@lmh7 Hi. It is called 'conversion' when a mac patient gets 'cured'. I hope someone who has had mac and it was gone for many years; will jump in and share it with us. I have been free of MAC for five yrs. I did, however, contract a pseudomonas infection in 2016 and that was quickly irradicated. I am staying infection free by taking low doses of monthly antibiotics. Because most of us have bronchiectasis as well; we tend to be prone to catching these bugs. Have you read about how to avoid re-infection?
I was free of mac for 5 yrs and recently came back. Im 58 yrs of age. No hiv, no aids. This time its desseminated.
Ainly in my lymph nodes. I am on the regime of drugs for 2 yrs this time. Any suggestions
I was free of mac for 5 yrs and recently came back. Im 58 yrs of age. No hiv, no aids. This time its desseminated.
Ainly in my lymph nodes. I am on the regime of drugs for 2 yrs this time. Any suggestions
Welcome to the group. I'm sorry you need to be here, but I believe you'll find it a very helpful and caring group.
I don't have MAC-was thought to based on CT's, but cultures were negative, but am bumping it up.
Couple questions-was MAC in your lungs last time and is it also there this time? Are you confident with your medical team? Have an infectious disease doc?
Thank you Don, I am 20 days on the meds now and down almost 6 pounds! I am so nauseous it is hard to eat. I am not a complainer so this is such a new experience. I don't understand what the nebulizing 7% saline is but am trying to find it on the internet. Any information or thoughts on what i should get to try that would be appreciated. i have a call into my doctor now as a neighbor said there are anti-nausea meds? I need something if I'm going to do this for the next year! So thankful I found this site for a better understanding of what is going on! Ina
I can’t speak about antibiotics. I have MAC and pulmonologist is doing wait and see. I will say that nebulizing with 7% saline and using Aerobika for airway clearance seems to be the gold standard in dealing with BE. I recommend joining some of the support groups on FB for BE. I have learned a lot from them, more than from my pulmonologist who is an expert on BE at a large hospital in NYC. Everyone is different but I think the nebulizing and airway clearance is what we all should be doing. Also, I used to get colds 2-3 times a year. I have not been sick at all for over two years since I’ve been doing airway clearance other than having MAC which doesn’t give me symptoms.
Ina, you said, " I don't understand what the nebulizing 7% saline is but am trying to find it on the internet." I'm not the Internet but here's an Okie's take on why it tends to be favored among MAC sufferers. People who know about such things tell us that although lower concentrations of saline are helpful to the extent that they thin mucous which presumably facilitates coughing it up, However, when the concentration reaches 7% it not only thins, but also becomes lethal to mycobacterium avium complex (MAC) infections. Which is most likely the reason a few years ago after switching to 7% from a lower concentration of saline, my Pulmo (for the first time) following a chest X-ray, told me that the radiologist reported that the MAC infection had diminished in size compared to an earlier X-ray.
Don,
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
Ina, I consider antibiotics “cruel and unusual punishment” to force upon oneself; occasionally justifiable but to be avoided if possible. If nebulizing 7% saline won’t do the trick and one must use the microbe assassins I would take measures to offset damage to ones’ Microbiota. A probiotic pill might help. I rely mainly on fermented foods, chiefly kimchi and sauerkraut, some from the refrigerator case at the grocery, but predominantly my own creation.
I enjoy a quiet satisfaction when I realize I have have a “hands on” role in creating my own health supportive foods. Don
@thumperguy
I appreciated your post, as I'm also against using antibiotics any longer than necessary and am just starting the 3 antibiotic regimen while nebulizing with 7% saline and eating lots of fermented foods. Feeling pretty good! I'm curious about your experience: Did you stay on the drugs for a full year or did you stop sooner and just keep the MAC at bay with your nebulizer routine? I'm all for going that route once I test negative for MAC after a month or so of antibiotics. My UCSF doc says to stay on the meds for a year after my sputum is negative for MAC, but I can't imagine doing that to my body... Especially if the 7% saline solution will work.
Don,
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
@florage7 Not @thumperguy here, but someone who took the antibiotics and had weight loss with it.
I'm wondering what follow-up you have had with your doctors since finishing the antibiotic regimen?
