Link to providers that treat Bronchiectasis/MAC

BTW, I already found https://ntminfo.org/ but it didn't list anyone in Charlotte 🙁 I remember there was another site where I did find some providers in Charlotte. Thanks for the help.

There is a major bronchiectasis center at the University of North Carolina at Chapel Hill. Both Dr., Kenneth Olivier and Dr. Leigh Anne Daniels are experts in the field.

Thank you for that information! Charlotte is a 2 hour drive to Chapel Hill 🙁 I will probably need frequent visits because my current doctor wants me to start antibiotics as soon as I move. My recent CT scan showed that the MAC infection has progressed 🙁

Perhaps you could call the University of North Carolina bronchiectasis center and find out who they might suggest in the Charlotte area. There’s also the option of going there for a second opinion. Dr. Olivier recently came over from the NIH and is heading up that program. He is also participating in the two versus three antibiotic study. https://mac2v3study.org/

Oh wow, I had no idea about this study. It's a good idea to call UNC bronchiectasis center and find out if they have any recommendations in Charlotte. I definitely will read up some more on this study and see if I'm eligible. I'm dreading starting the antibiotics because of all the side effects, but I would rather kick this infection than let it progress. Thank you so much for this valuable information!!!

Always my pleasure. I should’ve mentioned that I have been on the patient advisory committee for the study for years. Currently they have about 400 participants and are looking for another 100 to complete the study.

There is alway a new support group in North Carolina. If you are interested, Trisha at NTM Info & Research can send you all the details, including the zoom link for the virtual meetings.
Patricia@ntminfo.org

Warm regards,
Linda

Thanks, Linda, I will email her.

I looked over the participant criteria, it looks like I could be eligible. I’ve never been on the antibiotics before. Can you tell me a little more about what is required to participate? Would I need to travel to Chapel Hill for tests, etc? Could tests be done in Charlotte?

Also, I probably won’t be moving until April. Is that too late to participate in the study since it ends in February 2025?

Currently, the study even allows participation at remote locations. This means you don’t necessarily have to go the test site. My suggestion is to reach out to researchers at MAC2v3.org. I think you’ll find they are doing everything to make it work for those who are interested in participating.

That’s great they have participation at remote locations. I will reach out to the researchers for more information. Thank you!

My pleasure! And thank you for thinking about participating in the study. The more research we have the better our treatments will be!!