Micobacterium abscessus

[wildchild]

Hey guys,

I am new to the forums. I'm 22 and my boyfriend, 24 has CF. We've been dating about 6 months now and are planning on getting married when I finish school (December, so hopefully no later than january!). Patrick has always been exceptionally healthy for a CFer; his doctors call his a mild version of the disease and have always said if his health continued thus that he could live as long as anyone else. Of course, even with this optimistic diagnosis, we know that the progressive nature of the disease makes no guarantees.

Anyway, two months ago he went into hospital with a high fever, feeling very crappy and tired. They ran a bunch of tests and it turns out he has Micobacterium abscessus. It's a microbacteria that lives in the lungs. The really unfair thing is that a CFpatient can only get it if they have healthy lungs. I don't know too much about it, except that he is on three very aggressive antibiotics for at least 8 weeks (and could be as long as 18 months) and that even if they kill most of it, he'll always have it and always have to take meds to keep it in check.

Anybody else come up against this? The CF was bad enough, but this makes things even scarier.

REA

 

[wildchild]

Hey guys,

I am new to the forums. I'm 22 and my boyfriend, 24 has CF. We've been dating about 6 months now and are planning on getting married when I finish school (December, so hopefully no later than january!). Patrick has always been exceptionally healthy for a CFer; his doctors call his a mild version of the disease and have always said if his health continued thus that he could live as long as anyone else. Of course, even with this optimistic diagnosis, we know that the progressive nature of the disease makes no guarantees.

Anyway, two months ago he went into hospital with a high fever, feeling very crappy and tired. They ran a bunch of tests and it turns out he has Micobacterium abscessus. It's a microbacteria that lives in the lungs. The really unfair thing is that a CFpatient can only get it if they have healthy lungs. I don't know too much about it, except that he is on three very aggressive antibiotics for at least 8 weeks (and could be as long as 18 months) and that even if they kill most of it, he'll always have it and always have to take meds to keep it in check.

Anybody else come up against this? The CF was bad enough, but this makes things even scarier.

REA

 

[wildchild]

Hey guys,

I am new to the forums. I'm 22 and my boyfriend, 24 has CF. We've been dating about 6 months now and are planning on getting married when I finish school (December, so hopefully no later than january!). Patrick has always been exceptionally healthy for a CFer; his doctors call his a mild version of the disease and have always said if his health continued thus that he could live as long as anyone else. Of course, even with this optimistic diagnosis, we know that the progressive nature of the disease makes no guarantees.

Anyway, two months ago he went into hospital with a high fever, feeling very crappy and tired. They ran a bunch of tests and it turns out he has Micobacterium abscessus. It's a microbacteria that lives in the lungs. The really unfair thing is that a CFpatient can only get it if they have healthy lungs. I don't know too much about it, except that he is on three very aggressive antibiotics for at least 8 weeks (and could be as long as 18 months) and that even if they kill most of it, he'll always have it and always have to take meds to keep it in check.

Anybody else come up against this? The CF was bad enough, but this makes things even scarier.

REA

 

[wildchild]

Hey guys,

I am new to the forums. I'm 22 and my boyfriend, 24 has CF. We've been dating about 6 months now and are planning on getting married when I finish school (December, so hopefully no later than january!). Patrick has always been exceptionally healthy for a CFer; his doctors call his a mild version of the disease and have always said if his health continued thus that he could live as long as anyone else. Of course, even with this optimistic diagnosis, we know that the progressive nature of the disease makes no guarantees.

Anyway, two months ago he went into hospital with a high fever, feeling very crappy and tired. They ran a bunch of tests and it turns out he has Micobacterium abscessus. It's a microbacteria that lives in the lungs. The really unfair thing is that a CFpatient can only get it if they have healthy lungs. I don't know too much about it, except that he is on three very aggressive antibiotics for at least 8 weeks (and could be as long as 18 months) and that even if they kill most of it, he'll always have it and always have to take meds to keep it in check.

