has anyone ever been treated for MAC??

CowTown · Jun 9, 2007

Hi Kris,

I have had mycobacterium avium complex (MAC) for about 9 years. It was present in tests for about 7 years but did not present any symptoms until two years ago. It's a slow growing bug. Once it really hit was when I started all the meds. I've been treated for it with a variety of meds for about 11 months and they deffinitely got my MAC under control. I have ran into a few side effects, dealth with them, switched meds, and will most likely continue treatment for a while longer.

My doctors consulted with the National Jewish Hospital, since they are the specialists (as Jem mentioned above). They are the gurus.

QUOTE:
My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right??
________

My doctor's opinion was to wait all those 7 years before treatment b/c the mac was not effecting me or showing up in CAT scans either (which is good). The reason they waited was b/c the drugs you have take are very powerful and of course have potential side effects. Some of the potentially more serious side effects can develop based on accumulative use, which is the basis for taking the meds. This is part of why the dilema to start treatment is a double-edged sword.

Once the bacteria started effecting my breathing and lung function was dropping at a fast rate, was when we all decided to start right away. That was a good plan for me, since I didn't want to cause any unnessessary issues before I needed it. Once you start treatment and know that you're fighting MAC, you need to stay on the drug for a certain amount of time in order to get control or maintain lung function. The goal once you start the meds is to get the MAC count in your sputum down or as low as possible, at which point you can hope to regain some of the lung function you may have lost while it was active. If the MAC count goes down, but starts to show up again down the road, you will need to start back on the meds. I know a few people on this site who have gone through several treatments, on and off, over the years. There are many people on here who can offer personal experience for different bacteriums and treatments.

I don't have any experience with these meds and pregnancy, but I'm sure the National Jewish Hospital would be able to advice you on that path. I also agree that the forum link Jane posted is a great resource.

Good luck!

CowTown · Jun 9, 2007

Hi Kris,

I have had mycobacterium avium complex (MAC) for about 9 years. It was present in tests for about 7 years but did not present any symptoms until two years ago. It's a slow growing bug. Once it really hit was when I started all the meds. I've been treated for it with a variety of meds for about 11 months and they deffinitely got my MAC under control. I have ran into a few side effects, dealth with them, switched meds, and will most likely continue treatment for a while longer.

My doctors consulted with the National Jewish Hospital, since they are the specialists (as Jem mentioned above). They are the gurus.

QUOTE:
My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right??
________

My doctor's opinion was to wait all those 7 years before treatment b/c the mac was not effecting me or showing up in CAT scans either (which is good). The reason they waited was b/c the drugs you have take are very powerful and of course have potential side effects. Some of the potentially more serious side effects can develop based on accumulative use, which is the basis for taking the meds. This is part of why the dilema to start treatment is a double-edged sword.

Once the bacteria started effecting my breathing and lung function was dropping at a fast rate, was when we all decided to start right away. That was a good plan for me, since I didn't want to cause any unnessessary issues before I needed it. Once you start treatment and know that you're fighting MAC, you need to stay on the drug for a certain amount of time in order to get control or maintain lung function. The goal once you start the meds is to get the MAC count in your sputum down or as low as possible, at which point you can hope to regain some of the lung function you may have lost while it was active. If the MAC count goes down, but starts to show up again down the road, you will need to start back on the meds. I know a few people on this site who have gone through several treatments, on and off, over the years. There are many people on here who can offer personal experience for different bacteriums and treatments.

I don't have any experience with these meds and pregnancy, but I'm sure the National Jewish Hospital would be able to advice you on that path. I also agree that the forum link Jane posted is a great resource.

Good luck!

CowTown · Jun 9, 2007

Hi Kris,

I have had mycobacterium avium complex (MAC) for about 9 years. It was present in tests for about 7 years but did not present any symptoms until two years ago. It's a slow growing bug. Once it really hit was when I started all the meds. I've been treated for it with a variety of meds for about 11 months and they deffinitely got my MAC under control. I have ran into a few side effects, dealth with them, switched meds, and will most likely continue treatment for a while longer.

My doctors consulted with the National Jewish Hospital, since they are the specialists (as Jem mentioned above). They are the gurus.

QUOTE:
My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right??
________

My doctor's opinion was to wait all those 7 years before treatment b/c the mac was not effecting me or showing up in CAT scans either (which is good). The reason they waited was b/c the drugs you have take are very powerful and of course have potential side effects. Some of the potentially more serious side effects can develop based on accumulative use, which is the basis for taking the meds. This is part of why the dilema to start treatment is a double-edged sword.

