Reducing Exposure to Nontuberculous Mycobacteria (NTM)

Thank you Armando.
I did note this article references the one I had seen earlier about "pink slime" mold and NTM not being able to coexist - I wonder why I couldn't find it earlier this year when I was searching?
Also, for those concerned about drinking water while travelling - it appears we have 2 viable options - bottled Spring Water (vs purified drinking water) and the commercially available filtering water bottle. I'm heading out for an appointment, but will look up the availability when I get home.
Sue

As to Spring Water, Dr. Falkinham explained that the term spring water is generic. Any bottled water labelled "spring water" will serve. They have tested grocery-purchased "pure", "distilled", and "spring" waters at local grocery stores and found that microbial numbers were lowest in those labelled "spring water". Further, water labelled "spring water" had the lowest number of MAC and NTM; quite a bit lower than what they found in municipal or household water samples. He advises going to the grocery and picking up a collection of different bottled waters labelled "spring water" and take them home, then do a taste test and find the one you like and use that.

Thanks for this info! I read that Crystal Geyser spring water is recommended. When at home, do you boil your water?
Also if we use NeilMed Sinus Rinse, should we be boiling the distilled water first?

@cavlover
Yes, we do boil the water for 10 min.
The NeilMed webpage recommends the use of boiled water: https://www.neilmed.com/usa/np_water_quality.php

I understand about boiling the tap water. But do we have to boil the distilled water?

When water is distilled, the purpose is to remove metals and other contaminants; doing that actually sterilizes the water. The bottling and sealing process may or may not be done in sterile conditions.

Distilled water used in medical settings is bottled in sterile conditions, labelled sterile, and provided in ampules, bags or bottles of appropriate size to be completely used in one application. Leftover amounts are not considered sterile and are discarded (for example, a squeeze bottle used for wound irrigation is tossed after the wound is bandaged.)

When distilled water is bottled for commercial use (like the gallon jugs in the grocery store) they are not labelled sterile, so the bottling process is unknown. And once the bottle is opened, airborne contaminants can find their way into the bottle, so it can no longer be considered sterile. If the seal is compromised during handling, it may or may not be sterile when you buy it. That said, distilled water is nutrient-poor, so it is a poor growing medium for bacteria, but...

I don't use any sinus rinse, but if I did, I would err on the side of caution and boil whichever water I use according to their instructions.

As for Crystal Geyser being the recommended spring water, I believe it is a matter of personal taste and availability. Have you found something different?

Sue

Thank you, Sue, so much for this detailed info! So I warmed up my sterilized, boiled drinking water in the microwave and used it for my nasal rinse. Since I don’t have my syringes (that I can boil for my nasal rinses), I used the plastic bottles that came in the kit. I sanitized them in my WABI.

Geez does this ever get less complicated! 😆

I’ve been in an apartment for the last several months.
I am definitely getting paranoid after reading that article. Maybe my paranoia will dissipate after I take my COLD, SHORT showers for now on!

I have a home distiller. I use my own distilled water for boiling my airway clearance devices. Not only am I in control of the distiller, I also don't need to lug jugs of distilled water maqde in some factory home from the grocery. I don't currently use a nasal rinse but I think I would be confident using my home brew distilled water.

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

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!