Non treatment of MAC

I'd like to know more about all this also. I know each case is different and highly variable. There is a good video about MAC Treatment also that is helpful but I still have questions also. I think I added it below this comment- my computer skills are kind of clumsy.

@deemaniduenas Welcome to Mayo Connect. Yes, the antibiotic regimen is tough, and can have side effects like you experienced.

I see that @cwal has already provided you with a very helpful link about how National Jewish Health doctors recommend to other docs how to make this decision.
I am puzzled when you say, "It was mandatory that all 3 meds had to to taken together (all or none) for at least one year. " There are many people here who have to stop one of the meds, but can continue with the others. Was this your treating doctor's requirement?

Two more questions that will help us know how to answer you - are you seeing a pulmonologist or infectious disease doctor who has experience treating MAC? Have they started you doing airway clearance daily to help remove the mucus and bacteria from your lungs?
Sue

Non treatment of MAC---I am 75 and was diagnosed with MAC three years ago.
I said at the time that the treatment looked worse than the disease and that I would not go
onto any multi antibiotic regimen.
Up until July 2023 I was doing pretty good, walking two to three miles a day but I got bacterial pneumonia
from which I am now recovering.
I am back on my walking on a treadmill and am working my way back slow but sure.
Bill Allen
Longboat Key, Florida

Has anyone ever gone to salt mines? I’ve read this therapy may be a helpful addition to conventional therapies.

Hi deemaniduenas. Your doctor sounds like my first pulmonary doctor--I'm on the third one in five years. He also said I had to take all three meds first thing in the morning on an empty stomach. You can imagine how that went. BTW no airway clearance explained or offered. I had to go off the meds after six weeks. I was guided to my next pulmonary doc (via this group) who was a 3 1/2 hr drive from our home. He was great!!! He knew what MAC was and said I probably should not even been put on medication. I left his office with a compressor and an aerobika. I was so encouraged and uplifted--I had hope. I was with this doc for 3 1/2 years. I asked if he knew of anyone closer to me that he would trust my care to. He did refer me and now my drive is only about an hour and 15 mins. Even after all this time, I'm still learning and enjoy being able to share experiences with this group. Blessings as you go forward. Faye

Thank you for your response…
I was referred to the infectious diseases Dr from my pulmonary dr. Infectious disease doctor prescribed meds to be taken on Monday Wednesday & Friday Azithromycin 1 in morning: myambutol 3 in the afternoon; and rifampin 2 in the evenings. I had to take them exactly on the same time on the same weekdays . My id doctor has mentioned that he communicates with a team elsewhere when trying to treat my MAC. When I stopped taking the medication he referred me back to my pulmonary doctor who started me on the nebulizer to help generate a cough to help clear my airways. Mind you I like some of the other patients did not have experiences of heavy chronic coughing….nor was I able to provide septum samples for them to test on a regular basis. It was only when I started using the nebulizer that started coughing up gooks.
Should I get a 2nd opinion ?

Btw … yes my infectious disease doctor did say that I have to take all 3 antibiotics for it to work and that I can’t take any if I dropped of the myambutol that was causing my vision loss.

There are treatment choices other than the 3 antibiotics. It sounds like your doc is trying but not wholy familiar. If it's possible you may wish to look for a noted center near you. National Jewish health in Denver, Mayo Clinic, U of Texas at Tyler, and a few others depending on where you are.
Sue

I'm curious if you know what other treatments there other than the Big 3? The film from NJH emphasized taking all 3 antibiotics for effectiveness, unless I missed something?

I had a 10 cm cavity grow within 30 days while waiting to start treatment. Once I started the treatment, it did take a while to see any improvement in it but my symptoms improved drastically and the antibiotics kept things stable. When I started the inhaled Arikayce several months later on top of the antibiotics, the cavity began to shrink. You'll hear some say "the treatment is worse than the disease" which I disagree with.