1. < MAC & Bronchiectasis
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Lung Matters Protocol

Posted by lvnl @lvnl, Jun 27, 2024

Hi, the info shared here has been so helpful as I'm now diagnosed with MAC after quite a few years of asymptomatic bronchiectasis. I see some back and forth about Lung Matters Protocol, could someone post the actual site (url)? Googling turns up several confusing results.
Thank you.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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kate2025 | @kate2025 | Jul 11 11:50am
In reply to @sueinmn "According to Dr Joe in a recent post on NTM-ir, soaking is not needed before sterilizing,..." + (show)
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According to Dr Joe in a recent post on NTM-ir, soaking is not needed before sterilizing, nor is washing/rinsing in sterile water. Just wash & rinse in regular water, drop into the sterilizer, it takes care of the rest. Even quicker!

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@sueinmn I soak and rinse in regular tap water then put in baby bottle sterilizer. I use distilled water in my baby bottle sterilizer to help with build up on the plate.

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scoop | @scoop | Jul 13 12:40pm
In reply to @melinda561 "Facebook." + (show)
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Facebook.

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@melinda561
Group looks defunct. Trying to reinvent itself with a pay model. For what, I haven't a clue, since reliable, evidence based information readily available.

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melinda561 | @melinda561 | Jul 13 4:02pm
In reply to @scoop "@melinda561 Group looks defunct. Trying to reinvent itself with a pay model. For what, I haven't..." + (show)
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@melinda561
Group looks defunct. Trying to reinvent itself with a pay model. For what, I haven't a clue, since reliable, evidence based information readily available.

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@scoop I was informed it would be available mid August I believe after vacation of the administration. I’ll have to wait and see. I do know there is a discussion of a fee but do not have those details yet.

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melinda561 | @melinda561 | Jul 13 4:07pm

At the time when I found them, I wasn’t aware of all I could do to help myself in controlling this disease. Through their protocols of which there are several, I’ve come along way. I follow all groups including this one as there is so much information and learning.

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cholash | @cholash | Jul 14 12:49pm
In reply to @scoop "It's great to find a sterilizer that can be used without the large middle tank. Grownsy..." + (show)
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It's great to find a sterilizer that can be used without the large middle tank. Grownsy also makes one that is fairly compact and can be used without the tank. I take it on trips, road and by air. It sterilizes for 8 minutes and uses 90mL of water. Makes traveling and sterilizing easier than boiling water. I soak my gear in Dawn and hot tap water before popping in sterilizer.

The Bololo I use at home for everyday use as it sterilizes around 13 minutes and uses 150mL. The Bololo is not configured to use without large tank.

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@scoop Hi Scoop. I see this is an older post , but are you still using the Grownsy ? I had ordered one of the baby bottle sterilizers months ago , but didn’t like the large size on my counter , and the amount of distilled water I would constantly be using . If you still like yours , would you mind sharing a link ? Thanks in advance !

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scoop | @scoop | Jul 14 5:08pm
In reply to @cholash "@scoop Hi Scoop. I see this is an older post , but are you still using..." + (show)
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@scoop Hi Scoop. I see this is an older post , but are you still using the Grownsy ? I had ordered one of the baby bottle sterilizers months ago , but didn’t like the large size on my counter , and the amount of distilled water I would constantly be using . If you still like yours , would you mind sharing a link ? Thanks in advance !

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@cholash
Still using for travel when practical. I remove the tank part and place my neb parts on the accessories basket. Works well. I use distilled water only. Not quite as well as the Bololo but very close. The Bololo dries every time. Sometimes if I don't shake the parts off enough they are not completely dry in Grownsy but it does not happen that often, but it has happened.
https://grownsy.com/products/baby-bottle-sterilizer-and-dryer

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cholash | @cholash | Jul 15 10:27am
In reply to @scoop "@cholash Still using for travel when practical. I remove the tank part and place my neb..." + (show)
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@cholash
Still using for travel when practical. I remove the tank part and place my neb parts on the accessories basket. Works well. I use distilled water only. Not quite as well as the Bololo but very close. The Bololo dries every time. Sometimes if I don't shake the parts off enough they are not completely dry in Grownsy but it does not happen that often, but it has happened.
https://grownsy.com/products/baby-bottle-sterilizer-and-dryer

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@scoop thank you very much

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tconz | @tconz | Jul 16 7:30am
In reply to @melinda561 "At the time when I found them, I wasn’t aware of all I could do to..." + (show)
Profile picture for melinda561 @melinda561

At the time when I found them, I wasn’t aware of all I could do to help myself in controlling this disease. Through their protocols of which there are several, I’ve come along way. I follow all groups including this one as there is so much information and learning.

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@melinda561 I followed them as well along with several other informative support groups. Charging a fee would be questionable to me since they are not medical professions and only people like ourselves sharing their experiences and trying to help others.

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