Anybody else come up against this? The CF was bad enough, but this makes things even scarier.

REA

 

[wildchild]

Hey guys,

I am new to the forums. I'm 22 and my boyfriend, 24 has CF. We've been dating about 6 months now and are planning on getting married when I finish school (December, so hopefully no later than january!). Patrick has always been exceptionally healthy for a CFer; his doctors call his a mild version of the disease and have always said if his health continued thus that he could live as long as anyone else. Of course, even with this optimistic diagnosis, we know that the progressive nature of the disease makes no guarantees.

Anyway, two months ago he went into hospital with a high fever, feeling very crappy and tired. They ran a bunch of tests and it turns out he has Micobacterium abscessus. It's a microbacteria that lives in the lungs. The really unfair thing is that a CFpatient can only get it if they have healthy lungs. I don't know too much about it, except that he is on three very aggressive antibiotics for at least 8 weeks (and could be as long as 18 months) and that even if they kill most of it, he'll always have it and always have to take meds to keep it in check.

Anybody else come up against this? The CF was bad enough, but this makes things even scarier.

REA

 

[wildchild]

Hey guys,

I am new to the forums. I'm 22 and my boyfriend, 24 has CF. We've been dating about 6 months now and are planning on getting married when I finish school (December, so hopefully no later than january!). Patrick has always been exceptionally healthy for a CFer; his doctors call his a mild version of the disease and have always said if his health continued thus that he could live as long as anyone else. Of course, even with this optimistic diagnosis, we know that the progressive nature of the disease makes no guarantees.

Anyway, two months ago he went into hospital with a high fever, feeling very crappy and tired. They ran a bunch of tests and it turns out he has Micobacterium abscessus. It's a microbacteria that lives in the lungs. The really unfair thing is that a CFpatient can only get it if they have healthy lungs. I don't know too much about it, except that he is on three very aggressive antibiotics for at least 8 weeks (and could be as long as 18 months) and that even if they kill most of it, he'll always have it and always have to take meds to keep it in check.

Anybody else come up against this? The CF was bad enough, but this makes things even scarier.

REA

 

[Jane]

Yes, there are a few here with this bacterium. My boys have a different one. I'm sure you'll get some replies, but this is also a helpful site for mycobacteria questions and support:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
">http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
</a>
My boys were on imipenem IV, rifabutin and bactrim for 6 months and are currently doing well.

Good for you for asking questions. Its sounds like Patrick is lucky to have you.

 

[Jane]

Yes, there are a few here with this bacterium. My boys have a different one. I'm sure you'll get some replies, but this is also a helpful site for mycobacteria questions and support:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
">http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
</a>
My boys were on imipenem IV, rifabutin and bactrim for 6 months and are currently doing well.

Good for you for asking questions. Its sounds like Patrick is lucky to have you.

 

[Jane]

Yes, there are a few here with this bacterium. My boys have a different one. I'm sure you'll get some replies, but this is also a helpful site for mycobacteria questions and support:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
">http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
</a>
My boys were on imipenem IV, rifabutin and bactrim for 6 months and are currently doing well.

Good for you for asking questions. Its sounds like Patrick is lucky to have you.

 

[Jane]

Yes, there are a few here with this bacterium. My boys have a different one. I'm sure you'll get some replies, but this is also a helpful site for mycobacteria questions and support:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
">http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
</a>
My boys were on imipenem IV, rifabutin and bactrim for 6 months and are currently doing well.

Good for you for asking questions. Its sounds like Patrick is lucky to have you.

 

[Jane]

Yes, there are a few here with this bacterium. My boys have a different one. I'm sure you'll get some replies, but this is also a helpful site for mycobacteria questions and support:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
">http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
</a>
My boys were on imipenem IV, rifabutin and bactrim for 6 months and are currently doing well.

Good for you for asking questions. Its sounds like Patrick is lucky to have you.

