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Resources for The ABC's on Bronchiectasis and MAC (NTM)

Posted by Sue, Volunteer Mentor @sueinmn, Sep 8, 2023

When you are first diagnosed with Bronchiectasis or MAC, chances are you never heard of it before. And the brochure from the pulmonologist's office - if you get one - isn't much help, and can be downright scary, right? Both of these are rare diseases - bronchiectasis affects perhaps a million people in the US, and MAC or NTM maybe 100,000 (17/10,000 (.17%) of the population and 3/10,000 (.03%) respectively. Many doctors, even pulmonologists, have never or rarely seen a case.

So you do what anyone does in 2023 - jump on the computer and "Ask Google" - where you find all kinds of scary stuff, and not a lot of detail. Chances are that's how you found Mayo Connect.

We have so much info, and so many discussions, that's it is hard to find the basics.

So here is a list of places you can find a concise description of diagnosis, treatment and terminology, and some of the basics on airway clearance, which is so important to our healthy:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/learn-about-nontuberculosis-mycobacteria
https://www.bronchiectasisandntminitiative.org/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5478409/

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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Sue, Volunteer Mentor | @sueinmn | Jul 11 4:57pm

Here is another new post by our friend @scoop - describing huff coughing -
Sometimes kids explain things (and demonstrate) more easily than adults. It takes time to undo habits we acquire when our technique is not quite right. Remember to breathe first from your BELLY.


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Sue, Volunteer Mentor | @sueinmn | Aug 29 5:23pm

A different site for your reading pleasure:
https://bronchiectasis.com.au/
Very concise explanations regarding what is an exacerbation, travel tips, the bronchiectasis severity index and much more. For those in Australia, there is also a registry of providers.

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Shelly61 | @shelly61 | Sep 16 8:16pm
In reply to @lilianna "I had clofazimine added after being allergic to rifabutin. I was taking it for 18 months..." + (show)
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I had clofazimine added after being allergic to rifabutin. I was taking it for 18 months and if you can try. I did not have side effects except being orangey, kind of tanned but it thought it was nothing if it could help me. Besides I had my eyes checked every month.if clofazimine is your option, I would say add it to your regimen.

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@lilianna
How are you doing g now? I must also be allergic to Rifubutin. Just started and it gave me chills and high temp. Felt miserable. I’m looking for options. Did the clofazimine knock out the MAC?

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lilianna | @lilianna | Sep 17 7:31am

Talk to your doctor. After a month on trial on off antibiotics it was eventually decided the reason of high fever- 103 was rifabutin. It was changed to IV three times a week of amikacin( I had a picc line) for three months and clofazimine every day and of course amoxicillin-every day. Then after my visit to NJH in January last year ethambutol three times a week was added to the regime. I was on the antibiotics for 23 months although my ID insisted 24 months but I had enough( very week and at the end abdominal pain every day) . I was MAC negative 5 months after started the treatment and continued the meds.dont be afraid of clofazimine. Besides being orangey ( looked quite nice) I tolerated it well.

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lilianna | @lilianna | Sep 18 2:34pm
In reply to @lilianna "Talk to your doctor. After a month on trial on off antibiotics it was eventually decided..." + (show)
Profile picture for lilianna @lilianna

Talk to your doctor. After a month on trial on off antibiotics it was eventually decided the reason of high fever- 103 was rifabutin. It was changed to IV three times a week of amikacin( I had a picc line) for three months and clofazimine every day and of course amoxicillin-every day. Then after my visit to NJH in January last year ethambutol three times a week was added to the regime. I was on the antibiotics for 23 months although my ID insisted 24 months but I had enough( very week and at the end abdominal pain every day) . I was MAC negative 5 months after started the treatment and continued the meds.dont be afraid of clofazimine. Besides being orangey ( looked quite nice) I tolerated it well.

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Shelly my bad it was azithromycin of course not amoxicillin. My phone does tricks.

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kathyjjb | @kathyjjb | Sep 18 4:07pm
In reply to @scoop "Graphical presentation (2019) A Physician’s View: Guide for Patients with NTM Infections https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf" + (show)
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Graphical presentation (2019)
A Physician’s View: Guide for Patients with NTM Infections
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf

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Excellent resource! Thank you! I believe (and hope) the culture conversion rates have improved for macrolide resistant MAC with new drugs since 2019.

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scoop | @scoop | Oct 1 12:39pm

Really good short lectures on our shared disease and its management from experts in the field including Dr. McShane! Especially lectures 1, 2 & 3. I listened on 1.5 speed.
https://www.youtube.com/@RethinkBronchiectasis/videos

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scoop | @scoop | 2 days ago

Jennifer Honda PhD from University of Texas at Tyler discusses How We Should Think About Our Environment at the NTM & Bronchiectasis: Patient and Family Conference. Sep 15, 2025
https://m.youtube.com/watch?v=LEB1VRoH2Rs

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