NON-TUBERCULOUS MYCOBACTERIUM..?

donin · Dec 23, 2008

Julie,

Thank you for your kind reply.

In May when this episode began my son was very ill (he was away at college came home having lost 30 lbs and sounding/looking AWFUL). It took a week to figure out what he was growing. None of the IV antibiotics were touching it. Finally we were told mycobacterium chelonae. He stabilized, regained the weight and looked good. But his recovery plateaued and by the end of this semester he was losing weight and coughing more. The reports coming back from Denver showed that he was resistant to all but 2 (and a half...) IV antibiotics.

The original ID doc said that it couldn't be irradicated only held at bay with 6 months on/off the IVs. The CF doc (who is wonderful) brought in a second opinion ID doc who confirmed the first. The two ID docs said that mycobacterium chelonae has been renamed mycobacterium absecessus.

In my research I saw references to MA/MC limiting transplant options. The CF docs said that there are some transplant centers that are more conservative than others and won't transplant a patient with B Cepacia or MA - and others that will. They acknowledged that it increases the risk factors.

I'm so glad to learn that you have had minimal side effects and that you are able to be on the transplant list (I understand that in Canada everyone is assumed to be an organ donor unless they specify otherwise - in the US we are just the opposite. Backwards!).

donin · Dec 23, 2008

Julie,

Thank you for your kind reply.

In May when this episode began my son was very ill (he was away at college came home having lost 30 lbs and sounding/looking AWFUL). It took a week to figure out what he was growing. None of the IV antibiotics were touching it. Finally we were told mycobacterium chelonae. He stabilized, regained the weight and looked good. But his recovery plateaued and by the end of this semester he was losing weight and coughing more. The reports coming back from Denver showed that he was resistant to all but 2 (and a half...) IV antibiotics.

The original ID doc said that it couldn't be irradicated only held at bay with 6 months on/off the IVs. The CF doc (who is wonderful) brought in a second opinion ID doc who confirmed the first. The two ID docs said that mycobacterium chelonae has been renamed mycobacterium absecessus.

In my research I saw references to MA/MC limiting transplant options. The CF docs said that there are some transplant centers that are more conservative than others and won't transplant a patient with B Cepacia or MA - and others that will. They acknowledged that it increases the risk factors.

I'm so glad to learn that you have had minimal side effects and that you are able to be on the transplant list (I understand that in Canada everyone is assumed to be an organ donor unless they specify otherwise - in the US we are just the opposite. Backwards!).

donin · Dec 23, 2008

Julie,

Thank you for your kind reply.

In May when this episode began my son was very ill (he was away at college came home having lost 30 lbs and sounding/looking AWFUL). It took a week to figure out what he was growing. None of the IV antibiotics were touching it. Finally we were told mycobacterium chelonae. He stabilized, regained the weight and looked good. But his recovery plateaued and by the end of this semester he was losing weight and coughing more. The reports coming back from Denver showed that he was resistant to all but 2 (and a half...) IV antibiotics.

The original ID doc said that it couldn't be irradicated only held at bay with 6 months on/off the IVs. The CF doc (who is wonderful) brought in a second opinion ID doc who confirmed the first. The two ID docs said that mycobacterium chelonae has been renamed mycobacterium absecessus.

In my research I saw references to MA/MC limiting transplant options. The CF docs said that there are some transplant centers that are more conservative than others and won't transplant a patient with B Cepacia or MA - and others that will. They acknowledged that it increases the risk factors.

I'm so glad to learn that you have had minimal side effects and that you are able to be on the transplant list (I understand that in Canada everyone is assumed to be an organ donor unless they specify otherwise - in the US we are just the opposite. Backwards!).

donin · Dec 23, 2008

Julie,

Thank you for your kind reply.

In May when this episode began my son was very ill (he was away at college came home having lost 30 lbs and sounding/looking AWFUL). It took a week to figure out what he was growing. None of the IV antibiotics were touching it. Finally we were told mycobacterium chelonae. He stabilized, regained the weight and looked good. But his recovery plateaued and by the end of this semester he was losing weight and coughing more. The reports coming back from Denver showed that he was resistant to all but 2 (and a half...) IV antibiotics.

The original ID doc said that it couldn't be irradicated only held at bay with 6 months on/off the IVs. The CF doc (who is wonderful) brought in a second opinion ID doc who confirmed the first. The two ID docs said that mycobacterium chelonae has been renamed mycobacterium absecessus.