Once the bacteria started effecting my breathing and lung function was dropping at a fast rate, was when we all decided to start right away. That was a good plan for me, since I didn't want to cause any unnessessary issues before I needed it. Once you start treatment and know that you're fighting MAC, you need to stay on the drug for a certain amount of time in order to get control or maintain lung function. The goal once you start the meds is to get the MAC count in your sputum down or as low as possible, at which point you can hope to regain some of the lung function you may have lost while it was active. If the MAC count goes down, but starts to show up again down the road, you will need to start back on the meds. I know a few people on this site who have gone through several treatments, on and off, over the years. There are many people on here who can offer personal experience for different bacteriums and treatments.

I don't have any experience with these meds and pregnancy, but I'm sure the National Jewish Hospital would be able to advice you on that path. I also agree that the forum link Jane posted is a great resource.

Good luck!

CowTown · Jun 9, 2007

Hi Kris,

I have had mycobacterium avium complex (MAC) for about 9 years. It was present in tests for about 7 years but did not present any symptoms until two years ago. It's a slow growing bug. Once it really hit was when I started all the meds. I've been treated for it with a variety of meds for about 11 months and they deffinitely got my MAC under control. I have ran into a few side effects, dealth with them, switched meds, and will most likely continue treatment for a while longer.

My doctors consulted with the National Jewish Hospital, since they are the specialists (as Jem mentioned above). They are the gurus.

QUOTE:
My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right??
________

My doctor's opinion was to wait all those 7 years before treatment b/c the mac was not effecting me or showing up in CAT scans either (which is good). The reason they waited was b/c the drugs you have take are very powerful and of course have potential side effects. Some of the potentially more serious side effects can develop based on accumulative use, which is the basis for taking the meds. This is part of why the dilema to start treatment is a double-edged sword.

Once the bacteria started effecting my breathing and lung function was dropping at a fast rate, was when we all decided to start right away. That was a good plan for me, since I didn't want to cause any unnessessary issues before I needed it. Once you start treatment and know that you're fighting MAC, you need to stay on the drug for a certain amount of time in order to get control or maintain lung function. The goal once you start the meds is to get the MAC count in your sputum down or as low as possible, at which point you can hope to regain some of the lung function you may have lost while it was active. If the MAC count goes down, but starts to show up again down the road, you will need to start back on the meds. I know a few people on this site who have gone through several treatments, on and off, over the years. There are many people on here who can offer personal experience for different bacteriums and treatments.

I don't have any experience with these meds and pregnancy, but I'm sure the National Jewish Hospital would be able to advice you on that path. I also agree that the forum link Jane posted is a great resource.

Good luck!

CowTown · Jun 9, 2007

Hi Kris,

I have had mycobacterium avium complex (MAC) for about 9 years. It was present in tests for about 7 years but did not present any symptoms until two years ago. It's a slow growing bug. Once it really hit was when I started all the meds. I've been treated for it with a variety of meds for about 11 months and they deffinitely got my MAC under control. I have ran into a few side effects, dealth with them, switched meds, and will most likely continue treatment for a while longer.

My doctors consulted with the National Jewish Hospital, since they are the specialists (as Jem mentioned above). They are the gurus.

QUOTE:
My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right??
________

My doctor's opinion was to wait all those 7 years before treatment b/c the mac was not effecting me or showing up in CAT scans either (which is good). The reason they waited was b/c the drugs you have take are very powerful and of course have potential side effects. Some of the potentially more serious side effects can develop based on accumulative use, which is the basis for taking the meds. This is part of why the dilema to start treatment is a double-edged sword.

Once the bacteria started effecting my breathing and lung function was dropping at a fast rate, was when we all decided to start right away. That was a good plan for me, since I didn't want to cause any unnessessary issues before I needed it. Once you start treatment and know that you're fighting MAC, you need to stay on the drug for a certain amount of time in order to get control or maintain lung function. The goal once you start the meds is to get the MAC count in your sputum down or as low as possible, at which point you can hope to regain some of the lung function you may have lost while it was active. If the MAC count goes down, but starts to show up again down the road, you will need to start back on the meds. I know a few people on this site who have gone through several treatments, on and off, over the years. There are many people on here who can offer personal experience for different bacteriums and treatments.

I don't have any experience with these meds and pregnancy, but I'm sure the National Jewish Hospital would be able to advice you on that path. I also agree that the forum link Jane posted is a great resource.

