You need a solid confirmation that you do indeed have MAC and a solid treatment plan. You might need a pulminologist with some more Mac experience

I agree that it is an extremely impactful, horrible disease. But my first CT scan looked so bad the radiologist described it as likely metastatic disease and recommended a pet scan, which I had. I was so scared, because basically the radiologist thought it could very well be cancer and they were looking for a primary tumor. I was very thankful - to say the least - not to have lung cancer! MAC Lung disease won't kill and there is a lot you can do to help yourself. There are many practical things such as only drink water you boil a minimum of 10 minutes because that's how long it takes to kill the bacteria. You don't take showers because the aeration of the water makes it easy to breathe the mycobacteria. Really make a huge effort to cough and keep your airways clear. Sleep with your upper body elevated. I take NAC supplements and swear by them. There are just a lot of things you can do and the most important thing is to exercise. One doctor told me use your lungs or lose your lungs because that's when they clean themselves.