CF + MAC

[lostindreamz]

my dh was diagnosed with MAC (mycobacterium avium complex) last year when he had his first (and only) bronch. I was just wondering if anyone else here has it, has been through it, or has any insight on what we can expect.

his dr said that it will be treated until tranplant (if it happens) or possibly for the rest of his life.

he seems to have an extremely resistant strain. they say in all of the tests they did, there was only one drug that could combat it and that drug had horrible side effects and made him extremely sick (Trecator). he's on clarithromycin and ethambutol daily and it seems to stay at bay. aside from the intial findings in the bronch he hasn't cultured it since.

any words of wisdom?

 

[lostindreamz]

my dh was diagnosed with MAC (mycobacterium avium complex) last year when he had his first (and only) bronch. I was just wondering if anyone else here has it, has been through it, or has any insight on what we can expect.

his dr said that it will be treated until tranplant (if it happens) or possibly for the rest of his life.

he seems to have an extremely resistant strain. they say in all of the tests they did, there was only one drug that could combat it and that drug had horrible side effects and made him extremely sick (Trecator). he's on clarithromycin and ethambutol daily and it seems to stay at bay. aside from the intial findings in the bronch he hasn't cultured it since.

any words of wisdom?

 

[lostindreamz]

my dh was diagnosed with MAC (mycobacterium avium complex) last year when he had his first (and only) bronch. I was just wondering if anyone else here has it, has been through it, or has any insight on what we can expect.

his dr said that it will be treated until tranplant (if it happens) or possibly for the rest of his life.

he seems to have an extremely resistant strain. they say in all of the tests they did, there was only one drug that could combat it and that drug had horrible side effects and made him extremely sick (Trecator). he's on clarithromycin and ethambutol daily and it seems to stay at bay. aside from the intial findings in the bronch he hasn't cultured it since.

any words of wisdom?

 

[lostindreamz]

my dh was diagnosed with MAC (mycobacterium avium complex) last year when he had his first (and only) bronch. I was just wondering if anyone else here has it, has been through it, or has any insight on what we can expect.

his dr said that it will be treated until tranplant (if it happens) or possibly for the rest of his life.

he seems to have an extremely resistant strain. they say in all of the tests they did, there was only one drug that could combat it and that drug had horrible side effects and made him extremely sick (Trecator). he's on clarithromycin and ethambutol daily and it seems to stay at bay. aside from the intial findings in the bronch he hasn't cultured it since.

any words of wisdom?

 

[lostindreamz]

my dh was diagnosed with MAC (mycobacterium avium complex) last year when he had his first (and only) bronch. I was just wondering if anyone else here has it, has been through it, or has any insight on what we can expect.
<br />
<br />his dr said that it will be treated until tranplant (if it happens) or possibly for the rest of his life.
<br />
<br />he seems to have an extremely resistant strain. they say in all of the tests they did, there was only one drug that could combat it and that drug had horrible side effects and made him extremely sick (Trecator). he's on clarithromycin and ethambutol daily and it seems to stay at bay. aside from the intial findings in the bronch he hasn't cultured it since.
<br />
<br />any words of wisdom?

 

[mysterygrl19]

Mia,
I cultured out MAC about four years ago. It knocked me through a loop at first, I was bronched and then spent two weeks in the hospital with a 104 fever constantly. no fun. Over the next two years MAC continued to give me problems and I was on Clarithromycin, Ethambutol and Rifampin for several months at a time. Long periods of antibiotics (3-6 months seemed to help me best)
I continued to culture MAC throughout that time. My MAC mysteriously disappeared after I caught MRSA. The docs never gave me a good explanation as to why the MAC went away (they told me I could never get rid of it). It has not given me any problems since. Maybe the MRSA ate it?<img src="i/expressions/face-icon-small-confused.gif" border="0">
Good luck and I hope he feels better soon!
Heather 19 w/cf, CFRD

 

[mysterygrl19]

