Replies to Hi Sue, A few questions, diagnosed with BE because of cough this was 2 years ago….

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MAC & Bronchiectasis | Last Active: Sep 30 3:31pm | Replies (42)

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@playadelcarmen

Hi Sue, A few questions, diagnosed with BE because of cough this was 2 years ago. I was given a vest.
Bronchoscopy 6 months ago showed MAI, went to ID Dr. She did not put me on the Big 3, because my symptoms were not bad, no infections, no cough, slight shortness of breath, no cavities.
I am 78, work out or walk three times a week. Meat once a week. I am also blind in one eye, scared of antibiotics. I feel good, when to start the Big 3? Signs to look for, coughing up blood, yikes. Are my lungs getting worse and me not know it? Thanks for any info you and group can give me.

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Replies to "Hi Sue, A few questions, diagnosed with BE because of cough this was 2 years ago...."

Sue, Volunteer Mentor | @sueinmn | Sep 19 11:00am

Hello Diana, I am not a doctor, so I cannot answer the question we all ask ...,"when to start the Big 3?..." But matbe I can point you to a few resources to help.

Let's start by saying many here live for many years with a diagnosis of MAI/MAC/NTM who never get to the point where the antibiotics are required. For others, their overall symptoms and levels of infection are such that antibiotics are the immediate response. Then there is the great, gray "in between."

The experts constantly explore this subject. In 2020, guidelines for clinicians were issued, but it is pretty heavy reading:
https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf
For a more user-friendly explanation, see this YouTube Video from the National Jewish Health Patient Conference in 2022.

In addition to the vest, are you using airway clearance exercises to get the mucus out after it is loosened up? Do you use inhaled saline to make your lungs less welcoming to the bacteria?

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