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Replies to "NTM's are extremely hard to diagnose and treat. I've been in this game for over 5..."
MAC & Bronchiectasis | Last Active: Jan 9, 2024 | Replies (33)
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Replies to "NTM's are extremely hard to diagnose and treat. I've been in this game for over 5..."
I agree concentrate getting better. The thing that pisses me off is that the cat scan from 2019 said atypical mycrobactiera. That was the heart doctor that sent me for it same hospital. Pulmonologist missed it and went by ntm culture only and put me on batrum and levewuin when I should have been on ethambual and ariomizan. I suffered for 3 years spitting up blood losing weight couph night sweats and my lungs getting worse. I have been on yhe 2 drug regimen since November 2022 and all good now.
@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?