NOT BEING TREATED FOR MAC

@cheb Welcome to our great support group here on Mayo Connect, where we share this unwelcome journey with MAC & Bronchiectasis. If you do some reading of our many discussions, you will see that "watch and wait" is a very common treatment plan for MAC.
Here is a recent, very informative video from National Jewish Health about when to treat and when to watch:

IMHO, the fever symptom would be of most concern, combined with your other flu-like symptoms. I would worry that a low-grade/indolent infection is doing further damage (your scenario happened to me 23 ago, and it was at least 7 months before the docs treated me, which was infuriating). As Sue suggested, do twice daily airway clearance in addition to the nebulizing and see if that helps. It's imperative to learn the ACTs that help to get the deepest, most stubborn areas of your lungs unplugged.
Taking the long-term antibiotic treatment is a huge decision. Perhaps your age and general health are in your favor, so the docs want to be conservative, compared to someone who's quality of life is tanking. Then again, maybe the ID doc didn't understand how poorly you are feeling. Have you had any antibiotic treatment since this exacerbation started last fall? Maybe a 14 day treatment would pull you out of this spiral. I know that fever is like a beast lurking in the shadows. I hated it.

@sueinmn Thank you for the video link. It was very informative. From what I saw, with my symptoms and immune system issues, I should be treated.

I do a nebulizer twice a day, which helps clear the mucus. I have not been given any airway clearance processes to follow. Although I read about these online and asked the pulmonary if I should be doing them and she said I didn't need to. ??? I was given the diagnosis of MAC but not given any additional information about it. I was told I should probably wear a medical mask while doing gardening, but nothing else. Everything I have learned has been online researching.

@ursala7 The fevers have thankfully been minimal, but they do happen. When I asked my pulmonologist about the airway clearance I read about online, she said she didn't think I needed to do that. 🙁 I am worried about the antibiotic treatment, as I have had ulcerative colitis (UC) for almost 40 years and have a serious history of cdiff from taking antibiotics in the past. Maybe it's good I'm not being treated for MAC right now, but I worry about it progressing. Although there are infectious disease doctors in my area, none of them specialize in MAC treatment. With my other issues, I feel I need to find a MAC specialist. I am looking for a new infectious disease doctor. The one I had a visit with had such a heavy accent I couldn't understand some of what he was saying and he also was not very amenable to me asking the ton of questions that I have. I received this diagnosis recently, but the only thing I was told was to wear a mask while gardening. I am getting all my knowledge about this through online researching.

If you're not producing a lot of mucus maybe you don't need airway clearance. I have widespread bronchiectasis, but it's worst in my lower lobes. If I don't do airway clearance I will get an exacerbation, which leads to pneumonia. My latest sputum sample came back with MAC, so I'm scheduled to see an ID specialist in July. I'll have to decide about the big three also.

@cheb Maybe you can find a Bronchiectasis Care Center near you. Here is a helpful list:
https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center
Or you can seek an appointment at National Jewish Health, who can then coordinate with a local doc for continuing care between visits.
Would you mind telling us generally where you are located? Someone may know of a good doc near you.

Thanks! I live near Pittsburgh. It looks like the closest one to me is the Cleveland Clinic. I am already in the process of trying to get accepted for an appointment there. Crossing my fingers!

My two cents on airway clearance: it’s interesting to me the different approaches of our Drs, when I was diagnosed last October, I was assigned to a Pulmonologist at our nearby University Research Hospital, who has been treating BE for 40 years. He and his team are fantastic. He said airway clearance is the gold standard in his experience. If he had his way, he said it would be a part of every day wellness. Along with Brinsupri since December,and nebulizing 7% saline twice daily, he asked me to do airway clearance twice a day. I’ve had no exacerbations since my initial one last fall,,which he treated with 8 weeks alternating Augmentin and Doxy.The nice thing is you can do it when you travel without “equipment”. I am now addicted to it and never miss! Jeanne

@heidi0974
I've thought of nebulizing as the 1st part of airway clearance. Have you been a/c without the nebulizing?

@conniec Every person is different, I have stable bronchiectasis, no infection currently, mucus thin enough to expel without saline, and asthma for which I use an inhaler twice a day. Most days, I don't neb, get the mucus moving with exercise or vigorous house/yard work and do my clearance. If I am sick, congested, or having a bad allergy/ asthma day, I neb saline before airway clearance.
What do you nebulize before airway clearance?