Also, I lost over 20% of my body weight on the antibiotics, and had to force myself to eat - six small high calorie meals a day. It took 3 years to regain the weight, which I really couldn't afford to lose. You might need to consult a nutritionist/ dietician to get on a personal eating plan.
As for the weakness, once I began to gain weight, I gradually started a walking plan - just got into it when Covid hit, and by 9 months after starting, I was walking a couple miles daily. I would nebulizer 7% saline, then do my "walk and cough" for airway clearance. This gradually made me stronger, at first I had to take a rest after even a short walk, but gradually got stronger.
Shortness of breath was a different matter. With my pulmonologist, we determined it was caused by my asthma and I got on proper medication for that.
What are your docs doing to treat your osteoporosis?
@thumperguy
I appreciated your post, as I'm also against using antibiotics any longer than necessary and am just starting the 3 antibiotic regimen while nebulizing with 7% saline and eating lots of fermented foods. Feeling pretty good! I'm curious about your experience: Did you stay on the drugs for a full year or did you stop sooner and just keep the MAC at bay with your nebulizer routine? I'm all for going that route once I test negative for MAC after a month or so of antibiotics. My UCSF doc says to stay on the meds for a year after my sputum is negative for MAC, but I can't imagine doing that to my body... Especially if the 7% saline solution will work.
@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?
@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?
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
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@windwalker Hi Terri, Would you mind sharing which antibiotic you are on for pseudomonas? Thanks!
Hello
I was free of mac for 5 yrs and recently came back. Im 58 yrs of age. No hiv, no aids. This time its desseminated.
Ainly in my lymph nodes. I am on the regime of drugs for 2 yrs this time. Any suggestions
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1 ReactionWelcome to the group. I'm sorry you need to be here, but I believe you'll find it a very helpful and caring group.
I don't have MAC-was thought to based on CT's, but cultures were negative, but am bumping it up.
Couple questions-was MAC in your lungs last time and is it also there this time? Are you confident with your medical team? Have an infectious disease doc?
I have a friend who had MAC and she was cured year ago. Maybe 15 yrs.
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Hug
2 ReactionsI can’t speak about antibiotics. I have MAC and pulmonologist is doing wait and see. I will say that nebulizing with 7% saline and using Aerobika for airway clearance seems to be the gold standard in dealing with BE. I recommend joining some of the support groups on FB for BE. I have learned a lot from them, more than from my pulmonologist who is an expert on BE at a large hospital in NYC. Everyone is different but I think the nebulizing and airway clearance is what we all should be doing. Also, I used to get colds 2-3 times a year. I have not been sick at all for over two years since I’ve been doing airway clearance other than having MAC which doesn’t give me symptoms.
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4 Reactions@thumperguy
Don,
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
@thumperguy
I appreciated your post, as I'm also against using antibiotics any longer than necessary and am just starting the 3 antibiotic regimen while nebulizing with 7% saline and eating lots of fermented foods. Feeling pretty good! I'm curious about your experience: Did you stay on the drugs for a full year or did you stop sooner and just keep the MAC at bay with your nebulizer routine? I'm all for going that route once I test negative for MAC after a month or so of antibiotics. My UCSF doc says to stay on the meds for a year after my sputum is negative for MAC, but I can't imagine doing that to my body... Especially if the 7% saline solution will work.
@florage7 Not @thumperguy here, but someone who took the antibiotics and had weight loss with it.
I'm wondering what follow-up you have had with your doctors since finishing the antibiotic regimen?
Also, I lost over 20% of my body weight on the antibiotics, and had to force myself to eat - six small high calorie meals a day. It took 3 years to regain the weight, which I really couldn't afford to lose. You might need to consult a nutritionist/ dietician to get on a personal eating plan.
As for the weakness, once I began to gain weight, I gradually started a walking plan - just got into it when Covid hit, and by 9 months after starting, I was walking a couple miles daily. I would nebulizer 7% saline, then do my "walk and cough" for airway clearance. This gradually made me stronger, at first I had to take a rest after even a short walk, but gradually got stronger.
Shortness of breath was a different matter. With my pulmonologist, we determined it was caused by my asthma and I got on proper medication for that.
What are your docs doing to treat your osteoporosis?
@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?
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1 Reaction@sueinmn
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