(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Jane, please, don’t give up. Most of us struggled initially, but we persevered. Airway clearance used to take me 2 hours/session doing 2 sessions daily. Now, it takes 30 minutes/session. It was one of the most difficult life style changes I had to make.
Are you nebulizing with 7% saline? How often do you do it?
Is it possible to ask your pulmonologist to prescribe The Vest?

Playing devil's advocate again...remembering that NTM is everywhere - air water and soil, and that bronchiectasis is a disease I must live with for a long time.
Here is my inquiry for today - not meant to scare you, but rather to make you think about how far to carry caution - Do you sterilize every cup, glass, dish and utensil that comes into contact with every morsel of your food and every drop of your beverages? Do you sterilize every item that comes into your possession? Do you remove all clothing and footwear outside your home and discard it before entering? Is your home a sterile bubble with no outside air exchange?

If the answers are "No", you are exposed to NTM every day.

I have made the conscious decision that spending my life worrying about ...
sterile drinking water, NTM in the air, or germs on my clothes and belongings ... is not how I choose to live.

I largely drink bottled spring water, but if it is not available, I make do with the tap. I order beverages in restaurants or drink them in friends' homes - with ice from commercial ice machines.

So far (3+ years off the Big 3) it has worked for me, with only a few minor exacerbations. I consider healthy food, adequate rest and thorough airway clearance with saline are more important for my long term health, my sanity and my ability to live a satisfying life.

I have not yet seen a rigorous scientific analysis that demonstrates drinking only sterile water prevents NTM infection/reinfection. Can anyone cite such a study?
Sue

Playing devil's advocate again...remembering that NTM is everywhere - air water and soil, and that bronchiectasis is a disease I must live with for a long time.
Here is my inquiry for today - not meant to scare you, but rather to make you think about how far to carry caution - Do you sterilize every cup, glass, dish and utensil that comes into contact with every morsel of your food and every drop of your beverages? Do you sterilize every item that comes into your possession? Do you remove all clothing and footwear outside your home and discard it before entering? Is your home a sterile bubble with no outside air exchange?

If the answers are "No", you are exposed to NTM every day.

I have made the conscious decision that spending my life worrying about ...
sterile drinking water, NTM in the air, or germs on my clothes and belongings ... is not how I choose to live.

I largely drink bottled spring water, but if it is not available, I make do with the tap. I order beverages in restaurants or drink them in friends' homes - with ice from commercial ice machines.

So far (3+ years off the Big 3) it has worked for me, with only a few minor exacerbations. I consider healthy food, adequate rest and thorough airway clearance with saline are more important for my long term health, my sanity and my ability to live a satisfying life.

I have not yet seen a rigorous scientific analysis that demonstrates drinking only sterile water prevents NTM infection/reinfection. Can anyone cite such a study?
Sue

Thank you for offering your very reasonable point of view concerning individual protections. Another area I am concerned about is external environmental protections…ie: where might NTM exist in lesser numbers in our environment geographically speaking? I see studies citing higher incidences in the southeast United States and Hawaii and I wonder if one might be safer living in other areas. Are you aware of any science behind external environmental risks? I find myself looking for a place to settle.

I agree with your concern @christielynn and also have been searching for scientific conclusions about risk in geographic locations in order to make a decision about spending time in SC where we have a condo ( I live in PA) . I have been anxious about being in the SC coastal area. We found a small research study about NTM infection rate in CF patients in FL that showed a 9x increase in rate of NTM infection for those who lived within 500m of water. I have posted that link below. We have decided to sell our place in SC as it is surrounded by water in the low country. It is a very personal and difficult decision without a lot of guidance. I hope you can find peace in the process of deciding where to settle as NTM is present to some degree everywhere. You can’t mitigate the outside environment that surrounds you so I think location is an important decision.
Best wishes.
https://www.researchgate.net/profile/Raid-Amin/publication/311885929_Household_proximity_to_water_and_nontuberculous_mycobacteria_in_children_with_cystic_fibrosis/links/5a60e59c45851517c7af0120/Household-proximity-to-water-and-nontuberculous-mycobacteria-in-children-with-cystic-fibrosis.pdf

Thank you for offering your very reasonable point of view concerning individual protections. Another area I am concerned about is external environmental protections…ie: where might NTM exist in lesser numbers in our environment geographically speaking? I see studies citing higher incidences in the southeast United States and Hawaii and I wonder if one might be safer living in other areas. Are you aware of any science behind external environmental risks? I find myself looking for a place to settle.

That is an interesting question, but because NTM is rare, most studies are relatively small case studies, not necessarily research studies. And in those I have reviewed, there was little or no consideration of other factors like higher risk occupations, or common age (e.g. agriculture or poultry plant workers, or in the case of Florida, large population of older women (higher risk group) who may have relocated from colder climates because they already had lung problems.
Also, other assets may outweigh a slightly higher risk - such as ready access to high quality medical care or proximity to family and friends for getting help.
So, the bottom line is that some areas may have a higher risk of infection, most likely to people who have no idea of the risk or their susceptibility, and therefore taking no precautions. Now that you are diagnosed, and know the steps to take to protect yourself, does it really matter where you live?

I continue to live in the 2 homes I occupied when I became infected. My water is tested, but I'm sure it came from gardening, whether the soil itself, the mulch or plants. So I take many precautions there - having someone else do any and all dusty work while I stay safely in my filtered home. And wearing sleeves, gloves and mask when interacting with plants and soil, wetting things down and showering and laundering clothes when done. My garden shoes don't even enter the house. On windy/dusty days I wear a mask outdoors. 3 years and counting off meds and no reinfection.

This is how I live with Bronchiectasis, asthma and the risk of MAC or Pseudomonas reinfection.

I am an avid outdoorswoman so yes, the level of NTM surrounding me does matter. I saw a recent study in Hawaii where the rock type there bonded with Mykobacteria. It was the very stuff beneath my feet everyday and rose into my breathing range via the cycle of enviro transpiration. I’m currently 64, waiting to go onto Medicare and have the ability to live almost anywhere, taking into account good medical and my family of course.

What is 4 hr immune therapy IV?