Mia,
I cultured out MAC about four years ago. It knocked me through a loop at first, I was bronched and then spent two weeks in the hospital with a 104 fever constantly. no fun. Over the next two years MAC continued to give me problems and I was on Clarithromycin, Ethambutol and Rifampin for several months at a time. Long periods of antibiotics (3-6 months seemed to help me best)
I continued to culture MAC throughout that time. My MAC mysteriously disappeared after I caught MRSA. The docs never gave me a good explanation as to why the MAC went away (they told me I could never get rid of it). It has not given me any problems since. Maybe the MRSA ate it?<img src="i/expressions/face-icon-small-confused.gif" border="0">
Good luck and I hope he feels better soon!
Heather 19 w/cf, CFRD

 

[mysterygrl19]

Mia,
I cultured out MAC about four years ago. It knocked me through a loop at first, I was bronched and then spent two weeks in the hospital with a 104 fever constantly. no fun. Over the next two years MAC continued to give me problems and I was on Clarithromycin, Ethambutol and Rifampin for several months at a time. Long periods of antibiotics (3-6 months seemed to help me best)
I continued to culture MAC throughout that time. My MAC mysteriously disappeared after I caught MRSA. The docs never gave me a good explanation as to why the MAC went away (they told me I could never get rid of it). It has not given me any problems since. Maybe the MRSA ate it?<img src="i/expressions/face-icon-small-confused.gif" border="0">
Good luck and I hope he feels better soon!
Heather 19 w/cf, CFRD

 

[mysterygrl19]

Mia,
I cultured out MAC about four years ago. It knocked me through a loop at first, I was bronched and then spent two weeks in the hospital with a 104 fever constantly. no fun. Over the next two years MAC continued to give me problems and I was on Clarithromycin, Ethambutol and Rifampin for several months at a time. Long periods of antibiotics (3-6 months seemed to help me best)
I continued to culture MAC throughout that time. My MAC mysteriously disappeared after I caught MRSA. The docs never gave me a good explanation as to why the MAC went away (they told me I could never get rid of it). It has not given me any problems since. Maybe the MRSA ate it?<img src="i/expressions/face-icon-small-confused.gif" border="0">
Good luck and I hope he feels better soon!
Heather 19 w/cf, CFRD

 

[mysterygrl19]

Mia,
<br />I cultured out MAC about four years ago. It knocked me through a loop at first, I was bronched and then spent two weeks in the hospital with a 104 fever constantly. no fun. Over the next two years MAC continued to give me problems and I was on Clarithromycin, Ethambutol and Rifampin for several months at a time. Long periods of antibiotics (3-6 months seemed to help me best)
<br />I continued to culture MAC throughout that time. My MAC mysteriously disappeared after I caught MRSA. The docs never gave me a good explanation as to why the MAC went away (they told me I could never get rid of it). It has not given me any problems since. Maybe the MRSA ate it?<img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />Good luck and I hope he feels better soon!
<br />Heather 19 w/cf, CFRD

 

[lostindreamz]

thank you so much for you insight.

the doctors that did the bronch weren't his normal doctors so when they found the MAC growing, they kind of freaked out. the way they approached him with it was very distressing to the both of us. they were under the impression that mac only showed up in hiv patients.

he's been doing quite well for the most part with it lately. he's been off the rifampin since march of this year as it wasn't doing anything but turning him many shades of orange.

 

[lostindreamz]

thank you so much for you insight.

the doctors that did the bronch weren't his normal doctors so when they found the MAC growing, they kind of freaked out. the way they approached him with it was very distressing to the both of us. they were under the impression that mac only showed up in hiv patients.

he's been doing quite well for the most part with it lately. he's been off the rifampin since march of this year as it wasn't doing anything but turning him many shades of orange.

 

[lostindreamz]

thank you so much for you insight.

the doctors that did the bronch weren't his normal doctors so when they found the MAC growing, they kind of freaked out. the way they approached him with it was very distressing to the both of us. they were under the impression that mac only showed up in hiv patients.

he's been doing quite well for the most part with it lately. he's been off the rifampin since march of this year as it wasn't doing anything but turning him many shades of orange.

