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New to MAC and considering treatments options: What did you do?
MAC & Bronchiectasis | Last Active: Nov 19, 2023 | Replies (190)Comment receiving replies
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
Replies to "Melinda, It may be my oppositional nature, but when I read, "...You must boil this equipment..."
Hi Sue-
I tried to join Lung Matters. I was accepted and welcomed. I asked two questions. One was, "Has anyone ever heard of omadacycline?" and the other was "What strength saline does everyone use?" They immediately deleted me from the group. I am new to this journey and just trying to figure it all out. It was extremely disconcerting.
I have a Pulm who was ID first and then specialized in PULM. He did a fellowship at NJH. He works directly with NJH physicians.
I am happy to have found this support group at Mayo. Everyone appears to be very supportive and not judgmental.
I, too, was told daily sterilization was not necessary.
Thank you!
Connect
Yes I do have a specialist at Mayo whom I’ve been seeing since 2020. Prior I had a pulmonologist who treated me for COPD and diagnosed me with bronchiectasis in 2018. He never recommended sputum samples and or treatments. As my lung condition worsened I had an appointment with National Jewish Heath but canceled due to Covid. I then found a specialist at Mayo. I’ve had to learn about my disease and available treatments from different sites. I agree that what is effective for one person may not be for another. I too have had to take steroids on occasion and acknowledge that sometimes they are necessary. The “Lung matters “site that I have been following are evidence based treatment recommendations. For example, use of pall filter for showering, boiling drinking water and boiling reusable equipment after each use for minimum of 10minutes and adding additional minutes for x amount of feet above sea level. They have many other recommendations/guidelines . I do agree that treatment plans should be tailored to individual needs as many of us have additional illnesses that alter our plan of care. I looked at these guidelines as additional safeguards if one chose to use them. From what I’ve read, the guidelines were evidence based outcomes from National Jewish Health, Mayo Cliniic and a few other sites.. I thank you for your experience and views. After rereading my post, I realized “must “ was not appropriate as recommendations or guidelines are individual choices. I thank you for input and objective information.