In my research I saw references to MA/MC limiting transplant options. The CF docs said that there are some transplant centers that are more conservative than others and won't transplant a patient with B Cepacia or MA - and others that will. They acknowledged that it increases the risk factors.

I'm so glad to learn that you have had minimal side effects and that you are able to be on the transplant list (I understand that in Canada everyone is assumed to be an organ donor unless they specify otherwise - in the US we are just the opposite. Backwards!).

donin · Dec 23, 2008

Julie,
 
 Thank you for your kind reply.
 
 In May when this episode began my son was very ill (he was away at college came home having lost 30 lbs and sounding/looking AWFUL). It took a week to figure out what he was growing. None of the IV antibiotics were touching it. Finally we were told mycobacterium chelonae. He stabilized, regained the weight and looked good. But his recovery plateaued and by the end of this semester he was losing weight and coughing more. The reports coming back from Denver showed that he was resistant to all but 2 (and a half...) IV antibiotics.
 
 The original ID doc said that it couldn't be irradicated only held at bay with 6 months on/off the IVs. The CF doc (who is wonderful) brought in a second opinion ID doc who confirmed the first. The two ID docs said that mycobacterium chelonae has been renamed mycobacterium absecessus.
 
 In my research I saw references to MA/MC limiting transplant options. The CF docs said that there are some transplant centers that are more conservative than others and won't transplant a patient with B Cepacia or MA - and others that will. They acknowledged that it increases the risk factors.
 
 I'm so glad to learn that you have had minimal side effects and that you are able to be on the transplant list (I understand that in Canada everyone is assumed to be an organ donor unless they specify otherwise - in the US we are just the opposite. Backwards!).

Sweetness81 · Dec 24, 2008

I had NTM about 3 years ago. It took me about a year to get over it. I was hospitalized three times during that year for coughing up so much blood and not being able to breathe at night because of the infection. I literally coughed from the moment my meds wore off in the morning until the very second the meds put me to sleep! It took along time for me to be diagnosed with NTM. It was painful, and rough. I was put on so many antibiotics at a time that I had to have two picc lines with two ports to be able to take them all in one day.

I know that it can be an aweful infection,and can be very difficult to get over, but it does get better. I honestly dont know which of the 8 antibiotics I was on that worked, but when I could eat and sleep again without coughing for 15 minutes, I felt so thankful that one or more of them had finally worked, and I had finally stopped coughing up blood. I dont really know how I got better, but I know that I was in the hospital alot, and was on alot of meds for the infection. It was just aweful, but I think that the best thing to do is just keep up with dr. visits. And make sure to keep a close eye on the infection and what meds are given for it. Hopefully you'll find the right combo to get over this.

Mother w/CF/IBS/Neuropathy/PTSD

Sweetness81 · Dec 24, 2008

I had NTM about 3 years ago. It took me about a year to get over it. I was hospitalized three times during that year for coughing up so much blood and not being able to breathe at night because of the infection. I literally coughed from the moment my meds wore off in the morning until the very second the meds put me to sleep! It took along time for me to be diagnosed with NTM. It was painful, and rough. I was put on so many antibiotics at a time that I had to have two picc lines with two ports to be able to take them all in one day.

I know that it can be an aweful infection,and can be very difficult to get over, but it does get better. I honestly dont know which of the 8 antibiotics I was on that worked, but when I could eat and sleep again without coughing for 15 minutes, I felt so thankful that one or more of them had finally worked, and I had finally stopped coughing up blood. I dont really know how I got better, but I know that I was in the hospital alot, and was on alot of meds for the infection. It was just aweful, but I think that the best thing to do is just keep up with dr. visits. And make sure to keep a close eye on the infection and what meds are given for it. Hopefully you'll find the right combo to get over this.

Mother w/CF/IBS/Neuropathy/PTSD

Sweetness81 · Dec 24, 2008

I had NTM about 3 years ago. It took me about a year to get over it. I was hospitalized three times during that year for coughing up so much blood and not being able to breathe at night because of the infection. I literally coughed from the moment my meds wore off in the morning until the very second the meds put me to sleep! It took along time for me to be diagnosed with NTM. It was painful, and rough. I was put on so many antibiotics at a time that I had to have two picc lines with two ports to be able to take them all in one day.