 

[lostindreamz]

thank you so much for you insight.

the doctors that did the bronch weren't his normal doctors so when they found the MAC growing, they kind of freaked out. the way they approached him with it was very distressing to the both of us. they were under the impression that mac only showed up in hiv patients.

he's been doing quite well for the most part with it lately. he's been off the rifampin since march of this year as it wasn't doing anything but turning him many shades of orange.

 

[lostindreamz]

thank you so much for you insight.
<br />
<br />the doctors that did the bronch weren't his normal doctors so when they found the MAC growing, they kind of freaked out. the way they approached him with it was very distressing to the both of us. they were under the impression that mac only showed up in hiv patients.
<br />
<br />he's been doing quite well for the most part with it lately. he's been off the rifampin since march of this year as it wasn't doing anything but turning him many shades of orange.

 

[Juliet]

MAC really sucks. It totally wiped me out. I had high fevers, felt like crap and it gave me a noticeable reduction in lung function. I'd get winded walking across the room. I was DXD with MAC after I cultured it with a bronch in late 2006. At the time MAC didn't show up on sputum cultures. I was treated with Azithromycin, Ethambutol and Rifampin for 18 months. One year after my initial bronch I had a second bronch which cultured only my Staph Aureus (which I've had since the 1980s). I continued the 3 ABX for another 6 months after 'all clear' and then stopped treatment. I haven't cultured MAC since (though my Staph has been driving me nuts lately!) Knock on wood that the MAC stays GONE!

Between the MAC and the oral ABX I was so wiped out and exhausted all the time I was going crazy. My normal 5 hours sleep turned into 9 and I wasn't able to keep up with all my fun play stuff. it was just the drudgery of work and sleep. I still haven't fully bounced back to normal, and unfortunately because of my SOB (which is better than it was, but I never had before MAC!) I don't think I'll ever get fully back to my before state. <img src="">

At the time my pulmo doc (who wasn't a CF specialist because at the time I didn't know I had CF) was also of the opinion that you can't get rid of it. My CF docs think that sometimes if you catch it early enough before it's fully colonized you can eradicate it. I told them all that I wouldn't believe that it was impossible to get rid of until we had tried and failed. Hence the 18 straight months of ABX. So far all my sputum cultures have been clear, but I've only been off the MAC ABX for about 4 months now.

 

[Juliet]

MAC really sucks. It totally wiped me out. I had high fevers, felt like crap and it gave me a noticeable reduction in lung function. I'd get winded walking across the room. I was DXD with MAC after I cultured it with a bronch in late 2006. At the time MAC didn't show up on sputum cultures. I was treated with Azithromycin, Ethambutol and Rifampin for 18 months. One year after my initial bronch I had a second bronch which cultured only my Staph Aureus (which I've had since the 1980s). I continued the 3 ABX for another 6 months after 'all clear' and then stopped treatment. I haven't cultured MAC since (though my Staph has been driving me nuts lately!) Knock on wood that the MAC stays GONE!

Between the MAC and the oral ABX I was so wiped out and exhausted all the time I was going crazy. My normal 5 hours sleep turned into 9 and I wasn't able to keep up with all my fun play stuff. it was just the drudgery of work and sleep. I still haven't fully bounced back to normal, and unfortunately because of my SOB (which is better than it was, but I never had before MAC!) I don't think I'll ever get fully back to my before state. <img src="">

At the time my pulmo doc (who wasn't a CF specialist because at the time I didn't know I had CF) was also of the opinion that you can't get rid of it. My CF docs think that sometimes if you catch it early enough before it's fully colonized you can eradicate it. I told them all that I wouldn't believe that it was impossible to get rid of until we had tried and failed. Hence the 18 straight months of ABX. So far all my sputum cultures have been clear, but I've only been off the MAC ABX for about 4 months now.

 

[Juliet]

MAC really sucks. It totally wiped me out. I had high fevers, felt like crap and it gave me a noticeable reduction in lung function. I'd get winded walking across the room. I was DXD with MAC after I cultured it with a bronch in late 2006. At the time MAC didn't show up on sputum cultures. I was treated with Azithromycin, Ethambutol and Rifampin for 18 months. One year after my initial bronch I had a second bronch which cultured only my Staph Aureus (which I've had since the 1980s). I continued the 3 ABX for another 6 months after 'all clear' and then stopped treatment. I haven't cultured MAC since (though my Staph has been driving me nuts lately!) Knock on wood that the MAC stays GONE!

