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Misdiagnosed Mac

MAC & Bronchiectasis | Last Active: Jan 9 8:49am | Replies (33)

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@sueinmn

@tracy111869 I would like to welcome you to Mayo Connect and second Rick's recommendation, "Concentrate on getting better, not on revenge." You are going to need all of your strength and energy to get to the right treatment and get healthy again.
Many, many of the posts in our support group begin with stories like yours or mine - I was diagnosed with "intractable asthma and chronic bronchitis" for 5 years before a sharp-eyed radiologist pointed out the bronchiectasis and "probable MAI" on an x-ray. At that point, I couldn't walk across the street without stopping to cough and catch my breath!
As for sputum cultures, they can be spotty - I had 3 samples in one time - one grew MAC, one grew, one grew pseudomonas - same day, same lungs!
Do you have access to a pulmonologist with experience treating MAC?

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Replies to "@tracy111869 I would like to welcome you to Mayo Connect and second Rick's recommendation, "Concentrate on..."

I thought I had the right doctor. Unfortunately not just missing my diagnosis of mac in 2019 she in 2022 believed my lung condition was associated with cystic fibrosis. I am a carrier but do not have the disease. You need 2 genetic parents to have it. So basically since 2019 till October 2022 I was being wrongly treated make my lung condition much worse. I tried to explain to the doctor upfront in 2019 I was a 911 first responder abc had lung couping since then. She did not go by history that I probably got brocistasis from 911 but a genetic problem. Just a very frustrating situation. Thank you