 

[Jane]

Yes, there are a few here with this bacterium. My boys have a different one. I'm sure you'll get some replies, but this is also a helpful site for mycobacteria questions and support:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
">http://forums.ntminfo.com/ShowForum.aspx?ForumID=5
</a>
My boys were on imipenem IV, rifabutin and bactrim for 6 months and are currently doing well.

Good for you for asking questions. Its sounds like Patrick is lucky to have you.

 

[CowTown]

Hi REA,

Welcome to the site!

There have been a lot of threads about micobacteriums, but I'm having a tough time finding them right now. I did however just find these two:
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=21307&highlight_key=y
">http://forums.cysticfibrosis.c...21307&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=19051&highlight_key=y
">http://forums.cysticfibrosis.c...19051&highlight_key=y
</a>
There are several people here who have one of the many different micobacteriums. I have micobacterium avium complex (MAC). I'm on month 11 right now with 3 heavy meds. They deffinitely got my mac under control, but I do still culture it. I know Jane's boys were on their meds and recently stopped culturing it. I've heard the same thing, that eventhough your mac count can getlow, you will still have it. It kind of goes into 'remission' is how I think of it. The point of the heavy meds is to stop the damage that the micobacterium may be doing. If you can stop it and maintain lung function for while - then that's a good thing.

Good luck. Keep us posted.

 

[CowTown]

Hi REA,

Welcome to the site!

There have been a lot of threads about micobacteriums, but I'm having a tough time finding them right now. I did however just find these two:
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=21307&highlight_key=y
">http://forums.cysticfibrosis.c...21307&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=19051&highlight_key=y
">http://forums.cysticfibrosis.c...19051&highlight_key=y
</a>
There are several people here who have one of the many different micobacteriums. I have micobacterium avium complex (MAC). I'm on month 11 right now with 3 heavy meds. They deffinitely got my mac under control, but I do still culture it. I know Jane's boys were on their meds and recently stopped culturing it. I've heard the same thing, that eventhough your mac count can getlow, you will still have it. It kind of goes into 'remission' is how I think of it. The point of the heavy meds is to stop the damage that the micobacterium may be doing. If you can stop it and maintain lung function for while - then that's a good thing.

Good luck. Keep us posted.

 

[CowTown]

Hi REA,

Welcome to the site!

There have been a lot of threads about micobacteriums, but I'm having a tough time finding them right now. I did however just find these two:
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=21307&highlight_key=y
">http://forums.cysticfibrosis.c...21307&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=19051&highlight_key=y
">http://forums.cysticfibrosis.c...19051&highlight_key=y
</a>
There are several people here who have one of the many different micobacteriums. I have micobacterium avium complex (MAC). I'm on month 11 right now with 3 heavy meds. They deffinitely got my mac under control, but I do still culture it. I know Jane's boys were on their meds and recently stopped culturing it. I've heard the same thing, that eventhough your mac count can getlow, you will still have it. It kind of goes into 'remission' is how I think of it. The point of the heavy meds is to stop the damage that the micobacterium may be doing. If you can stop it and maintain lung function for while - then that's a good thing.

Good luck. Keep us posted.

 

[CowTown]

Hi REA,

Welcome to the site!

There have been a lot of threads about micobacteriums, but I'm having a tough time finding them right now. I did however just find these two:
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=21307&highlight_key=y
">http://forums.cysticfibrosis.c...21307&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=19051&highlight_key=y
">http://forums.cysticfibrosis.c...19051&highlight_key=y
</a>
There are several people here who have one of the many different micobacteriums. I have micobacterium avium complex (MAC). I'm on month 11 right now with 3 heavy meds. They deffinitely got my mac under control, but I do still culture it. I know Jane's boys were on their meds and recently stopped culturing it. I've heard the same thing, that eventhough your mac count can getlow, you will still have it. It kind of goes into 'remission' is how I think of it. The point of the heavy meds is to stop the damage that the micobacterium may be doing. If you can stop it and maintain lung function for while - then that's a good thing.

Good luck. Keep us posted.

 

[CowTown]

Hi REA,

Welcome to the site!

