I was diagnosed with MAC in August 2017 from a culture from a lung biopsy.. This all started in May 2017 when I was admitted to the hospital for pneumonia. They found a spot on my lung, and I had to have a lung biopsy done on first of July. My pulmonologist put me on the Big 3(Clarithromycin, Ethambutol, Rifampin). I could not tolerate any of those medications so they had me stop all medications and referred me to an Infectious Disease doctor. I was also put on Zithromax 500mg daily but could not tolerate that either. I have not noticed a change in my symptoms, and I am having more severe pains. I am 27 years old, and every doctor that I see says that I am to young to have MAC, but then they all review my records.
For the last year I have tried multiple medications for treatment, and at this time, my providers have told me to stop taking the medications due to severe side effects landing me back into the hospital. I see my primary, pulmonary, infectious disease, as well as an allergist. My allergist ordered a repeat CT, which marks 1 year from this all really starting. At the time they told me that it was dormant and I didn't have to worry about it growing, but I would continue with fatigue, cough, etc.. I had the CT done 2 wks ago and now they are telling me that it has grown and I need to seek a treatment right away. So now they are referring me to Tyler, Texas.. They have an 8 wk wait time, and I am considering moving to Montana so I can have support. This has been a struggle to handle on my own, and has caught me off guard. Does anyone know of a hospital in Montana, or surrounding state that would be a good place to establish? I am looking into COBRA, for coverage for the interim because I know that I am going to have to establish with all new providers when I move.