1. < MAC & Bronchiectasis
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National Jewish Health or Mayo Rochester to treat MAC

Posted by mtinderscott2626 @mtinderscott2626, Dec 29, 2025

I have had bronchiectasis since 2010. I was just diagnosed with MAC on 12/23/25. I want to go to the BEST doctor/facility for treatment. Which location is preferred? Mayo Rochester or National Jewish Health?

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lorrainewenn | @lorrainewenn | Jan 1 2:52pm
In reply to @mtinderscott2626 "@lorrainewenn, may I ask who you see at the Mayo Clinic? Do you go to Rochester?..." + (show)
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@lorrainewenn, may I ask who you see at the Mayo Clinic? Do you go to Rochester? Why haven't they used the big 3? What are you doing other than using the big 3?

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@mtinderscott2626
I do airway clearance twice a day with levalbuterol and 7% saline and exercise on the stair master / lift weights 6 days a week. I take supplements like NAC, plasmalogens and occasionally lignosis.

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smtdoc | @smtdoc | Jan 1 3:05pm
In reply to @blm1007blm1007 "@big52fish To add to what Sue indicated. The local pulmonologist I see in OKC sends the..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

@big52fish To add to what Sue indicated. The local pulmonologist I see in OKC sends the sputum for testing to NJH.
I also have the availability, at this time, to send sputum to Tyler, Texas. They do a sensitivity test and all the regular testing of the sputum for the types of MAC in between the regular testing. Sensitivity testing is done every so often. You have to be a patient at Tyler to be able to have your sputum tested there. That is what I was told during a visit to Tyler.
I agree with what has been indicated about the communication after one's visit at NJH, it can be disappointing. I think one has to be insistent in many cases.
Barbara

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@blm1007blm1007
Happy New Year.
I live in Dallas and had attempted to schedule a first appointment in Tyler but was not able to connect with anyone at the facility who was even aware of a program! So set up for Denver in 2 months but would prefer a couple of 90 minute drives to 10 days in Denver!

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Sue, Volunteer Mentor | @sueinmn | Jan 1 5:30pm
In reply to @lorrainewenn "@mtinderscott2626 I do airway clearance twice a day with levalbuterol and 7% saline and exercise on..." + (show)
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@mtinderscott2626
I do airway clearance twice a day with levalbuterol and 7% saline and exercise on the stair master / lift weights 6 days a week. I take supplements like NAC, plasmalogens and occasionally lignosis.

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@lorrainewenn Can you explain why you use plasmalogens, whether you have been diagnosed with a deficiency, and who recommended them to you? Do you have any studies that show the benefit?

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blm1007blm1007 | @blm1007blm1007 | Jan 1 7:55pm
In reply to @smtdoc "@blm1007blm1007 Happy New Year. I live in Dallas and had attempted to schedule a first appointment..." + (show)
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@blm1007blm1007
Happy New Year.
I live in Dallas and had attempted to schedule a first appointment in Tyler but was not able to connect with anyone at the facility who was even aware of a program! So set up for Denver in 2 months but would prefer a couple of 90 minute drives to 10 days in Denver!

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@smtdoc Actually you will be happy you have the appointment in Denver. I take it you know who your ambassador is, the contact person assigned to you? Did they send you the individual print outs of the type of tests they will possibly be scheduling you for? I asked for those ahead of time although you can request them on the day you arrive.
I would imagine you will be going in at a time there might be snow.
Also this is a good way to get in touch with Tyler Pulmonology at UT East Texas: Carolyn Peterson 903-877-2899 or@uthct.edu
Again, no matter what I am glad I went to Denver first due to all they do in such a short time period. It would have taken months and months, locally, for all they did in just a few days, meaning tests.
Barbara

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smtdoc | @smtdoc | Jan 2 2:35pm

Barbara- thanks for the Tyler info. I have received the very busy Denver schedule!

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sma2 | @sma2 | Jan 2 6:24pm
In reply to @mtinderscott2626 "@sma2 The Ethambutol caused the numbness in your feet AND permanent vision loss?" + (show)
Profile picture for mtinderscott2626 @mtinderscott2626

@sma2 The Ethambutol caused the numbness in your feet AND permanent vision loss?

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@mtinderscott2626
Yes. Ethambutol induced optic neuropathy (EON) and peripheral neuropathy. If my NTM care team had discontinued ethambutol when I reported numbness (peripheral neuropathy) my vision could have been saved.

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caren207 | @caren207 | Jan 4 12:04pm

I don’t know much about Mayo, but my pulmonologist referred me to NJH. I was there for 10 days in October and the care was amazing. They will provide you with an “ambassador” who arranges all your appointments and set you up with a number of specialists in all disciplines, including a dedicated infectious disease specialist. My experience could not have been more positive and the follow up with my specialists has been excellent.

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helen1000 | @helen1000 | Jan 5 10:04pm

I have very good experience with Dr. Timothy in Mayo and Dr. Kasperbauer in NJH. Both are great doctors.
Dr. Basawaraj in NYU is also very excellent! NJH offers the most comprehensive testing so the first choice should be NJH.

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sma2 | @sma2 | Jan 6 7:46am

I was treated for MAC t Mayo Rochester. Many people in my support group use Nat Jewish. If I could start over, I would go to National Jewish.

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sma2 | @sma2 | Jan 7 12:48pm
In reply to @caren207 "I don’t know much about Mayo, but my pulmonologist referred me to NJH. I was there..." + (show)
Profile picture for caren207 @caren207

I don’t know much about Mayo, but my pulmonologist referred me to NJH. I was there for 10 days in October and the care was amazing. They will provide you with an “ambassador” who arranges all your appointments and set you up with a number of specialists in all disciplines, including a dedicated infectious disease specialist. My experience could not have been more positive and the follow up with my specialists has been excellent.

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@caren207
Are ophthalmologists part of the NJH care team?

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