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DiscussionJust diagnosed with MAC with a cavitary lesion. Terrified.
MAC & Bronchiectasis | Last Active: Oct 19 9:54am | Replies (18)Comment receiving replies
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.