Lung Matters Protocol

Yes, tubing is not something you can clean or sterilize. If there is moisture left in it after you neb, run the compressor for a few minutes to dry it out. Replace the tubing every 2-6 months, depending on what the pulmonologist recommends - your neb cups need to be replaced too, and they come with new tubing.

This is for lvnl, who asked about the Lung Matters Protocol website. It is actually a facebook group called Lung Matters: Covid, Bronchiectasis, MAC, NTM, etc. Quite a title! You need to be on facebook to apply (it is a closed group which is good, eliminating the stupid comments that open groups get.) "https://www.facebook.com/groups/786232145610757/?hoisted_section_header_type=recently_seen&multi_permalinks=1558230095077621&__cft__%5B0%5D=AZVL6dfKeUipNincpuHAFS9ZxXhO9Osu5Ce1uQ1zWxIkM7mTlR6TnfAnaNEz_QO6B4K2B9DcO8fHIzLGOweTlcxI-uo2_1tT09-HzzcfVZaQ9lo2kB9P6gTxPdyxzverAUsRMdfv8gOGwxdDQheDYLJkPZ58o3TWtUk5sFW7_NQI8hhPCeijfWqFdgsqbNrS8Yc-3k5tm6qyXG9QYG7OWFCi&__tn__=-UC%2CP-R
This URL should get you there. It is extremely informative and interesting. The attitude is rather stringent, but you learn SO much. I recommend it.

You kidding me it’s been reported for unscientific information and censorship
You can’t mention the word bronscoscopy or antibiotics you will be punished
People complain they are intimidated by the group

She does have great information about airway clearance but you can get that on a good reputable website about bronchiectasis

She banned me for a month because someone posted a question about what are your exacerbations like
I said I get swollen glands and low grade fever

Next morning I was banned
True story I have the screenshot

I’m a doctorate in Nursing
I practice medicine
I showed many doctors her unscientific based medical advice about proton pump inhibitors. So people with erosions in stomach and esophagus should not take them ?

Seriously that’s some bad advice. PPI’s are definitely for short term use . Who is she to say no to using them at all

She has no medical background at all .
Yes Gerd is a big problem with bronchectasis but some people have ulcers and have had withdrawal acid reflux from her telling people to stop PPI’s

Dangerous she’s not a medical professional and I will make sure some of her information gets taken down

As a medical professional who has had lung cancer and now has bronchectasis

I wasn’t allowed to say I needed Bronchoscopes to check on radiation outcomes on my airway tumor that’s discrimination against a group a lung cancer patient

Disgrace!!!
Censored and discriminated

You kidding me it’s been reported for unscientific information and censorship
You can’t mention the word bronscoscopy or antibiotics you will be punished
People complain they are intimidated by the group

She does have great information about airway clearance but you can get that on a good reputable website about bronchiectasis

She banned me for a month because someone posted a question about what are your exacerbations like
I said I get swollen glands and low grade fever

Next morning I was banned
True story I have the screenshot

I’m a doctorate in Nursing
I practice medicine
I showed many doctors her unscientific based medical advice about proton pump inhibitors. So people with erosions in stomach and esophagus should not take them ?

Seriously that’s some bad advice. PPI’s are definitely for short term use . Who is she to say no to using them at all

She has no medical background at all .
Yes Gerd is a big problem with bronchectasis but some people have ulcers and have had withdrawal acid reflux from her telling people to stop PPI’s

Dangerous she’s not a medical professional and I will make sure some of her information gets taken down

As a medical professional who has had lung cancer and now has bronchectasis

I wasn’t allowed to say I needed Bronchoscopes to check on radiation outcomes on my airway tumor that’s discrimination against a group a lung cancer patient

Disgrace!!!
Censored and discriminated

Mayo Connect does not promote or endorse Lung Matters or their protocols. But as a support group by and for the heterogeneous MAC and Bronchiectasis community, we permit posts by our members even when the majority may not agree as long as they do not violate community guidelines.

If you read threads on LM, you will see that almost every one contains a caution that this is only one point of view.

I too was banned from the group. I'm not even sure for which offense- I'm sure I had several because I said antibiotics are sometimes necessary, tried to post a link contrary to her beliefs and referred to Mayo Connect.

Please check us out and you'll see that we are a great support group.

Thanks! Do you know why the Lung Matters Protocol doesn't advise the baby bottle sterilizer method for sterilization? Has anyone informed them that Dr. Falkinham has tested and found that they kill MAC?

Mayo Connect does not promote or endorse Lung Matters or their protocols. But as a support group by and for the heterogeneous MAC and Bronchiectasis community, we permit posts by our members even when the majority may not agree as long as they do not violate community guidelines.

If you read threads on LM, you will see that almost every one contains a caution that this is only one point of view.

I too was banned from the group. I'm not even sure for which offense- I'm sure I had several because I said antibiotics are sometimes necessary, tried to post a link contrary to her beliefs and referred to Mayo Connect.

Please check us out and you'll see that we are a great support group.