Good luck!

CowTown · Jun 9, 2007

Hi Kris,

I have had mycobacterium avium complex (MAC) for about 9 years. It was present in tests for about 7 years but did not present any symptoms until two years ago. It's a slow growing bug. Once it really hit was when I started all the meds. I've been treated for it with a variety of meds for about 11 months and they deffinitely got my MAC under control. I have ran into a few side effects, dealth with them, switched meds, and will most likely continue treatment for a while longer.

My doctors consulted with the National Jewish Hospital, since they are the specialists (as Jem mentioned above). They are the gurus.

QUOTE:
My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right??
________

My doctor's opinion was to wait all those 7 years before treatment b/c the mac was not effecting me or showing up in CAT scans either (which is good). The reason they waited was b/c the drugs you have take are very powerful and of course have potential side effects. Some of the potentially more serious side effects can develop based on accumulative use, which is the basis for taking the meds. This is part of why the dilema to start treatment is a double-edged sword.

Once the bacteria started effecting my breathing and lung function was dropping at a fast rate, was when we all decided to start right away. That was a good plan for me, since I didn't want to cause any unnessessary issues before I needed it. Once you start treatment and know that you're fighting MAC, you need to stay on the drug for a certain amount of time in order to get control or maintain lung function. The goal once you start the meds is to get the MAC count in your sputum down or as low as possible, at which point you can hope to regain some of the lung function you may have lost while it was active. If the MAC count goes down, but starts to show up again down the road, you will need to start back on the meds. I know a few people on this site who have gone through several treatments, on and off, over the years. There are many people on here who can offer personal experience for different bacteriums and treatments.

I don't have any experience with these meds and pregnancy, but I'm sure the National Jewish Hospital would be able to advice you on that path. I also agree that the forum link Jane posted is a great resource.

Good luck!

TwistedTanya · Jun 21, 2007

I tested positive for MAC last fall but had been feeling fine. My CF doctor had me go to an Infectious Disease doctor and she put me on the 3 antibiotic combo. I didn't start feeling sick until a week and half after starting the meds. I was vomiting and running fevers and lost weight due to the nausea. The fevers continued daily and I would sweat like a pig everytime I slept so they finally had me go into the hospital. Never tested positve for the MAC again but started testing positive for Aspergilliosis. Went home on IV's for 3 weeks and developed pnuemonia and ended up back in the hospital with high fever and this time I was having severe respiratory problems. I spent the next few months in and out of the hospital, never staying out more than 2 or 3 weeks before getting sick again. I finally went to a new CF doctor and a new hospital and he was able to get me better in 2 weeks and I have not been back in for over 2 months now!!
So, I question if it is really worth going on the meds that have such bad side effects if you aren't having any problems. I think they might have been why I actually got so sick. Once I was off all these multiple drugs I was feeling better. It's hard to know what really happened but I have my suspisions. Best advice I can give you is to make sure you have a good doctor. Also, Protonix seemed to help with my nausea. I wish you the best luck!

TwistedTanya · Jun 21, 2007

I tested positive for MAC last fall but had been feeling fine. My CF doctor had me go to an Infectious Disease doctor and she put me on the 3 antibiotic combo. I didn't start feeling sick until a week and half after starting the meds. I was vomiting and running fevers and lost weight due to the nausea. The fevers continued daily and I would sweat like a pig everytime I slept so they finally had me go into the hospital. Never tested positve for the MAC again but started testing positive for Aspergilliosis. Went home on IV's for 3 weeks and developed pnuemonia and ended up back in the hospital with high fever and this time I was having severe respiratory problems. I spent the next few months in and out of the hospital, never staying out more than 2 or 3 weeks before getting sick again. I finally went to a new CF doctor and a new hospital and he was able to get me better in 2 weeks and I have not been back in for over 2 months now!!
So, I question if it is really worth going on the meds that have such bad side effects if you aren't having any problems. I think they might have been why I actually got so sick. Once I was off all these multiple drugs I was feeling better. It's hard to know what really happened but I have my suspisions. Best advice I can give you is to make sure you have a good doctor. Also, Protonix seemed to help with my nausea. I wish you the best luck!

