Reducing Exposure to Nontuberculous Mycobacteria (NTM)

I agree that most distilled water I probably low risk, if bottled under sterile conditions. I use .2 micron filtered water because a filter that fine traps any mycobacteria.

I personally think there is a difference between steam from boiling water, which is highly unlikely to be contaminated, and "steam" from a shower, which is droplets water that is not hot enough to kill NTM. But I don't have any science to prove it.

I just think we get "way in the weeds" sometimes trying to avoid EVERY exposure. I try to concentrate on reducing big risks (eg indoor pools and hot tubs) and ignoring the small ones (getting my hair washed at the salon or opening the dishwasher that has run at 180⁰ for an hour.) I have been MAC free for 5 years and counting after almost 2 years of antibiotics.

Everyone is different and I respect that. My risk tolerance is probably higher than average in this group.

Sue regarding your water filter. I think once you posted you have well water source. So what is and where is the 0.2 filter you use. I researched all water filters, reverse osmosis etc and I am so confused what to use so I still boil water, have the water heater set to 140 degrees and hope it’s enough for everyday kitchen use. Thank you

My filter is in my kitchen water feed. It is a dual filter - first it goes through .9 micron, then through .2 micron. Sorry I cannot give a brand name - my husband is totally in charge of it. We have city water from a deep well in one location, my second has just changed to the same. Both kitchens have the same filter, plus the water heater at 135F or a bit higher in each. We do not drink or cook with water from the other taps in our house. I use the filtered water to make ice.

So far (over 6 years) this has been safe for me.

Sue regarding your water filter. I think once you posted you have well water source. So what is and where is the 0.2 filter you use. I researched all water filters, reverse osmosis etc and I am so confused what to use so I still boil water, have the water heater set to 140 degrees and hope it’s enough for everyday kitchen use. Thank you

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

Sue, at the recent NTMir conference in Berkeley (last Wednesday and Thursday) Dr. Falkinham said that salt water pools were not safe from NTM because the concentration of salt was not high enough. You are doing well in spite of that, but thought you should know, and good for others to hear this as well.

@bolso1
Thanks Armando for posting Dr. Falkinham's environmental info. Also @sueinmn, the info is dated 2021, do y'all or anyone know if there has been any revisions/addendums to Dr. Falkinham's info since this 2021 printing? Thanks. This is a great place for info!

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