Anyone have MAC bacteria?

ladybug

New member
I cultured the avian one (MAC) about a year ago when I wasn't sick. The docs said they don't treat it unless you become sick with it... Usually, MAC sickness is different than an exacerbation, but often tough to tell the difference at first. I was told if your exacerbation isn't responding to IV abx (increase in lung function, feeling better, etc.) and you are running fevers, they usually figure the MAC is flaring up and treat it for a long time (i.e. months of IV abx)

Since I cultured it a year ago, it hasn't shown in any cultures until just recently when I was sick. Since my FEV1 went up and I wasn't spiking fevers and essentially got better without treating it, they assumed it was the p.a. causing the issues (along with some serious ashtma stuff but that's another story). Again, they said they'd only treat the MAC if it became a problem.

I think they don't like to treat it cause of the extensive medication regimine and the fact that (according to my CF clinic), it is very very common nowadays in adults with CF and they just watch it.

I was, however, immediately taken off the MWF routine of azithromycin, as that is one of the meds that can treat MAC so they don't want me to have resistance to it if its needed in the future. I'm curious whether the other postes with MAC were also taken off azithro maintenance?

Also, I was told recently by my doc that there really aren't many studies at all with regard to MAC in CF (though there are several on how to treat MAC in HIV, etc.). My doc specifically requested studies targeted to these types of bacteria in the future since they're showing up more and more regularly in our population. It would be great if that would happen in our lifetime. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
I cultured the avian one (MAC) about a year ago when I wasn't sick. The docs said they don't treat it unless you become sick with it... Usually, MAC sickness is different than an exacerbation, but often tough to tell the difference at first. I was told if your exacerbation isn't responding to IV abx (increase in lung function, feeling better, etc.) and you are running fevers, they usually figure the MAC is flaring up and treat it for a long time (i.e. months of IV abx)

Since I cultured it a year ago, it hasn't shown in any cultures until just recently when I was sick. Since my FEV1 went up and I wasn't spiking fevers and essentially got better without treating it, they assumed it was the p.a. causing the issues (along with some serious ashtma stuff but that's another story). Again, they said they'd only treat the MAC if it became a problem.

I think they don't like to treat it cause of the extensive medication regimine and the fact that (according to my CF clinic), it is very very common nowadays in adults with CF and they just watch it.

I was, however, immediately taken off the MWF routine of azithromycin, as that is one of the meds that can treat MAC so they don't want me to have resistance to it if its needed in the future. I'm curious whether the other postes with MAC were also taken off azithro maintenance?

Also, I was told recently by my doc that there really aren't many studies at all with regard to MAC in CF (though there are several on how to treat MAC in HIV, etc.). My doc specifically requested studies targeted to these types of bacteria in the future since they're showing up more and more regularly in our population. It would be great if that would happen in our lifetime. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
I cultured the avian one (MAC) about a year ago when I wasn't sick. The docs said they don't treat it unless you become sick with it... Usually, MAC sickness is different than an exacerbation, but often tough to tell the difference at first. I was told if your exacerbation isn't responding to IV abx (increase in lung function, feeling better, etc.) and you are running fevers, they usually figure the MAC is flaring up and treat it for a long time (i.e. months of IV abx)

Since I cultured it a year ago, it hasn't shown in any cultures until just recently when I was sick. Since my FEV1 went up and I wasn't spiking fevers and essentially got better without treating it, they assumed it was the p.a. causing the issues (along with some serious ashtma stuff but that's another story). Again, they said they'd only treat the MAC if it became a problem.

I think they don't like to treat it cause of the extensive medication regimine and the fact that (according to my CF clinic), it is very very common nowadays in adults with CF and they just watch it.

I was, however, immediately taken off the MWF routine of azithromycin, as that is one of the meds that can treat MAC so they don't want me to have resistance to it if its needed in the future. I'm curious whether the other postes with MAC were also taken off azithro maintenance?

Also, I was told recently by my doc that there really aren't many studies at all with regard to MAC in CF (though there are several on how to treat MAC in HIV, etc.). My doc specifically requested studies targeted to these types of bacteria in the future since they're showing up more and more regularly in our population. It would be great if that would happen in our lifetime. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
I cultured the avian one (MAC) about a year ago when I wasn't sick. The docs said they don't treat it unless you become sick with it... Usually, MAC sickness is different than an exacerbation, but often tough to tell the difference at first. I was told if your exacerbation isn't responding to IV abx (increase in lung function, feeling better, etc.) and you are running fevers, they usually figure the MAC is flaring up and treat it for a long time (i.e. months of IV abx)

Since I cultured it a year ago, it hasn't shown in any cultures until just recently when I was sick. Since my FEV1 went up and I wasn't spiking fevers and essentially got better without treating it, they assumed it was the p.a. causing the issues (along with some serious ashtma stuff but that's another story). Again, they said they'd only treat the MAC if it became a problem.

I think they don't like to treat it cause of the extensive medication regimine and the fact that (according to my CF clinic), it is very very common nowadays in adults with CF and they just watch it.

I was, however, immediately taken off the MWF routine of azithromycin, as that is one of the meds that can treat MAC so they don't want me to have resistance to it if its needed in the future. I'm curious whether the other postes with MAC were also taken off azithro maintenance?

Also, I was told recently by my doc that there really aren't many studies at all with regard to MAC in CF (though there are several on how to treat MAC in HIV, etc.). My doc specifically requested studies targeted to these types of bacteria in the future since they're showing up more and more regularly in our population. It would be great if that would happen in our lifetime. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
I cultured the avian one (MAC) about a year ago when I wasn't sick. The docs said they don't treat it unless you become sick with it... Usually, MAC sickness is different than an exacerbation, but often tough to tell the difference at first. I was told if your exacerbation isn't responding to IV abx (increase in lung function, feeling better, etc.) and you are running fevers, they usually figure the MAC is flaring up and treat it for a long time (i.e. months of IV abx)
<br />
<br />Since I cultured it a year ago, it hasn't shown in any cultures until just recently when I was sick. Since my FEV1 went up and I wasn't spiking fevers and essentially got better without treating it, they assumed it was the p.a. causing the issues (along with some serious ashtma stuff but that's another story). Again, they said they'd only treat the MAC if it became a problem.
<br />
<br />I think they don't like to treat it cause of the extensive medication regimine and the fact that (according to my CF clinic), it is very very common nowadays in adults with CF and they just watch it.
<br />
<br />I was, however, immediately taken off the MWF routine of azithromycin, as that is one of the meds that can treat MAC so they don't want me to have resistance to it if its needed in the future. I'm curious whether the other postes with MAC were also taken off azithro maintenance?
<br />
<br />Also, I was told recently by my doc that there really aren't many studies at all with regard to MAC in CF (though there are several on how to treat MAC in HIV, etc.). My doc specifically requested studies targeted to these types of bacteria in the future since they're showing up more and more regularly in our population. It would be great if that would happen in our lifetime. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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