Hello @killelea ! Welcome to this very helpful group. I too was diagnosed with MAC as well as bronchioectasis 2 years ago. For 14 months I followed the prescribed antibiotic regimen.Three potent doses of antibiotics taken 3 times a week. I am happy to report that my last bronchoscopy and cultures all came back negative. Aside from the sequelae, which is bronchioectasis, I am able to lead a normal and active life.
Follow your prescribed treatment very carefully and tweak how you take the antibiotics to minimize your side effects. I found that by dividing the doses throughout the day and not taking the meds prior to going to bed, I was able to avoid the reflux and stomach upset, for example. But each person is different and you will find what works for you. Speak to your physician about probiotics. I was placed on VSL#3 and it was wonderful for maintaining my intestinal flora alive and well during the long haul.
Best of luck to you. There is light at the end of the tunnel!
Liliane DDS

You can fight it by being proactive and advocating for yourself. You also need to eat a well balanced and nutritional diet. You need to exercise even if it is difficult for you. Start slowly. You know your body. Listen to it and it’s infinite wisdom! Make sure you have a good infectious disease doctor. Go back and reread all the posts on this site, especially those from our former mentor Katherine who has sinced passed and those from our new mentor @windwalker. You will have to make your own informed decision about your treatment. Good luck.

Only problem can be serious allergy to most potent medicines.

I read everything and so appreciate all the advice. Will read and listen. Very hard to know answers to so many questions. I will be talking to Mayo Clinic on Wednesday.

A very supportive group. Ask anything you don’t understand. They are so willing to answer questions and give out great helpfulness. I am a newer member than you are - what a group. I feel they are almost physically touching me with their help.

Thank you Liliane. I'm just taking in all the information. I really like the reminder to take probiotics if I'm on antibiotics.Your message is very hopeful.

Hello! I was diagnosed with Bronchiectesis and MAC along with some related esophagus issues almost 4 years ago- and wow, has it been a tough journey. What I can tell you is that the more disciplined and intentional you get about your health being a top priority and wrap your head around the time and effort it takes - the better off you’ll be Exersizing, good nutrition, proper sleep, and airway clearance are no longer optional. A good infectious disease Doctor is critical. I have found the probiotics to be helpful as well.
I’m wondering what people think about wearing a mask when out in public. They aren’t too fun but after going through two rounds of flu, I am desiring to add some extra precautionary measures! On the positive side - I FINALLY had an improvement on my catscan!! Still hoping to gain more energy and fewer periods of exacerbations. Personally, I find that prayer and inspirational upbeat music REALLY help get me through the daily regimen. Blessings to you - be encouraged - you are not alone, Lainey

They make me wear a mask at the hospital for my protection. We won’t go out to eat till the flu season is over. I am a very cheap date.:) I have worn a mask, but infrequently. I have been encouraged to wear one when out and about or when my grand babies visit.

You mentioned esophagus issues, it wasn't Achalasia was it?

Thanks for responding I’ve heard mixed reviews on how helpful mask actually are but was advised to wear in any close proximity to general public or anyone not well. I was told that I could be around my granddaughter ( and others, without the mask) as long as I don’t have a secondary infection going on. This condition can make you feel isolated at times The mask definitely sets me apart ( and is hot, fogs my glasses, makes it difficult to talk), etc, but if it is a legitimate part of the arsenal to get well - I’ll keep doing it. Found some colorful ones on line to try to make it fun. Hate having an image of “sickly” or unapproachable