Do you need to sanitize your toothbrush every day?

There is a standard set of guidelines and it is pretty near perfect. It was not developed by doctors but by a patient and is in use through the world. It is on Facebook in 7 chapters - never made into a pdf. You need to be on FB and search for: Lung Matters: Covid, Bronchiectasis, MAC, NTM, Nocardia, Pseudomonas & More.

Thank you so much for the tip! Always, always learn something new from members!

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.

Thank you. I have read about the UV sanitizers. Is there a particular one that you might recommend?

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.

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.

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.

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

I also have a garden assistant doing most of the digging, dividing and heavy lifting now. And every bed is auto-watered, either with the irrigation system or individual, timer-operated drip systems, so I am not getting aerosols from that. I must admit that I do not mask anymore - I water before I dig to minimize dust and spores in the air. I still wear gloves and garden shoes (which never enter the house.) And if I mow, I do mask as there is no way to avoid all the flying debris. Garden clothes go right to the laundry room each day, even though it can make a lot of laundry.
We are a "no shoes" household which really keeps outdoor pollution out - all are left in the garage or at the door, and the landing is frequently mopped & washed. Entry rugs are washed and dried at least every week.

Lucky us, irrigation system and helper doing all the same tasks for us.
There are still a couple of things I would like to get in the habit of doing. Learning how to manage getting everything done for oneself and care along with all other tasks can be overwhelming and take time. So I tell myself....need to somewhat be patient with oneself.
Barbara