Lung Matters Protocol

Helen, that is one example of what @scoop is talking about - no room for disagreement. Please know that they are in a decided minority - most doctors and clinics that treat MAC say that baby bottle sterilizers work.

Its on facebook-link below. You have to request to join, do the educational requirements and agree to the rules and if you qualify they will approve you. The educations requirements is worth your time investment. You will learn a lot.
https://www.facebook.com/groups/786232145610757/

I agree that there is quite a bit of good information at Lung Matters, but is needs to be approached as "just another point of view" and not as the only way to manage MAC & Bronchiectasis.

The leader of the group is not a medical person, but another patient like ourselves, and a lot of what is described as the "Lung Matters Protocol" is based on her personal experience and may not be research-based. The group has a culture that there is only one way to do things - their way - the medical and research experts in the field and in clinical care do not agree with that. The protocol seems to resist antibiotic therapy in almost all cases, which can be detrimental for some people and some infections.

My recommendation - if you join the group, compare the information there with what you learn from your providers, from Connect & other research-based sites. Then develop your own health management plan.

Finally, remember not to let this condition take over your life. While you will have periods of exacerbation or illness, you can also enjoy periods of relative good health. Don't give up everything to spend hours every day boiling, cleaning, sterilizing, nebbing and doing airway clearance.

Find your routine, then streamline it and fit the routine into your life, not the other way around.

I agree that there is quite a bit of good information at Lung Matters, but is needs to be approached as "just another point of view" and not as the only way to manage MAC & Bronchiectasis.

The leader of the group is not a medical person, but another patient like ourselves, and a lot of what is described as the "Lung Matters Protocol" is based on her personal experience and may not be research-based. The group has a culture that there is only one way to do things - their way - the medical and research experts in the field and in clinical care do not agree with that. The protocol seems to resist antibiotic therapy in almost all cases, which can be detrimental for some people and some infections.

My recommendation - if you join the group, compare the information there with what you learn from your providers, from Connect & other research-based sites. Then develop your own health management plan.

Finally, remember not to let this condition take over your life. While you will have periods of exacerbation or illness, you can also enjoy periods of relative good health. Don't give up everything to spend hours every day boiling, cleaning, sterilizing, nebbing and doing airway clearance.

Find your routine, then streamline it and fit the routine into your life, not the other way around.

Hi. I do know as a RN, Board certified lactation consultant that if use the baby bottle sterilziers. Be sure to check for and clean mold. Some can apparently be bad and we dont want that exposure

I agree that there is quite a bit of good information at Lung Matters, but is needs to be approached as "just another point of view" and not as the only way to manage MAC & Bronchiectasis.

The leader of the group is not a medical person, but another patient like ourselves, and a lot of what is described as the "Lung Matters Protocol" is based on her personal experience and may not be research-based. The group has a culture that there is only one way to do things - their way - the medical and research experts in the field and in clinical care do not agree with that. The protocol seems to resist antibiotic therapy in almost all cases, which can be detrimental for some people and some infections.

My recommendation - if you join the group, compare the information there with what you learn from your providers, from Connect & other research-based sites. Then develop your own health management plan.

Finally, remember not to let this condition take over your life. While you will have periods of exacerbation or illness, you can also enjoy periods of relative good health. Don't give up everything to spend hours every day boiling, cleaning, sterilizing, nebbing and doing airway clearance.

Find your routine, then streamline it and fit the routine into your life, not the other way around.

VGVball
Where does mold live in baby bottle sterilizers? I use it twice a day and clean the inside with alcohol or vinegar (wipe) and since it sterilizes I thought it sterilizes itself too. Thank you

I agree that there is quite a bit of good information at Lung Matters, but is needs to be approached as "just another point of view" and not as the only way to manage MAC & Bronchiectasis.

The leader of the group is not a medical person, but another patient like ourselves, and a lot of what is described as the "Lung Matters Protocol" is based on her personal experience and may not be research-based. The group has a culture that there is only one way to do things - their way - the medical and research experts in the field and in clinical care do not agree with that. The protocol seems to resist antibiotic therapy in almost all cases, which can be detrimental for some people and some infections.

My recommendation - if you join the group, compare the information there with what you learn from your providers, from Connect & other research-based sites. Then develop your own health management plan.

Finally, remember not to let this condition take over your life. While you will have periods of exacerbation or illness, you can also enjoy periods of relative good health. Don't give up everything to spend hours every day boiling, cleaning, sterilizing, nebbing and doing airway clearance.

Find your routine, then streamline it and fit the routine into your life, not the other way around.

I agree that there is quite a bit of good information at Lung Matters, but is needs to be approached as "just another point of view" and not as the only way to manage MAC & Bronchiectasis.

The leader of the group is not a medical person, but another patient like ourselves, and a lot of what is described as the "Lung Matters Protocol" is based on her personal experience and may not be research-based. The group has a culture that there is only one way to do things - their way - the medical and research experts in the field and in clinical care do not agree with that. The protocol seems to resist antibiotic therapy in almost all cases, which can be detrimental for some people and some infections.

My recommendation - if you join the group, compare the information there with what you learn from your providers, from Connect & other research-based sites. Then develop your own health management plan.

Finally, remember not to let this condition take over your life. While you will have periods of exacerbation or illness, you can also enjoy periods of relative good health. Don't give up everything to spend hours every day boiling, cleaning, sterilizing, nebbing and doing airway clearance.

Find your routine, then streamline it and fit the routine into your life, not the other way around.