Question to others with Mycobacterias

CowTown · Aug 23, 2007

I have mycobacteria avium complex and have been treating it for about 1 year now. My last culture showed that it is definitely still there and lurking, which I was hoping it would have started to thin out and not show up in the cultures after so much treatment.

I was recently hospitalized for feeling short of breath and the IVs haven't done anything. I'm feeling the same as I did when I went in. I'm realizing now that I think this feeling is the MAC biting back again. It's that 'special' feeling that has me worried. It's been under control for a whole year until just recently, when I've noticed that I might be slipping again b/c of it.

Last year my doctors consulted with the National Jewish Medical Center in CO, so they were also involved in my case. I think I'm going to set an appt with them to see them in person.

I know there are many people on this site (too many to PM! lol) who have one of the many different types of mycobacterias and/or who have had it and no longer culture it, etc. Fortunately for everyone, I've pretty much only heard of stories on this site where people's MAC gets under control and they eventually stop culturing it.

So, I'm wondering if anyone has experience with treating it for a while and then it just continuing to take over? Has this happened to anyone, and how did you combat it? Did you figure a new med routine? Or has anyone just continued to go downhill from it?

Thanks for any advice or stories. It's such a downer.

CowTown · Aug 23, 2007

I have mycobacteria avium complex and have been treating it for about 1 year now. My last culture showed that it is definitely still there and lurking, which I was hoping it would have started to thin out and not show up in the cultures after so much treatment.

I was recently hospitalized for feeling short of breath and the IVs haven't done anything. I'm feeling the same as I did when I went in. I'm realizing now that I think this feeling is the MAC biting back again. It's that 'special' feeling that has me worried. It's been under control for a whole year until just recently, when I've noticed that I might be slipping again b/c of it.

Last year my doctors consulted with the National Jewish Medical Center in CO, so they were also involved in my case. I think I'm going to set an appt with them to see them in person.

I know there are many people on this site (too many to PM! lol) who have one of the many different types of mycobacterias and/or who have had it and no longer culture it, etc. Fortunately for everyone, I've pretty much only heard of stories on this site where people's MAC gets under control and they eventually stop culturing it.

So, I'm wondering if anyone has experience with treating it for a while and then it just continuing to take over? Has this happened to anyone, and how did you combat it? Did you figure a new med routine? Or has anyone just continued to go downhill from it?

Thanks for any advice or stories. It's such a downer.

CowTown · Aug 23, 2007

I have mycobacteria avium complex and have been treating it for about 1 year now. My last culture showed that it is definitely still there and lurking, which I was hoping it would have started to thin out and not show up in the cultures after so much treatment.

I was recently hospitalized for feeling short of breath and the IVs haven't done anything. I'm feeling the same as I did when I went in. I'm realizing now that I think this feeling is the MAC biting back again. It's that 'special' feeling that has me worried. It's been under control for a whole year until just recently, when I've noticed that I might be slipping again b/c of it.

Last year my doctors consulted with the National Jewish Medical Center in CO, so they were also involved in my case. I think I'm going to set an appt with them to see them in person.

I know there are many people on this site (too many to PM! lol) who have one of the many different types of mycobacterias and/or who have had it and no longer culture it, etc. Fortunately for everyone, I've pretty much only heard of stories on this site where people's MAC gets under control and they eventually stop culturing it.

So, I'm wondering if anyone has experience with treating it for a while and then it just continuing to take over? Has this happened to anyone, and how did you combat it? Did you figure a new med routine? Or has anyone just continued to go downhill from it?

Thanks for any advice or stories. It's such a downer.

CowTown · Aug 23, 2007

I have mycobacteria avium complex and have been treating it for about 1 year now. My last culture showed that it is definitely still there and lurking, which I was hoping it would have started to thin out and not show up in the cultures after so much treatment.

I was recently hospitalized for feeling short of breath and the IVs haven't done anything. I'm feeling the same as I did when I went in. I'm realizing now that I think this feeling is the MAC biting back again. It's that 'special' feeling that has me worried. It's been under control for a whole year until just recently, when I've noticed that I might be slipping again b/c of it.

Last year my doctors consulted with the National Jewish Medical Center in CO, so they were also involved in my case. I think I'm going to set an appt with them to see them in person.

I know there are many people on this site (too many to PM! lol) who have one of the many different types of mycobacterias and/or who have had it and no longer culture it, etc. Fortunately for everyone, I've pretty much only heard of stories on this site where people's MAC gets under control and they eventually stop culturing it.

So, I'm wondering if anyone has experience with treating it for a while and then it just continuing to take over? Has this happened to anyone, and how did you combat it? Did you figure a new med routine? Or has anyone just continued to go downhill from it?

Thanks for any advice or stories. It's such a downer.

