Mycobacterium heraklionense, has any one heard of it

Posted by Wesbig @wesbig, Apr 1 9:33pm

My pulmonologist and Infectious disease doctors have never heard of it.
There is very little information on line. Is this just a typical strain, or is this more difficult to treat.
I am currently being treated with the big 3 antibiotics, I also nebulize with Albuterol and use a Acapella 2x a day.
I am trying to decide if I need to look for physicians with more experience.
Thanks
Steve

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Sue, Volunteer Mentor | @sueinmn | Apr 1 10:54pm

@wesbig Every day is something new here! Like you I went diving to learn about this mycobacteria, only to learn it was first isolated about a dozen years ago. Best I could find was the genomic classification here:
https://bacdive.dsmz.de/strain/24235
Nothing about infectious capacity in humans. So a few questions for you...
Did they tet more than one sputum sample? Were any other strains isolated in the specimens? Do you have symptoms - cough, fatigue, weight loss, nodules or cavities evident on a CT scan?
If the answers to all these questions is no, I personally would be looking for someone who specializes in treating MAC, quite possibly Mayo, National Jewish Health or University of Texas, Tyler to name a few.
I see you have been a member for a few years, have you been treated for MAC before?
Sue

pacathy | @pacathy | Apr 2 9:46am

I took a fairly quicklook, too, and found a couple more reports of interest. There aren’t many and more seem to be tenosynovitis.

Summary of reported cases a few years back.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4578118/
Here’s another from Duke after hurricane relief efforts.
https://dukespace.lib.duke.edu/server/api/core/bitstreams/34f1dbcb-d5b2-4e9d-bfcd-4315b8db767d/content
It’s not surprising that your docs aren’t familiar with it. I wonder if most labs would ID it.

Good luck! I had a weird (not as rare as yours) pseudomonas putida grow out and I decided not to treat since it was just one specimen and I felt ok. Good luck!

Wesbig | @wesbig | Apr 2 3:09pm

In reply to @pacathy "I took a fairly quicklook, too, and found a couple more reports of interest. There aren’t..." + (show)

Thanks for your reply

Steve

Wesbig | @wesbig | Apr 2 3:14pm

In reply to @sueinmn "@wesbig Every day is something new here! Like you I went diving to learn about this..." + (show)

Thanks for your reply. My pulmonologist did 3 sputum cultures. I am losing weight I don’t caught much unless I use the nebulizer. Hat a CT scan, no pitting or nodules.
Steve

Wesbig | @wesbig | Apr 4 3:52pm

In reply to @pacathy "I took a fairly quicklook, too, and found a couple more reports of interest. There aren’t..." + (show)

Thank you

Steve

jw87 | @jw87 | Apr 5 7:21pm

I am so sorry to hear that you got such a scary diagnosis. By all means get yourself the best doctor you can find. Usually it’s an infectious medicine. Doctor Who can help you the most as well as a pulmonologist who has experience with MAC. I have found you have to look for the best of the best and usually they’re at a teaching hospital. I hope that you get to help you need. Take care.