CF + MAC

[TwistedTanya]

Yea, Mac is mysterious. I cultured it once but was feeling ok other than some low grade temps. now and then but then they loaded me with the triple antibiotics and then I started feeling even worse. I was so nauseated and my food would not stay long in my stomach. It would come out one way or the other. I started running high fevers and sweating. Got pnuemonia and a fungus and was then also treated for that. I went through a horrible 4 months in and out of the hospital. The weird thing is that I only cultured MAC that one time and it never showed up any of the other times. Makes me wonder if I ever had it or if I just got lucky and something got rid of it or is it just hiding out somewhere? I think they need to do some more research on this bug.

 

[TwistedTanya]

Yea, Mac is mysterious. I cultured it once but was feeling ok other than some low grade temps. now and then but then they loaded me with the triple antibiotics and then I started feeling even worse. I was so nauseated and my food would not stay long in my stomach. It would come out one way or the other. I started running high fevers and sweating. Got pnuemonia and a fungus and was then also treated for that. I went through a horrible 4 months in and out of the hospital. The weird thing is that I only cultured MAC that one time and it never showed up any of the other times. Makes me wonder if I ever had it or if I just got lucky and something got rid of it or is it just hiding out somewhere? I think they need to do some more research on this bug.

 

[TwistedTanya]

Yea, Mac is mysterious. I cultured it once but was feeling ok other than some low grade temps. now and then but then they loaded me with the triple antibiotics and then I started feeling even worse. I was so nauseated and my food would not stay long in my stomach. It would come out one way or the other. I started running high fevers and sweating. Got pnuemonia and a fungus and was then also treated for that. I went through a horrible 4 months in and out of the hospital. The weird thing is that I only cultured MAC that one time and it never showed up any of the other times. Makes me wonder if I ever had it or if I just got lucky and something got rid of it or is it just hiding out somewhere? I think they need to do some more research on this bug.

 

[TwistedTanya]

Yea, Mac is mysterious. I cultured it once but was feeling ok other than some low grade temps. now and then but then they loaded me with the triple antibiotics and then I started feeling even worse. I was so nauseated and my food would not stay long in my stomach. It would come out one way or the other. I started running high fevers and sweating. Got pnuemonia and a fungus and was then also treated for that. I went through a horrible 4 months in and out of the hospital. The weird thing is that I only cultured MAC that one time and it never showed up any of the other times. Makes me wonder if I ever had it or if I just got lucky and something got rid of it or is it just hiding out somewhere? I think they need to do some more research on this bug.

 

[TwistedTanya]

Yea, Mac is mysterious. I cultured it once but was feeling ok other than some low grade temps. now and then but then they loaded me with the triple antibiotics and then I started feeling even worse. I was so nauseated and my food would not stay long in my stomach. It would come out one way or the other. I started running high fevers and sweating. Got pnuemonia and a fungus and was then also treated for that. I went through a horrible 4 months in and out of the hospital. The weird thing is that I only cultured MAC that one time and it never showed up any of the other times. Makes me wonder if I ever had it or if I just got lucky and something got rid of it or is it just hiding out somewhere? I think they need to do some more research on this bug.

 

[ladybug]

i agree with tanya. i cultured MAC a few months ago and didn't have ANY odd symptoms. i was in for an exacerbation so they just did the 5 weeks of abx until my FEV1 went back up and then stopped treating me.

as far as i know, i'm not running fevers or anything cause of MAC and my docs said they do not treat MAC unless it is for sure the culprit and nothing else works to treat symptoms. they said its VERY hard to tell if its CF-infection (i.e. pseudo,staph,etc.) or MAC causing problems, so if you get better on the "usual" abx, it was probably not MAC.

i have since had MAC-free cultures without even treating it (knock wood)... but, they too told me it would always be there.

i'd been taken off azithro every M,W, and F, back when i cultured it cause apparently that is one of the only meds that works against MAC, however, since i've now had 2 MAC-free cultures, I asked at my last clinic if I could please go back on the maintenance azithro as I really think it helped my FEV1 stabalize. they reluctantly said it was my choice, as there isn't much research at all about how to treat MAC with regard to CF, whereas there are guidelines to treat it in HIV patients, etc.

my doc even said he wrote to the NIH suggesting far more studies on MAC and medications to treat it and HOW to treat it. its showing up more and more in the older poplulation, which generally means we "older" cfers get the "firsts" of things and treatment options. they're just really not sure how to go about treating MAC AND CF at the same time according to my doc. i mean they have some things that work (such as the months and months of abx as mentioned above), but also things they're just "speculating" such as taking patients off azithro. there just haven't been many MAC studies done.

anyway, this is my two cents. i too was taken back when MAC was first diagnosed, but my docs kinda said its very very common with CF and sometimes causes problems and sometimes not, just like many funguses, etc. that we culture at any given point in time.

best of luck to you! sorry if i rambled.

