Disseminated MAC

Posted by circleup @circleup, Mar 6 9:15am

CAn MAC/MAI spread to other areas besides the lungs? WHat would those symptoms look like? I have an issue and every one says i am fine.BUt i am miserable and cant sleep for the discomfort.

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Sue, Volunteer Mentor | @sueinmn | Mar 11 9:46am

@circleup I went back and read all of your posts, and it looks like your MAC/MAI was not treated by a pulmonologist and ID doc fully conversant with the condition. And that you had difficulty with the medications used. I'm sorry you didn't have a good experience with the meds, and that you didn't get much assistance.

As for disseminated MAC/MAI, it is EXTREMELY rare except in people with HIV or an otherwise severly compromised immune system. Here is a rather technical article about that:
https://www.ncbi.nlm.nih.gov/books/NBK431110/
Please talk a little more about your symptoms, and who "everyone" is that is saying you are fine. If your primary is relying on blood tests to determine whether you have a mycobacteria infection, that doesn't work - you need both a sputum culture and a CT scan to see what is happening.

Are you still taking the antibiotics that you were on last October? Did you ever find someone to provide a full level of treatment and education, including airway clearance?

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