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Do you need to sanitize your toothbrush every day?
MAC & Bronchiectasis | Last Active: Jun 5, 2025 | Replies (77)Comment receiving replies
Hello, and welcome to Mayo Connect and the MAC & Bronchiectasis Support Group. Most of us, when we first are diagnosed are overwhelmed with both the dire predictions about our disease and the amount of information out there on - often conflicting. Add to that the fact that many primary care practitioners, and even many pulmonologists are not familiar with it, so we may not feel we are getting a lot of good guidance.
Please note what you said in your earlier message about the guidebook in Lung Matters, "...It was not developed by doctors but by a patient..."
Please understand that even the experts, who have spent a lifetime studying these issues, do not have all the answers, and that recommendations are constantly changing based on world-wide published research and studies.
MAC/NTM/Bronchiectasis are different for EVERY individual, based on the severity of their condition, overall health and comorbidities. So not every recommendation should be applied globally.
Not every recommendation in this book is supported by medical or research evidence. For example, it is unnecessary to boil measuring cups used to measure things that will be sterilized.
Dr Joe Falkinham, the world-renowned expert in MAC/NTM in water does not support boiling filtered water that has gone through a .2 micron filter. He has another new recommendation, based on lab research, that states a 10% solution of Dawn dish detergent in hot water will adequately break down the biofilm on devices so it can be washed away. He recently stated on the NTM-ir discussion group that it is unnecessary to use sterile water for boiling devices - the boiling itself creates sterile water.
Dr Pamela McShane, Bronchiectasis & NTM expert at the University of Texas at Tyler supports a wide range of airway clearance techniques, depending on what works for each individual. She says there is no "one size fits all" answer. Here is her most recent Webinar:
I have been off antibiotics for 4.5 years, have worked with my pulmonologist to get my asthma under control (it was the trigger for my exacerbations), exercise, do daily airway clearance but only use 7% saline a few times a week, filter but do not boil my water, wash my equipment in Dawn daily but sterilize once a week, take showers, swim in outdoor pools and the ocean...
On this regimen, I have been exacerbation-free for 19 months, and have only had 3 exacerbations since 2019 - all managed by steroids and a short course of antibiotics. I also use a combination inhaler daily that includes a steroid. Both of these are anathema on Lung Matters, but for me life-altering!
What is my point? MAC & Bronchiectasis are different for everyone.
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
And what is my takeaway? Read the recommendations on Lung Matters, then compare them with what the latest research shows, adopt what works for you, but don't go crazy - AND GO LIVE YOUR LIFE.
Replies to "Hello, and welcome to Mayo Connect and the MAC & Bronchiectasis Support Group. Most of us,..."
Hope I do as well as you have done for 4.5 years. So far, as I have said, no signs of an exacerbation with finally being diagnosed in August of 2022.
I believe I remember you were at the pulmonologists office in July, if I read correctly, and go again in September. Hope all continues to be good for you.
Sue above you had not mentioned how well you mask when gardening, windy days etc. nor your routine with clothing and shoes after being outside in the garden. I take it that is still part of your routine. I try hard to remember to do that....the masking when going outside to the garden. I do have someone doing most of it, lucky me, to avoid causing me problems.
Barbara
You are all right.
But even putting doctors and experts on pedestals can be fraught. Dr. Falkinham said at the recent NTMir conference in Berkeley that once water is sterilized, you can keep it in a cupboard for a very long while. Honestly, I would never trust drinking water that I had sterilized and put in the cupboard for weeks. There’s no way I would drink that, regardless of him saying it’s ok.
And indeed we are all different. The fact that you have stayed infection-free is the result of your precautions, self-care, your own disease history, general health, your station in life, and some measure of good luck. It doesn’t mean that others could get by with your particular regimen, so right to say that each person must carve out their own regimen from the plethora of information out there.
Lung Matters is quite draconian in its adherence to very strict standards. The site makes clear that it is only the experience of the moderator as a patient and professional researcher, and that its commitment is to airway clearance, precautions of all kinds, especially around GERD, intensive exposure control, care when taking antibiotics such as getting tested for pathogens and susceptibility testing of those pathogens in order to get the right drugs for treatment. She also highlights the long- term effects of many antibiotics and other pharmaceuticals and that is valuable also.
I don’t think that being extremely conservative about protocols to avoid bacterial load means in any way that a person is not living a full life: I, for one, am a practicing attorney, can dance my heart away at a younger friend’s performance, am working on a book, take beautiful walks by the ocean, and have many deep relationships that I treasure and nurture every chance I get. One does not exclude the other, and if being way on the conservative side of care is part of the price I have to pay, given my history of TB contracted on a grand adventure at 19 through India, Afghanistan, Iran Turkey, etc then I am willing to pay it. I am far more concerned about the egregious negligence of so-called pulmonologists who know scarcely anything about this disease. Now THAT gets my attention in a big way.
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Exactly Sue!