Reducing Exposure to Nontuberculous Mycobacteria (NTM)

Hi lora jo,

This is Dr Joseph Falkinham's email address: jofiii@vt.edu

Armando

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- Physical Measures to Reduce Exposure to Tap Water–Associated Nontuberculous Mycobacteria (2020) https://www.frontiersin.org/articles/10.3389/fpubh.2020.00190/full

Hello everyone - I have been absent from our group for some time now, but now I am suddenly overwhelmed with an issue that I am hoping others have some experience with. From 2015 to 2017 I was on the Big 3 for MAC - it was cleared up but since then I have had various bouts of different types of bacteria in my lungs. The main drug used for treatment was the quinolone antibiotic, Levofloaxin. It worked like a charm. But just this winter I began to have neuropathy in my feet and toes, one of the long term side affects of Levo that can happen many months to years after taking it. Last week, my sputum sample came back with pseudemonas ( I have had it 3 times already, and always used the Levo for 10 days to clear it up). Now I am afraid to use the Levo for fear of my neurapathy getting worse. My doctor says there are no other antibiotics, other than Cipro or Levo ( both quinolones) to treat it. I do feel he is right on this, unless someone out there has been treated with something other for pseudemonas and it cleared up. ?? I think the pseudemonas is getting a bit worse and I feel totally overwhelmed with the choices I have: do I go back on the Levo, have it clear the bacteria, but risk more severe neuropathy? Do I just wait it out, and hope the psedemonas clears up on its own? Or has anyone taken something else for this particular bacteria that worked and did not carry the risks of this drug? I believe it has been banned in Germany - it really does its work, but for someone my age ( now 72) it can be very dangerous. Does anyone have any thoughts on my dilemma?

I was prescribed inhaled Tobramycin for my Pseudomonas in 2018. 2 2 week courses cleared it up after 2 courses of Levaquin failed.

And it's not come back all those years? It doesn't show up in your sputum samples? That is fantastic.
Congratulations!

I have a lot of pseudomonas in my sputum ( it doesn't show up on ct scan) but could not tolerate the inhaled antibiotic my doctor prescribed which is supposedly more tolerable than Toby. . My lungs are very fragile and I have bad reactions to anything inhaled. Still I lasted on it for two weeks. My doctor did not prescribe an oral antibiotic because of severe digestive issues I have following surgery for colon cancer almost 6 years ago.

Currently I am stuck at home due to really bad shortness of breath and tons of sputum coming up all day.

I would love to get rid of the pseudomonas although I'm not sure that it is causing this. Right now I am just letting it grow. 🙁

I was prescribed inhaled Tobramycin for my Pseudomonas in 2018. 2 2 week courses cleared it up after 2 courses of Levaquin failed.

Hello Sue - when you say 22 weeks, do you mean you took it everyday, twice a week, for 22 week? Did you have any side affects when you inhaled it? I ask because nanny said she suddenly just after taking it, when she was some weeks into taking it, could not breathe and that it was very scary, so she stopped. Did anything like that happen to you? Thank so much, Pamela

My last culture was December 2019, positive for MAC, negative for pseudo. I have been asymptomatic since then, so no further cultures.
Sue

I'm surprised that your doctors don't have you sending sputum samples. I thought that was standard, not only for MAC which shows up on a ct scan but for other bacteria as well as fungi which don't show up. I learn something new every day!