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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.
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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