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Some thoughts after 10 months of nebbing saline
MAC & Bronchiectasis | Last Active: Mar 31 1:00pm | Replies (42)Comment receiving replies
I was diagnosed with MAC disease which caused my Bronchiectasis. I searched desperately in Tucson AZ for a doctor to treat my infection but they all turned me away. It seemed they did not want to have anything to do with MAC. I felt abandoned by the medical community until I made contact with the Mayo Clinic where I was accepted for treatment. I am going through a set of antibiotics and I hope one of them will kill that bacteria. Was researching how prevalent MAC is in the United States and I found MAC is very much prevalent around the United States including Hawaii. No MAC has been found in States like Montana and Alaska. I wonder, if it is so prevalent why they don't do anything about it. The bacteria is in the soil, dust including house dust, and water. Very prevalent in public pools and spas. A compromised immune system makes easy for MAC to attack. So much education is provided and research about all the infectious diseases except nothing about MAC.
Replies to "I was diagnosed with MAC disease which caused my Bronchiectasis. I searched desperately in Tucson AZ..."
@heidemarie1
I am sorry to learn you were not able to find a pulmonologist here in Tucson who would take you as a patient. Pulmonologists are scarce here. Mine with whom I started back in the early 2000’s retired. He and his partners literally had thousands of patients, he told me. I was lucky to connect with one of his partners. I am glad you were able to find a doc at Mayo. Many PCP’s are unfamiliar with NTM/MAC and so do not counsel their pts re things like wear a mask if gardening and clean or replace showerhead or keep hot water heater at 130 or higher. I regularly educate friends and acquaintances about there things. Others assume I am talking about Valley Fever (coccidiomycosis) which is an entirely different thing.
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@heidemarie1 You are right, MAC/NTM is everywhere just like many other infectious organisms. The big difference is that it only causes illness in very few of us - the estimates vary from 1 to 3 per thousand people, compared to millions who get things like Influenza and pneumonia.
The good news is that NTM and Bronchiectasis are getting a closer look thanks to organizations like Mayo, National Jewish Health (NJH) and ntmir.org.
Here is a good place to find reference materials and information about MAC:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/