New here, introducing myself.
Hello! Im an almost 81 y/o and have been through the ringer since January. My MAC was found (as a "tree budding infection) on a CT scan of my chest looking for possible cancer mets from breast cancer 3 yrs ago(all mammos, brain scans, and bloodwork presently negative). I had a mini stroke in January so that's what lead to brainscan. Oncologist want PWT scan but insurance denied, so she ordered a chest, abd, and pelvic CT and the chest CT showed 2 nodes and the infection. Had bronchoscopy on 5/8/25 and finally got the MAC diagnosis. Im dreading the treatment because I have had stomach issues all my adult life. Sorry for writing an epistle...just looking for some supportive friends and info! Forgive typos please!😁
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
@lulu1944 Welcome to our MAC and Bronchiectasis Support Group. Let me begin by saying that incidentally finding Bronchiectasis, "tree in bud", "nodules", "ground glass opacities" when doing a CT for another reason is not uncommon. Many people walk around with this for years without ever realizing it is present, and learn like you did or when it finally rears up as a real infection following another illness.
So, if you are asymptomatic or have slight symptoms of infection, it is possible to "watch and wait" - which is not really a passive activity - you will be asked to engage in twice daily airway clearance, eat well, get some exercise and stay away from anyone ill.
Since you have other health issues, it is important to have a frank talk with a pulmonologist experienced in treating MAC/NTM about whether this might be a possible approach for you.
Normally, I would write a longer welcome message with some references for you to check out, but I just finished one to another new member, so in the interest of time I will give you a link to it:
https://connect.mayoclinic.org/discussion/i-have-ntm-bronchiecstatis-is-ntm-always-present-in-my-lungs/?pg=1#comment-1332028
After you look at some of these resources, you might have more questions.
One thing I will point out, in the link I gave you, both the PDF file and the second video talk about the fact that antibiotics are NOT always the first choice of treatment.
Please don't worry if it takes some time to get to the "right" doctors - NTM is very slow-growing, and getting a treatment that works for you is more important than starting antibiotics immediately.
Thank you so much for the encouragement and link! Ive been busy all day or would have responded sooner! I was wondering how to find all the links on the site! Now I can do some teading the test of the weekend!
Hi Lulu, No worries - after I answered you, I was gone the rest of the day and evening. Then today my daughter and I took our younger grandson on a "just me" adventure. Usually he has to share with big brother, Dad and Grandpa - he got to take the lead in eating our way through our annual state Street Rod car show. Heaven for a 6 yo boy - 4 hours, 1000s of cars, free bounce houses, video arcade, pizza, garlic fries, lemonade, ice cream - and getting to sit in a vintage police car and blow the siren.
Here is a link that can keep you busy for a while:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
We tried to gather as many good resources as possible into one place, our members have found these and recommend them. Most posts contain a short description with the link.
Welcome, I was diagnosed Bronch and ntm in September. It has been alot of self-education. bronchiectasisandntminitiative.org has been super helpful side by side with Mayo Connect. I am so appreciative of all my health care team. It has been a bumpy teary road to get here. All questions are important.
Good luck,
Ann Papouchis
We love coming to the Back to the 50's car show.
Hi Lulu,
Welcome aboard! I was diagnosed with MAC just before the pandemic. I had a very bad chronic cough and chest congestion but, other than that I had no troublesome symptoms. My pulmonologist offered the 3 antibiotic treatment which I declined due to the potentially awful side effects. We decided to take the "wait and see" approach. I get annual CT scans, give sputum samples and have occasional bronchoscopies. It has been 5+ years and, so far, so good. I exercise, think positive and follow a Mediterranean diet. My daily routine is as follows: I nebulize with 7% hypertonic saline while simultaneously using a airway clearance device called Aerobika. Following this, I do 20 minutes using my HillRom compression vest. I do this faithfully every single day. Airway clearance is Very important and is not to be missed, no matter what. The saline was a game changer for me as it creates an unfriendly environment for the MAC bacteria to thrive, thus slowing its growth. I would consider asking my doctor about the things I've mentioned to see if they may be an option, depending upon your condition. Please know, everyone is different and this is what is working for me. Below is a link to airway clearance information. I have learned a great deal from the wonderful participants in this support group. Please know you are not alone! Best of luck to you.
https://bronchiectasis.com.au/resources/airway-clearance-videos
Thank you and thanks for the link. I will definitely talk to my specialist when I see her!
Making memories! I have 4 grandsons ages 31, 25, 23 and 19. I live with the oldest who is an RN...so I have my own personal RN! Even adult grandchildren are wonderful! Thanks for the links!
I have considered the Mediterranean diet and watched many videos on YouTube but I am diabetic and cannot eat rice, grains, bread etc because they blow my blood sugar way too high. I love all of them though. Even beans spike me more than I'm willing to go. I just 3 days ago was able to get a Cgm approved by insurance, am learning to use that and intend to test grains,breads, beans etc to see if I can eat them according to my Cgm. Another thing...where I live, I dont have access to fresh fish and seafood, though I love it...all except salmon...can't standcit, except in canned then fried, cornmeal covered patties. Im going to give that diet another whirl and see what my Cgm teaches me. My goal is to not go over 140 after meals. I have so many health issues right now and it's one thing at a time!
I have found beans are okay as part of the meal, as long as lots of other veggies are included. Bread has not been on our table for meals since my husband's diagnosis over 30 years ago. I use nuts and seeds in place of rice and pasta in Mediterranean salads or use a little as a treat. Also, red lentil pasta or cauliflower as a sub. Typical week fish twice, lean pork or chicken 2-3 times, meatless once or twice. We splurge on beef about every 2 weeks, pizza about once a month.