Between the MAC and the oral ABX I was so wiped out and exhausted all the time I was going crazy. My normal 5 hours sleep turned into 9 and I wasn't able to keep up with all my fun play stuff. it was just the drudgery of work and sleep. I still haven't fully bounced back to normal, and unfortunately because of my SOB (which is better than it was, but I never had before MAC!) I don't think I'll ever get fully back to my before state. <img src="">

At the time my pulmo doc (who wasn't a CF specialist because at the time I didn't know I had CF) was also of the opinion that you can't get rid of it. My CF docs think that sometimes if you catch it early enough before it's fully colonized you can eradicate it. I told them all that I wouldn't believe that it was impossible to get rid of until we had tried and failed. Hence the 18 straight months of ABX. So far all my sputum cultures have been clear, but I've only been off the MAC ABX for about 4 months now.

 

[Juliet]

MAC really sucks. It totally wiped me out. I had high fevers, felt like crap and it gave me a noticeable reduction in lung function. I'd get winded walking across the room. I was DXD with MAC after I cultured it with a bronch in late 2006. At the time MAC didn't show up on sputum cultures. I was treated with Azithromycin, Ethambutol and Rifampin for 18 months. One year after my initial bronch I had a second bronch which cultured only my Staph Aureus (which I've had since the 1980s). I continued the 3 ABX for another 6 months after 'all clear' and then stopped treatment. I haven't cultured MAC since (though my Staph has been driving me nuts lately!) Knock on wood that the MAC stays GONE!

Between the MAC and the oral ABX I was so wiped out and exhausted all the time I was going crazy. My normal 5 hours sleep turned into 9 and I wasn't able to keep up with all my fun play stuff. it was just the drudgery of work and sleep. I still haven't fully bounced back to normal, and unfortunately because of my SOB (which is better than it was, but I never had before MAC!) I don't think I'll ever get fully back to my before state. <img src="">

At the time my pulmo doc (who wasn't a CF specialist because at the time I didn't know I had CF) was also of the opinion that you can't get rid of it. My CF docs think that sometimes if you catch it early enough before it's fully colonized you can eradicate it. I told them all that I wouldn't believe that it was impossible to get rid of until we had tried and failed. Hence the 18 straight months of ABX. So far all my sputum cultures have been clear, but I've only been off the MAC ABX for about 4 months now.

 

[Juliet]

MAC really sucks. It totally wiped me out. I had high fevers, felt like crap and it gave me a noticeable reduction in lung function. I'd get winded walking across the room. I was DXD with MAC after I cultured it with a bronch in late 2006. At the time MAC didn't show up on sputum cultures. I was treated with Azithromycin, Ethambutol and Rifampin for 18 months. One year after my initial bronch I had a second bronch which cultured only my Staph Aureus (which I've had since the 1980s). I continued the 3 ABX for another 6 months after 'all clear' and then stopped treatment. I haven't cultured MAC since (though my Staph has been driving me nuts lately!) Knock on wood that the MAC stays GONE!
<br />
<br />Between the MAC and the oral ABX I was so wiped out and exhausted all the time I was going crazy. My normal 5 hours sleep turned into 9 and I wasn't able to keep up with all my fun play stuff. it was just the drudgery of work and sleep. I still haven't fully bounced back to normal, and unfortunately because of my SOB (which is better than it was, but I never had before MAC!) I don't think I'll ever get fully back to my before state. <img src="">
<br />
<br />At the time my pulmo doc (who wasn't a CF specialist because at the time I didn't know I had CF) was also of the opinion that you can't get rid of it. My CF docs think that sometimes if you catch it early enough before it's fully colonized you can eradicate it. I told them all that I wouldn't believe that it was impossible to get rid of until we had tried and failed. Hence the 18 straight months of ABX. So far all my sputum cultures have been clear, but I've only been off the MAC ABX for about 4 months now.