You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Nocardia
- Thread starter bloggymom
- Start date
Welcome to the Norcardia club, population I'm not sure....
I grew Nocardia about 4-5 years ago and I think, I think it's finally gone. It's a PITA to get rid of. I first was on minocycline for about 2 years, stopped for a year, grew it again, and have been on Sulfameth for about a year. The CF clinic told me to stop taking it because my last culture came back negative but I don't trust them because it's really hard to get good samples from me (it requires a bronch).
Honestly it didn't seem to affect me at all. My PFT's didn't drop drastically besides the general "getting older" thing, I never got sick from it, and it just kind of sat there. I know of another lady that had Nocardia (not CF) and she got horrendously sick, like in a comma with every kind of tube sick, but it just depends I guess, like everything else out there.
I grew Nocardia about 4-5 years ago and I think, I think it's finally gone. It's a PITA to get rid of. I first was on minocycline for about 2 years, stopped for a year, grew it again, and have been on Sulfameth for about a year. The CF clinic told me to stop taking it because my last culture came back negative but I don't trust them because it's really hard to get good samples from me (it requires a bronch).
Honestly it didn't seem to affect me at all. My PFT's didn't drop drastically besides the general "getting older" thing, I never got sick from it, and it just kind of sat there. I know of another lady that had Nocardia (not CF) and she got horrendously sick, like in a comma with every kind of tube sick, but it just depends I guess, like everything else out there.
isabella Mendoza
New member
nocardia!
Both of my boys have cultured it on and off for years and years. Minicycline and doxycycline have both worked on and off. Bactrim (septra) has worked for some people, and finally, if those fail, linezolid will knock it out. Problem with that though, is that linezolid can have bad side effects (dangerous) over a long course. One of my sons once got pancytopenia after about 6 months of it. If the doctor watches the blood and does frequent checking for white cells, it can be managed.
Good luck!
Isabella
Both of my boys have cultured it on and off for years and years. Minicycline and doxycycline have both worked on and off. Bactrim (septra) has worked for some people, and finally, if those fail, linezolid will knock it out. Problem with that though, is that linezolid can have bad side effects (dangerous) over a long course. One of my sons once got pancytopenia after about 6 months of it. If the doctor watches the blood and does frequent checking for white cells, it can be managed.
Good luck!
Isabella
Welcome to the Norcardia club, population I'm not sure....
I grew Nocardia about 4-5 years ago and I think, I think it's finally gone. It's a PITA to get rid of. I first was on minocycline for about 2 years, stopped for a year, grew it again, and have been on Sulfameth for about a year. The CF clinic told me to stop taking it because my last culture came back negative but I don't trust them because it's really hard to get good samples from me (it requires a bronch).
Honestly it didn't seem to affect me at all. My PFT's didn't drop drastically besides the general "getting older" thing, I never got sick from it, and it just kind of sat there. I know of another lady that had Nocardia (not CF) and she got horrendously sick, like in a comma with every kind of tube sick, but it just depends I guess, like everything else out there.
isabella Mendoza
New member
nocardia - to bloggymom
That should do it, it will kick it out. This is IV? Synthetic penicillins will wipe out gram positive bacteria. After you get better probably a good idea to do a maintenance med for a little while because it is very hard to knock out nocardia right away. Where do you live? I always had a theory that the boys cultured it because we live in the desert where it is dry and dusty. Isabella
That should do it, it will kick it out. This is IV? Synthetic penicillins will wipe out gram positive bacteria. After you get better probably a good idea to do a maintenance med for a little while because it is very hard to knock out nocardia right away. Where do you live? I always had a theory that the boys cultured it because we live in the desert where it is dry and dusty. Isabella
farmfamily
New member
It was over ten years ago that my son grew nocardia and to tell you the truth the Drs kind of freaked. Now ten years later both of my kids will culture it off and on. Drs watch it. We do more frequent CATScans. My daughter is goin in this week for a bronch and PICC line. My son was on Bactrim for over a year. They are doing the bronc on my daughter to find out if she is growing nocardia and how to treat it. It takes a long time to grow in cultures. I too have heard it is more and more common in CFers especially in the Southwest, which is where we live. In the desert dry and dusty just like Isabella. Where do you live?
Mom to three, two with CF
Mom to three, two with CF
It was over ten years ago that my son grew nocardia and to tell you the truth the Drs kind of freaked. Now ten years later both of my kids will culture it off and on. Drs watch it. We do more frequent CATScans. My daughter is goin in this week for a bronch and PICC line. My son was on Bactrim for over a year. They are doing the bronc on my daughter to find out if she is growing nocardia and how to treat it. It takes a long time to grow in cultures. I too have heard it is more and more common in CFers especially in the Southwest, which is where we live. In the desert dry and dusty just like Isabella. Where do you live?
Mom to three, two with CF
Yeah, I'm actually in the Southwest desert. I did some back research awhile ago and it's apparently in the soil, or "organic matter" to be specific, which I thought was hilarious because uh, what "organic matter" here?! We got cactus and dirt.
Oh, and the meds I took were oral, not IV. I don't have a port so that would've sucked big time.