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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
https://www.bronchiectasisandntminitiative.org/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5478409/
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I read 8% have NTM worldwide, but 50% in USA
And 66% of NTM is MAC
33% have pseudomonas aeruginosa
11% have aspergillus fumigatus
MAC is rarely mentioned in Europe, I had to look
it up when I saw this forum
Please add medical research and/or scholarly links to your numbers as this topic is "Resources for The ABC's on Bronchiectasis and MAC."
most are from the recent German guidelines
for bronchiectase management
(109 pages , .pdf , in German page 23f )
newbies can't post links here, I hope it works now :
no, search for
s2k-Leitlinie Bronchiektasen
I can also post links to the European and British guidelines (later)
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Here is a new and very comprehensive link on all the airway clearance techniques:
https://www.ncbi.nlm.nih.gov/books/NBK604210/
Thanks to @wolfplanetzero for posting it originally.
Research tip:
If you see a reference like this: [1] you can click on it and it will link you to the source article the author is referring to, click that and the article will open. If it is only a summary, you can look to the right and find a link to the (usually free) full text.
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2 ReactionsDepends ehat you are taking re shortn as of breath. I have been on what is being called the big 3 for a couple of years and am on the highest dosages. The MAC is no longer getting better nor is it getting worse. So my infectious diseases doctor has also put my on Arikayce which I nebulise. At first it was every day until I couldn’t take it any more so my doctor let stay off it for a week and start again every second day. This was much better. However one of the myriad of side effects of this poison is it causes shortness of breath. Aftoer the first six weeks my sputum came back negative for MAC and it appears that is the way it is staying four months later. So I may finally have success and be off all meds in another month. Here is hoping I never catch this again. That is we’re acupuncture just may help.
Where acupuncture may help