Treatment for MAC

@mb53 - I see you have been here for a while, but this is your first post, so you may have read a lot of discussions here.
What is prompting the start of treatment now? Have you had recent sputum cultures and/or a new CT that shows disease progression? Other symptoms like weight loss or fatigue? Or a new doc who is encouraging antibiotics?

These are good questions to ask if you really feel like your current situation is stable. Maybe you can ask for evidence, like new studies, that show starting treatment in the absence of increased severity of infection, worsening symptoms, or development of more lung nodules or cavities has better outcomes than watch and wait.

I was one of those people for whom treatment was not optional because a I was severely affected, and I am glad I did it. But if I had few or no symptoms, I would want empirical evidence that it is necessary, because the regimen is not fun for most of us.
Sue

Thank you Sue
My CT’s have gotten a bit worse over the years. I have Bronchiectasis and MAC. I recently caught something from my granddaughter during the holidays and wound up having to take Levaquin for 10 days. I’m back walking and hiking 3-4 miles/day. Is there a concern in waiting to start treatment? Thank you

It's a question that's been bouncing around in my head too. If you don't have symptoms and little change on your CT scans, does this mean the MAC is still marching along in your lungs doing irreversible damage that will suddenly cause you a crisis, and then you say "oh, I should have taken the treatment sooner"?

Exactly. I am a perfect example of one who waited too long and have paying a steep price.

If you are feeling fine, maybe you should consider getting a second opinion to see if both providers concur that you need to begin the Big 3. I have MAC and BE and feel fine except for some coughing. I am apprehensive due to side effects. My dr and I have chosen the wait and see approach. Should symptoms get worse or present a danger, then Big 3 will be discussed. It has been 3+ years since I was diagnosed with MAC and, with the help of daily 7% saline nebbing, compression vesting and airway clearance, I am doing fine.

If you are feeling fine, maybe you should consider getting a second opinion to see if both providers concur that you need to begin the Big 3. I have MAC and BE and feel fine except for some coughing. I am apprehensive due to side effects. My dr and I have chosen the wait and see approach. Should symptoms get worse or present a danger, then Big 3 will be discussed. It has been 3+ years since I was diagnosed with MAC and, with the help of daily 7% saline nebbing, compression vesting and airway clearance, I am doing fine.

Did they tell you they thought you needed the treatment but you said you wanted to do the "wait and watch" approach?

No, I avoided the Dr for years even with severe symptoms for a variety of reasons. My wife finally forced me to the PCP where he was confused by the large cavity in my chest xray and sent me straight to the ER. My spo2 was 78%, they diagnosed pneumonia and started treatment that day and recovery began and continues to this day 5 years later. Due to scar tissue, my cavity is permanent (from MAC) as infections flare and wane.
I had a resection but it failed. I have one Dr that wants to remove the lobe. I did not learn about ACT's until 2 years ago.