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New to MAC and considering treatments options: What did you do?

MAC & Bronchiectasis | Last Active: 4 days ago | Replies (195)
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@melinda561

Get the AerobiKa and reusable aeroclipes nebulizer equipment. You must boil this equipment for 10 minutes after use to destroy the MAC, pseudomonas and other bacteria. Nebulize twice daily followed by air way clearance exercises. On Facebook look up Lung Matters. This has an incredible amount of information which is evidence based treatments for bronchiectasis patients with MAC etc . We are our own patients advocates when it comes to our health. Never stop searching and learning about our disease and treatments. Find a pulmonologist who specializes in bronchiectasis/MAC etc. many pulmonologist treat us like COPD patients and the inhalers with steroids can cause more serious lung problems. This is why you need the care of an expert.

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Replies to "Get the AerobiKa and reusable aeroclipes nebulizer equipment. You must boil this equipment for 10 minutes..."
Sue, Volunteer Mentor | @sueinmn | Oct 12, 2023

Melinda, It may be my oppositional nature, but when I read, "...You must boil this equipment for 10 minutes after use to destroy the MAC..." I must respectfully disagree.

I am following the protocol laid out by my ID doc - wash thoroughly daily and boil weekly. MAC is slow to grow, and pseudomonas and other bacteria respond well to soaking & brushing. So weekly boiling has worked for me for 4 years now with no antibiotics and no reinfection.

As for the using the Aeroeclipse, choice of a nebulizer is a very individual thing. I have probably tried one of everything on the market and settled on a much simpler reusable & boilable one. I found the Aeroeclipse slow to use and fiddly to clean. The same with the Aerobika, I do prefer it to the Acapella, but my daughter is the opposite.

You are correct that we must each find our own path with this disease, and I am glad you found a site that is helpful to you. But I will repeat that no two bodies, lives or personalities are alike, and there is no one formula or "one size fits all" approach to living with Bronchiectasis and MAC. What works for one person is not necessarily the best choice for another.

And of course, ideally everyone should have a pulmonologist who specializes in MAC and Bronchiectasis. Unfortunately, in our large country, with geographic limitations and constraints from various insurance policies, these experts are out of reach for many people. And many of our members are outside the US, which causes its own set of complications.

That is why our support group on Mayo Connect is so important. We spend many hours educating one another, so people can choose to change doctors, educate themselves, and bring new ideas to their accessible doctors.

Also, I will point out that even though inhaled steroids are generally a bad idea for people with Bronchiectasis, and can carry an increased risk of infection, they do have a place in treatment of some of us - especially those who have asthma or COPD as well as Bronchiectasis. That is why, as a member and mentor, I try to never say "Never"

Have you been fortunate enough to find a pulmonologist or ID doc who is expert in treating Bronchiectasis and MAC?
Sue

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