Anybody have experience with pulmonary Chelonae?

I have no experience with it, but took a quick look at literature.
I’m guessing you’ve seen this. There are also a couple case reports on NLM site.

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

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

Hi, Sue! Thanks so much for replying and your thoughts/comments!

I've read about the labs that don't differentiate the two. I'm 99.% sure Vanderbilt does, however. I say this because several folks in my support group have Abscessus, but none of them have ever had Chelonae reported. Vandy uses MALDI-TOF mass spectrometry, just as a point of information. I know it's not infallible by any means, and misidentification is not impossible. The samples are sent to NJH for cultures and sensitivities. I haven't seen a report from the December one, but it should be popping into my portal soon, I would think. I've never been smear positive for anything, by the way, and I have never really had any symptoms. My MAC was found, as so many others, on an incidental CT that was done for something totally unrelated to my lungs. I actually thru-hiked the Grand Canyon right before my bronchoscopy.

My lung damage was described by Dr. Raymond at Cleveland Clinic as "barely bronchiectatic," and he was puzzled as to why I even get NTM, let alone wasn't able to clear MAC twice without treatment. (The damage was a result of radiation for DCIS (Stage 0 breast cancer) back in 2006. It's very focal in nature.)

I'm due a new CT, and they'll likely do one before I go see my ID and pulmonologist in clinic in May. Last one was 2/23, showing slight improvement over the previous year, but after 12 months on the Big 3 and still culturing positive, that's why we started Arikayce, which finally seems to have knocked it out for good. (fingers crossed) I've never had cavities. I did have nodularity initially, and my January 2020 CT had shown consolidation and advancement, which is why my original MAC back then was treated. If there's any deterioration on my next scan, that would certainly be telling about a rapid grower trying to set up house, though, for sure.

Contamination is definitely always a possibility, even though I'm super careful with my samples and do everything to avoid any sinus drainage getting into it. You and I have been thinking along the same lines -- I actually suggested to my ID, and she agreed, that we'll do serial samples here locally next week. If all three are negative, great. If they're mixed or all positive, I had planned to try to get NJH to do a series, so again, we're thinking alike. I was super sad that NJH wouldn't agree to keep processing my sputum after my October 2020 visit, only because of the additional incredibly valuable information they could provide, but they didn't feel it was necessary.

I keep encouraging Vandy to get colony count ability in the lab, as well as making serial samples standard practice. Hopefully that will come to fruition in the not too distant future!

thanks again for your thoughts and time!
Laurel

Anyone have Extra-Pulmonary NTM Chelonae by chance?

Hi @beth71, I moved your question about Extra-Pulmonary NTM Chelonae to this existing discussion:
- Anybody have experience with pulmonary Chelonae? https://connect.mayoclinic.org/discussion/anybody-have-experience-with-pulmonary-chelonae/

I did this so you can click the link to read through previous posts and connect with @laureltn @ncgirl and @thielmann1.

Beth, have you been recently diagnosed with pulmonary NTM chelonae?

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. 🙁

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

Good morning Laurel. I am trying to get into Vandy as I had a great experience with the Endocrine and Interventional Teams last summer. Are you a member of the NTM Resource and Support group? Would you happen to be the Laurel with the TN group who reached out to the ID Team for me? One of the leaders (Amy L) in that organization is supposed to be contacting the MD (Dr. Fiske) again. I was hoping to have the imaging done a day before my appt. The first 2 appt specialists said that would not be a problem, but the last maybe? The Team Lead was extremely rude and said that would not be happening. You must come to appt with all imaging media, reports, and post biopsies with results. I don't know if that was the general rule for the clinic or if Dr. Fiske even was informed of my needs. That is the whole issue in my area. My Infectious Disease is obstructive as he should have obtained imaging before and after my treatment so if imaging is not done and nothing is "seen" then there is nothing to treat. He has marked my chart as "Crazy" essentially. My PCP retired in Dec and he recommended who I should see with all of my complex health issues, but she has been off for months now caring for her ill husband. I tried to get appropriate imaging with the MD's APN, but she was overwhelmed with my health issues. Ordered my MRI, and was on the table for 2 hrs. and 20 minutes to receive a report that only captured from the femur to femur. It got my inner thighs and not my outer where the nodules are primarily located. My pain had eased up a bit and I needed a mental and emotional reprieve. Unfortunately, my significant pain returned over the weekend. I opted to ask for another PCP. I had an appointment yesterday and he seems to understand my needs. He is reaching out to the private cancer institute to see if they could get the imaging and biopsy done for me and I pray they will be receptive to the tests needed for correct biopsy analysis. This has been a living nightmare! I just need adequate imaging so whatever this is can be captured; then a biopsy for identification.

Are you on the Mayo Clinic Blog just for access to additional info and extra support or did the Mayo refer you to Vandy?

Thanks for reaching out to me.

Beth

Good morning, Beth! I'm sorry for the delayed response. We were in Florida, visiting family, then came home to, of course, doctor's appointments. Bahahaha! We're heading to Knoxville later today, but I wanted to quickly pop in and say yes, that's me!

I'm sorry it's been so darned challenging and difficult for you with this. I'll be seeing Dr. Fiske next month, and I'll try to make a note to check in and see what's going on with having you seen. Hopefully, though, you'll be in to see her before then! I am so pleased with her demeanor, knowledge, and compassion. She's more like a sister than a doctor in some ways (younger sister -- how did I get this old?).

Anyway, wishing you the best of luck and hopefully you can get in to see Christina and she can help get you some answers/treatment that works!

Laurel