There have been a lot of threads about micobacteriums, but I'm having a tough time finding them right now. I did however just find these two:
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=21307&highlight_key=y
">http://forums.cysticfibrosis.c...21307&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=19051&highlight_key=y
">http://forums.cysticfibrosis.c...19051&highlight_key=y
</a>
There are several people here who have one of the many different micobacteriums. I have micobacterium avium complex (MAC). I'm on month 11 right now with 3 heavy meds. They deffinitely got my mac under control, but I do still culture it. I know Jane's boys were on their meds and recently stopped culturing it. I've heard the same thing, that eventhough your mac count can getlow, you will still have it. It kind of goes into 'remission' is how I think of it. The point of the heavy meds is to stop the damage that the micobacterium may be doing. If you can stop it and maintain lung function for while - then that's a good thing.

Good luck. Keep us posted.

 

[CowTown]

Hi REA,

Welcome to the site!

There have been a lot of threads about micobacteriums, but I'm having a tough time finding them right now. I did however just find these two:
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=21307&highlight_key=y
">http://forums.cysticfibrosis.c...21307&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=19051&highlight_key=y
">http://forums.cysticfibrosis.c...19051&highlight_key=y
</a>
There are several people here who have one of the many different micobacteriums. I have micobacterium avium complex (MAC). I'm on month 11 right now with 3 heavy meds. They deffinitely got my mac under control, but I do still culture it. I know Jane's boys were on their meds and recently stopped culturing it. I've heard the same thing, that eventhough your mac count can getlow, you will still have it. It kind of goes into 'remission' is how I think of it. The point of the heavy meds is to stop the damage that the micobacterium may be doing. If you can stop it and maintain lung function for while - then that's a good thing.

Good luck. Keep us posted.

 

[tbw18]

yes my son who is 18 has mycrobacterium abscesses he has had it for 2 years, we just finished iv amikican, cefoxtin, tygacil, for 6 weeks, we had gone for 9 weeks prior on iv and it again came back. he cant do these meds for long periods of time he becomes sick with c-diff which a bacterial infection from the meds they kill all the normal bacterial in the intestines, he has ringing in his ears while on amikican, so we usually stop between 6 and 9 weeks, I worry everyday that it could flare up again, he starts having low grade temps, and then he starts to cough up alot of junk, so we bascially know when we gotta do ivs again. just hang in there things seem bad but you can keep it bay for periods of time, just dont take steroids, the bug doesnt like them and it will really make it active. learned from experience on that one. just be there for them and let them know how much they are loved and it does seem to help alittle, I also pray every nite to please let stay away longer, there is no cure for this bug, it is resistant to so many antibiotics, so hang in there. I will be happy to chat with you at any time about it. tonight I will say a prayer for you to give you strength, love , and lots of faith.
_____________________________________________________________________
THE SUN RISES AND SETS IN THE EYES OF TBW18

 

[tbw18]

yes my son who is 18 has mycrobacterium abscesses he has had it for 2 years, we just finished iv amikican, cefoxtin, tygacil, for 6 weeks, we had gone for 9 weeks prior on iv and it again came back. he cant do these meds for long periods of time he becomes sick with c-diff which a bacterial infection from the meds they kill all the normal bacterial in the intestines, he has ringing in his ears while on amikican, so we usually stop between 6 and 9 weeks, I worry everyday that it could flare up again, he starts having low grade temps, and then he starts to cough up alot of junk, so we bascially know when we gotta do ivs again. just hang in there things seem bad but you can keep it bay for periods of time, just dont take steroids, the bug doesnt like them and it will really make it active. learned from experience on that one. just be there for them and let them know how much they are loved and it does seem to help alittle, I also pray every nite to please let stay away longer, there is no cure for this bug, it is resistant to so many antibiotics, so hang in there. I will be happy to chat with you at any time about it. tonight I will say a prayer for you to give you strength, love , and lots of faith.
_____________________________________________________________________
THE SUN RISES AND SETS IN THE EYES OF TBW18