Any success with saline only and no meds?

I have not had to take the Big 3 (yet! fingers crossed). It is my understanding that after a certain amount of time, if you don't clear the MAC per sputum culture, they add another medication (per nebulization) to the regime. Are you seeing a Pulmonologist or Infectious Disease physician that specializes in treating MAC disease?

@mch I was in your situation over 5 years ago. The meds, which I was taking daily, were causing many issues of their own. Half of my cultures are still positive for MAC. After consulting with my ID doc, who also talked to my pulmonologist, we discontinued the antibiotics. I continued using a levalbuterol inhaler or neb to open airways, followed by 7% saline twice a day.

Fast forward to today - my asthma is better controlled by a different inhaler, my bronchiectasis is stable, I have no signs of infection and I do daily airway clearance, but use much less 7% saline. In an effort to get a good specimen for testing, I have gone back to daily 7% saline. I average one exacerbation per year that requires short-term treatment.

Note - I have never proclaimed to be cured - I assume someday I will face treatment again, but I am happy with how things are going. The only thing I have never fully recovered is my energy - I must ration it or I crash.

What does your doctor think about stopping antibiotics?

The facebook group Lung Matters is about exactly this. I don't go there anymore because the leader is bonkers, but it contains good information and many stories of bronchies living well with a rigorous protocol of nebbing saline and airway clearance, without antibiotics, steroids, or other drugs. There's also some kooky (mis)information and occasional dangerous advice mixed in, so take with a grain (or vial) of salt. Overall it's worth checking out.

Sue - My understanding, if correct, the Pulmonary Function Test will continually get worse with a continued MAC infection? Is that what you understand? My understanding, if correct, the fatigue also gets worse along with a worsening PFT? My understanding is that MAC worsens our disease, Bronchiectasis...more inflammation. As in many things, one thing affects the other????? Is that what you understand?
My PFT did slightly get worse this last test. April 2025
Barbara

I was on big 3 for two years and still positive. Then airycase inhaled amikacine was added which turned my culture to negative eventually. I have been negative for almost two years after off all the medicine. But I am aspergillosis positive now. You may want to check with your physician for the inhaled medicine.

@mch I agree with @cwal, 2.5 years on the Big 3 when it isn’t working doesn’t sound right. The guidelines suggest adding Arikayce at 6 months if no culture conversion. Have you spoken to your doctor about Arikayce? There is also amikacin, IV or inhaled, as well as some other drugs we hear less about. The standard is to re-evaluate and change up treatment if no culture conversion at 6 months. I was at NJH recently and my doctor said that standard may soon shorten to 3 months as the data is showing that if one doesn’t convert on a drug protocol at 3 months, they are less likely to convert on that regimen and a change should be considered. Something to discuss with your doctor.

Barbara - I don't know about changes in PFTs. Mine never changed throughout my MAC treatment and afterwards until they changed my asthma medication to Symbicort.
As with most other things related to MAC and Bronchiectasis, there don't seem to be any absolutes.

Note that Lung Matters is known to ban anyone who challenges their world view. Without explanation or discussion. To me that is a RED FLAG and leads me to question everything they publish or promote.

Yes, I have been one of the "lucky ones" who has managed five years without a MAC reinfection. But I will NEVER endorse any Web site that says there is only one way to accomplish this.

AND there are definitely people who need to take antibiotics to manage MAC.

That is all I have to say on this matter.