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.

Dianaf | @playadelcarmen | Nov 8, 2023

Hi Sue, read article on NAC and it mentioned Dry Bronchietasis. I was so excited, because I have no mucus production or lung infections. My pulmonologist just said I have this from two bad CTs. Have u heard of this?

scoop | @scoop | Nov 8, 2023

Bronchiectasis Severity Index
https://bronchiectasis.com.au/assessment/medical/bronchiectasis-severity-index

Sue, Volunteer Mentor | @sueinmn | Nov 11, 2023

Antibiotic Susceptibility Testing explained! One of our frequently asked questions is how the doctor decides which antibiotic to use for infections, particularly Pseudomonas Aerunigosa, which is notoriously difficult to knock out.
https://www.tldrpharmacy.com/content/what-every-pharmacist-should-know-about-antimicrobial-susceptibility-testing
Sue

Sue, Volunteer Mentor | @sueinmn | Jan 11 6:44pm

Well, it's been a while since the last update here. I wanted to remind everyone there are some valuable on line recordings, even though they may be a few months or years old.
@becleartoday reminded us of one earlier today. Try this link:
https://ntmtalk.com/
For those who would like to know, there do not appear to be new episodes at this time, but here is a round table which Dr Swenson hosted back in 2022:

As always, we welcome input from every member. If you have found published, medically or scientifically based information about treating and living with MAC and Bronchiectasis, feel free to share it.
We have all learned a tremendous amount from thei support group.
Sue

scoop | @scoop | Jan 13 12:56pm

UpToDate is usually behind a pay wall. For some reason this article was not.

Shared files

Up-to-Date Bronchiectasis in adults: Treatment of acute and recurrent exacerbations - UpToDate (Up-to-Date-Bronchiectasis-in-adults-Treatment-of-acute-and-recurrent-exacerbations-UpToDate.pdf)

Sue, Volunteer Mentor | @sueinmn | Jan 30 9:40am

Travelling with MAC or Bronchiectasis - From our friend @pacathy
Here is a scholarly article regarding the safety of travelling with Bronchiectasis and MAC, with wonderful information gathered from experts around the world:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6819988/
Thank you Cathy - this covers it all! Flying, altitude. meds, even SCUBA diving!

cwal | @cwal | Jan 31 6:56am

In reply to @sueinmn "Travelling with MAC or Bronchiectasis - From our friend @pacathy Here is a scholarly article regarding..." + (show)

Lots of good info here! Thank you!

lorifin777 | @lorifin777 | Feb 7 8:13am

Just diagnosed mac lesions lukemia no white blood cells. Looking for positive reinforcement and feedback. Scared ty

lorifin777 | @lorifin777 | Feb 8 7:51am

In reply to @lorifin777 "Just diagnosed mac lesions lukemia no white blood cells. Looking for positive reinforcement and feedback. Scared..." + (show)

Can you please tell me how I read my messages? I can't figure it out new to
the site thank you

pacathy | @pacathy | Feb 9 6:35am

In reply to @lorifin777 "Just diagnosed mac lesions lukemia no white blood cells. Looking for positive reinforcement and feedback. Scared..." + (show)

Just to clarify: were you diagnosed with MAC Lung disease thru a chest CT? Did they get a sputum culture positive for mycoplasma avian complex? The positive culture is the key diagnostic test. I ask because my CT looked like MAC lung, but cultures done on a bronchoscopy were negative.
I’d suggest you start a new thread with your history and questions. This is an older thread about travel and people might not look.
Hugs to you-it sounds like you’re going thru a lot.