 

[ladybug]

i agree with tanya. i cultured MAC a few months ago and didn't have ANY odd symptoms. i was in for an exacerbation so they just did the 5 weeks of abx until my FEV1 went back up and then stopped treating me.

as far as i know, i'm not running fevers or anything cause of MAC and my docs said they do not treat MAC unless it is for sure the culprit and nothing else works to treat symptoms. they said its VERY hard to tell if its CF-infection (i.e. pseudo,staph,etc.) or MAC causing problems, so if you get better on the "usual" abx, it was probably not MAC.

i have since had MAC-free cultures without even treating it (knock wood)... but, they too told me it would always be there.

i'd been taken off azithro every M,W, and F, back when i cultured it cause apparently that is one of the only meds that works against MAC, however, since i've now had 2 MAC-free cultures, I asked at my last clinic if I could please go back on the maintenance azithro as I really think it helped my FEV1 stabalize. they reluctantly said it was my choice, as there isn't much research at all about how to treat MAC with regard to CF, whereas there are guidelines to treat it in HIV patients, etc.

my doc even said he wrote to the NIH suggesting far more studies on MAC and medications to treat it and HOW to treat it. its showing up more and more in the older poplulation, which generally means we "older" cfers get the "firsts" of things and treatment options. they're just really not sure how to go about treating MAC AND CF at the same time according to my doc. i mean they have some things that work (such as the months and months of abx as mentioned above), but also things they're just "speculating" such as taking patients off azithro. there just haven't been many MAC studies done.

anyway, this is my two cents. i too was taken back when MAC was first diagnosed, but my docs kinda said its very very common with CF and sometimes causes problems and sometimes not, just like many funguses, etc. that we culture at any given point in time.

best of luck to you! sorry if i rambled.

 

[ladybug]

i agree with tanya. i cultured MAC a few months ago and didn't have ANY odd symptoms. i was in for an exacerbation so they just did the 5 weeks of abx until my FEV1 went back up and then stopped treating me.

as far as i know, i'm not running fevers or anything cause of MAC and my docs said they do not treat MAC unless it is for sure the culprit and nothing else works to treat symptoms. they said its VERY hard to tell if its CF-infection (i.e. pseudo,staph,etc.) or MAC causing problems, so if you get better on the "usual" abx, it was probably not MAC.

i have since had MAC-free cultures without even treating it (knock wood)... but, they too told me it would always be there.

i'd been taken off azithro every M,W, and F, back when i cultured it cause apparently that is one of the only meds that works against MAC, however, since i've now had 2 MAC-free cultures, I asked at my last clinic if I could please go back on the maintenance azithro as I really think it helped my FEV1 stabalize. they reluctantly said it was my choice, as there isn't much research at all about how to treat MAC with regard to CF, whereas there are guidelines to treat it in HIV patients, etc.

my doc even said he wrote to the NIH suggesting far more studies on MAC and medications to treat it and HOW to treat it. its showing up more and more in the older poplulation, which generally means we "older" cfers get the "firsts" of things and treatment options. they're just really not sure how to go about treating MAC AND CF at the same time according to my doc. i mean they have some things that work (such as the months and months of abx as mentioned above), but also things they're just "speculating" such as taking patients off azithro. there just haven't been many MAC studies done.

anyway, this is my two cents. i too was taken back when MAC was first diagnosed, but my docs kinda said its very very common with CF and sometimes causes problems and sometimes not, just like many funguses, etc. that we culture at any given point in time.

best of luck to you! sorry if i rambled.

 

[ladybug]

i agree with tanya. i cultured MAC a few months ago and didn't have ANY odd symptoms. i was in for an exacerbation so they just did the 5 weeks of abx until my FEV1 went back up and then stopped treating me.

as far as i know, i'm not running fevers or anything cause of MAC and my docs said they do not treat MAC unless it is for sure the culprit and nothing else works to treat symptoms. they said its VERY hard to tell if its CF-infection (i.e. pseudo,staph,etc.) or MAC causing problems, so if you get better on the "usual" abx, it was probably not MAC.

i have since had MAC-free cultures without even treating it (knock wood)... but, they too told me it would always be there.

i'd been taken off azithro every M,W, and F, back when i cultured it cause apparently that is one of the only meds that works against MAC, however, since i've now had 2 MAC-free cultures, I asked at my last clinic if I could please go back on the maintenance azithro as I really think it helped my FEV1 stabalize. they reluctantly said it was my choice, as there isn't much research at all about how to treat MAC with regard to CF, whereas there are guidelines to treat it in HIV patients, etc.

my doc even said he wrote to the NIH suggesting far more studies on MAC and medications to treat it and HOW to treat it. its showing up more and more in the older poplulation, which generally means we "older" cfers get the "firsts" of things and treatment options. they're just really not sure how to go about treating MAC AND CF at the same time according to my doc. i mean they have some things that work (such as the months and months of abx as mentioned above), but also things they're just "speculating" such as taking patients off azithro. there just haven't been many MAC studies done.

anyway, this is my two cents. i too was taken back when MAC was first diagnosed, but my docs kinda said its very very common with CF and sometimes causes problems and sometimes not, just like many funguses, etc. that we culture at any given point in time.

best of luck to you! sorry if i rambled.

