referal to a MAC centerr
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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@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.
My first choice at this time is NJH and Mayo Rochester. Can anyone comment on Johns Hopkins Bayview Center? Where do you think Johns Hopkins ranks after NJH and Mayo?
I'm original poster. I do some airway clearance (saline nebulizer daily) and have CT scans at least yearly and sputum cultures a bit more often. I started the process for NJH, but now waiting on appeal that was submitted to my insurance plan as NJH considered "out of network" Hopefully will hear something soon. I tolerate the antibiotics fairly well. Diarrhea every 3rd day is biggest downside with accompanying fatigue and yes I take probiotics and Yogurt daily.
The Bronchiectasis and NTM Association website has a tab to find care. The care center network is expanding and includes major hospitals such as National Jewish, Mayo and many more. The website also has info about NTM.
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