Anybody have mycobacterium paraense or other types of ntb mycobacteri?

Posted by barbdk @barbdk, Jul 30, 2023

A few years ago a bronchoscopy showed a new type of mycobacterium in my lungs. It was resistant to the usual group of antibiotics so I did nebulized amikacin for a year (twice a day). Anyone else grow weird ones? I also have multiple myeloma (in remission) but if it comes back I will have to be on therapy drugs for MM plus the drug combos for MAC. Ugh.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sue, Volunteer Mentor | @sueinmn | Jul 30, 2023

@barbdk Welcome to Mayo Connect. Now, that one, M. paraense, is definitely new to me! And it looks to be exceedingly rare and recently discovered as well. Do you have any idea whether it is still active in your lungs? Is your sputum being tested regularly?
Sue

barbdk | @barbdk | Jul 30, 2023

I tried to find out about it, and all I could find was that it originated inBrazil, a country I’ve never been to. My most recent sputum culture only grew MAI, thank goodness. From diagnosis to about a year ago I was followed by pulmonology & ID at the U of MN. Now I’m being followed at Mayo Clinic in Rochester.as I understand things, I’ll never be rid of mycobacteria, they’ve taken up permanent residence in my lungs.
Thanks for asking, I’m glad I came across this site.

squire123 | @squire123 | Jul 31, 2023

I have mycrobacterium lentiflavin, it is now found in Naples, Fl. Newly diagnosed, no nodules or holes. Mild bronchiectasis. Watchful waiting. No meds. Having trouble finding a pulmonologist who will work with me to k÷p me well. Ie, saline for nebulizer, airway clearance, etc. Have the cough from hell, fatigue, sob. Inquiring at NJH if it would be beneficial to come now or wait until I have nodules, etc. Am in touch with woman in Arizona who had MAC and now has lentiflavin. Many nodules.
Interesting stuff! B

barbdk | @barbdk | Jul 31, 2023

I had a doc many years ago who said “You never want to be the interesting patient”. How right he was.

barbdk | @barbdk | Jul 31, 2023

In reply to @squire123 "I have mycrobacterium lentiflavin, it is now found in Naples, Fl. Newly diagnosed, no nodules or..." + (show)

I forgot to ask, was culture and sensitivity done on your Mac?

squire123 | @squire123 | Jul 31, 2023

In reply to @barbdk "I forgot to ask, was culture and sensitivity done on your Mac?" + (show)

I don't have MAC, that's Avian, I have lentiflavin. Still a NTM. Sensitivity study showed 2 that are s, Clarithomycin and Ofloxacin, one intermediate of amikacin. No current rx at this time

squire123 | @squire123 | Jul 31, 2023

In reply to @barbdk "I had a doc many years ago who said “You never want to be the interesting..." + (show)

My thoughts too

rwalz | @rwalz | Jun 11 10:08pm

Hi there!! I would love to know/hear more about this. My son recently had a bronchoscopy done with the same results.

Sue, Volunteer Mentor | @sueinmn | Jun 11 10:36pm

In reply to @rwalz "Hi there!! I would love to know/hear more about this. My son recently had a bronchoscopy..." + (show)

Welcome to Mayo Connect, can we ask a few questions so perhaps someone here can share their story with you?
When you say your son had the same results from his bronchoscopy, do you mean he was diagnosed with a specific strain of mycobacteria? What led to the bronchoscopy, and where is he being treated?