referal to a MAC centerr

Posted by ranxi @ranxi, Jul 10 4:13pm

I have been treated for mild for of MAC for 3 years with antibiotic regimen plus Arikayce. I have good pulmonologist and ID doc from local academic medical center. However, I am considering asking for a referral for 3rd opinion from one of the major centers for MAC.
Johns Hopkins, Mayo, Cleavland Clinic or National Jewish.
Any recommendations?

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Sue, Volunteer Mentor | @sueinmn | Jul 24 8:59am

@ranxi All of those you mentioned are excellent clinics with MAC/Bronchiectasis specialty departments. In addition, the U of Texas, Tyler has an excellent program. Three years is a long time to stay on the antibiotics - are you using other techniques like airway clearance to help get the infection out of your lungs? How often are you having sputum cultures and CT scans to monitor your progress?
If you want a complete workup, NJH or Mayo would probably be a good choice.
For me, it would depend on who is closest and accepts my insurance, as well as how soon I could get an appointment.