Reducing Exposure to Nontuberculous Mycobacteria (NTM)

Posted by Armando @bolso1, Sep 16, 2021

Please see the attached document prepared by Dr. Joseph O. Falkinham, III, a world authority on the management of NTM dispersion.

Shared files

Reducing Exposure to Nontuberculous Mycobacteria (Reducing-Exposure-to-Nontuberculous-Mycobacteria.pdf)

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

wsbme74 | @wsbme74 | Apr 17, 2023

Just came on this thread to try and find a countertop electric kettle that will keep boiling - prior to my diagnosis, I used it so much through the day. I guess it does not exist?

Sue, Volunteer Mentor | @sueinmn | Apr 17, 2023

In reply to @wsbme74 "Just came on this thread to try and find a countertop electric kettle that will keep..." + (show)

Not in most places. The auto-shutoff is a safety feature, required in a lot of countries now. An alternative might be an induction hotplate with an old-fashioned tea kettle. Some have timers and temperature controlled burners.
Sue

mpowers | @mpowers501 | Apr 18, 2023

I just looked through the article referenced above: Reducing Exposure to Nontuberculous Mycobacteria (Reducing-Exposure-to-Nontuberculous-Mycobacteria.pdf).

Debby Downer could have brought me a lot more cheer today than seeing that article!!!! Why even get out of bed??? Might as well confine yourself to a bubble!

We are all handicapped to a degree! But my gosh live your life to the fullest extent possible while still being aware and taking precautions!!!

irenea8 | @irenea8 | Apr 18, 2023

In reply to @wsbme74 "Just came on this thread to try and find a countertop electric kettle that will keep..." + (show)

Linda Esposito provided a link for a kettle that keeps boiling till empty and provides moisture. It was a discussion about dry air and how to humidify. I ordered the kettle and if you leave the lid open it will not auto shut off till it runs dry. It lasts about 8 minutes or so and will make the air less dry. It works!

Sue, Volunteer Mentor | @sueinmn | Apr 18, 2023

In reply to @mpowers501 "I just looked through the article referenced above: Reducing Exposure to Nontuberculous Mycobacteria (Reducing-Exposure-to-Nontuberculous-Mycobacteria.pdf). Debby Downer..." + (show)

Well! This "...Debby Downer could have brought me a lot more cheer today than seeing that article!!!! Why even get out of bed??? ..." gave me a good laugh today.

Let me see if I can put this in perspective for you. Dr Joe Falkinham has dedicated his career to studying NTM exposure, especially. Just like anyone else with a highly specialized subject, he sees NTM differently than you and me. He sees it a "It's everywhere, it's everywhere" and tries to figure out how to eliminate it as a risk. That's his life work.

His point of view makes sense in some environments - get it out of the water systems in hospitals, so you are not spreading it to high risk patients.

We see it as "Oh yeah, let's be conscious of it being everywhere" and try to be careful as we live our lives to the fullest. Like you, I take reasonable precautions and move on - but I am somewhat of a risk-taker. Other people are more risk-averse, and willing to spend a lot more time and effort on trying to stay safe.
Sue

hammerheadham | @hammerheadham | Apr 19, 2023

Ok, this is my take on this article. NTM does not live past your stomach acid if ingested. Breathing NTM into your lungs can be a problem for some but not others. I suggest you do your own research on that one and use common sense. No offence to the person who originally posted this, there is a lot you can takeaway from it.

irene5 Irene Estes | @irene5 | Apr 20, 2023

In reply to @hammerheadham "Ok, this is my take on this article. NTM does not live past your stomach acid..." + (show)

I agree with you @hammerheadham , but if a person has GERD and takes proton pump inhibitors the acid is inhibited which helps the GERD, but then bacteria etc. have a better chance of living and causing trouble. I don’t know what article you are referring to, but I happened upon your post and am just adding what I have gleaned from years with MAC and now invasive aspergillosis. Hope you are well. @irene5

hammerheadham | @hammerheadham | Apr 20, 2023

In reply to @irene5 "I agree with you @hammerheadham , but if a person has GERD and takes proton pump..." + (show)

Thanks Irene for your comment, it's always welcome. Have a blessed day.

ansley | @ansley | May 10, 2023

In reply to @sueinmn "I realize that both MAC and bronchiectasis seem daunting at first. With all cautions about mycobacteria..." + (show)

@sueinmn

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

Jump to this post

What kind of filter do you use for tap water?
Is it ok to drink bottled spring water after it has been opened for a day?

Sue, Volunteer Mentor | @sueinmn | May 10, 2023

In reply to @ansley "What kind of filter do you use for tap water? Is it ok to drink bottled..." + (show)

As to the filter, I don't know - my husband takes care of it. It has a prefilter and a .2 micron filter.

And I think the question about bottled spring water is a great one. I will begin by saying my "risk tolerance" may be higher or lower than yours.

If I open a bottle of water or another beverage, drink from it and recap it, I will drink from it the next day. If I open a bottle or can of water, drink from it and leave it open, I assume it gets contaminated from the atmosphere, and toss it.

What about anyone else?

Sue

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