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Do you need to sanitize your toothbrush every day?
MAC & Bronchiectasis | Last Active: Aug 16 7:24am | Replies (41)Comment receiving replies
It includes sterilizing water (even filtered water) daily, brushing teeth with sterile water, boiling your measuring cups, using glass and not plastic, saline rinses with disposable syringes instead of neti pot, ACTs, sterile water for wounds.... Takes days to read it all. Take a little at a time.
Replies to "It includes sterilizing water (even filtered water) daily, brushing teeth with sterile water, boiling your measuring..."
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.
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Thank you. I already do much of that and am sure that I need to do more. Sounds a little overwhelming, but then this whole experience is quite a ride!