National Jewish Health or Mayo Rochester to treat MAC

@mtinderscott2626
I do not have experience with MAC, but I am familiar with Mayo. You may want to contact both places and start the process. Your decision may be influenced by when you can get an appointment. At Mayo, appointments are based on your medical condition, urgency, and availability.

You can contact Mayo Clinic to request an appointment or ask your doctor to submit a physician referral. For information on how to start the process at Mayo Clinic, see http://mayocl.in/1mtmR63. If you do it online, you will receive a call to schedule a time to talk with an appointment coordinator. You or your doctor will be given instructions on how to submit relevant medical records, test results, imaging studies, etc.
Mayo Clinic doctors carefully review records you, the patient, or the referring physician sends to tailor each patient's visit to the appropriate provider and determine if any additional testing is required.

@mtinderscott2626 The very best facility is a matter of circumstances. Both Mayo and NJH offer great programs, as do some other specialty centers around the country. The main issues are length of time to be seen, whether they accept your insurance, and your ability to arrange for adequate followup care with local providers who will accept the protocols and treatments provided to you.
That said, NJH has the reputation for thoroughness, but many patients describe followup communication with the staff there as less than ideal. Mayo Clinic is the best place if you have other comorbidities because they offer care for a wide variety of complex medical conditions, and at many times, teamwork between departments. If you are fortunate enough to be near other centers of excellence like NYU Langone or UT Tyler, you may be able to arrange ongoing care there directly without incurring a lot of travel and lodging expenses.
For myself, only 90 miles from Mayo, my clinic network has an excellent pulmonologist who has worked with Mayo staff and a number of reknowned MAC & Bronchiectasis experts. I have not needed to seek care there. If for some reason she and her partner leave, I would definitely find my way to Mayo Clinic for my care.

From everything I have read over the years, I would choose NJH. But I do not have experience with either Mayo or NJH. I find it ironic that NJH is at such a high altitude however! You have to have relatively decent lungs to tolerate that without supplemental oxygen!

I’m being seen at Mayo Rochester however I am in need of a local pulmonologist to help me with flareups. I live ia the northern Chicago area near the Wisconsin boarder but will travel to get the care and need. I am fighting a cold/cough and my Mayo doctor is pushing me back to my local PCP. Is there a directory for MAC/bronchiectasis I can check? Or any recommendations are appreciated.

Here is a link to the list of care centers -
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
You can also check here for new additions:
http://www.bronchandntm.org/

I was treated for MAC AT Mayo in late 23 and early 24.I think they now know numbness n feet is a serious ethambutol side effect can precede vision loss because of me. Based on what I’ve heard from my support group and hearing Dr Daly speak, I wish I had gone to Nat Jewish.

I’m fortunate to live close to Mayo, and have been very happy with my doctors and care. Like @sueinmn said, they will treat any other conditions you have by referring you to other specialists there.
My pulmonologist and infectious disease doctors always get back to me right away if I contact them when a problem arises.

I go to NJH. I live in Florida and go to Denver about once a year. I love my Dr and love the care when I’m there but the communication between appts is not so great. The lab there is very good. Are there other comparable labs that do the thorough sensitivity screening that NJH does?

@big52fish Many of the Bronchiectasis centers, and other clinics, use the NJH lab to do the sensitivity screening. My clinical system in Minnesota sends sputum cultures there when NTM is detected. Just ask your doctor whether that is their protocol.

@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