Lung Matters Protocol

Posted by lvnl @lvnl, Jun 27 7:02pm

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.

@sueinmn

When I wash my pieces, if I am going to boil them immediately, I don't worry about covering them with solution. In fact, I often put them in a small storage container and shake them vigorously. I use original Dawn, purchased in giant bottles at WalMart or sometimes Costco, because that is what Dr Joe and his team tested. I doubt any color or scent survive 10 minutes of boiling. I am old-school, using a saucepan and timer as my kitchen has no room for more "stuff" and they are available no matter where I go - home, tiny winter home or camper.

I would think that if the Arikayce mouthpiece can survive 5 minutes of boiling, it should handle 10 minutes, but you might want to ask them as I have no experience with their equipment. I do understand the distilled water - I use it or filtered water to eliminate residue on my equipment - I'm always putting multiple gallons in my cart. That way I find no need for periodic vinegar soaks some mention.

My philosophy is to do what is the easiest and still safe, so my routine is very minimalist, but I haven't had an infection needing long-term treatment in nearly 5 years, nor exacerbation in almost 2 years.

Everyone is different in their condition and risk tolerance/outlook on life.

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Thank you, Sue. I will contact the trainer to ask about the 10 minutes for the Arikayce nebulizing head. I never thought about placing the Pai and Aerobika into a closed container and then shaking to agitate. So simple and definitely reduces the amount of water needed.

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@formergardener

Thank you, Sue. I will contact the trainer to ask about the 10 minutes for the Arikayce nebulizing head. I never thought about placing the Pai and Aerobika into a closed container and then shaking to agitate. So simple and definitely reduces the amount of water needed.

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I am part-time in a camper with limited water & storage, so always looking for ways to minimize water use.

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@fdixon63

Sue, Dr. Joe's accepted method of sterilizing seems to too good to be true. Our fellow nebulizers seem to be trained and or guided through so many steps to squish every bug (bacteria) into oblivion. Now we're told, just wash and rinse it off and stick it in a sterilizer. Those "old" habits might be hard to break but I'm willing to try. Any others planning on stepping away from their gold standard methods of sterilizing? Would love to hear.

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I’m in the wash in water that’s just boiled, rinse in boiling water, and then sterilize camp. (I had my water heater increased to 140 so it shouldn’t be a source.) I am even less diligent than most and use the sterilizer bags 2x/day most days, but wash with Dawn and boil the equipment 10” 2x/week. I don’t have MAC. I keep changing my cleaning and am likely to change again.
I don’t recommend this for others, but for my current situation with no infection, it seems a reasonable trade off considering risk and time.

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@formergardener

@lilianna, thank you for your clarification. I have been rinsing under very hot water, soaking in dawn and hot water, and then rinsing that in a bowl of distilled water because our water is so hard. All this before boiling for 10 minutes in spring water, again because of the water hardness. I use a lot of water, and it adds up. Also many paper towels!!!
Is your two part sterilizer the Philips Avent? Do you like it, and is it reliable? Do you find that it dries well, or do you have to put it through 2 drying cycles? I also found that my Vortex holding chamber for my Levalbuterol canister can be placed in a steam sterilizer (electric, not microwave, since it has metal). I had been soaking it in Dawn and then placing it in alcohol for a time and rinsing it. Just trying to finally streamline everything to where it is effective but also practical and not cost-prohibitive. Thank you again so much.

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I use SeJoy sterilizer and dryier. I tried literally three before I decided on this one. It is the right for me because the upper part separates from the bottom tall part. That way I can use only the upper part for my nebulizing pieces plus a nebulizer mask. It is also not expensive, it was $53 on sale through Walmart. Most of the baby bottle sterilizers/dryiers have more functions which I do not need. This one is simple. Honestly I really like it.

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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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@sueinmn

When I wash my pieces, if I am going to boil them immediately, I don't worry about covering them with solution. In fact, I often put them in a small storage container and shake them vigorously. I use original Dawn, purchased in giant bottles at WalMart or sometimes Costco, because that is what Dr Joe and his team tested. I doubt any color or scent survive 10 minutes of boiling. I am old-school, using a saucepan and timer as my kitchen has no room for more "stuff" and they are available no matter where I go - home, tiny winter home or camper.

I would think that if the Arikayce mouthpiece can survive 5 minutes of boiling, it should handle 10 minutes, but you might want to ask them as I have no experience with their equipment. I do understand the distilled water - I use it or filtered water to eliminate residue on my equipment - I'm always putting multiple gallons in my cart. That way I find no need for periodic vinegar soaks some mention.

My philosophy is to do what is the easiest and still safe, so my routine is very minimalist, but I haven't had an infection needing long-term treatment in nearly 5 years, nor exacerbation in almost 2 years.

Everyone is different in their condition and risk tolerance/outlook on life.

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@sueinmn Just to clarify, do you use the baby bottle sterilizer daily, or once a week? I am using an aerobika and Pari nebulizer with saline. I rinse in soapy hot water after each use, but boil for 10 minutes weekly. I have a Wabi steam sanitizer and dryer, but have never used it…

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@becleartoday

This article was cited by Dr. Jennifer Honda who used to have a research lab at National Jewish Health and is now at UT Tyler. She mentioned this research during a patient conference. Please note that in addition to gram positive and negative bacteria, mycobacteria was tested. The sterilizer killed all 80 pathogens. Like Sue, I’m a strong believer in listening to Dr. Falkinham. However, I do choose to soak my devices in warm soapy water that I repeatedly agitate. I like knowing that before I pop everything into my baby bottle sterilizer most of the bacteria and medication have been removed. It might not be necessary, but it makes me feel more secure. Like double knotting my sneakers 🙂
https://pubmed.ncbi.nlm.nih.gov/32729958/
Enjoy the day,
Linda Esposito

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I followed the link and it looks like it was not tested for MAC. Is that correct?

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Six different types of non-tuberculosis mycobacteria (MAC is in that category) were tested.

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@rmason

@sueinmn Just to clarify, do you use the baby bottle sterilizer daily, or once a week? I am using an aerobika and Pari nebulizer with saline. I rinse in soapy hot water after each use, but boil for 10 minutes weekly. I have a Wabi steam sanitizer and dryer, but have never used it…

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I am like you, wash thoroughly after use, boil weekly. I have never used a sterilizer because I have no space for it.

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@sueinmn

I am like you, wash thoroughly after use, boil weekly. I have never used a sterilizer because I have no space for it.

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@sueinmn Thanks- I guess then if I decide to use the sterilizer it would just replace the weekly boiling- it may be harmful to devices to expose to that high heat daily.

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