I know that it can be an aweful infection,and can be very difficult to get over, but it does get better. I honestly dont know which of the 8 antibiotics I was on that worked, but when I could eat and sleep again without coughing for 15 minutes, I felt so thankful that one or more of them had finally worked, and I had finally stopped coughing up blood. I dont really know how I got better, but I know that I was in the hospital alot, and was on alot of meds for the infection. It was just aweful, but I think that the best thing to do is just keep up with dr. visits. And make sure to keep a close eye on the infection and what meds are given for it. Hopefully you'll find the right combo to get over this.

Mother w/CF/IBS/Neuropathy/PTSD

Sweetness81 · Dec 24, 2008

I had NTM about 3 years ago. It took me about a year to get over it. I was hospitalized three times during that year for coughing up so much blood and not being able to breathe at night because of the infection. I literally coughed from the moment my meds wore off in the morning until the very second the meds put me to sleep! It took along time for me to be diagnosed with NTM. It was painful, and rough. I was put on so many antibiotics at a time that I had to have two picc lines with two ports to be able to take them all in one day.

I know that it can be an aweful infection,and can be very difficult to get over, but it does get better. I honestly dont know which of the 8 antibiotics I was on that worked, but when I could eat and sleep again without coughing for 15 minutes, I felt so thankful that one or more of them had finally worked, and I had finally stopped coughing up blood. I dont really know how I got better, but I know that I was in the hospital alot, and was on alot of meds for the infection. It was just aweful, but I think that the best thing to do is just keep up with dr. visits. And make sure to keep a close eye on the infection and what meds are given for it. Hopefully you'll find the right combo to get over this.

Mother w/CF/IBS/Neuropathy/PTSD

Sweetness81 · Dec 24, 2008

I had NTM about 3 years ago. It took me about a year to get over it. I was hospitalized three times during that year for coughing up so much blood and not being able to breathe at night because of the infection. I literally coughed from the moment my meds wore off in the morning until the very second the meds put me to sleep! It took along time for me to be diagnosed with NTM. It was painful, and rough. I was put on so many antibiotics at a time that I had to have two picc lines with two ports to be able to take them all in one day.
 
 I know that it can be an aweful infection,and can be very difficult to get over, but it does get better. I honestly dont know which of the 8 antibiotics I was on that worked, but when I could eat and sleep again without coughing for 15 minutes, I felt so thankful that one or more of them had finally worked, and I had finally stopped coughing up blood. I dont really know how I got better, but I know that I was in the hospital alot, and was on alot of meds for the infection. It was just aweful, but I think that the best thing to do is just keep up with dr. visits. And make sure to keep a close eye on the infection and what meds are given for it. Hopefully you'll find the right combo to get over this.
 
 Mother w/CF/IBS/Neuropathy/PTSD

mschumacher · Feb 13, 2009

I did some searching when I read Lauren's post that mycobacterium chelonae has been renamed mycobacterium abscessus. I can't find anything about that--might want to look into that. I'm going to do some more research on that.

Cody was just hospitalized for 22 days in September and October. His PFT's had dropped VERY remarkably over a period of 3-4 months, and his sputum culture that they suctioned as he was unable to get one coughed up (pretty congested--first time ever like that), cultured mycobacterium chelonae and mycobacterium abscessus. They later took another culture, after three weeks of IV's, and also did a "brushing" of his very deep lower right lobe while under sedation, and the deep culture also cultured mycobacterium avium complex, while the sputum culture that he was able to cough up again cultured the same other two. They have not started treating him yet, which is very frustrating to me, and I am thinking about going somewhere else to have them look at it. We just had another culture done and sent to Mayo on Tuesday, so I am anxious for those results.

He was not well for a few months before the first positive cultures. He was losing weight (and had NONE to lose!), he was very tired, not sleeping well, congested but was having trouble coughing as he felt like it was all "stuck" even after his breathing and vest treatments, would run occasional fevers, and was just over all feeling pretty crummy. I took him in several times between June and August, but would get sent home over and over, not even on antibiotics, which to me was very weird, as his docs are usually quite proactive. I got sick and had a hysterectomy at the end of August, and he got sicker and sicker--being in tennis just took everything out of him. I took him in to the walk-in clinic in mid-September, and they put him in the hospital, and it just mushroomed from there.

Like I said, we have not begun treatment yet, and he is still feeling pretty rotten. BUT, he has not gotten worse, and even has a good day here and there. Now, his teenage attitude--whole 'nother story there!

mschumacher · Feb 13, 2009

I did some searching when I read Lauren's post that mycobacterium chelonae has been renamed mycobacterium abscessus. I can't find anything about that--might want to look into that. I'm going to do some more research on that.

