MAC treatment do or not do

@eespoor Welcome to Mayo Connect, as fellow travelers on your health journey, and not medical professionals, we can tell you what works for us, and what we might do, but cannot give you a definitive answer.

I can definitely understand your concern about the antibiotics, given your age and heart issues. There are more conservative choices, but one must first find a doctor well-versed in the treatment of MAC. As a rare disease, most pulmonologists rarely see it in their practice. May I suggest that you consider finding a specialist in MAC and Bronchiectasis for a second consultation? Here is alist of the Centers of Excellence:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
My Mom's condition was treated with daily nebulizer treatments and antibiotics as needed for flares for several years, and she ultimately passed away of other unrelated causes.

Has your doctor started you on a regimen of airway clearance?

I was in a similar quandary but at 77 decided against antibiotic treatment for bronchiectasis & Mac .To me the possible side effects of the 3 drugs ,plus no guarantee of cure after 18 mths and possible reinfection made my decision easy. I use an Aerobika device & saline nebuliser twice a day and keep as active as I can ,eat a healthy diet & stay away from indoor pools , spas , hot tubs & wear an N95 mask if gardening or near soil. I get the shower head filter changed regularly too. 1 yr on & my CT is unchanged & I am able to enjoy life still. Hope my experience helps and my very best wishes to you.

Diagnosed at age 70 with MAC and Bronchiectasis, my pulmonologist took the conservative approach. She did not put me on the 3 antibiotics regimen due to its side effects and recurrence even after taking the antibiotics. Instead, I was given a nebulizer and for the past 5 years, have been nebulizing albuterol/ipratroprium solution and two years ago a steroid Budesonide solution to fight infections was added to my nebulizer routine. I also use a Respirtech vest to shake my lungs while I nebulize. Oh, and recently I was prescribed 3 % sodium chloride to add to the neb mixture. I am now 75 and my CT scans show no progression of MAC or Bronchiectasis. I have never been hospitalized for my condition , handled COVID infection in 2021 without complications, and continue to live my life normally without changing anything. Had the conservative approach not worked, my pulmonologist would have put me on the antibiotics. So far all is going well. I pray the same for you.

Thank you so much for your encouragement. I have discussed with my daughter and we have decided to talk to my pulmonary doctor and try a less invasive approach.

@irismargaret THANK YOU for your honest answer. It has been very helpful. I feel at this point I will talk to my pulmonary doctor and look for an alternative treatment going forward. Blessings to you

@irismargaret
I so appreciate your input. I feel I am going to talk to my pulmonary doctor about a different path. ❤️

@chisintexas
Thank you so much for your encouragement. I have discussed with my daughter and we have decided to talk to my pulmonary doctor and try a less invasive approach.
❤️🙏🏻

I was diagnosed at 70 with MAC and bronchiectasis. My doctor put me on the three drug regimen, azithromycin, rifampin and ethambutol 3 days a week (every other day with Sunday off). I did that for 16 months, but I got neuropathy in my feet from the ethambutol and had hearing loss from the azithromycin. He thought I could quit because I had tested negative after 3 months on the drugs and I stayed on them for 13 more months. However, the MAC came back after 3 months off the drugs. He put me on another three drug regimen but on an every day basis and I couldn't tolerate it, so I stopped. Now I'm just doing watch and wait and I nebulize 7% saline and have an Afflo vest. I do both twice a day. I have SafeWater filters on my sink faucet and my shower and I I have a Life Source pitcher as well. I don't garden any longer and I don't swim in pools or jacuzzis. I feel absolutely fine and have not had any problems since. My last CT in February showed no changes from the previous which was not bad. Pulmonary function test actually showed improvement. So I will continue doing this unless things change. Good luck and I wish you the best.

@linda1334

@linda1334
So sorry to hear you have had such a challenging treatment. MAC is a terrible diagnoses and hard to treat. I so appreciate your response. You have helped me a lot in figuring out my plan of treatment. Praying your choice of treatment will prove to be successful.