot water tank temp. raised, shower head allowed to dry out before another shower, etc. etc. etc. and eat healthy.
However, I for various reasons including the need to clear my mucus after anything I swallow and then wanting to avoid Covid, Flu, Cold, RSV, Pneumonia etc. I avoid, 95% of the time, being out and about in situations where there will be a large numbers of people in close contact. Why,.......because I am more concerned with avoiding all other types of illnesses as outlined...for fear of a hospital requirement, stay.
With living alone there is also that time factor. Having to do all we need to do for our health and then having to do all for ones self and keep up a home...even if you hire some things out it's hard to get it all done and then a good nights rest.
Maybe I need a good talking to. I'm not depressed, just disappointed with the loss of... not.... having to consider so many things that one didn't have to consider before.
I'm trying to find my way out of that mental state and hopefully I will.
So glad I could vent and know there is an understanding by those listening and reading this.
What a journey we are put on.
Barbara