Cody was just hospitalized for 22 days in September and October. His PFT's had dropped VERY remarkably over a period of 3-4 months, and his sputum culture that they suctioned as he was unable to get one coughed up (pretty congested--first time ever like that), cultured mycobacterium chelonae and mycobacterium abscessus. They later took another culture, after three weeks of IV's, and also did a "brushing" of his very deep lower right lobe while under sedation, and the deep culture also cultured mycobacterium avium complex, while the sputum culture that he was able to cough up again cultured the same other two. They have not started treating him yet, which is very frustrating to me, and I am thinking about going somewhere else to have them look at it. We just had another culture done and sent to Mayo on Tuesday, so I am anxious for those results.

He was not well for a few months before the first positive cultures. He was losing weight (and had NONE to lose!), he was very tired, not sleeping well, congested but was having trouble coughing as he felt like it was all "stuck" even after his breathing and vest treatments, would run occasional fevers, and was just over all feeling pretty crummy. I took him in several times between June and August, but would get sent home over and over, not even on antibiotics, which to me was very weird, as his docs are usually quite proactive. I got sick and had a hysterectomy at the end of August, and he got sicker and sicker--being in tennis just took everything out of him. I took him in to the walk-in clinic in mid-September, and they put him in the hospital, and it just mushroomed from there.

Like I said, we have not begun treatment yet, and he is still feeling pretty rotten. BUT, he has not gotten worse, and even has a good day here and there. Now, his teenage attitude--whole 'nother story there!

mschumacher · Feb 13, 2009

I did some searching when I read Lauren's post that mycobacterium chelonae has been renamed mycobacterium abscessus. I can't find anything about that--might want to look into that. I'm going to do some more research on that.

Cody was just hospitalized for 22 days in September and October. His PFT's had dropped VERY remarkably over a period of 3-4 months, and his sputum culture that they suctioned as he was unable to get one coughed up (pretty congested--first time ever like that), cultured mycobacterium chelonae and mycobacterium abscessus. They later took another culture, after three weeks of IV's, and also did a "brushing" of his very deep lower right lobe while under sedation, and the deep culture also cultured mycobacterium avium complex, while the sputum culture that he was able to cough up again cultured the same other two. They have not started treating him yet, which is very frustrating to me, and I am thinking about going somewhere else to have them look at it. We just had another culture done and sent to Mayo on Tuesday, so I am anxious for those results.

He was not well for a few months before the first positive cultures. He was losing weight (and had NONE to lose!), he was very tired, not sleeping well, congested but was having trouble coughing as he felt like it was all "stuck" even after his breathing and vest treatments, would run occasional fevers, and was just over all feeling pretty crummy. I took him in several times between June and August, but would get sent home over and over, not even on antibiotics, which to me was very weird, as his docs are usually quite proactive. I got sick and had a hysterectomy at the end of August, and he got sicker and sicker--being in tennis just took everything out of him. I took him in to the walk-in clinic in mid-September, and they put him in the hospital, and it just mushroomed from there.

Like I said, we have not begun treatment yet, and he is still feeling pretty rotten. BUT, he has not gotten worse, and even has a good day here and there. Now, his teenage attitude--whole 'nother story there!

mschumacher · Feb 13, 2009

I did some searching when I read Lauren's post that mycobacterium chelonae has been renamed mycobacterium abscessus. I can't find anything about that--might want to look into that. I'm going to do some more research on that.

Cody was just hospitalized for 22 days in September and October. His PFT's had dropped VERY remarkably over a period of 3-4 months, and his sputum culture that they suctioned as he was unable to get one coughed up (pretty congested--first time ever like that), cultured mycobacterium chelonae and mycobacterium abscessus. They later took another culture, after three weeks of IV's, and also did a "brushing" of his very deep lower right lobe while under sedation, and the deep culture also cultured mycobacterium avium complex, while the sputum culture that he was able to cough up again cultured the same other two. They have not started treating him yet, which is very frustrating to me, and I am thinking about going somewhere else to have them look at it. We just had another culture done and sent to Mayo on Tuesday, so I am anxious for those results.

