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thumperguy (@thumperguy)

Living Dangerously - Nebulizer Cleaning

MAC & Bronchiectasis | Last Active: May 12 11:41pm | Replies (137)

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@tampamac

I am new to this forum and very appreciative of the discussion. I am currently with what I suspect is my 3rd ntm infection over the past 15 years. While my doctors have made the diagnosis the management seems to be something they are not familiar with. And thus recurrent issues. I now realize this is a radical life shift for me and how I can contribute to the management. I started the 7%saline nebs a week ago and am amazed at how helpful they are. Thanks again. Any other tips appreciated.

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Replies to "I am new to this forum and very appreciative of the discussion. I am currently with..."

Hello, and Welcome to the MAC and Bronchiectasis group. If read some of the posts/discussions, you will see many of us experience reinfection or other exacerbations from time to time – that is "the nature of the beast" and most of us will try whatever strategies we can to avoid having to take the Big 3 antibiotics again (azithromycin, ethambutol and rifampin or a similar combo.)

If you want to read more of the discussions, some have hundreds of posts and go back many years – to read the most recent, you can click the arrow right below the first post and select "Newest to Oldest."

As you have learned, in spite of all the activity on Mayo Connect, Bronchiectasis and NTM are fairly rare, and not a lot of doctor's, even many pulmonologists, are familiar with how to treat it. Since you are a repeat customer, it may be beneficial to you to either have a consult at a large multidisciplinary practice like Mayo, where there are specialists in the disease, or seek out a pulmonologist in your area whose practice includes NTM/MAC and Bronchiectasis. (You may be able to find this in the doctor's bio, or call the office and ask specifically.)

Also, there are new guidelines about when to treat MAC with antibiotics and how to stay healthy here: https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/learn-about-nontuberculosis-mycobacteria and here: https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/questions-to-ask-your-doctor

You are correct about the 7% saline – I truly believe that it, in combination with Duoneb, got me back on my feet after a recent serious bout of bronchitis, without needing antibiotics.

What did your doctor recommend? Was a sputum specimen taken for doing a culture to determine exactly which bacteria you have?

Sue

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