Is MAC D inevitable with bronchiectasis

Posted by picartist @picartist, 3 days ago

I never knew anything about MAC D everyone keeps writing about until I got on this website. The only thing I knew when I was diagnosed a year ago was that my Pulmonary Doc said he was every happy I did not have an infection after he did a culture. I had no idea what that culture was for. Now for my question. Does everyone with bronchiectasis eventually end up with MacD?

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I don't know as I was just diagnosed 6/30/25. Waiting for my MAC culture to come back. I sure hope not! I think if we do act's, practice prevention from NTM's, exercise, and sterilize religiously we would be doing all we can to keep Mac and other infections at bay!

REPLY

@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.

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@sueinmn

@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.

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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.

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@irenea8

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.

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I agree! When I was first diagnosed, I had both and the Pseudomonas was treated first and aggressively before treatment for MAC even started. It took over 2 month, but it hasn't been back.

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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.

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@julienneh

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.

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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.

REPLY
@irenea8

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.

Jump to this post

Thank you for the helpful reply. I am writing down questions for my next appointment and your advice will help.

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@sueinmn

@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.

Jump to this post

KU med is also a good center for bronchiectasis and NTM. Dr Schmid is who I see.

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