NON-TUBERCULOUS MYCOBACTERIUM..?

Sevenstars · Jul 5, 2008

I also cultured NTB from a bronch. I never cultured it from a regular sputum culture so I guess it wasn't that prevalent in my lungs, or maybe it was just farther down. I wasn't even sick from it, seemingly, but they decided to treat me anyway. I was on 2 IV meds for 6 (or was it 8?) weeks. Some people on here have been on IVs for over a year for it!! I have no idea why my treatment time was so different.

The good news is that I have never cultured it again, after treating it. However, I have not had a bronch since that one either, so perhaps it is still lurking around. Best of luck to your son in getting it taken care of.

Edit: I have no idea what type of NTB I had, they just told me it was NTB. Perhaps different types are harder or easier to treat.

Sevenstars · Jul 5, 2008

I also cultured NTB from a bronch. I never cultured it from a regular sputum culture so I guess it wasn't that prevalent in my lungs, or maybe it was just farther down. I wasn't even sick from it, seemingly, but they decided to treat me anyway. I was on 2 IV meds for 6 (or was it 8?) weeks. Some people on here have been on IVs for over a year for it!! I have no idea why my treatment time was so different.

The good news is that I have never cultured it again, after treating it. However, I have not had a bronch since that one either, so perhaps it is still lurking around. Best of luck to your son in getting it taken care of.

Edit: I have no idea what type of NTB I had, they just told me it was NTB. Perhaps different types are harder or easier to treat.

Sevenstars · Jul 5, 2008

I also cultured NTB from a bronch. I never cultured it from a regular sputum culture so I guess it wasn't that prevalent in my lungs, or maybe it was just farther down. I wasn't even sick from it, seemingly, but they decided to treat me anyway. I was on 2 IV meds for 6 (or was it 8?) weeks. Some people on here have been on IVs for over a year for it!! I have no idea why my treatment time was so different.

The good news is that I have never cultured it again, after treating it. However, I have not had a bronch since that one either, so perhaps it is still lurking around. Best of luck to your son in getting it taken care of.

Edit: I have no idea what type of NTB I had, they just told me it was NTB. Perhaps different types are harder or easier to treat.

Sevenstars · Jul 5, 2008

I also cultured NTB from a bronch. I never cultured it from a regular sputum culture so I guess it wasn't that prevalent in my lungs, or maybe it was just farther down. I wasn't even sick from it, seemingly, but they decided to treat me anyway. I was on 2 IV meds for 6 (or was it 8?) weeks. Some people on here have been on IVs for over a year for it!! I have no idea why my treatment time was so different.

The good news is that I have never cultured it again, after treating it. However, I have not had a bronch since that one either, so perhaps it is still lurking around. Best of luck to your son in getting it taken care of.

Edit: I have no idea what type of NTB I had, they just told me it was NTB. Perhaps different types are harder or easier to treat.

Sevenstars · Jul 5, 2008

I also cultured NTB from a bronch. I never cultured it from a regular sputum culture so I guess it wasn't that prevalent in my lungs, or maybe it was just farther down. I wasn't even sick from it, seemingly, but they decided to treat me anyway. I was on 2 IV meds for 6 (or was it 8?) weeks. Some people on here have been on IVs for over a year for it!! I have no idea why my treatment time was so different.
 
 The good news is that I have never cultured it again, after treating it. However, I have not had a bronch since that one either, so perhaps it is still lurking around. Best of luck to your son in getting it taken care of.
 
 Edit: I have no idea what type of NTB I had, they just told me it was NTB. Perhaps different types are harder or easier to treat.

