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@sueinmn

@justaussie MAC is scary at first ! Lots of unfamiliar terms, dire warnings about side effects of the meds, and as you are learning it is difficult to find good docs familiar with this rare infection.
Once infection has progressed to the cavitary stage it is important to begin treatment as soon as possible since lung tissue is being destroyed. Your pulmonologist can always modify the regimen when you see them.
Have you been prescribed the meds 3x per week? What you need as soon as you can are baseline eye and hearing exams. And you need to give up your wine and have your liver enzymes monitored. This is not fun,but it doesn't have to be terrifying. We're here to help you get through it.

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Replies to "@justaussie MAC is scary at first ! Lots of unfamiliar terms, dire warnings about side effects..."

Thank you for your message. I've been prescribed daily medications due to the cavitary lesion I have. I know have to have the eye and hearing tests. I just want to run away to be honest. Doesn't sound like there's much to look forward to. I'm terrified of the big side effects. I've got the drugs to start - but too scared to take them especially not having a doctor I like/feel actually cares about what happens to me. Also - the doctor and I discussed whether I should stop drinking for 2 weeks before starting the meds - so thinking maybe I should do that, but keep putting it off - as once I start - doesn't seem like a good idea to stop unless dangerous side effects happen or can't tolerate. What I don't understand is how is it that something like this hasn't had more research over the years to find a better treatment option. Sounds like this has been the standard for a long time. I wonder if it's because so few cases compared to diseases like cancer that they don't put as much money into research. Very strange - when I also read that there has been a significant up tick in cases in recent years. Hoping against hope that they come up with a new treatment in the coming years that is much better than current option. Also - I wonder why more people don't have surgery if the treatment is not tolerable. It seems from what I've read - people that have surgery seem to recover/stay MAC free for much longer. Thanks for your kind words. Here's hoping for better days ahead for all. Any suggestions on how to find a MAC expert pulmonologist in the Washington DC area most welcome. I have an appointment with a young pulmonologist in September - earliest I could get - but feel I'd really like someone who has expertise with MAC.