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Lung Matters Protocol

MAC & Bronchiectasis | Last Active: Sep 7 4:51pm | Replies (52)

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@sueinmn

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.

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Replies to "I agree that there is quite a bit of good information at Lung Matters, but is..."

Agreed one must always consider the information and how you can best use it to help you in your journey.

Agree!

You are so correct and I have read it first hand!

I love your common sense approach to this disease-very helpful.

yes, very one sided. If you mention anything that the leader doesn't like, it is erased. I see advantages in hearing different sides of issues (political, religious, medical). No one has the complete truth. You have helped me here to see that applies to medical. I am still boiling and clearing everyday after being very ill for 5 weeks with an exacerbation that brought me to my knees. I had to take steroids and antibiotics which many don't agree with but it did pull me out.