← Return to Reducing Exposure to Nontuberculous Mycobacteria (NTM)

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@sueinmn

I realize that both MAC and bronchiectasis seem daunting at first. With all cautions about mycobacteria being everywhere, and the meds being difficult, etc, I was frightened at first.

Then I began reading everything I could find about it, and it seemed like it was even worse…and somehow I found Mayo Connect and began reading posts by people who had lived with both for many years.

As I continued learning, I formed a philosophy that guides me. I am determined to live my best life, as fully as possible, in spite of having Bronchiectasis and having had severe MAC and Pseudomonas. I refuse to allow it to make me paranoid, or turn me into a recluse. (All those pandemic months further reinforce that decision.)

With that as my goal, here are the changes I have made:
Airway clearance with 7% saline nebs and add asthma meds as needed.
Wear an N95 mask and gloves when handling soil and mulch, and shower immediately after.
Don't garden in my Texas yard, where I probably got MAC. Stay inside, wear a mask outdoors there when it is dry & windy.
Stay out of and away from hot tubs, which can be a MAC-rich spot.
Use whole house and room HEPA air purifiers and change filters even more often than specified.
Stay away from people with respiratory infections, wear an N95 mask if I have to be around them.
Turned up the water heater above 134F.

Here are things I have decided to live with:
Drink and cook with filtered tap water at home (unboiled) and bottled spring water elsewhere.
Shower with a rainwater showerhead (larger drops) but I don't disinfect it. In hotels, I run hot water for 3-4 minutes, then shower as briefly as I can.
Swim in the ocean and saltwater swimming pools. In lakes I make every effort to keep my head and face out of the water.
I continue to travel and eat out (very cautiously now, due to Covid.)

So far, so good. My lungs have remained stable after 21 months off antibiotics, with no evidence of current infection, in spite of quitting the drugs while still positive for MAC.

What is the main source of your feeling of paranoia? I really don't think it was Dr Falkinham's intention to frighten us.

Sue

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Replies to "I realize that both MAC and bronchiectasis seem daunting at first. With all cautions about mycobacteria..."

I know it wasn’t his intention and more knowledge is more power. Just newly implementing some things has overwhelmed me. But that’s me. Once I get used to something and make it a habit, I’m pretty good. Just very tired and I know that affects my stress level. Thank you for your ideas. They sound very doable and I may just follow your lead!