← Return to Reducing Exposure to Nontuberculous Mycobacteria (NTM)

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@sueinmn

I don't have a list at hand. Dr Joe's point was that the amount of mycobacteria, if any, in bottled spring was so low it did not pose a risk. Even at NJH, it is what is offered to patients and visitors.

I am going to repeat something here that I have said before on Connect. I am not trying to offend anyone, but rather try to bring another point of view.

Mycobacteria is EVERYWHERE, and you cannot avoid it entirely. The point is to try to REDUCE EXPOSURE to a safer level for those of us with Bronchiectasis and MAC.
What does that mean in practical terms?
I'm only going to talk about water here.

For that stuff we stick directly into our lungs, we get as close to zero as possible. That means being diligent with all of our devices - diligence to some means cleaning and disinfecting after each use, to others it means cleaning after each use and disinfecting once a day, and for still other it means cleaning daily and disinfecting after X number of uses. All of these can be OK depending on the fragility of the patient. But NTM is not going to grow on your device within 8 or 12 or 24 hours if you wash it. Also, testing shows that nebulizers lose at least 20% of their effectiveness after 60 cycles in a sterilizer.

When you clean or sterilize devices, no need to use sterile water - it becomes sterile along with everything in it when heated. Whether to use tap, filtered or distilled water is up to you and the instructions for what you are cleaning.

For stuff we are exposed to every day that produces mist, like showers, we heat our water above 135F, sanitize the shower heads monthly, use showerhead with big holes to reduce, turn on the exhaust fan and take a short shower. Did you know one of the best thing you can do is keep your toilet seat lid closed, especially when flushing?

For things like washing clothes & dishes, don't stand over the a sinkful of steaming water. Fill the sink full of dishes with HOT soapy water, leave the room and come back when it has cooled (less vapor) to finish - and your dishes have mostly soaked clean. If you have one, load the dishwasher, run it, open it when done to airdry and leave the room. Keep your sink clean - it can harbor a lot of nasty bugs besides NTM. Close the washing machine and leave the room while it is running and emptying to avoid the most exposure.

Stay out of obvious, known sources of exposure - hot tubs (indoors and out), indoor swimming pools (and the rooms that contain them) and outdoor misters. Enjoy a dip in an outdoor pool, the ocean or the gulf. Some brave souls also swim in lakes and rivers - I am one, but take care to keep my head out of the water.

Drinking water - remember we are MINIMIZING exposure - if you have or possibly have GERD, or a swallowing problem, this is more important because you have the risk of aspirating water into your lungs. For the rest, swallowed NTM will pass through your body and out - it will not colonize in your stomach or intestines or migrate to your lungs.

Refrigerator water filters and Carbon filters (including reverse osmosis) can harbor and grow NTM - avoid them. But, is it OK to have ice in a beverage occasionally when eating out? That depends on your risk tolerance - it is OK for me, but you might decide otherwise.

Filter or Boil? Doing both is not necessary, as long as you use a .2 micron filter & change it according to directions.
Note: There are .2 micron filter Lifestraw pitchers for countertop use and household or single-source filters for faucets. I am not planning to get into a discussion of .2 micron filters, brands and installation - there are a wide variety available online from water purification experts. Mine is installed in-line between a carbon filter that takes out the "big stuff" and a separate filtered water faucet at the kitchen sink. There are other choices out there

CAUTION: All precautions are for nothing if you don't clean and sanitize your water pitchers and bottles, caps and straws regularly soak in Dawn & water, scrub with a brush, sanitize in VERY hot water or in the dishwasher on the sanitize or hot-dry cycle.

Bottled Water - I drink bottled spring water, because per Dr Falkinham the NTM counts are so low as to be safe. He has dedicated his lifework to studying NTM in water, so I trust him and his opinions. I do not open bottles and leave them sit around for a few days, because I assume once I put my mouth on them I am introducing germs, and not just NTM.

Thanks for reading what has turned out to be a long post - the whole point of it is that there is NOT one and only one best answer. I have chosen a path, for the past six years, that was first recommended by my ID doc "Take reasonable precautions, then go out and live your life. You are going to live with this for the rest of you life. Don't let it consume you."

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Replies to "I don't have a list at hand. Dr Joe's point was that the amount of mycobacteria,..."

thank you Sue for a very detailed reply. I am gonna try Mountain Valley sping water since it is in a GLASS bottle, so glad to stay away from plastic a bit.
have a great day, best wishes of great health!

I also carry a SteriPen in my purse which was another thing Dr. Falkinham tested. In restaurants I ask for water with no ice and stir with the pen for 90 seconds. I also use it when I visit my daughter, or my friend, or stay in a hotel. It makes for being a slightly less "high-maintenance" guest!
Anna

In July I saw a report that said Dr Falkinham had done a study in which he attempted to grow MAC on nebulizing equipment and after two weeks it did not grow. I tried to find the reference on the NTMir site and got this response from Dr. Falkinham:
My lab did a study of the Aerobica and we did not find any attachment of NTM to the surfaces of the nebulizer. That means there would be no carry-over of NTM from a patient using the nebulizer. That result also halted us from developing and comparing different ways to sterilize the nebulizer after use.
Our study was presented at a meeting (bronchiectasis?) in New York by the Aerobica manufacturer as I was unable to attend.
Joe
I'm still looking for the original with more details, but while I am very diligent about nebulizing daily, usually twice, and washing my equipment in hot soapy water, I am much more relaxed about the sterilizing part. As Sue said, I think each of us must find our own comfort level.
Anna