MAC treatment do or not do

I am on my third day of taking the antibiotics and was amazed that I haven’t been sick. It is a surprise to me because I have a very weak stomach. I am 75 and all is going ok except for the fatigue. I take my meds Monday, Wednesday, and Friday.

And keep in mind, if you have MAC, it's highly likely you have Bronchiectasis which causes inflammation and fatigue. I have both BE fatigue, and the brinsupri has helped that but I still have days where I experience the afternoon fatigue. Right around teatime. I do take chinese herbs for that and found that the days I get the afternoon fatigue is usually when I didn't take my usual herbal dose. NJH Doctors like to treat NTMs if there is radiographic progression, along with symptoms and high colony counts. I don't have symptoms other than the fatigue (which is not NTM related), my CTs are stable, and my counts are very low. Beware, most local labs do not do counts.

I did the big 3 every single day for 3 years. They did nothing but make me miserable. After two of those miserable years Arikayce was added to the mix. So that made 4 antibiotics every day. I had no voice for the entire 3rd year. couldn't talk. Eventually the mac went away. I'm sure it was the Arikayce that did it but I had to end it all after 3 years even though I needed to keep taking the meds for another few months after it went away. I couldn't continue because I was on the verge of going deaf along with having no voice to talk with. I would never in a million years do all that again. It was a nightmare. The nightmare ended 7 years ago and I haven't been back to check for reoccurrence. I don't want to know. I do what I can to stay healthy. I'm 72. I meditate to relax my airways when I feel they are tight and not draining. I work outside as much as I can. I have COPD, pretty bad asthma, bronchiectasis and who knows. . . maybe I have Mac lung disease too. but I'm not going to find out. Because I want to live as natural as I can. That daily treatment was unbearable for 3 years of my life.

@hbarbh That had to be a terrible 3 years! Thanks to some intense research and the comments on this site I have decided not to do the 3 antibiotics therapy. At 86 I would rather have a shorter quality life than 3 years+ being miserable and sick. Prayers for you. 🙏

@eespoor I agree with your decision. You said you have congestive heart failure also which may play a role in your decision but on the flip side not all have to do 3 years on the drugs. Most do 18 months. The rule is continue for 12 months once you get a negative result. I did 14 months. I had a few reactions to the drugs. Towards the end I wasn’t happy with the stomach cramps and time spent on the toilet and vomiting. I probably won’t do the drugs again if the MAC comes back. I’m 67 but quality of life is more important to me too. Best wishes to you on the rest of your journey in life.

@eespoor but not everyone gets side effects, we are all different, some breeze through treatment.

@hbarbh …I know how you feel ,I couldn’t even do 2 weeks of 4 antibiotic and one IV with a pic line .
I had a Cavitary Mass of 3 cm ….no symptoms and had surgery to have it removed ….im fine …
I cannot live take antibiotics for two or three years .To me that’s not a quality of life ,and if it returns….i will just live with it ,until I don’t !
I totally agree with you !!!!

@eespoor I couldn’t agree more! Quality v quantity every time especially for us oldies.Good luck to you and my very beat wishes😘

@eespoor Having reached 86 is something very special.
I do understand why you used the word "Confused."
I am 83 and 7 months and decided in 2024 not to take the antibiotics thanks to those who guided me via this Mayo Connect.
I have felt fine from the beginning of being diagnosed with BE, Bronchiectasis, and the Intercellular bacteria in my lungs. My problem is that I have to clear phlegm nearly constantly. The bacteria was a low load of bacteria when first found during my visit to National Jewish Hospital/Clinic in Denver. The NJH pulmonologist suggested I do watchful waiting of which I still am doing (my choice) due to the bacteria not having grown much and nearly not showing in the sputum testing done at NJH and Tyler labs recently.
However, I did have at least four non NJH pulmonologists wanting me to start the antibiotics. I am glad I did not start them.
I recently had a visit with another pulmonologist who looked at my C Scan and all information available to him about my BE/MAC and he said..."You don't have to be on the antibiotics."

To me it is living and learning to do all one needs to do to keep the immune system up, the body strong and the routines to clear the mucus from our lungs.
Glad you took time to read all and find the information you needed.
Barbara

@blm1007blm1007 :
I am 81 years and was diagnosed with MAC/BE/Apiotrichum Mycotoxinivorans fungus 3 years ago. I also have repeated hemoptysis episodes. I began taking the Big 3 and within 2 weeks I started smelling sewage/tasting metal. I replaced everything in my 12-year-old home that might be causing a sewage smell, like the disposal, ejection pump, etc., and then about $4000 later I discovered it was the Azrithromycin that caused this issue when I had a follow up visit with my ID doctor. These are very rare side effects of the med. Thus, I went off the drugs and within a couple of weeks, I was/am having a quality of life, though not ideal by any means, but a life which I'm not willing to give up by making it worse.

I have no idea how long I have to live, none of us does, but my family has longevity -- mother, 101; father, 96, and I have every intention of making a similar milestone(s). I keep busy and don't focus on my health issues. I have doctors who are supportive of my decision and we are "watching and waiting" -- for what, I'm not sure, but I am realistic too, knowing my grand intentions may not be met and I am willing to accept that too! Wishing you well!