Anyone had experience with alternatives to Big 3 drugs for MAC?

Hello, @hame55 and Welcome to Mayo Connect. I just posted a response to another question you asked here:
https://connect.mayoclinic.org/discussion/nebulizer-and-saline-treatment-with-daily-exercise/?pg=5#comment-990696
By the inhaled antibiotic, I think you mean Arikayce? If so, it is currently used in conjunction with one or more of the traditional antibiotics. It is a topic to discuss with your doctors.

NAC (N acetyl cysteine) is a capsule used to help thin mucus and reduce inflammation in your lungs. It is used in combination with airway clearance, and often with nebulized 7% or 3% saline solution. The saline helps make lungs an inhospitable environment for MAC to grow, and also thins mucus to make it easier to expel.

What is your current self-care routine?
Sue

Sue, thank you so much for getting back!!
I am just starting out. I do not have a routine yet. I want to know as much as possible before seeing a MAC pulmonologist. I am looking for one with experience in the Asheville, NC area, if you know of one.
Is it possible to monitor a more benign MAC condition and use the NAC saline therapy?
Looking for answers ...

NAC is a capsule, not a saline spray - please see my reply above. The saline solution is inhaled through a nebulizer so it penetrates deep into the lungs where the infection hides.

I'm not familiar with pulmonologists near you, the best way I know to find one is to start calling pulmonology practices and asking if they routinely treat MAC patients. If you have a hospital that specializes in respiratory care, they might have suggestions for you, too

Can you tell us a little about when and how you were diagnosed? Has anyone suggested you begin airway clearance, one of the pillars of MAC management?
Sue

This link will list all the Drs in your area that have experience with MAC and will also rate them. I see top of your list is Dr Whitehouse an infectious disease Dr. and he is taking new patients https://www.medifind.com/conditions/nontuberculous-mycobacterial-lung-disease/6433/doctors
The saline nebulizing is important. Drs often prescribe 3 or 7% hypertonic saline that comes in little plastic tubes. Then you have to buy a nebulizing system to inhale the saline. Hopefully once you see a good Dr they will recommend it. Some people do not wait for that and just start the saline nebulizing by getting the hypertonic saline on Amazon.

I am SO grateful for your help. Contacting Dr Whiteside today. I am also getting the nebulizer.

I feel I got this MAC from our hot tub, given timing. In your estimation, is it possible to operate a hot tub with no risk for these bacteria, given stories about resistance to chlorine?

For myself, I am able to tolerate the big 3 MUCH easier than either Amikacin iv or the inhaled Arkayce.

Hot tubs are known as "petri dishes" by infectious disease experts. It takes sustained temperatures above 130F to kill NTM, so not possible to eradicate in a hot tub.
Here is what was reported by Dr Joe Falkinham, an expert in NTM issues with water:

"NTM cells, as exemplified by M. avium, are collected by air bubbles rising in a water column and upon reaching the surface the bubbles burst resulting in the ejection of water droplets above the water [33,38]. Cells of NTM and other waterborne pathogens, such as Legionella pneumophila and Pseudomonas aeruginosa, can be collected above (1 cm) water surfaces. Further, the density of NTM cells in the ejected droplets is orders of magnitude higher than the density in the bulk suspension" (https://www.mdpi.com/2076-2607/9/11/2262)

I personally avoid the ever-so-inviting hot tub in our winter community.

For years, we had an indoor hot tub in our home, and I have often wondered if it was the beginning of my problems.
Sue

You might wait to get a doctor to order it so your insurance covers it. As I recall the nebulizer is expensive, and the saline is also covered by prescription.

And as Rick knows we are all different:). Arikayce was easy peasy for me to take with few outward side effects. The Big 3 were a no bueno for me. I could only tolerate Azithromycin or its counterpart Clarithromycin. I think we have to just try what the doctor suggests. Hot tubs are not good for us, but my understanding is the outdoor kind may be ok. We had one that came with our home, but we emptied it and will probably have it dismantled. (irene5)

No hot tubs for me. I got in a pool this past fall only to find out I can't tread water or swim anymore. My spo2 drops rapidly. I've swam all my life. Like the 6 minute walk test, I fail. I bought myself an inflatable life jacket to wear while boating this Christmas. I will not give up to this disease.