Diagnosed with MAC but not being treated

@deborahwolf I have the same experience as you. I went to Mayo Clinic, Jacksonville, FL for second opinion. Was told not to take medicine....I would be much sicker from them. He said I had a good pulmonary doctor since he did not want me to take the medications. I hope this helps. You can always get a second opinion. Good Wishes

@deborahwolf I went to Mayo for a second opinion and got the same response. I think for now we can consider ourselves very fortunate. The first opinion from a local pulmonologist was basically the same but with no information or suggestions for improving my lung condition (nebulizing saline and lung clearance with an acapella device). I think it is always a good idea to get a second opinion, if for just the peace of mind. I was also told to Follow up yearly with an exray and sputum and to keep antibiotics on hand in case of a flare up (but not to use any of the big 3) Best wishes,
Kate

@londonritt Thank you for sharing your experience. I feel better knowing others who have been given the same recommendations.

@alleycatkate I do consider myself fortunate to not be on medication. I did see an infectious disease doctor who recommended treatment but didn’t push when I expressed my concern about the medications and preference to take a watch and wait approach. Hopefully it is the right call.
I did not receive any information or recommendations for lung clearance.

@alleycatkate I was treated too soon by a local doctor using 1 sputum test. Unfortunately, I did not get a second opinion and started on the meds. I was so ghastly nauseated from the meds, lost 40 pounds in 3 months. Changed doctors.... no meds, watch for signs.
3 years later still fine, moved to another state. New doctor believes in the same approach.
YAY 2 opinions!

I've had the same experience. I am going in later in the month for a CT scan and than a 6 month follow up to see if anything has changed in my lungs. He did have me start doing the Aerobica.

@deborahwolf I’ve had the same experience. I was diagnosed 2016. No medication for me either. My pulmonary Dr was a little concerned this past October because I had developed a 1.5 cm nodule since last year and mentioned antibiotics as a consideration. but we decided to wait until another CT scan 3 months later. That showed the nodule had reduced in size. So since I still have same mild symptoms you mentioned, still no meds. I do lung clearance exercises with the Aerobika twice a day, (for the Bronchiectasis), and I nebulize .9 % and 3% saline alternately, for the MAI/MAC.
Gina

@ginak That is interesting, I have had nodules that come and go, I have more now I hope they go on next scan.

@migizii I am also treated at Mayo and received the same recommendations following sputum test results except he wants me to do respiratory hygiene program twice daily instead of one time a day with 6-9 month follow up.

@deborahwolf, @migizil, I too went to Mayo, and my dr doesn't like automatically putting people on the Big 3 antibiotics when first diagnosed. He said that in many cases, the infection just goes away by itself. I had a dr try to put me on the big 3 back in 2005, I declined for fear of damaging my liver with them. My lung function has steadily declined and more damage has been done over the years since, I cannot say for sure it was mac that did it or not. I do suspect pseudomonas though. I was not under good care for all of those years; & no dr ever did a sputem test since 2005. I also have COPD, and mild pulmonary hypertension, so that may be why my lungs deteriorated over the years. Deep down though, I think I have had pseudomonas for years and nobody caught that.