I was told to move out of State or expect to be on Oxygen

I am 81 and have lived at 6000+ feet in Colorado for 55 years and I'm not going anywhere. I'm doing fine in spite of MAC/BE/and a rare fungal lung infection. I follow the protocols for a better life and haven't been on any meds for the past 3 years. Remember, you are your best advocate and you do not have to follow any advice if it makes you uncomfortable. Best wishes.

@cholash More or less the same time. I was diagnosed with BE after a CT scan in October last year and the MAC after a bronchoscopy in Nov, and no I don't have any other lung condition. I'm going to see my pulmonologist tomorrow and going to ask for a referral to another Infectious disease doctor who works with the BE/NTM population .

I'm in CA and was diagnosed with BE and MAC in August 2022 when I was 69. I was told by my doctors that MAC can be in water and soil. So no more gardening for me but I accepted that. With regard to the water, it really scared me. I didn't know what to do because it can be in shower water and tap water and if it aerosolizes in the shower, I could breathe it in or if I'm washing pots and pans, the steam from the hot tap water could get me. This group was great for learning how to protect myself to where I feel comfortable. There were many suggestions of special water filters designed to filter down to 0.2 microns that were able to filter out the MAC. I bought filters from SafeWater for my kitchen tap and for my shower. I also have a LifeStraw pitcher and a SteriPen which uses ultraviolet light to sterilize water in under a minute for 48 oz., good for taking on the go. I consider all of these to be investments in peace of mind as I was tired of being scared to take a shower, drink water and cook and clean my kitchen with it.

@hilarys26 I'm somewhat concerned that a doctor would make such a statement. While there are parts of the US (and the rest of the world) where NTM/MAC are more prevalent, unless you live on the edge of a swamp/wetland, that is an extreme measure!
When first diagnosed, most of us have never heard of MAC, NTM or bronchiectasis.If we dive into Dr. Google and some Facebook pages and websites, we get scared.

Please do talk to you pulmonologist about the matter, and yes, find a different ID doc.

Years ago I read on a site dedicated to Bronchiectasis that I had no choice but to give up gardening and swimming. On top of the new diagnosis, meds, airway clearance, and feeling like #$%^ that about pushed me "over the edge" and left me crying in my PCP's office.
She urged me to talk to my ID doc (my pulmonologist at that time was a cranky old dude.) I left the ID doc's office with a new insight, that I have lived by for the past 7 years, and repeated to countless people on this site and others:
"Take reasonable precautions, then go out and live your best life. Bronchiectasis is a disease you will need to learn to live with, but it is VERY unlikely that you will die from it."
So, I swim in lakes, oceans and outdoor pools. I garden - masked in dusty situations, and leaving the soil turning and mulching to others. I stay away from sick people, and mask if I cannot. I travel a LOT, control my asthma, eat healthy, exercise, rest when tired, and do airway clearance. And I have been MAC free for over 6 years. Without antibiotics.

Do you have any guidance about precautions to take?

@sueinmn thank you Sue , that is so good to hear ! I went from feeling like I could manage everything to be totally scared of water !! I’m taking advice from people like you , and others on this site , and starting to take extra precautions around my home I have an appointment tomorrow with my pulmonologist and requesting a referral to another infectious disease doctor ( one that I’ve researched ) I’m looking forward to having that appointment and hopefully feeling more at ease . Thank you. Your advice and experience is invaluable !! Hilary

One thing you can do if you have your own water heater is to turn it up to 135+. Dr Faulkenham, who has done a lot of the NTM/MAC research says that kills the NTM in the hot water.

@pacathy Thank you, I have done that

@linda1334 Thank you! Your comments and suggestions are extremely helpful. I will definitely invest in the products you listed. Very much appreciated!! Hilary

@pmmar1 Thank you....good advice!!

My infectious disease doctor told me not to drink tap water anymore. Chlorine does not kill mycobacterium that causes MAC. It's in ground water, river water and ocean water. It's in the soil. So I drink bottled spring water and avoid sprinkler systems and misters. You don't want to inhale the droplets. I don't do any lawn work and I avoid any place where it is being done. I don't know why some of us get MAC and others don't. It's something to do with our immune systems. I thought it was due to bronchiectasis causing mucus in our lungs which provides a good breeding ground. But people with emphysema don't seem to have it. So apparently whatever causes us to get bronchiectasis must be what causes us to get MAC. General population is also exposed to it but have ability to fight it off. If anyone can explain this I welcome the info.