@capletcher Not @thumperguy here, but let's talk about why the long-term antibiotics are prescribed for MAC.
When I started therapy almost 8 years ago, and gasped when the doc told me how long I would need the meds, he explained "MAC is slow to grow and slow to go..." He explained that a single negative culture is not definitive, and stopping at that point nearly guarantees the infection will return.
A little history - my first negative cultures did not come until more than a year on antibiotics, and by that time I was taking them daily. Back in 2019, Amikacin/Arikayce for stubborn infections was still in clinical trials, so they just upped the dosage of the "Big 3." And the usefulness of 7% saline was still being debated, so I was using levalbuterol and 0.9% saline. In about October 2019, I switched to 7% saline, had my first negative culture, and was thoroughly miserable from the daily meds.
In December, my ID doc (consulting with my pulmonologist) consented to stopping the antibiotics and just continuing 7% saline and airway clearance.
For the next 2-3 years, I nebbed 7% twice a day and recovered from antibiotics. Since then, I have negative cultures and stable CT scans, and have gradually reduced saline nebs to a few times a week with airway clearance every day. I also got my asthma under control.
The bottom line? In 2026, doctors very experienced with MAC are sometimes more willing to "watch and wait" before using antibiotics. This isn't passive, it includes daily airway clearance (usually with 7% saline) and regular monitoring with sputum cultures and CT scans. This is only a possibility IF you do not have extensive infection heavy bacterial load, cavities or large nodules in your lungs, and have few/mild symptoms like weight loss, cough and fatigue. If I ever test positive again, my doctors and I will consider all these factors before deciding on a course of treatment.
Are you under the care of someone experienced with MAC and Bronchiectasis?
@sueinmn I’m so delighted for you and your story. I am still in the battle of a new regimen, arykace was removed due to severe coughing. I now just take azithromycin and ethambutol. Always getting blood test, hearing tests, eye test and the whirlwind of this has me frazzled. I also work 3 hours a day as a cleaner for the local police department. Still fighting a flare up I got in December and it’s just such a battle. But I love reading stories like this. It gives me hope. Thanks for your story.
I have had MAC since around 2010. I was on the famous 3 super antibiotics for a year. The MAC went dormant for about 10 years then returned with a vengeance after I had covid in 2024. In 2025 I was on a picc line with Cefepime, an oral, Clarithromycin, and Nebulized with Arikayce for four months. It killed my gut. I have lost 20 lbs. I still have no appetite & can barely eat. I have such shortness of breath, and very weak. It also has promoted osteoporosis and I have 5 fractures in my lower back. I saw your post one week ago started nebulizing with 7% saline twice a day. How long does it take to feel better? Does it really help to reduce the MAC? Is there anything else that might help?? My Dr now recommends Brinsupri. Gayle
@capletcher Not @thumperguy here, but let's talk about why the long-term antibiotics are prescribed for MAC.
When I started therapy almost 8 years ago, and gasped when the doc told me how long I would need the meds, he explained "MAC is slow to grow and slow to go..." He explained that a single negative culture is not definitive, and stopping at that point nearly guarantees the infection will return.
A little history - my first negative cultures did not come until more than a year on antibiotics, and by that time I was taking them daily. Back in 2019, Amikacin/Arikayce for stubborn infections was still in clinical trials, so they just upped the dosage of the "Big 3." And the usefulness of 7% saline was still being debated, so I was using levalbuterol and 0.9% saline. In about October 2019, I switched to 7% saline, had my first negative culture, and was thoroughly miserable from the daily meds.
In December, my ID doc (consulting with my pulmonologist) consented to stopping the antibiotics and just continuing 7% saline and airway clearance.
For the next 2-3 years, I nebbed 7% twice a day and recovered from antibiotics. Since then, I have negative cultures and stable CT scans, and have gradually reduced saline nebs to a few times a week with airway clearance every day. I also got my asthma under control.
The bottom line? In 2026, doctors very experienced with MAC are sometimes more willing to "watch and wait" before using antibiotics. This isn't passive, it includes daily airway clearance (usually with 7% saline) and regular monitoring with sputum cultures and CT scans. This is only a possibility IF you do not have extensive infection heavy bacterial load, cavities or large nodules in your lungs, and have few/mild symptoms like weight loss, cough and fatigue. If I ever test positive again, my doctors and I will consider all these factors before deciding on a course of treatment.
Are you under the care of someone experienced with MAC and Bronchiectasis?
@sueinmn Yes, I am happy with my UCSF team and also have a local pulmonologist so I don't have to schlepp to San Fran every time I need a test. UCSF has a dedicated airway clearance guy, Jeffrey Tarnow, and I plan to run this question by him and my doc to get their opinions.
@capletcher Not @thumperguy here, but let's talk about why the long-term antibiotics are prescribed for MAC.
When I started therapy almost 8 years ago, and gasped when the doc told me how long I would need the meds, he explained "MAC is slow to grow and slow to go..." He explained that a single negative culture is not definitive, and stopping at that point nearly guarantees the infection will return.
