Anybody have mycobacterium paraense or other types of ntb mycobacteri?

Welcome to Mayo Connect, can we ask a few questions so perhaps someone here can share their story with you?
When you say your son had the same results from his bronchoscopy, do you mean he was diagnosed with a specific strain of mycobacteria? What led to the bronchoscopy, and where is he being treated?

I’ve found it very helpful to see a pulmonologist and an infectious disease doc who is an expert with NTM.

Our pulmonologist is great. However the ID specialist we saw basically said she has never seen this it’s rare, she believes the lab results were contaminated and chalked it up to him having RSV at 3 months even though none of this started around 12-13 months

Hi! Yes, my son around 12 months of age started to experience breathing problems. He was always wheezy and sounded crunchy when he got sick but his oxygen was always good. He had multiple ear infections as well. His primary referred us a pulmonologist and that’s when the pulmonologist suggested albuterol and advair as an inhaler and diagnosed him with asthma. A few months later he was having the same issues so we proceeded with the bronchoscopy and also met with an ENT to his tubes in his ears and adenoids removed. We did the Bronchoscopy back in November of 2023 and his results came back normal at first then over time (like 3 months) as the culture sat his mycobacterium paraense came back as abnormal. We went back to the pulmonologist he said he has never seen this bacteria before and doesn’t know how to treat this kind of bacteria. He referred us to an ID specialist from out of town. We went yesterday to meet with the ID specialist drove 2 hours for basically nothing. She believed that his lab cultures were contaminated and that this could be because he has RSV at 3 months of age. It doesn’t make sense at all. All this started after he was 1. When he had RSV he wasn’t hospitalized, he didn’t need oxygen and he was fine after 2 days. His symptoms were cold like symptoms.

Hi! Yes, my son around 12 months of age started to experience breathing problems. He was always wheezy and sounded crunchy when he got sick but his oxygen was always good. He had multiple ear infections as well. His primary referred us a pulmonologist and that’s when the pulmonologist suggested albuterol and advair as an inhaler and diagnosed him with asthma. A few months later he was having the same issues so we proceeded with the bronchoscopy and also met with an ENT to his tubes in his ears and adenoids removed. We did the Bronchoscopy back in November of 2023 and his results came back normal at first then over time (like 3 months) as the culture sat his mycobacterium paraense came back as abnormal. We went back to the pulmonologist he said he has never seen this bacteria before and doesn’t know how to treat this kind of bacteria. He referred us to an ID specialist from out of town. We went yesterday to meet with the ID specialist drove 2 hours for basically nothing. She believed that his lab cultures were contaminated and that this could be because he has RSV at 3 months of age. It doesn’t make sense at all. All this started after he was 1. When he had RSV he wasn’t hospitalized, he didn’t need oxygen and he was fine after 2 days. His symptoms were cold like symptoms.

Hi rwalz. Can you bring your son to a specialized children's hospital? They would have pediatric pulmonologists and infectious disease doctors who have experience in diagnosing and treating breathing problems, and they would be better able to coordinate any treatment. Best of luck with your little guy.