Is MAC D inevitable with bronchiectasis

@picartist and @kate2025 No, MAC is definitely not inevitable - especially now that Bronchiectasis is being recognized and diagnosed more readily through use of CT scans, so preventive care can begin before you get sick.

Also, back when I was diagnosed, little emphasis was placed on keeping our airways clear, which keeps the bacteria from finding greatnplaces to grow in our lungs.

I have been off antibiotics for 5 1/2 years now, doing daily airway clearance, with only a couple of exacerbations that required any medication.

There is a lot to learn about MAC (mycobateria avium complex, also known as NTM) and our other frequent visitor Pseudomonas. Before protocols were established that included "watchful waiting" nearly everyone with a positive sputum culture was pressured to begin an antibiotic regimen. Now research has shown that there are many criteria to consider - severity of infection, symptoms like fever, weight loss and fatigue, condition of the lungs... quite a few people get by with airway clearance (usually with 3% or 7% saline nebs) and regular monitoring.

And even more promising treatments are coming on line.
This field is changing fast, more doctors and clinics are building expertise, and we are not the "orphan disease" that we were even 5 years ago. If you can do so, it is important to find a doc who is knowledgeable about Bronchiectasis and NTM, or even get a one time consult and a treatment plan from a center of excellence like Mayo, NJH or UT Tyler.

Watchful waiting and airway clearance if you do not have symptoms that warrant treatment in the case of MAC may be different than Pseudomonas. Based on my own experience I would advise anyone who gets a sputum result of Pseudomonas to thoroughly treat it right away no matter what. If treated early on you stand a chance of eradication. You do not want to end up with chronic Pseudomonas.

I was diagnosed with Bronchiectasis just a year ago in August 2024 after 4 years of coughing. I also have severe sinus issues and underwent sinus surgery at Mayo in June 2024. I had 2 prior sinus surgeries with a different ENT (not Mayo) and that is where I believe I was infected with Pseudomonas. I was treated for 30 days in December 2024 with Tobramycin and it seemed to go away (although I suspect it was still in my sinuses).
My new sputum culture just came back with heavy growth of Pseudomonas. A PA wrote saying that it had colonized and right now to stay on the same protocol, Nebulizing 7% saline twice daily. I know this will not eradicate the Pseudomonas and I am nervous that this will just continue to grow.
I see my pulmonologist in 10 days at Mayo.
What questions should I be asking?
Thank you for your help.

I so appreciate all that I have learned from this group.

I would ask about any prophylactic treatments to keep the pseudomonas knocked back (along with nebulizing twice a day). Ongoing treatments usually involves Tobramycin off and on (if you can tolerate it). And or taking Azithromycin 3 days a week. Or just nebulizing and airway clearance.

@picartist and @kate2025 No, MAC is definitely not inevitable - especially now that Bronchiectasis is being recognized and diagnosed more readily through use of CT scans, so preventive care can begin before you get sick.

Also, back when I was diagnosed, little emphasis was placed on keeping our airways clear, which keeps the bacteria from finding greatnplaces to grow in our lungs.

I have been off antibiotics for 5 1/2 years now, doing daily airway clearance, with only a couple of exacerbations that required any medication.

There is a lot to learn about MAC (mycobateria avium complex, also known as NTM) and our other frequent visitor Pseudomonas. Before protocols were established that included "watchful waiting" nearly everyone with a positive sputum culture was pressured to begin an antibiotic regimen. Now research has shown that there are many criteria to consider - severity of infection, symptoms like fever, weight loss and fatigue, condition of the lungs... quite a few people get by with airway clearance (usually with 3% or 7% saline nebs) and regular monitoring.

And even more promising treatments are coming on line.
This field is changing fast, more doctors and clinics are building expertise, and we are not the "orphan disease" that we were even 5 years ago. If you can do so, it is important to find a doc who is knowledgeable about Bronchiectasis and NTM, or even get a one time consult and a treatment plan from a center of excellence like Mayo, NJH or UT Tyler.

@picartist and @kate2025 No, MAC is definitely not inevitable - especially now that Bronchiectasis is being recognized and diagnosed more readily through use of CT scans, so preventive care can begin before you get sick.

Also, back when I was diagnosed, little emphasis was placed on keeping our airways clear, which keeps the bacteria from finding greatnplaces to grow in our lungs.

I have been off antibiotics for 5 1/2 years now, doing daily airway clearance, with only a couple of exacerbations that required any medication.

There is a lot to learn about MAC (mycobateria avium complex, also known as NTM) and our other frequent visitor Pseudomonas. Before protocols were established that included "watchful waiting" nearly everyone with a positive sputum culture was pressured to begin an antibiotic regimen. Now research has shown that there are many criteria to consider - severity of infection, symptoms like fever, weight loss and fatigue, condition of the lungs... quite a few people get by with airway clearance (usually with 3% or 7% saline nebs) and regular monitoring.

And even more promising treatments are coming on line.
This field is changing fast, more doctors and clinics are building expertise, and we are not the "orphan disease" that we were even 5 years ago. If you can do so, it is important to find a doc who is knowledgeable about Bronchiectasis and NTM, or even get a one time consult and a treatment plan from a center of excellence like Mayo, NJH or UT Tyler.

@kate2025,@picartist, sue, @irene8
Sue...liked your words of "was pressured to begin an antibiotic regimen".
I felt that for a year when I kept putting off going on the antibiotics when Tyler was 'pressuring me' to go on them. I was agonizing about what to do because 1. I know myself 2. No fever, 3. no exacerbation, 4. no fatigue etc. and 5. a low count of MAI. Thanks to you and @Irene8 I finally felt comfortable with my decision of not starting the antibiotics.
For me I am overall doing fine even with the MAI infection....meaning I feel fine. The nebulizing to loosen the mucus and all Airway clearance techniques appear to be a great answer to helping keep at bay or away the infection. P.S. Diet and masking in public for me has also helped. I believe my BE goes back a good several years before being diagnosed when I had the first local pulmonologist read an XRay by saying "you just have large lungs", that was 2015 and I was finally diagnosed in 2022 with BE due to my constant saying 'something is wrong."

What I would like to ask and say...
if we do not bring up a mucus plug and the sputum vile is sent in wouldn't that mean they wouldn't get a good enough sample to determine an infection.

I say that because now with all I know that is what I believed happen to me with my original local pulmonologist in 2021 who didn't give any directions or understandings of how to get a good sputum sample. When the test came back he indicated the test was negative for an infection. Yet at that time I would once in a while bring up a deep green 'pus' like piece. I finally came to understand after going to National Jewish that what I was bringing up was a mucus plug. So to me we have to be sure we understand how to produce a good sputum specimen and that what which we are looking to bring up from the lungs is a mucus plug.
Am I correct in my thoughts????
Barbara