Skye · Jul 5, 2008

This doesn't really answer your questions......but, i found some interesting research. a study done in 2003 that indicates the prevalence of mycobacterium at about 13% and more prevalent in older CFers. I thought it was interesting that patients with it tend to have a higher FEV1 and it is not as prevalent in patients who culture pseudomonas. here is the link if anyone is interested.....of course this is just 1 study

<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/abstract/167/6/828">http://ajrccm.atsjournals.org/...ent/abstract/167/6/828</a>

Skye · Jul 5, 2008

This doesn't really answer your questions......but, i found some interesting research. a study done in 2003 that indicates the prevalence of mycobacterium at about 13% and more prevalent in older CFers. I thought it was interesting that patients with it tend to have a higher FEV1 and it is not as prevalent in patients who culture pseudomonas. here is the link if anyone is interested.....of course this is just 1 study

<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/abstract/167/6/828">http://ajrccm.atsjournals.org/...ent/abstract/167/6/828</a>

Skye · Jul 5, 2008

This doesn't really answer your questions......but, i found some interesting research. a study done in 2003 that indicates the prevalence of mycobacterium at about 13% and more prevalent in older CFers. I thought it was interesting that patients with it tend to have a higher FEV1 and it is not as prevalent in patients who culture pseudomonas. here is the link if anyone is interested.....of course this is just 1 study

<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/abstract/167/6/828">http://ajrccm.atsjournals.org/...ent/abstract/167/6/828</a>

Skye · Jul 5, 2008

This doesn't really answer your questions......but, i found some interesting research. a study done in 2003 that indicates the prevalence of mycobacterium at about 13% and more prevalent in older CFers. I thought it was interesting that patients with it tend to have a higher FEV1 and it is not as prevalent in patients who culture pseudomonas. here is the link if anyone is interested.....of course this is just 1 study

<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/abstract/167/6/828">http://ajrccm.atsjournals.org/...ent/abstract/167/6/828</a>

Skye · Jul 5, 2008

This doesn't really answer your questions......but, i found some interesting research. a study done in 2003 that indicates the prevalence of mycobacterium at about 13% and more prevalent in older CFers. I thought it was interesting that patients with it tend to have a higher FEV1 and it is not as prevalent in patients who culture pseudomonas. here is the link if anyone is interested.....of course this is just 1 study
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/abstract/167/6/828">http://ajrccm.atsjournals.org/...ent/abstract/167/6/828</a>

kbsonner · Jul 5, 2008

I'm not sure yet which one. I just got the nurse to look up the bug for me. Right now he is on 2 oral and 2 PICC line antibiotics. I guess one of the PICC line ones will be given for a few months it sounds like. Our only other option is giving him a shot every other day and of course he doesn't want that lol I wouldn't either. This has never shown up on a regular throat culture or on the bronc he had last August so I am hopeing it was caught early enough and the drugs will kick butt and get rid of it quickley. We have never had to bring a PICC line home before so that makes me a bit nervous. But I guess I don't have a choice so...any tips or tricks I need to know about careing for this line and how a active 10 yr old is suppose to be "normal" with it? Jane: How did the beach thing go when they can't go swimming? It's all so overwhelming at first...Kelly

kbsonner · Jul 5, 2008

I'm not sure yet which one. I just got the nurse to look up the bug for me. Right now he is on 2 oral and 2 PICC line antibiotics. I guess one of the PICC line ones will be given for a few months it sounds like. Our only other option is giving him a shot every other day and of course he doesn't want that lol I wouldn't either. This has never shown up on a regular throat culture or on the bronc he had last August so I am hopeing it was caught early enough and the drugs will kick butt and get rid of it quickley. We have never had to bring a PICC line home before so that makes me a bit nervous. But I guess I don't have a choice so...any tips or tricks I need to know about careing for this line and how a active 10 yr old is suppose to be "normal" with it? Jane: How did the beach thing go when they can't go swimming? It's all so overwhelming at first...Kelly

kbsonner · Jul 5, 2008

I'm not sure yet which one. I just got the nurse to look up the bug for me. Right now he is on 2 oral and 2 PICC line antibiotics. I guess one of the PICC line ones will be given for a few months it sounds like. Our only other option is giving him a shot every other day and of course he doesn't want that lol I wouldn't either. This has never shown up on a regular throat culture or on the bronc he had last August so I am hopeing it was caught early enough and the drugs will kick butt and get rid of it quickley. We have never had to bring a PICC line home before so that makes me a bit nervous. But I guess I don't have a choice so...any tips or tricks I need to know about careing for this line and how a active 10 yr old is suppose to be "normal" with it? Jane: How did the beach thing go when they can't go swimming? It's all so overwhelming at first...Kelly

