Do you need to sanitize your toothbrush every day?

Do toothbrushes withstand the heat from boiling or from bottle sterilizers?

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:

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.

Oral microbiota is a hot research topic and within the next five years we will hopefully have a better understanding of the role these bacteria play in the lung microbiome. Although it is hard to believe, we have over 700 different types of bacteria in our mouths! Some are good, some not so good and some we aren’t sure of.

For those of us who have dealt with NTM infections like MAC, the good news is NTM are generally not found in the oral cavity. However, when we cough and secretions enter our mouth, they could end up on our toothbrush.

I rotate through a half dozen toothbrushes and on a daily basis I dab my brush with dish soap and scrub it. I have a Bril UV device I found on Amazon and pop my toothbrush into it after each use, then let it air dry. It’s great for traveling. When I’m home, I put my toothbrushes in my Bololo baby bottle sterilizer with my airway clearance devices.

As Sue suggested, I do not put my toothbrush in the family cup. Furthermore, I put it in a cabinet away from the toilet. Research shows pseudomonas that was cultured from the toilet was also found on nearby toothbrushes!!

I like this approach to toothbrush care because it’s easy to maintain. And, as others have said, we take precautions with our airway clearance devices and it makes sense to take similar precautions with our toothbrushes.

Warm regards,
Linda Esposito

I did try to post what happened and she deleted and then I deleted all my previous comments and left the group.

I just joined group about three months ago and I have not seen her tell people not to take antibiotics. She warns about getting sputum test to identify pathogen and to then do susceptibility testing before taking antibiotics. Is this not reasonable? She may have changed since you were there and I am so sorry people have gotten hurt by following something she said.

I am part of several groups and have gotten a lot of value from Lung Matters though I test all recommendations through my own experience of my disease profile and use only what actually works in my case. No one should follow anyone blindly. Lung Matters has done a lot of hard work to help others and that is commendable. Take what makes sense and test it against your own experience and what you see and hear on reputable forums like this, NTMir and Bronch350.

Yes, Lung Matters has a number of good tips about dealing with bronchiectasis. They are a proponent of airway clearance, which is the cornerstone of bronchiectasis treatment. In that way, they've done a tremendous service to the suffers of this disease. Leaving a sputum before abx treatment is also sound advice.

The rest of the "protocol" might be good in theory. You know what is said about theory: "In theory, there is no difference between theory and practice. In practice, there is." There's an authoritarian air to the advice. If you don't follow these exactly you are doomed type of attitude. Things are not black and white but lungs matters would want you to believe and behave otherwise. If your post is the least bit controversial or contrary to their teachings it will be deleted and sometimes the user banned. A hostile environment is not what a bronchiectasis sufferer needs.

Lung matters...."when you use the guidelines over the doctors advice, you can find yourself very ill. In my case, I did what she said and told the doctor no, and I quickly ended up in the hospital with pneumonia and then sepsis for following her specific advice."

I hope you pm'd her to tell her what happened to you. I imagine if you posted that, she'd delete it as she did a couple of mine.
I had to stop reading the posts a couple years ago after she recommended a woman who was acutely ill with fevers and productive cough not take antibiotics as her doc suggested. It seemed very risky advice. We can't nebulize our way out of everything.