Options if MAC goes untreated

Hi friends -
I was diagnosed about 18 months ago with Bronchiectasis and MAC. I’m 61 years old and otherwise very healthy. I have a wonderful doctor at Mt Sinai in NYC and I am doing airway clearance two times per day, I take NAC two times per day, I eat a healthy diet and get moderate exercise (I should do more). I boil all of my drinking water for 10 minutes. I don’t shower and instead take shallow baths. My scans have not gotten worse, and if anything have improved a little bit. I am pretty much asymptomatic. No one would ever know that I’m sick. Sometimes I get tired in the afternoon. I test my sputum monthly and I’ve had two negatives in a row on occasion, but never three in a row. I am discouraged because I thought I was on an upward trend of negatives and now they are coming back positive again. My question is, how long can I continue with this “treatment” plan. In other words, is there some point at which the doctor might say, “The steps you’re taking are not getting you better and we have to add antibiotics?” Or should there be some point at which I say that for myself? I guess what I’m asking is can I just continue to live this way indefinitely, with a MAC infection in my lungs? How long can we live like this? Thank you all so much for any guidance or perspective.

Are you using 7% saline nebs before airway clearance? This is thought to reduce the growth of MAC.

Yes I am. 7% twice a day with religious fidelity.

I think this is a question many of us wish there was a definitive answer for. I think we would get a different answer to your question from the professionals and those of us here on this site. I also do as you do, boil all water, limit my showering to enable the shower head to dry out, keep the hot water tank over 150 degrees, removed all faucet strainers etc. etc.
My one symptom, clinical, is the constant need to clear my throat. No fever, chills, fatigue, very much good to go all day long etc. etc. and gaining weight at this point and blood tests all good so far. My sputum vile tests DO/DOES come back with MAI, the October C Scan shows two areas of improvement and one new area of mucus plugs...no cavities. My BE specialist wants me to start the two antibiotics vs further watchful waiting. . I am able to clear out mucus and mucus plugs...no problem so far getting all this up and out. I am 82....hard to believe however.
I am on the verge of possibly starting them just to see if they will help this need to constantly clear my throat of sputum....yet....I hesitate also but fear what could happen if I don't or do take them and some other illness takes hold of me also....flu, pneumonia, Covid etc. Then what in terms of medications and antibiotics.???? I do mask nearly all the time outside my home with an N95 mask and worry when going to the doctors office, for example, and you have to remove the mask for various "look/see" reasons by the doctor who sees all patients all day long all week long. Oh well.
Yes guidance and perspective is always good to hear from others in view of decision making.
Barbara

@sueinmn I have read about saline nebs on quite a few posts. Do most people with BE use it?

Also, can or should it be used as a preventative option to try to avoid MAC? It does sound like it helps to clear mucus as well. I do a lot of what has been recommended by people on this site, but I wasn’t directed to use it.

Hello, you can go on facebook Lung matter group to find a lot of information.

If your Pulmonologist is at all familiar with BE, he or she would recommend airway clearance with hypertonic saline usually 7% and usually daily. It is the most important thing you can do according to all the experts of BE or MAC etc.

For those wit Bronchiectasis, one of the pillars of disease management is daily airway clearance, which can be done many different ways. This is to keep the lungs clear of mucus, where germs hide. Would you please describe your self-care routine? Do you do daily airway clearance? Are you seeing a pulmonologist?

Hi everyone!
I completely agree that airway clearance is essential. As Dr. Lommatzsch from National Jewish Health emphasizes, the three pillars of bronchiectasis management are:
1. Airway clearance,
2. Airway clearance, and
3. Airway clearance! 😄

That said, I cleared my MAC infection without antibiotics, but airway clearance wasn’t the only strategy I relied on. I made significant changes to multiple aspects of my life, including my diet, BMI, reflux control, exercise routine and stress management. Over time, these small, consistent changes added up. It’s important to note that I didn’t have cavitary disease or other comorbidities that could have impacted my health.

I like to think of it this way: I built a “brick house,” not one made of straw or sticks. As an experienced health educator and coach, I approached my own health as if I were my only client, dedicating two years to this journey.

The hardest part was trusting in the process and being patient. I hope this is helpful,
Linda Esposito

Hi Sue -
I hope all is well with you. I was wondering if you had thoughts about the question I posted a couple of days ago after my follow up regarding my twice-daily practice of nebulizing with 7% saline. I value your feedback if you have a moment. I’ve attached a chart showing the roller coaster of results. Thank you so much for all you do on this platform for all of us! -Jill