kbsonner · Jul 5, 2008

I'm not sure yet which one. I just got the nurse to look up the bug for me. Right now he is on 2 oral and 2 PICC line antibiotics. I guess one of the PICC line ones will be given for a few months it sounds like. Our only other option is giving him a shot every other day and of course he doesn't want that lol I wouldn't either. This has never shown up on a regular throat culture or on the bronc he had last August so I am hopeing it was caught early enough and the drugs will kick butt and get rid of it quickley. We have never had to bring a PICC line home before so that makes me a bit nervous. But I guess I don't have a choice so...any tips or tricks I need to know about careing for this line and how a active 10 yr old is suppose to be "normal" with it? Jane: How did the beach thing go when they can't go swimming? It's all so overwhelming at first...Kelly

kbsonner · Jul 5, 2008

I'm not sure yet which one. I just got the nurse to look up the bug for me. Right now he is on 2 oral and 2 PICC line antibiotics. I guess one of the PICC line ones will be given for a few months it sounds like. Our only other option is giving him a shot every other day and of course he doesn't want that lol I wouldn't either. This has never shown up on a regular throat culture or on the bronc he had last August so I am hopeing it was caught early enough and the drugs will kick butt and get rid of it quickley. We have never had to bring a PICC line home before so that makes me a bit nervous. But I guess I don't have a choice so...any tips or tricks I need to know about careing for this line and how a active 10 yr old is suppose to be "normal" with it? Jane: How did the beach thing go when they can't go swimming? It's all so overwhelming at first...Kelly

Gingerloveslife · Jul 5, 2008

Hey Kelly. I too had NTB about 11 years ago. It was cultured after a bronch even though my regular cultures didn't show it either. It had dropped my FEV1 down about 30% and after I finished a whole year of treatment my lung function came back up. Thus you can see the importance of the antibiotics even though they are a pain in the butt. I have not since cultured it but I also have not had a bronch since.

As for the picc line, I haven been told in the past if you wrap the arm completely in plastic wrap--I would do it like ten times-- and tape all edges with the tape lying half on the plastic and half on your child's arm-- you can form a water barrier. Also you would need to tape the seam where the plastic wrap came around. The nurses would always do this when I bathed and told me not to worry it was almost impossible to get wet through the wrap when done properly. My picc line is also too precious to have anything happen to it so I understand your concern but if your child is persistant about wanting in the water it is worth talking to your doctor about. There may even be some better ideas about how to keep it dry now. I was told that if the line did accidently get wet through the wrap just remove the old dressing and perform a sterile dressing change.

I have not actually went swimming with a picc line in though and I would also be scared to do it, so just check with your doctor before you do anything.<img src="i/expressions/face-icon-small-happy.gif" border="0">

Gingerloveslife · Jul 5, 2008

Hey Kelly. I too had NTB about 11 years ago. It was cultured after a bronch even though my regular cultures didn't show it either. It had dropped my FEV1 down about 30% and after I finished a whole year of treatment my lung function came back up. Thus you can see the importance of the antibiotics even though they are a pain in the butt. I have not since cultured it but I also have not had a bronch since.

As for the picc line, I haven been told in the past if you wrap the arm completely in plastic wrap--I would do it like ten times-- and tape all edges with the tape lying half on the plastic and half on your child's arm-- you can form a water barrier. Also you would need to tape the seam where the plastic wrap came around. The nurses would always do this when I bathed and told me not to worry it was almost impossible to get wet through the wrap when done properly. My picc line is also too precious to have anything happen to it so I understand your concern but if your child is persistant about wanting in the water it is worth talking to your doctor about. There may even be some better ideas about how to keep it dry now. I was told that if the line did accidently get wet through the wrap just remove the old dressing and perform a sterile dressing change.

