← Return to How is MAC not contagious to another person with lung disease?

Discussion
Comment receiving replies
Profile picture for Sue, Volunteer Mentor @sueinmn

@ddoran9233 This is a highly individual decision, and needs to be done in conjunction with your care team, considering all of your medical issues, and the type of NTM you have (while most grow slowly, some like M Abscessus can progress rapidly.) Also, if you have other infections like Pseudomonas, it is preferable to treat them first as they usually are easier to knock down.

In my case, I would take the antibiotics (Big3) again - I had Pseudomonas that had weakened me and took 4 courses of antibiotics to clear, during that time my MAC got worse. My condition was severe, I was coughing non-stop, losing weight, running a fever, had crushing fatigue and could not even walk a block.

IF on the other hand, I was not symptomatic or had few symptoms, and did not have any cavities or large nodules, and knowing what we have all learned these past 8+ years, I would ask to do "active watching and waiting." That would be twice daily airway clearance with 7% saline nebs, regular sputum cultures, and at least twice yearly CT scans. If after 6 months or a year of the conservative treatment, I was getting worse, I would try the antibiotics.

Age and overall physical condition also play a part - if I was in generally poor health and thought I could not tolerate the 3 antibiotic regimen, I would ask to do what we did for my Mom when she was in that situation. We just treated exacerbations as they occurred. When she finally died after several years of declining health, MAC was not her cause of death - it was one of her several other serious health problems.

Are you in the situation of considering antibiotic therapy? Are you working with a care team you trust?

Jump to this post


Replies to "@ddoran9233 This is a highly individual decision, and needs to be done in conjunction with your..."

@sueinmn Thank you for your reply and sharing your experience. What you went through sounds difficult and exhausting and I wish you did not have to go through that.
I am considering antibiotics 3x per week prescribed by the ID dr and will review with the new pulmonologist but it is concerning and no, at this time, I do not fully trust my care team. Specifically because I do not have all the disciplines. Allergies and asthma are at the root of my condition and thankfully, my allergist is phenomenal. I do need a way to reduce the inflammation and prevent re-occurring infections and airway clearance may not be enough. I do like the thought of the monitoring approach but I need to discuss this with the new pulmonologist as I cannot assess the risk on my own. My diagnosis is very new (Nov 2025) so it will take some time to find the right team and develop a care plan. This site, all the feedback, has been tremendously helpful especially learning about airway clearance techniques and I have already seen an improvement. I appreciate you insights and experience.