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.

@becleartoday

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.

Jump to this post

Linda, the Bololo baby bottle sterilizer seems to be the used by a lot of people. This item is no longer being sold on Amazon or on the Bololo website. Is there a good 2nd option?

REPLY

I have a client who just purchased it directly through Bololo. I believe it comes from China and she hasn’t received it yet but fingers crossed. I like the Bololo the best because the sterilizing cycle is 15 minutes, which is longer than other steam sterilizers.

REPLY
@lilianna

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

Jump to this post

lilianna, you need to register an account in NTMir

REPLY

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?

REPLY
@uma1

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?

Jump to this post

I understood that washing the nebulizer cups in dawn dishwashing liquid was better than liquid soap. Also, to soak them in vinegar every 3 days…
That’s what I’ve been doing for many years. The cups I use did lose their shape in the bobolo baby bottle sterilizer. I guess it depends on which nebulizer cups one uses. I assume anything that has instructions that it can be boiled can be used in the Bololo.

REPLY
@uma1

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?

Jump to this post

I have a new system and it says 30 min in 3.1 water & vinegar after use use

REPLY

You will find the Lung Matters group on Facebook.

REPLY
@linny1031

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

Jump to this post

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.

REPLY
@bronchiectasaurus

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.

Jump to this post

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.

REPLY
@sueinmn

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.

Jump to this post

Sue-
As you have possibly mentioned in the past another one to add to your great list of acknowledged experts is Dr. Elizabeth Ann O'Donnell of Washington D.C. She gave that great Webinar this past week.
Barbara

REPLY
Please sign in or register to post a reply.