Burkholderia Cepacia...

[JustDucky]

Hi Josh. Regina pretty much said it in a nutshell. I have B. cepacia, but haven't cultured it in almost a year. I had type II (I think) or multivorans and B. stabilis. After intensive IV therapy (trust me, I was on antibiotics more than I was off, it was brutal) I am not culturing it but it doesn't mean that isn't still hanging out in my crusty lungs. I cultured this bug 3 years ago and cultured it every time for a little over two years. I hope that it never grows back as I was pretty sick.
I am also very happy that you are asking more questions, it is much better to know than not so that you can be more active in your care. Learning that you have these bugs are a real blow and hard to deal with, but people fare differently with them. Some don't have any real problems, yet others succumb...it is a wide range.
Your doctor should have the information as to what genomovar or type of cepacia that you have. There are many types, I believe there about 9 genomovars: B. cepacia, B. multivorans, B. cenocepacia, B. vietnamiensis, B. stabilis, B. ambifaria, B. dolosa, B. anthina, and B. pyrrocinia. Cenocepacia tends to be the most virulent from what I understand.
I hope this helps.
Jenn

 

[JustDucky]

Hi Josh. Regina pretty much said it in a nutshell. I have B. cepacia, but haven't cultured it in almost a year. I had type II (I think) or multivorans and B. stabilis. After intensive IV therapy (trust me, I was on antibiotics more than I was off, it was brutal) I am not culturing it but it doesn't mean that isn't still hanging out in my crusty lungs. I cultured this bug 3 years ago and cultured it every time for a little over two years. I hope that it never grows back as I was pretty sick.
I am also very happy that you are asking more questions, it is much better to know than not so that you can be more active in your care. Learning that you have these bugs are a real blow and hard to deal with, but people fare differently with them. Some don't have any real problems, yet others succumb...it is a wide range.
Your doctor should have the information as to what genomovar or type of cepacia that you have. There are many types, I believe there about 9 genomovars: B. cepacia, B. multivorans, B. cenocepacia, B. vietnamiensis, B. stabilis, B. ambifaria, B. dolosa, B. anthina, and B. pyrrocinia. Cenocepacia tends to be the most virulent from what I understand.
I hope this helps.
Jenn

 

[JustDucky]

Hi Josh. Regina pretty much said it in a nutshell. I have B. cepacia, but haven't cultured it in almost a year. I had type II (I think) or multivorans and B. stabilis. After intensive IV therapy (trust me, I was on antibiotics more than I was off, it was brutal) I am not culturing it but it doesn't mean that isn't still hanging out in my crusty lungs. I cultured this bug 3 years ago and cultured it every time for a little over two years. I hope that it never grows back as I was pretty sick.
I am also very happy that you are asking more questions, it is much better to know than not so that you can be more active in your care. Learning that you have these bugs are a real blow and hard to deal with, but people fare differently with them. Some don't have any real problems, yet others succumb...it is a wide range.
Your doctor should have the information as to what genomovar or type of cepacia that you have. There are many types, I believe there about 9 genomovars: B. cepacia, B. multivorans, B. cenocepacia, B. vietnamiensis, B. stabilis, B. ambifaria, B. dolosa, B. anthina, and B. pyrrocinia. Cenocepacia tends to be the most virulent from what I understand.
I hope this helps.
Jenn

 

[JustDucky]

Hi Josh. Regina pretty much said it in a nutshell. I have B. cepacia, but haven't cultured it in almost a year. I had type II (I think) or multivorans and B. stabilis. After intensive IV therapy (trust me, I was on antibiotics more than I was off, it was brutal) I am not culturing it but it doesn't mean that isn't still hanging out in my crusty lungs. I cultured this bug 3 years ago and cultured it every time for a little over two years. I hope that it never grows back as I was pretty sick.
I am also very happy that you are asking more questions, it is much better to know than not so that you can be more active in your care. Learning that you have these bugs are a real blow and hard to deal with, but people fare differently with them. Some don't have any real problems, yet others succumb...it is a wide range.
Your doctor should have the information as to what genomovar or type of cepacia that you have. There are many types, I believe there about 9 genomovars: B. cepacia, B. multivorans, B. cenocepacia, B. vietnamiensis, B. stabilis, B. ambifaria, B. dolosa, B. anthina, and B. pyrrocinia. Cenocepacia tends to be the most virulent from what I understand.
I hope this helps.
Jenn

 

[JustDucky]

