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Resources for The ABC's on Bronchiectasis and MAC (NTM)
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
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Practical tips in bronchiectasis for Primary Care (written for practitioner; contains pearls of info)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9453736/-
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11 ReactionsGraphical presentation (2019)
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdfA Physician’s View: Guide for Patients with NTM Infections
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14 ReactionsWow, scoop, your get our new "Helpful Link of the Week" Award.
Everyone in the group should look at this!
Sue
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5 ReactionsThank you for this link! This document is very concise and written in an understandable way. I agree with Sue - everyone should read this!
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3 ReactionsThank you for these links! Very helpful.
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2 ReactionsOh my heavens, Scoop, this is amazing! Thank you, thank you! It is far and away the most clear, easy to understand, and informative document I've ever seen about NTM. Thank you again!
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1 ReactionThank you! I’ve already read it several times.
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1 ReactionThis is also interesting and an easy way to know if you need to be treated for an exacerbation.
Bronchiectasis severity is connected to the colour of phlegm
https://cosmosmagazine.com/health/medicine/broncheictasis-phlegm-colour/
View the article + more on Flipboard.
https://flip.it/zmJDc7
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4 ReactionsA big question around NTM is when/whether to treat with antibiotics.
There is always something new to read (or watch.) This video is well worth the 40 minutes, and answers a lot of questions that are asked here - right from the experts.
Here is the latest from NJH (National Jewish Health):
https://www.youtube.com/watch?v=bcvHKHzi4Q0
Dr Daley is one of the foremost experts on NTM, and he clarifies when to use "watchful waiting" and when and how to treat.
Sue
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3 ReactionsTo be clear, this article/study has not been peer reviewed. I don't find this particularly helpful because my color changes during the day. To think I have an increased risk of death if I have green sputum a couple of times a day or week is not something I want to know about! My dr. has said the color is not as important as shortness of breath.