CowTown · Aug 23, 2007

I have mycobacteria avium complex and have been treating it for about 1 year now. My last culture showed that it is definitely still there and lurking, which I was hoping it would have started to thin out and not show up in the cultures after so much treatment.

I was recently hospitalized for feeling short of breath and the IVs haven't done anything. I'm feeling the same as I did when I went in. I'm realizing now that I think this feeling is the MAC biting back again. It's that 'special' feeling that has me worried. It's been under control for a whole year until just recently, when I've noticed that I might be slipping again b/c of it.

Last year my doctors consulted with the National Jewish Medical Center in CO, so they were also involved in my case. I think I'm going to set an appt with them to see them in person.

I know there are many people on this site (too many to PM! lol) who have one of the many different types of mycobacterias and/or who have had it and no longer culture it, etc. Fortunately for everyone, I've pretty much only heard of stories on this site where people's MAC gets under control and they eventually stop culturing it.

So, I'm wondering if anyone has experience with treating it for a while and then it just continuing to take over? Has this happened to anyone, and how did you combat it? Did you figure a new med routine? Or has anyone just continued to go downhill from it?

Thanks for any advice or stories. It's such a downer.

DarbSkull · Aug 23, 2007

Yeah, I used to culture myco avium. For a while my doctors didn't treat it but when I switched to my current doc he decided it was time to treat it. I took 3 oral antibiotics for 2 years and I haven't cultured it since. It's been about a year since I finished those meds. I can figure out what meds I was taking if that matters to you...

DarbSkull · Aug 23, 2007

Yeah, I used to culture myco avium. For a while my doctors didn't treat it but when I switched to my current doc he decided it was time to treat it. I took 3 oral antibiotics for 2 years and I haven't cultured it since. It's been about a year since I finished those meds. I can figure out what meds I was taking if that matters to you...

DarbSkull · Aug 23, 2007

Yeah, I used to culture myco avium. For a while my doctors didn't treat it but when I switched to my current doc he decided it was time to treat it. I took 3 oral antibiotics for 2 years and I haven't cultured it since. It's been about a year since I finished those meds. I can figure out what meds I was taking if that matters to you...

DarbSkull · Aug 23, 2007

Yeah, I used to culture myco avium. For a while my doctors didn't treat it but when I switched to my current doc he decided it was time to treat it. I took 3 oral antibiotics for 2 years and I haven't cultured it since. It's been about a year since I finished those meds. I can figure out what meds I was taking if that matters to you...

DarbSkull · Aug 23, 2007

Yeah, I used to culture myco avium. For a while my doctors didn't treat it but when I switched to my current doc he decided it was time to treat it. I took 3 oral antibiotics for 2 years and I haven't cultured it since. It's been about a year since I finished those meds. I can figure out what meds I was taking if that matters to you...

CowTown · Aug 23, 2007

Hi Darby, Nice to hear that yours has gone away. That seems like a common thing - which is so awesome. I wish I could say the same. I have noticed though that for some people I've talked to here, it can take up to 2 years before it stops showing up. I'm only on 1 year, but as I mentioned I think it's starting to take hold again, which sucks since I'm on the right meds! Blahhhhh. I'll just hope for the same results as you.

CowTown · Aug 23, 2007

Hi Darby, Nice to hear that yours has gone away. That seems like a common thing - which is so awesome. I wish I could say the same. I have noticed though that for some people I've talked to here, it can take up to 2 years before it stops showing up. I'm only on 1 year, but as I mentioned I think it's starting to take hold again, which sucks since I'm on the right meds! Blahhhhh. I'll just hope for the same results as you.

CowTown · Aug 23, 2007

Hi Darby, Nice to hear that yours has gone away. That seems like a common thing - which is so awesome. I wish I could say the same. I have noticed though that for some people I've talked to here, it can take up to 2 years before it stops showing up. I'm only on 1 year, but as I mentioned I think it's starting to take hold again, which sucks since I'm on the right meds! Blahhhhh. I'll just hope for the same results as you.

CowTown · Aug 23, 2007

Hi Darby, Nice to hear that yours has gone away. That seems like a common thing - which is so awesome. I wish I could say the same. I have noticed though that for some people I've talked to here, it can take up to 2 years before it stops showing up. I'm only on 1 year, but as I mentioned I think it's starting to take hold again, which sucks since I'm on the right meds! Blahhhhh. I'll just hope for the same results as you.

CowTown · Aug 23, 2007

Hi Darby, Nice to hear that yours has gone away. That seems like a common thing - which is so awesome. I wish I could say the same. I have noticed though that for some people I've talked to here, it can take up to 2 years before it stops showing up. I'm only on 1 year, but as I mentioned I think it's starting to take hold again, which sucks since I'm on the right meds! Blahhhhh. I'll just hope for the same results as you.

CowTown · Aug 23, 2007