Lung Matters Protocol

Dr. Falkinham has endorsed the use of steam baby bottle sterilizers and provided supporting research, including studies conducted by the head of the Yale New Haven Hospital laboratory. These studies confirm that steam sterilizers are effective in killing bacteria, including mycobacteria. To my knowledge, there has been no change in his stance on this matter.

I tried to open the NTMinfo link but you need a log in. How do you get access to it

As far as regular nebulizer equipment, cups, etc., for regular COPD, I thought that washing in soap and water after each use and once a week in vinegar was all that’s needed. I’m afraid I’m wrong and wonder if anyone can clarify this?

As far as regular nebulizer equipment, cups, etc., for regular COPD, I thought that washing in soap and water after each use and once a week in vinegar was all that’s needed. I’m afraid I’m wrong and wonder if anyone can clarify this?

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

The leader is indeed insane and a bully. But there's also good information there. I take it with a huge grain of salt (or vial of hypertonic saline).
She repeatedly urges me to go off my Crohn's disease medication, because it's a biologic (monoclonal antibody) and immunosuppressant. That is insane and really dangerous, as well as hubristic and cruel.

One of the most confusing aspects of Bronchiectasis and NTM (and many other rare and highly variable conditions) is the dizzying array of advice available from sources ranging from expert to individual opinions.

Mayo Connect does not endorse any of these sites per se, but often refers to the "leaders" in the field. These include acknowledged experts in the field like National Jewish Health, Mayo Clinic, Dr Joe Falkinham, Dr Pamela McShane, Dr T. Aksamit and others, as well as research and support organizations like The American Lung Association, NTM Info and Research (https://ntminfo.org/), and Bronchiectasis and NTM Association (https://www.bronchiectasisandntminitiative.org/) There are others, you will find them as read many of the helpful discussions here.

We also strive to provide research-based information, including citing the underlying source material so members may dig as deeply as they wish.

We also avoid quoting AI-generated "advice" because it lacks the citations that allow us to read studies and reports ourselves, to determine the source and how rigorous the research is.

Here is a Connect discussion I frequently cite for new members looking for information on a variety of related topics:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
I hope you enjoy meeting the group members and discussing your questions. Be prepared to be wowed by the amount of knowledge and experience they have to share.