Reducing Exposure to Nontuberculous Mycobacteria (NTM)

Posted by Armando @bolso1, Sep 16, 2021

Please see the attached document prepared by Dr. Joseph O. Falkinham, III, a world authority on the management of NTM dispersion.

Shared files

Reducing Exposure to Nontuberculous Mycobacteria (Reducing-Exposure-to-Nontuberculous-Mycobacteria.pdf)

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

@bolso1

Hi lora jo,

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

Armando

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Got it. Will work on getting something set up with Falkinham.
Thanks, lora jo

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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?

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@colleenyoung

Hi Martha, I noticed that you wished to post a URL to a resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

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

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Thanks, Colleen!

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@pamelasc1

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?

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

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@sueinmn

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

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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. 🙁

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@rits

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. 🙁

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

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@sueinmn

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

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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

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@pamelasc1

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

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Two weeks at a time, with a 2 week week break, so 4 weeks Tobramycin after 2 months Levaquin. My husband thinks I had a month of doxycyline in there too. I was living in a fog because I also had MAC and was quite ill.
Sue

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@sueinmn

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

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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!

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@rits

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!

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I work with my primary, ID doc and pulmo. Believe it or not, they collaborate and all are watching me, so I'm confident.
Sue

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