Best medical center for MAC & BE

Posted by ncalvan @ncalvan, Jul 1 9:06am

I live in Knoxville and have been treated for MAC since 2019. Three years on the big 3 and 2 years with added Arikayce. I’d like to go to a major medical center with an NTM and BE clinic that has a solid multidisciplinary team. I’m deciding about Mayo or Cleveland Clinic. Anyone had experiences about either for a full work up? Any physician names would be very helpful. And what about Mayo Jacksonville? Or Rochester. Florida is closer for me if that’s a best choice. Thanks for any guidance and experiences.

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scoop | @scoop | Jul 5 7:51am

Seconding UT Texas at Tyler, Texas (Dr. Pamela McShane). I listened to her webinar on airway clearance and if I were in Texas I'd go there. She gets the whole picture.

deeannd | @deeannd | Jul 5 8:48am

@ncalvan
UAB in Birmingham, AL has a dedicated NTM clinic which would be in driving distance for you. It is run by Dr. Bryan Garcia. He also has an ID doctor consulting and a dedicated team of respiratory therapists and nurse practitioners. I have been seeing the team at UAB over 2 years and I am pleased with the care provided by them. Upon my diagnosis over 2 years ago, I went out to NJH for a full evaluation and then returned again for a follow up. While I am glad I went out there for a second opinion, I don’t really feel that I need to return. The follow up care and communication with UAB was nil. I didn’t get the feeling that they were willing to manage my disease long distance. I feel confident that I am receiving comprehensive care through UAB. If you would like more info, please feel free to contact me directly.
I believe there are also some NTM docs at Vanderbilt in Nashville which may be even closer for you.

ncalvan | @ncalvan | Jul 5 9:26am

Thanks much for your info!

ncalvan | @ncalvan | Jul 5 9:29am

In reply to @lorrainewenn "I’m at Mayo Clinic in Rochester Minnesota and it is excellent." + (show)

Thanks much

sweethighland | @sweethighland | Jul 5 3:06pm

In reply to @blm1007blm1007 "FYI: National Jewish is now associated with Mount Sinai Hospital in NYC. "National Jewish is a..." + (show)

Dr. Colin Swenson at Emory and Dr. Ali at Northside Hospital in Atlanta.

lvnl | @lvnl | Jul 6 7:35am

I second @minute22, I am also at the NYU bronchiectasis/MAC team & I see Dr Addrizzo-Harris & the team. they are excellent, up on everything.

katmckay | @katmckay | Jul 7 7:58am

In reply to @deeannd "@ncalvan UAB in Birmingham, AL has a dedicated NTM clinic which would be in driving distance..." + (show)

I see Dr James Tolle (pulmonologist) and Dr Christina Fiske (ID) at Vanderbilt in Nashville. I switched to them after initially working with another pulmonologist who didn’t have a lot of relevant experience. So far, they have been great, very responsive and careful in tailoring treatment for me given my other health conditions.

ncalvan | @ncalvan | Jul 7 10:05am

Thanks very much

tamcovie | @tamcovie | Jul 8 9:41am

I live in San Diego. Does anyone have recommendations for a good clinic or Doctor on the west coast.
I am looking into if my insurance will pay for Mayo Clinic in Arizona. But also would like someone closer since I do work full time.
I did see up in LA a clinic for bronchetasis and MAC at Cedar Sinai. Does anyone have any experience with this clinic?