Hi Josh. Regina pretty much said it in a nutshell. I have B. cepacia, but haven't cultured it in almost a year. I had type II (I think) or multivorans and B. stabilis. After intensive IV therapy (trust me, I was on antibiotics more than I was off, it was brutal) I am not culturing it but it doesn't mean that isn't still hanging out in my crusty lungs. I cultured this bug 3 years ago and cultured it every time for a little over two years. I hope that it never grows back as I was pretty sick.
<br />I am also very happy that you are asking more questions, it is much better to know than not so that you can be more active in your care. Learning that you have these bugs are a real blow and hard to deal with, but people fare differently with them. Some don't have any real problems, yet others succumb...it is a wide range.
<br />Your doctor should have the information as to what genomovar or type of cepacia that you have. There are many types, I believe there about 9 genomovars: B. cepacia, B. multivorans, B. cenocepacia, B. vietnamiensis, B. stabilis, B. ambifaria, B. dolosa, B. anthina, and B. pyrrocinia. Cenocepacia tends to be the most virulent from what I understand.
<br />I hope this helps.
<br />Jenn

 

[mamaScarlett]

hi josh,
fyi you're not depressing at all, you're looking for answers and yes cf sucks. but getting informed and fighting back is the best way to deal with this. getting accurate info should also help allay fears you may have. i'd suggest going to your personal doc for the most accurate info reg cepacia bc it is so case by case specific.
i have b. cepacia. i first cultured it when i was about 12. i'm 27 now and have a 2.5 year old daughter. my pfts are better than they were when i was 17, so i guess thats pretty good.
cepacia is truly different for each person. there's even 'theories'- mind you just theories-that cepacia can help keep other strain of bac at bay. i think this is true for me.
i never have problems with my cep. more so with mrsa actually.

 

[mamaScarlett]

hi josh,
fyi you're not depressing at all, you're looking for answers and yes cf sucks. but getting informed and fighting back is the best way to deal with this. getting accurate info should also help allay fears you may have. i'd suggest going to your personal doc for the most accurate info reg cepacia bc it is so case by case specific.
i have b. cepacia. i first cultured it when i was about 12. i'm 27 now and have a 2.5 year old daughter. my pfts are better than they were when i was 17, so i guess thats pretty good.
cepacia is truly different for each person. there's even 'theories'- mind you just theories-that cepacia can help keep other strain of bac at bay. i think this is true for me.
i never have problems with my cep. more so with mrsa actually.

 

[mamaScarlett]

hi josh,
fyi you're not depressing at all, you're looking for answers and yes cf sucks. but getting informed and fighting back is the best way to deal with this. getting accurate info should also help allay fears you may have. i'd suggest going to your personal doc for the most accurate info reg cepacia bc it is so case by case specific.
i have b. cepacia. i first cultured it when i was about 12. i'm 27 now and have a 2.5 year old daughter. my pfts are better than they were when i was 17, so i guess thats pretty good.
cepacia is truly different for each person. there's even 'theories'- mind you just theories-that cepacia can help keep other strain of bac at bay. i think this is true for me.
i never have problems with my cep. more so with mrsa actually.

 

[mamaScarlett]

hi josh,
fyi you're not depressing at all, you're looking for answers and yes cf sucks. but getting informed and fighting back is the best way to deal with this. getting accurate info should also help allay fears you may have. i'd suggest going to your personal doc for the most accurate info reg cepacia bc it is so case by case specific.
i have b. cepacia. i first cultured it when i was about 12. i'm 27 now and have a 2.5 year old daughter. my pfts are better than they were when i was 17, so i guess thats pretty good.
cepacia is truly different for each person. there's even 'theories'- mind you just theories-that cepacia can help keep other strain of bac at bay. i think this is true for me.
i never have problems with my cep. more so with mrsa actually.

 

[mamaScarlett]

hi josh,
<br />fyi you're not depressing at all, you're looking for answers and yes cf sucks. but getting informed and fighting back is the best way to deal with this. getting accurate info should also help allay fears you may have. i'd suggest going to your personal doc for the most accurate info reg cepacia bc it is so case by case specific.
<br />i have b. cepacia. i first cultured it when i was about 12. i'm 27 now and have a 2.5 year old daughter. my pfts are better than they were when i was 17, so i guess thats pretty good.
<br />cepacia is truly different for each person. there's even 'theories'- mind you just theories-that cepacia can help keep other strain of bac at bay. i think this is true for me.
<br />i never have problems with my cep. more so with mrsa actually.