He was not well for a few months before the first positive cultures. He was losing weight (and had NONE to lose!), he was very tired, not sleeping well, congested but was having trouble coughing as he felt like it was all "stuck" even after his breathing and vest treatments, would run occasional fevers, and was just over all feeling pretty crummy. I took him in several times between June and August, but would get sent home over and over, not even on antibiotics, which to me was very weird, as his docs are usually quite proactive. I got sick and had a hysterectomy at the end of August, and he got sicker and sicker--being in tennis just took everything out of him. I took him in to the walk-in clinic in mid-September, and they put him in the hospital, and it just mushroomed from there.

Like I said, we have not begun treatment yet, and he is still feeling pretty rotten. BUT, he has not gotten worse, and even has a good day here and there. Now, his teenage attitude--whole 'nother story there!

mschumacher · Feb 13, 2009

I did some searching when I read Lauren's post that mycobacterium chelonae has been renamed mycobacterium abscessus. I can't find anything about that--might want to look into that. I'm going to do some more research on that.
 
 Cody was just hospitalized for 22 days in September and October. His PFT's had dropped VERY remarkably over a period of 3-4 months, and his sputum culture that they suctioned as he was unable to get one coughed up (pretty congested--first time ever like that), cultured mycobacterium chelonae and mycobacterium abscessus. They later took another culture, after three weeks of IV's, and also did a "brushing" of his very deep lower right lobe while under sedation, and the deep culture also cultured mycobacterium avium complex, while the sputum culture that he was able to cough up again cultured the same other two. They have not started treating him yet, which is very frustrating to me, and I am thinking about going somewhere else to have them look at it. We just had another culture done and sent to Mayo on Tuesday, so I am anxious for those results.
 
 He was not well for a few months before the first positive cultures. He was losing weight (and had NONE to lose!), he was very tired, not sleeping well, congested but was having trouble coughing as he felt like it was all "stuck" even after his breathing and vest treatments, would run occasional fevers, and was just over all feeling pretty crummy. I took him in several times between June and August, but would get sent home over and over, not even on antibiotics, which to me was very weird, as his docs are usually quite proactive. I got sick and had a hysterectomy at the end of August, and he got sicker and sicker--being in tennis just took everything out of him. I took him in to the walk-in clinic in mid-September, and they put him in the hospital, and it just mushroomed from there.
 
 Like I said, we have not begun treatment yet, and he is still feeling pretty rotten. BUT, he has not gotten worse, and even has a good day here and there. Now, his teenage attitude--whole 'nother story there!

Jane · Feb 13, 2009

It is so frustrating to wait while your child not feeling well. That happened to us too. It took many months but when Josh became really sick, they had to hustle to find something to work on the bug. After a few attempts they did find the right combo to get rid of it.

It is always a good idea to get a second opinion though. (mother's intuition is usually right).

Please let us know when you find out what the treatment will be. Not much advice about the teenage attitude- sorry its just something they have to grow out of<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Jane · Feb 13, 2009

It is so frustrating to wait while your child not feeling well. That happened to us too. It took many months but when Josh became really sick, they had to hustle to find something to work on the bug. After a few attempts they did find the right combo to get rid of it.

It is always a good idea to get a second opinion though. (mother's intuition is usually right).

Please let us know when you find out what the treatment will be. Not much advice about the teenage attitude- sorry its just something they have to grow out of<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Jane · Feb 13, 2009

It is so frustrating to wait while your child not feeling well. That happened to us too. It took many months but when Josh became really sick, they had to hustle to find something to work on the bug. After a few attempts they did find the right combo to get rid of it.

It is always a good idea to get a second opinion though. (mother's intuition is usually right).

Please let us know when you find out what the treatment will be. Not much advice about the teenage attitude- sorry its just something they have to grow out of<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Jane · Feb 13, 2009

It is so frustrating to wait while your child not feeling well. That happened to us too. It took many months but when Josh became really sick, they had to hustle to find something to work on the bug. After a few attempts they did find the right combo to get rid of it.

It is always a good idea to get a second opinion though. (mother's intuition is usually right).

Please let us know when you find out what the treatment will be. Not much advice about the teenage attitude- sorry its just something they have to grow out of<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Jane · Feb 13, 2009

It is so frustrating to wait while your child not feeling well. That happened to us too. It took many months but when Josh became really sick, they had to hustle to find something to work on the bug. After a few attempts they did find the right combo to get rid of it.
 
 It is always a good idea to get a second opinion though. (mother's intuition is usually right).
 
 Please let us know when you find out what the treatment will be. Not much advice about the teenage attitude- sorry its just something they have to grow out of<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

NON-TUBERCULOUS MYCOBACTERIUM..?

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