A little history - my first negative cultures did not come until more than a year on antibiotics, and by that time I was taking them daily. Back in 2019, Amikacin/Arikayce for stubborn infections was still in clinical trials, so they just upped the dosage of the "Big 3." And the usefulness of 7% saline was still being debated, so I was using levalbuterol and 0.9% saline. In about October 2019, I switched to 7% saline, had my first negative culture, and was thoroughly miserable from the daily meds.
In December, my ID doc (consulting with my pulmonologist) consented to stopping the antibiotics and just continuing 7% saline and airway clearance.
For the next 2-3 years, I nebbed 7% twice a day and recovered from antibiotics. Since then, I have negative cultures and stable CT scans, and have gradually reduced saline nebs to a few times a week with airway clearance every day. I also got my asthma under control.
The bottom line? In 2026, doctors very experienced with MAC are sometimes more willing to "watch and wait" before using antibiotics. This isn't passive, it includes daily airway clearance (usually with 7% saline) and regular monitoring with sputum cultures and CT scans. This is only a possibility IF you do not have extensive infection heavy bacterial load, cavities or large nodules in your lungs, and have few/mild symptoms like weight loss, cough and fatigue. If I ever test positive again, my doctors and I will consider all these factors before deciding on a course of treatment.
Are you under the care of someone experienced with MAC and Bronchiectasis?
@sueinmn
I was diagnosed with MAC in 2020 which led to bronchiectasis. My pulmonologist took the conservative approach, not prescribing the 3 required antibiotics because in her experience patients had such awful reactions and hard time while on the drugs, only to have MAC return after treatment. Instead, I have used Albuterol/ipratropium bromide solution twice a day in my nebulizer and for past two years she added Budesonide solution to the mix. The Budesonide causes dry throat but helps stave off infections. I also use a Respirtech airway clearance machine (thankfully approved by Medicare) while using my nebulizer. I wear a vest that the machine inflates that shakes my chest. I get routine breathing tests and CT scans. To date, my MAC and bronchiectasis have not progressed. I am now 75. I try to stay physically active (despite arthritis)with daily walks and housework. The bronchiectasis continues to affect my weight so I make a point to increase calorie intake and I do get bouts of fatigue. My disease has not kept me from enjoying life. At this point, I do not think all the antibiotics would have been the better option.
@sueinmn
I was diagnosed with MAC in 2020 which led to bronchiectasis. My pulmonologist took the conservative approach, not prescribing the 3 required antibiotics because in her experience patients had such awful reactions and hard time while on the drugs, only to have MAC return after treatment. Instead, I have used Albuterol/ipratropium bromide solution twice a day in my nebulizer and for past two years she added Budesonide solution to the mix. The Budesonide causes dry throat but helps stave off infections. I also use a Respirtech airway clearance machine (thankfully approved by Medicare) while using my nebulizer. I wear a vest that the machine inflates that shakes my chest. I get routine breathing tests and CT scans. To date, my MAC and bronchiectasis have not progressed. I am now 75. I try to stay physically active (despite arthritis)with daily walks and housework. The bronchiectasis continues to affect my weight so I make a point to increase calorie intake and I do get bouts of fatigue. My disease has not kept me from enjoying life. At this point, I do not think all the antibiotics would have been the better option.
@chisintexas Yes, treatment of MAC is truly a balancing act. I am glad to hear that conservative measures are working for you. I am about your age, and if my MAC came back, I am pretty sure I would go with conservative treatment because the antibiotics took a toll on me 7 years ago.
Has your doctor done repeat sputum cultures to monitor the level of infection? Have they ever suggested nebulizing with 7% saline, which seems to reduce/eliminate the ability of mycobacteria to reproduce?
I am just starting the trio of antibiotics today and needless to say I am very nervous about it. I have had MAC before many years ago. I have had bronchiectasis since I was 5 years old and am 73 now. This all started with disseminated coccidioidomycosis (valley fever). I had it in my throat and ear and underwent surgery for both. Then a few months later, I got pneumonia. Now I tested positive for MAC. I went from 135 lbs to 90. I have been on fluconazole for over a year to treat the disseminated coccidioidomycosis. I am also on Brinsupri which I just started about 10 days ago. I use an airway clearance vest daily and nebulizer. Sometimes I feel like I will never get better and that just makes things even worse. Sorry about my rambling...
I am happy to report that, YES, after 2 years and 10 months on azithromycin, rifampin and ethambutol, I have been pronounced clear of MAC lung disease. I also tried the inhalant Arikayce, but could not continue with it, as my lungs could not tolerate the protocol. I must say that my case of mycobacterium avium intracellulare was not severe, and it did not include bronchiectasis.
@chisintexas Yes, treatment of MAC is truly a balancing act. I am glad to hear that conservative measures are working for you. I am about your age, and if my MAC came back, I am pretty sure I would go with conservative treatment because the antibiotics took a toll on me 7 years ago.
