Does reducing exposure to Mycobacteria ( NTM) work?

@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.

Hi, the mysteries of this condition baffle me. To make a long story short, I was prescribed nebulizing 2 x a day, flutter valve and azyithromyacin every other day. I do not have MAC. I switched my care to a bronchiecstatis clinic in Rochester, NY. I had a pulmonary function test (I was happy to finally get an PFT) and was told I had asthma along with mild bronchiecstatis. I was taken off the azyithromyacin (happy about that, as I was worried about antibiotic resistance) and the nebulizer and flutter valve. I was prescribed an Advair puffer for asthma. I asked about mask wearing for gardening and was told it was unnecessary. The other, younger doctor, however, surreptitiously indicated mask wearing while gardening is a good idea. I was also wondering about GERD as I have been getting pain under my ribs, which has woken me up at night (pain not due to coughing). Recently, my chest heaviness /burning has returned. I can never tell if I’m having a flare and need antibiotics (no fever and I don’t produce enough sputum to expel). I fear I’m turning into a neurotic hypochondriac! My previous pulmonologist’s nurse told me I didn’t look sick , when I felt very sick and had to beg for antibiotics. My next appointment with the bronchiecstatis specialty clinic is in a few weeks via telemedicine, due to distance.

Any advice, thoughts are very welcome. Thanks for allowing me to vent:)

@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.

@kahkej What percentage of saline do you nebulize? When were you diagnosed? Regarding burning in chest sounds like some variation of GERD. Trying a H2 blocker (Famotidine, aka Pepcid, Zantac 360) might help. Also stopping all food and drink 3 hours before sleep helps as does sleeping at an upright angle, for instance, on a wedge. Certain foods can trigger GERD and burning in chest. For me it's onions, a lot of garlic, and dark chocolate if I overdo.

This page describes symptoms of an exacerbation.
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations

@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

@jnmy it’s my understanding that NTM is in most water . It’s just not a problem for the average person . “Is there a biological cause ? “ At this point, I don’t know if it’s been studied . According to my NTM specialist , she’s had a lot of BE patients that never get MAC, and they don’t practice risk prevention . I think “ predisposition “, and what exactly that is, may be the million dollar question .

@cholash Yes, after I posted it I thought that too. NTM is in water, soil, and in the air we breathe. I agree, the predisposition, is the million dollar question.
Are there studies that demonstrate that certain other factors such as Gerd, Asthma, other lung disorders, COPD, maybe smoking etc make it somehow more likely to get infected with NTMs.

Do the structure / damage in the lungs and presence of earlier specific infections play a role? So many questions.

@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 .

@cholash Yes, after I posted it I thought that too. NTM is in water, soil, and in the air we breathe. I agree, the predisposition, is the million dollar question.
Are there studies that demonstrate that certain other factors such as Gerd, Asthma, other lung disorders, COPD, maybe smoking etc make it somehow more likely to get infected with NTMs.

Do the structure / damage in the lungs and presence of earlier specific infections play a role? So many questions.