MAC treatment do or not do

@lilianna I don’t experience the dry coughs as you describe you have. Some shortness of breath but my BQ is always 93-98. Which was mostly the decision not to start the treatment. Fully understand why you did! I feel certain if I experience the dry coughs & chest pains you are experiencing I would have made a different choice. So happy to hear you survived the treatment! Are you free of MAC or still in treatment? 🙏💕

@eespoor I wish you well. ❤️

I was diagnosed with MAC in 2019 and have elected to not do the antibiotics due to hearing of the side effects and the fact that there is no guarantee the meds will eradicate the bacteria. My pulmonologist and I are taking the "wait and see" approach. I nebulize with 7% hypertonic saline along with using the Aerobika and I also do the compression vest daily. I have been able to keep things under control with no worsening of symptoms. I am 76, I exercise 3-4 times per week, sing in a choir, eat a mediterranean diet, meditate daily and keep an overall positive attitude. I also have bronchiectasis. The most important thing is that I do not allow these conditions to define who I am. I wish you the very best in navigating your condition. Your apprehensions are very understandable.

@equanimous Thank you for encouraging comments. I am doing ok without the big3 for now. I feel in my heart I made the right choice not to take the treatment! Best of life for you!

@eespoor
I was persuaded to take the vig three. My care team misdiagnosed numbness in my feet as not antibiotics and I stayed on the antibiotics for another 25 days developing both ethambutol induced optic and peripheral neuropathy. Along the way abscesses became dominant so ethambutol wasn’t even working. I was fit and otherwise healthy before antibiotics so it didn’t work out well for me. I do airway clearance and am stable so far. My major problems are the vision loss and numbness in my feet and legs.

@sma2 So sorry you have had such an experience. I haven’t heard of one big 3 success story! I can’t imagine the health conditions you are now living with. Your experience with the big3 reassures me that I made the right choice to wait & see. Sending you a big virtual hug. Hopefully you will continue to stay stable. 🙏🌸

I am 85 and was diagnosed with BE 19 years ago and recently diagnosed with MAC , i was told I had MAC for a long time . It seems that my last doctor failed me as in the 10 years he never tested me for this infection. My new doctor tested me , and is sending me to a Infectious disease clinic, im not sure that at my age the treament for this is a good option since , I do not do well on antibiotics, i suffer with many gut issues . 18 month of this treatment will seriously effect my quality of life, I been taken D3 and short term antibiotics for years it has giving me some relief, and wonder if this is a better option for me, just how much time do I have left . I belive at 85 you have to wigh your options , 18 month is a lot out of your life if the quality of your day are poor and debilitating. I presently use a nebulizer 4×a day and Aerobike 3x a day and resently acquired the vibrating vest , but my best result is the nebulizer and then lying flat to clean out my lungs . I would love to hear your thoughts.

@petry I think you’ve made the right decision. We can only live so long anyway. I must also say that 2 doctors told me that if you don’t do the treatment they can keep you alive until you die of something else haha. I kinda thought that was a better option. So that’s what I’m heading for should MAC come back, but I don’t think I’m BTM free anyway I think he agreed to stop meds because of the many side effects I also had from ethambutol, rifampicin and clofazimine!

@cd33 This is the point of view we went with when my Mom, at 80+ and with a laundry list of health issues, had MAC. Her doctors treated severe flares with Azithromycin for 10 days or so to calm them, and she nebbed albuterol daily (before we knew about saline). She lived another 3-4 years, and eventually died of a heart condition.
Ironically, since then my daughter and I have both been diagnosed with Bronchiectasis. Eight years ago, I had very severe MAC and Pseudomonas and endured almost 2 years of antibiotics. For a lot of reasons, my ID doc and I decided to stop treating before I tested completely negative for MAC, and go with saline nebs and airway clearance. I have since tested MAC-free for 6 years. At the time we stopped the meds, he told me "This is a chronic condition that you will live with, but you will likely die from something else."