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New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

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@n4seth

I am newly diagnosed as well and because of Covid-19 have been sitting in limbo for 6 weeks with way too much time to think. Luckily, my husband found the site for me and I have taken their advice and educated myself by reading the old posts and using the resources mentioned. Sometimes, I find the posts alarming, however, I believe the benefit of arming myself with knowledge will benefit me in the long run.The videos from National Jewish Health have been particularly informative. As I wait for Dr. contacts and appointments, I am doing as much as I can knowing that I will most likely be too sick once I start the drugs. I am preparing myself for the worst and hoping that maybe I will be one of the lucky ones in terms of side effects. That said, I guess if I have to go through this, now is as good a time as any since it appears that those of us who make up the vulnerable population won't be getting out and around for a long time to come. I hope you consider using all the support and resources available and I wish you well on your journey! Nancy

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Replies to "I am newly diagnosed as well and because of Covid-19 have been sitting in limbo for..."

I have been on the meds for 8 months. I haven't had the nasty gut side effects. I do have ringing in the ears and I can't get to an audiologist because of COVID and my thyroid meds are messed up. My latest side effect is my white blood count is getting lower. My doctors are staying on top of it though. I have had numerous phone calls and a teleconference. I get monthly blood work still and I do have to go in a hospital which makes me nervous. We have many cases due to meat packing plants in our area.