I have not actually went swimming with a picc line in though and I would also be scared to do it, so just check with your doctor before you do anything.<img src="i/expressions/face-icon-small-happy.gif" border="0">

Gingerloveslife · Jul 5, 2008

Hey Kelly. I too had NTB about 11 years ago. It was cultured after a bronch even though my regular cultures didn't show it either. It had dropped my FEV1 down about 30% and after I finished a whole year of treatment my lung function came back up. Thus you can see the importance of the antibiotics even though they are a pain in the butt. I have not since cultured it but I also have not had a bronch since.

As for the picc line, I haven been told in the past if you wrap the arm completely in plastic wrap--I would do it like ten times-- and tape all edges with the tape lying half on the plastic and half on your child's arm-- you can form a water barrier. Also you would need to tape the seam where the plastic wrap came around. The nurses would always do this when I bathed and told me not to worry it was almost impossible to get wet through the wrap when done properly. My picc line is also too precious to have anything happen to it so I understand your concern but if your child is persistant about wanting in the water it is worth talking to your doctor about. There may even be some better ideas about how to keep it dry now. I was told that if the line did accidently get wet through the wrap just remove the old dressing and perform a sterile dressing change.

I have not actually went swimming with a picc line in though and I would also be scared to do it, so just check with your doctor before you do anything.<img src="i/expressions/face-icon-small-happy.gif" border="0">

Gingerloveslife · Jul 5, 2008

Hey Kelly. I too had NTB about 11 years ago. It was cultured after a bronch even though my regular cultures didn't show it either. It had dropped my FEV1 down about 30% and after I finished a whole year of treatment my lung function came back up. Thus you can see the importance of the antibiotics even though they are a pain in the butt. I have not since cultured it but I also have not had a bronch since.

As for the picc line, I haven been told in the past if you wrap the arm completely in plastic wrap--I would do it like ten times-- and tape all edges with the tape lying half on the plastic and half on your child's arm-- you can form a water barrier. Also you would need to tape the seam where the plastic wrap came around. The nurses would always do this when I bathed and told me not to worry it was almost impossible to get wet through the wrap when done properly. My picc line is also too precious to have anything happen to it so I understand your concern but if your child is persistant about wanting in the water it is worth talking to your doctor about. There may even be some better ideas about how to keep it dry now. I was told that if the line did accidently get wet through the wrap just remove the old dressing and perform a sterile dressing change.

I have not actually went swimming with a picc line in though and I would also be scared to do it, so just check with your doctor before you do anything.<img src="i/expressions/face-icon-small-happy.gif" border="0">

Gingerloveslife · Jul 5, 2008

Hey Kelly. I too had NTB about 11 years ago. It was cultured after a bronch even though my regular cultures didn't show it either. It had dropped my FEV1 down about 30% and after I finished a whole year of treatment my lung function came back up. Thus you can see the importance of the antibiotics even though they are a pain in the butt. I have not since cultured it but I also have not had a bronch since.
 
 As for the picc line, I haven been told in the past if you wrap the arm completely in plastic wrap--I would do it like ten times-- and tape all edges with the tape lying half on the plastic and half on your child's arm-- you can form a water barrier. Also you would need to tape the seam where the plastic wrap came around. The nurses would always do this when I bathed and told me not to worry it was almost impossible to get wet through the wrap when done properly. My picc line is also too precious to have anything happen to it so I understand your concern but if your child is persistant about wanting in the water it is worth talking to your doctor about. There may even be some better ideas about how to keep it dry now. I was told that if the line did accidently get wet through the wrap just remove the old dressing and perform a sterile dressing change.
 
 I have not actually went swimming with a picc line in though and I would also be scared to do it, so just check with your doctor before you do anything.<img src="i/expressions/face-icon-small-happy.gif" border="0">

NON-TUBERCULOUS MYCOBACTERIUM..?

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