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Anybody have experience with pulmonary Chelonae?
Good morning! Hoping to get some insight from others who may have had some experience with chelonae. Way back in 2020, when I began treatment for MAC, it showed up the month after I had converted the MAC bacteria in my next sputum sample. At first my doctor wasn't worried about it at all, but it grew the next two months as well. We decided to send a sample out to NJH (Vanderbilt doesn't have the ability to do colony counts) to try to get more data and also set about getting me seen there since I was undergoing MAC treatment and chelonae is a rapid grower, etc.
Of course as Murphy's Law would have it, the sample we sent to Denver was negative for everything, and the ones they did when I was seen in October of that year were negative as well. Dr. Kasperbauer told me to finish my MAC meds, stay up with airway clearance and go live my life and released me back to Vandy.
MAC came back in August of 2021, and I started the Big 3 again in January of 2022. I converted, then flipped back positive, and languished there until starting Arikayce in April of 2023. I converted the MAC in June and have negative cultures every month since. BUT my old nemesis chelonae popped in my December 2023 sample. My ID wasn't concerned, said it could be a contaminant, etc. Negative in January and February 2024, but it made another appearance in my March culture. I'm only 73 days away from getting off treatment for MAC (yes, I am counting).
I have searched a lot of forums, boards, etc., and can't seem to find much of anybody with experience with pulmonary chelonae. I am always an overachiever, but I really hope this isn't going to be the case here. (You have to keep your sense of humor, as you all know.) Anyway, if you have cultured it, been treated for it, or know others who have, I would love to hear from you. I'm really hoping this bacteria is just passing through -- but I sure would love to understand why I get it when literally nobody else I know does. I do take all the precautions with water and soil, do airway clearance, etc., and have since 2019.
TIA!
Laurel
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Hi Beth I was just diagnosed with MaC chelonae last month after three positive sputum cultures. I am just starting with ID appointments. I am hesitant to treat it as I have past experience with C diff and had a fecal transplant for it as well. Are you cured now? How long did it take you to complete all treatments. I would love to talk with you in more detail if you’re open to that. I am scared right now as I no have emphysema bronchiectisis AND asthma and now chelonaeee. I realize your post was over a year old but I hope to hear from you.!Thanks Claudine
@cjgillen Let's ask both @laureiltn and @beth71 whether their M Chelonae was treated, or whether their docs chose to watch and wait.
Are you having symptoms, or was it found during a routine periodic sputum culture?
@sueinmn
Hello Sue, it was found during a random sputum culture but I was having symptoms of thick mucus and shortness of breath that my pulmonologist thought was a bacterial infection and turned out to be Chelonae. I also have mild emphysema, COPD and asthma. I have a nebulizer at home I use with Albuterol. Thank you for any information you can help me with as I try to make the difficult decision to treat or not. I am 57 years old.
@cjgillen Has your pulmonologist suggested daily airway clearance to help clear the mucus? Many members follow the albuterol neb by nebulizing a 4ml vial of 7% saline solution to thin the mucus, then using a device or huff coughing to bring up the mucus.
Sometimes this can be effective enough to delay or avoid the antibiotic therapy.
All mycobacteria (NTM) infections are considered rare, M Chelonae is among the most unusual. You might want to ask your pulmonologist to refer you to a pulmonologist experienced in treating NTM.
Sue
Thank you for the information and I will continue using nebs. My pulmonologist referred me over to Infectious Disease (doc specializes in NTM) in which they have a clinic one day a month dedicated to NTM infections, but there only interest seems to be me taking 3 or 4 antibiotics in which one is a trial with horrible side effects. I guess I just feel all alone in this and was looking for what others did for treatment or if they decided to not take the antibiotics. Doc won’t give me a straight answer if this is going to kill me or not either.
Good morning, Claudine! I actually never treated chelonae, but I have treated MAC (avium complex) twice and have now been NTM free for a year and a half, for which I'm incredibly thankful.
In my research, I only found one or two other people who ever even cultured pulmonary chelonae, let alone treated it. (I can't recall, but I want to say maybe one person in Portland treated it?)
In my case, chelonae was transient. It did culture three three months in a row back in 2020, which is why my infectious disease doctor sent me to NJH for a second opinion on what to do. We were in the middle of treating MAC, and she had never had a patient with my situation before and wanted them to weigh in. By the time I got to NJH, however, it disappeared. It didn't show up again for four years, and then popped up once in 2024 and once in 2025 -- but only in one of three serial samples, meaning three sputums done a day apart, and two of the three were negative with one growing chelonae. My ID doctor is not concerned in my case and thinks it's either a contaminant or just the fact that, as she puts it, "my excellent airway clearance techniques bringing stuff up that 99% of people couldn't get out of the bottom of their lungs." I have no other comorbidities besides bronchiectasis, hit the gym 3 times a week, walk 3 to 5 miles a day, hike mountains, etc., so my lung capacity is pretty fabulous for 68 years old
Unless your CT scans are showing dramatic deterioration or cavities, it seems logical to discuss with your doctors trying to clear it with airway clearance first? A second opinion from a Center of Excellence, if you're not being seen by one now, might also be worthwhile.
I will say that treatment can be tolerated well and be successful for NTM, though. I honestly never had an adverse side effect from the "big 3," or Arikayce, which was added and ultimately knocked out my MAC.
Best of luck and keep me posted on your journey!
Laurel
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