← Return to Lung Matters Protocol

Discussion

Lung Matters Protocol

MAC & Bronchiectasis | Last Active: 6 hours ago | Replies (80)

Comment receiving replies
@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


Replies to "The leader is indeed insane and a bully. But there's also good information there. I take..."

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.