Delaying treatment question

I was diagnosed as MAC positive almost 2 years ago by bronchoscopy. Pulmonologist and ID doctor both recommended starting treatment right away but I refused. My pulmonologist did recommend airway clearance, nebulizing albuterol and 7% saline but didn’t tell me about the need to disinfect my neb cups (which I learned from others). I did go to NJH last Dec and my sputum did not show MAC and has not shown up in the last couple cultures. Doctor doesn’t say it’s gone, just tapped down. I do show other bacteria (homophilus influenzae) which is not an NTM bacteria. MAC is a slow growing bacteria so you have time to think about it. Others have gone on the treatment because they are very sick and/or have significant damage to their lungs or just want to knock it out early.

I had absolutely no symptoms except for coughing up blood one night, but that was because I had gotten pneumonia with the mac. I do not believe it's a good idea to put off treatment. I certainly wouldn't want to take the chance that it is going to get worse. I took a 2 drug regiment instead of all 3. I took azithromycin, and ethambutol. I had no issues at all with getting sick or having any other issues because of the antibiotics. I started taking antibiotic 6 months ago, then taking the nebulizer airikayce about 3 months ago and my Mac is completely resolved now. I had a very large cavity which has collapsed or closed. So the antibiotics definitely worked.
I don't think it's a good idea to put off treatment. I think that most people have to do it sooner or later and why let the infection get worse and destroy your lungs even more instead of taking the antibiotics and doing what you can to get rid of it?!
Some people say that the antibiotic regiment is really hard on the body, and it might be if you do all three. But there is studies now that are looking at people that only take two of the antibiotics. I would ask your doctor to start you off on 2 and see if there is an improvement in 3 months. Like I said, I started 6 months ago on the antibiotics and within 3 months there was such an improvement and after 6 completely gone. I'm going to keep taking the antibiotics and doing the nebulizer for a while because Mac is tricky and likes to hide!!
Good luck!

I had no symptoms when I started treatment- the MAC was first found on a CT scan for something else. I started treatment about 4 years later because the lung damage had progressed and there were a lot of bugs in my sputum. But still no weight loss, cough, fatigue etc. from the MAC
I was successfully treated but it took about 3 years with some bumps along the way. It’s a big decision but no rush to start treatment if you are feeling well. Also some people do not have progression of the illness and then don’t need treatment

Thanks so much for taking the time to share your experience with me - I very much appreciate that. I'm glad your MAC has not shown up in the last couple of cultures and, as your dr said, has been tapped down. That's great. Thanks again!

Thanks very much for telling me about what you have gone through. I had heard that the doctors sometimes do just two anti-biotics for some people. I have no symptoms, so I'm not sure what my dr. will say the next time I see him to get the broncoscopy results. I'm glad you have been helped! Thanks again.

Thanks very much for writing - I appreciate it! Mine was spotted on a Cat scan and I also had a broncoscopy. I have no symptoms - I wonder how long it's been around in my lungs. I'll see what the dr. says when I see him next time to discuss everything. Thanks again!

Interesting that you have a similar story to mine. Just make sure to have regular monitoring if you delay treatment for now.

Thanks for writing. Did you undergo treatment yet? Yes, that regular monitoring is really critical for sure. Thanks again -

Yes
Three years of treatment finished 6 months ago. Fingers crossed!

Wow - congratulations!