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Anybody have experience with pulmonary Chelonae?
MAC & Bronchiectasis | Last Active: Apr 19 7:41am | Replies (10)Comment receiving replies
I have a History of Extra-Pulmonary NTM Chelonae and I'm concerned with inadequate treatment or a reoccurrence in the soft tissue of both of my thighs. I have developed painful nodules primarily in the outer thigh area, but a couple in my posterior thigh and buttocks. My first infection was disseminated, but primarily on the top of my left forearm.
As per my luck, Extra-Pulmonary is more rare than Pulmonary NTM. 🙁
Replies to "I have a History of Extra-Pulmonary NTM Chelonae and I'm concerned with inadequate treatment or a..."
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Good morning, Beth! My ID doctor here at Vanderbilt has actually treated patients with extrapulmonary chelonae but never one with pulmonary. Hopefully your doctors can get rid of it for you once and for all, though. Are you immunocompromised or on immunosuppressants of any kind?
In my case, she thinks I'm just colonized or it's passing through. It did that with samples in 2020 and disappeared for over three years. I sure hope she's right! I did more reading on it, and apparently people with CF are commonly colonized with pulmonary chelonae. I've had genetic testing and the only mutation I have is "benign T9/poly T9" but maybe that's part of my puzzle.
Best of luck to you!
Laurel