TwistedTanya · Jun 21, 2007

I tested positive for MAC last fall but had been feeling fine. My CF doctor had me go to an Infectious Disease doctor and she put me on the 3 antibiotic combo. I didn't start feeling sick until a week and half after starting the meds. I was vomiting and running fevers and lost weight due to the nausea. The fevers continued daily and I would sweat like a pig everytime I slept so they finally had me go into the hospital. Never tested positve for the MAC again but started testing positive for Aspergilliosis. Went home on IV's for 3 weeks and developed pnuemonia and ended up back in the hospital with high fever and this time I was having severe respiratory problems. I spent the next few months in and out of the hospital, never staying out more than 2 or 3 weeks before getting sick again. I finally went to a new CF doctor and a new hospital and he was able to get me better in 2 weeks and I have not been back in for over 2 months now!!
So, I question if it is really worth going on the meds that have such bad side effects if you aren't having any problems. I think they might have been why I actually got so sick. Once I was off all these multiple drugs I was feeling better. It's hard to know what really happened but I have my suspisions. Best advice I can give you is to make sure you have a good doctor. Also, Protonix seemed to help with my nausea. I wish you the best luck!

TwistedTanya · Jun 21, 2007

I tested positive for MAC last fall but had been feeling fine. My CF doctor had me go to an Infectious Disease doctor and she put me on the 3 antibiotic combo. I didn't start feeling sick until a week and half after starting the meds. I was vomiting and running fevers and lost weight due to the nausea. The fevers continued daily and I would sweat like a pig everytime I slept so they finally had me go into the hospital. Never tested positve for the MAC again but started testing positive for Aspergilliosis. Went home on IV's for 3 weeks and developed pnuemonia and ended up back in the hospital with high fever and this time I was having severe respiratory problems. I spent the next few months in and out of the hospital, never staying out more than 2 or 3 weeks before getting sick again. I finally went to a new CF doctor and a new hospital and he was able to get me better in 2 weeks and I have not been back in for over 2 months now!!
So, I question if it is really worth going on the meds that have such bad side effects if you aren't having any problems. I think they might have been why I actually got so sick. Once I was off all these multiple drugs I was feeling better. It's hard to know what really happened but I have my suspisions. Best advice I can give you is to make sure you have a good doctor. Also, Protonix seemed to help with my nausea. I wish you the best luck!

TwistedTanya · Jun 21, 2007

I tested positive for MAC last fall but had been feeling fine. My CF doctor had me go to an Infectious Disease doctor and she put me on the 3 antibiotic combo. I didn't start feeling sick until a week and half after starting the meds. I was vomiting and running fevers and lost weight due to the nausea. The fevers continued daily and I would sweat like a pig everytime I slept so they finally had me go into the hospital. Never tested positve for the MAC again but started testing positive for Aspergilliosis. Went home on IV's for 3 weeks and developed pnuemonia and ended up back in the hospital with high fever and this time I was having severe respiratory problems. I spent the next few months in and out of the hospital, never staying out more than 2 or 3 weeks before getting sick again. I finally went to a new CF doctor and a new hospital and he was able to get me better in 2 weeks and I have not been back in for over 2 months now!!
So, I question if it is really worth going on the meds that have such bad side effects if you aren't having any problems. I think they might have been why I actually got so sick. Once I was off all these multiple drugs I was feeling better. It's hard to know what really happened but I have my suspisions. Best advice I can give you is to make sure you have a good doctor. Also, Protonix seemed to help with my nausea. I wish you the best luck!

TwistedTanya · Jun 21, 2007

I tested positive for MAC last fall but had been feeling fine. My CF doctor had me go to an Infectious Disease doctor and she put me on the 3 antibiotic combo. I didn't start feeling sick until a week and half after starting the meds. I was vomiting and running fevers and lost weight due to the nausea. The fevers continued daily and I would sweat like a pig everytime I slept so they finally had me go into the hospital. Never tested positve for the MAC again but started testing positive for Aspergilliosis. Went home on IV's for 3 weeks and developed pnuemonia and ended up back in the hospital with high fever and this time I was having severe respiratory problems. I spent the next few months in and out of the hospital, never staying out more than 2 or 3 weeks before getting sick again. I finally went to a new CF doctor and a new hospital and he was able to get me better in 2 weeks and I have not been back in for over 2 months now!!
So, I question if it is really worth going on the meds that have such bad side effects if you aren't having any problems. I think they might have been why I actually got so sick. Once I was off all these multiple drugs I was feeling better. It's hard to know what really happened but I have my suspisions. Best advice I can give you is to make sure you have a good doctor. Also, Protonix seemed to help with my nausea. I wish you the best luck!

krisjohn53223 · Jun 22, 2007