Has your doctor done repeat sputum cultures to monitor the level of infection? Have they ever suggested nebulizing with 7% saline, which seems to reduce/eliminate the ability of mycobacteria to reproduce?
@sueinmn My pulmonologist ordered one last year but I haven’t done a repeat sputum sample because I had trouble collecting it and when I finally succeeded, the lab was closed. I haven’t had gross sputum for several months, mostly clear if that makes a difference?I can ask her for new orders and try again.
No I have not tried 7% saline as it was not suggested. Is this something for which I need a prescription? I will ask her about it in April when I I see her following CT scan. Thanks
@sueinmn My pulmonologist ordered one last year but I haven’t done a repeat sputum sample because I had trouble collecting it and when I finally succeeded, the lab was closed. I haven’t had gross sputum for several months, mostly clear if that makes a difference?I can ask her for new orders and try again.
No I have not tried 7% saline as it was not suggested. Is this something for which I need a prescription? I will ask her about it in April when I I see her following CT scan. Thanks
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@sueinmn I’m so delighted for you and your story. I am still in the battle of a new regimen, arykace was removed due to severe coughing. I now just take azithromycin and ethambutol. Always getting blood test, hearing tests, eye test and the whirlwind of this has me frazzled. I also work 3 hours a day as a cleaner for the local police department. Still fighting a flare up I got in December and it’s just such a battle. But I love reading stories like this. It gives me hope. Thanks for your story.
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1 Reaction@florage7 I think I answered your questions here:
https://connect.mayoclinic.org/discussion/has-anyone-ever-been-cured-of-mac/
@sueinmn Yes, I am happy with my UCSF team and also have a local pulmonologist so I don't have to schlepp to San Fran every time I need a test. UCSF has a dedicated airway clearance guy, Jeffrey Tarnow, and I plan to run this question by him and my doc to get their opinions.
@sueinmn
I was diagnosed with MAC in 2020 which led to bronchiectasis. My pulmonologist took the conservative approach, not prescribing the 3 required antibiotics because in her experience patients had such awful reactions and hard time while on the drugs, only to have MAC return after treatment. Instead, I have used Albuterol/ipratropium bromide solution twice a day in my nebulizer and for past two years she added Budesonide solution to the mix. The Budesonide causes dry throat but helps stave off infections. I also use a Respirtech airway clearance machine (thankfully approved by Medicare) while using my nebulizer. I wear a vest that the machine inflates that shakes my chest. I get routine breathing tests and CT scans. To date, my MAC and bronchiectasis have not progressed. I am now 75. I try to stay physically active (despite arthritis)with daily walks and housework. The bronchiectasis continues to affect my weight so I make a point to increase calorie intake and I do get bouts of fatigue. My disease has not kept me from enjoying life. At this point, I do not think all the antibiotics would have been the better option.
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2 Reactions@chisintexas Yes, treatment of MAC is truly a balancing act. I am glad to hear that conservative measures are working for you. I am about your age, and if my MAC came back, I am pretty sure I would go with conservative treatment because the antibiotics took a toll on me 7 years ago.
Has your doctor done repeat sputum cultures to monitor the level of infection? Have they ever suggested nebulizing with 7% saline, which seems to reduce/eliminate the ability of mycobacteria to reproduce?
I am just starting the trio of antibiotics today and needless to say I am very nervous about it. I have had MAC before many years ago. I have had bronchiectasis since I was 5 years old and am 73 now. This all started with disseminated coccidioidomycosis (valley fever). I had it in my throat and ear and underwent surgery for both. Then a few months later, I got pneumonia. Now I tested positive for MAC. I went from 135 lbs to 90. I have been on fluconazole for over a year to treat the disseminated coccidioidomycosis. I am also on Brinsupri which I just started about 10 days ago. I use an airway clearance vest daily and nebulizer. Sometimes I feel like I will never get better and that just makes things even worse. Sorry about my rambling...
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Like -
Helpful -
Hug
3 ReactionsI am happy to report that, YES, after 2 years and 10 months on azithromycin, rifampin and ethambutol, I have been pronounced clear of MAC lung disease. I also tried the inhalant Arikayce, but could not continue with it, as my lungs could not tolerate the protocol. I must say that my case of mycobacterium avium intracellulare was not severe, and it did not include bronchiectasis.
@sueinmn My pulmonologist ordered one last year but I haven’t done a repeat sputum sample because I had trouble collecting it and when I finally succeeded, the lab was closed. I haven’t had gross sputum for several months, mostly clear if that makes a difference?I can ask her for new orders and try again.
No I have not tried 7% saline as it was not suggested. Is this something for which I need a prescription? I will ask her about it in April when I I see her following CT scan. Thanks
@chisintexas If you have a nebulizer, you can but 7% saline without a prescription online, but it may be cheaper at the pharmacy with an Rx.
@sueinmn Thanks!