 

[ladybug]

i agree with tanya. i cultured MAC a few months ago and didn't have ANY odd symptoms. i was in for an exacerbation so they just did the 5 weeks of abx until my FEV1 went back up and then stopped treating me.
<br />
<br />as far as i know, i'm not running fevers or anything cause of MAC and my docs said they do not treat MAC unless it is for sure the culprit and nothing else works to treat symptoms. they said its VERY hard to tell if its CF-infection (i.e. pseudo,staph,etc.) or MAC causing problems, so if you get better on the "usual" abx, it was probably not MAC.
<br />
<br />i have since had MAC-free cultures without even treating it (knock wood)... but, they too told me it would always be there.
<br />
<br />i'd been taken off azithro every M,W, and F, back when i cultured it cause apparently that is one of the only meds that works against MAC, however, since i've now had 2 MAC-free cultures, I asked at my last clinic if I could please go back on the maintenance azithro as I really think it helped my FEV1 stabalize. they reluctantly said it was my choice, as there isn't much research at all about how to treat MAC with regard to CF, whereas there are guidelines to treat it in HIV patients, etc.
<br />
<br />my doc even said he wrote to the NIH suggesting far more studies on MAC and medications to treat it and HOW to treat it. its showing up more and more in the older poplulation, which generally means we "older" cfers get the "firsts" of things and treatment options. they're just really not sure how to go about treating MAC AND CF at the same time according to my doc. i mean they have some things that work (such as the months and months of abx as mentioned above), but also things they're just "speculating" such as taking patients off azithro. there just haven't been many MAC studies done.
<br />
<br />anyway, this is my two cents. i too was taken back when MAC was first diagnosed, but my docs kinda said its very very common with CF and sometimes causes problems and sometimes not, just like many funguses, etc. that we culture at any given point in time.
<br />
<br />best of luck to you! sorry if i rambled.

 

[Juliet]

Just an update... after that post I made in 9/08 my staph was flared up and not responding to my usual staph abx. The docs put me on IV abx to get the staph under control. The theory is that the long term MAC abx made the staph mutate somewhat. Hence the need for different IV abx for the staph. My MAC did show up in a sputum last fall. but it was only very small traces of it. The IV abx knocked out the staph and I've been antibiotic free since late September. Yahoo! It took a few months to get my strength back. My FEVs are back up in the low 70s now (better than the mid 50s where they were with the MAC flared up).

 

[Juliet]

Just an update... after that post I made in 9/08 my staph was flared up and not responding to my usual staph abx. The docs put me on IV abx to get the staph under control. The theory is that the long term MAC abx made the staph mutate somewhat. Hence the need for different IV abx for the staph. My MAC did show up in a sputum last fall. but it was only very small traces of it. The IV abx knocked out the staph and I've been antibiotic free since late September. Yahoo! It took a few months to get my strength back. My FEVs are back up in the low 70s now (better than the mid 50s where they were with the MAC flared up).

 

[Juliet]

Just an update... after that post I made in 9/08 my staph was flared up and not responding to my usual staph abx. The docs put me on IV abx to get the staph under control. The theory is that the long term MAC abx made the staph mutate somewhat. Hence the need for different IV abx for the staph. My MAC did show up in a sputum last fall. but it was only very small traces of it. The IV abx knocked out the staph and I've been antibiotic free since late September. Yahoo! It took a few months to get my strength back. My FEVs are back up in the low 70s now (better than the mid 50s where they were with the MAC flared up).

 

[Juliet]

Just an update... after that post I made in 9/08 my staph was flared up and not responding to my usual staph abx. The docs put me on IV abx to get the staph under control. The theory is that the long term MAC abx made the staph mutate somewhat. Hence the need for different IV abx for the staph. My MAC did show up in a sputum last fall. but it was only very small traces of it. The IV abx knocked out the staph and I've been antibiotic free since late September. Yahoo! It took a few months to get my strength back. My FEVs are back up in the low 70s now (better than the mid 50s where they were with the MAC flared up).

 

[Juliet]

Just an update... after that post I made in 9/08 my staph was flared up and not responding to my usual staph abx. The docs put me on IV abx to get the staph under control. The theory is that the long term MAC abx made the staph mutate somewhat. Hence the need for different IV abx for the staph. My MAC did show up in a sputum last fall. but it was only very small traces of it. The IV abx knocked out the staph and I've been antibiotic free since late September. Yahoo! It took a few months to get my strength back. My FEVs are back up in the low 70s now (better than the mid 50s where they were with the MAC flared up).