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Anybody have experience with pulmonary Chelonae?

MAC & Bronchiectasis | Last Active: Apr 19 7:41am | Replies (10)
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@laureltn

Hi, Cathy! Yes, I've done a ton of reading/research, starting back in 2020 when it first showed up. I just have been unsuccessful in really finding anyone in any of the groups/boards I've frequented over the last five years who has similar experience. Hoping if I can connect with others, I may find some common threads to help me avoid it going forward.

thanks so much!
Laurel

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Replies to "Hi, Cathy! Yes, I've done a ton of reading/research, starting back in 2020 when it first..."
Sue, Volunteer Mentor | @sueinmn | Mar 29 11:19am

Hi Laurel - Whe you talked about your M. Chelonae, you said "...but I sure would love to understand why I get it when literally nobody else I know does..."
I think that in many labs/practices M. Chelonae & M. Abscessus are still reported together - that is, we don't know how many have each one. Also, it is not differentiated in a lot of labs because the treatment is the same.
The fact that M Chelonae shows in some of your cultures and not others makes me wonder if your ID is correct and it is a contaminant - perhaps residing in your nose or sinuses and contaminating your sputum sample. Or perhaps their lab is the culprit?
What does your most recent CT scan look like? Is there evidence of colonized infection - nodules or cavities? If so, two possible diagnostics come to mind - a bronchoscopy to confirm its presence in your lungs, or a 3-consecutive-day sputum sample sent to NJH.

What does your pulmonologist say?
Sue

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