How important is it to treat flare-ups and how do you know when?

Ask your doctor to prescribe a sputum culture for bacteria and for fungus.
You already know you have MAC, but sounds like you may have a coinfection and if so, they can do a sensitivity test to see what antibiotics are correct for it.

Also, do you have allergies? My friends with pollen allergies are all coughing and mucusy right now as our pollen count is really high.

Definitely ask for a sputum culture

Of course! I was going to say, why didn't I think of that? But even more, I wonder why my doctor didn't suggest it? When I said the cough was back he went straight to the antibiotic instead of looking for what caused it. I feel so much better having a plan for "next time."
Thank you!
Anna

Check out the National Jewish Hospital in Denver. See if you can get an appointment, they are the best!

Hi @annagh,
Thank you for your posting. You mentioned Dr. Winthrop, I looked him up. He seems very good. I am interested to know who your pulmonologist is. How do you like him/her? I think having a good pulmonologist is crucial. I was diagnosed with bronchiectasis last fall, I have not tested for MAC yet. OHSU is my health provider. I learned a lot more from this support group than from my pulmonologist, thanks to the many kind, caring and generous people in this group. Many thanks in advance!
Ling

When I leave a sputum culture they test for all of these each time. The acid fast culture is for the NTM/MAC and takes 30 days. Curious if anyone gets tested for anything else not on the list?
GRAM STAIN
LEGIONELLA CULTURE
FUNGAL CULTURE
ACID FAST SMEAR
ACID FAST CULTURE

Hello, Ling. My story with pulmonologists is kind of a long one. After my primary care dr diagnosed bronchiectasis in early 2016, I saw Dr. Tashtoush Basheer, and he was great! He did bring up the possibility of NTM, but after a follow-up CT scan showed a big decrease in inflammation, and I was not having any symptoms other than a cough, he said even if I had NTM he would not treat me at that point. But he moved to Florida and the person I was assigned to next denied I even had bronchiectasis. I requested a change and was given my current pulmonologist in 2019. He confirmed bronchiectasis, said "you might try nebulizing with 7% saline," which he prescribed, and also mentioned the huff cough. Instead of scheduling my next follow-up he said, call me if you need me." Without direction, I didn't find nebulizing terribly effective, and my cough would get a bit better and bit worse, but I was never sick-sick, so I didn't call until it was bad enough in 2022, that I did call, took 5 months to get an appointment. At that point, with the violent coughing, sometimes low-grade fever, and some green in my sputum, he ordered testing, CT scan (fist in 5 1/2 years, and did the bronchoscopy. My scan had not changed much, but the bronchoscopy turned up H-influenza and MAC. By the time the MAC culture came back I had been treated for H-influenza and was feeling SO MUCH better! Still the dr just said I needed to start on the Big Three immediately. I took him at his word, and was looking for support and answers to questions about life-style changes, when I found all this information from this group, NTMir and others, and learned that, at my level of disease, there are other options to the Big Three. When I told him I wanted to wait, he said, I'd have to have that treatment sooner or later. I told him I had seen a video in which Dr. Winthrop (whom I knew my dr respected as an authority) said this was an option, he gave me the referral. So, how do I like my pulmonologist? I am very grateful that he discovered the problem and know he was simply following recommended protocol, and he was nice enough to listen and to go though my CT scans image by image showing me the small changes, and happy to give me the referral, but like so many others in this group, find it frustrating that he seems to be aware, of only one track. I really like it that Dr. Basheer, laid out options, explained things instead of just giving me directions, and scheduled regular follow-ups. I mention his name in case anyone in Florida might come across him.
I have heard great things about Dr. Winthrop and OHSU, have already had a lovely email exchange from a woman who is seeing if it might be possible for me to see a respiratory therapist while I'm there. I am already feeling so much less like I'm stumbling in the dark.
More than you wanted to know, but like you said, I've learned so much from this group, and I think knowing one another's journey's helps when it's time to question and advocate for our care. All best to you.

Thank you so much @annagh for your detailed explanation. I am sorry to hear that you had to wait for 5 months to see the pulmonologist. How frustrating that was. We all had a rough time at the beginning. I had 2 lung infections within 6 months because I didn't know I had bronchiectasis, and I didn't do the airway cleaning. Afterwards, my pulmonologist told me 2 things, exercise and airway cleaning. I am glad that he told me this. But I learned to use Aerobika in this group and so much more. I feel so fortunate to be in this group. I feel like we are a family because the conditions link us together. I think you are right that doctors automatically follow their protocols, that is very true. I believe nobody knows better than us about our own bodies. Learning as much as we can about the disease and applying the knowledge and our own judgement to the condition is the way to go. I am sure you will be very happy with Dr. Winthrop. Based on his profile, he is excellent.
Best of luck!
Ling

Hi everyone, I'm new here, just found out my results today: Mycobacterium gordonae & fungus! My infectious disease Dr appointment at UC Davis @Sacramento won't be until June 12. What should I ask about when I do get there? What's the "big 3" I hear everyone talking about? What can or should I be doing before I do get there?
Help!

The big three refers to the combination of three antibiotics given to treat MAC. These are usually azithromycin, ethambutol, and rifampin. The antibiotics are usually taken for a minimum of 12 months to a couple of years.
If you can, go ahead and start airway clearance techniques. This usually consists of nebulizing 7% saline, using and Aerobika, and huff coughing. See if your current doctor/pulmonologist will prescribe for you. Watch webinars on NTM on YouTube or the NTMir and National Jewish Health websites.