Cepacia

C

Crazyangel

New member
Ive been colonised with Pseudomonas ever since i was a teen and i always thought that was the worst bug anyone with cf could have

but ive been noticing pwcf talking about cepacia and this bug seems like the worst bug pwcf can have!

so i just want to know what are the symptoms of cepacia etc

and can somebody explain to me if its true that pseudomonas keeps cepacia away or that pseudo can turn into cepacia (because cepacia is a form of pseudo right?)

Thank you
 
C

Crazyangel

New member
Ive been colonised with Pseudomonas ever since i was a teen and i always thought that was the worst bug anyone with cf could have

but ive been noticing pwcf talking about cepacia and this bug seems like the worst bug pwcf can have!

so i just want to know what are the symptoms of cepacia etc

and can somebody explain to me if its true that pseudomonas keeps cepacia away or that pseudo can turn into cepacia (because cepacia is a form of pseudo right?)

Thank you
 
C

Crazyangel

New member
Ive been colonised with Pseudomonas ever since i was a teen and i always thought that was the worst bug anyone with cf could have

but ive been noticing pwcf talking about cepacia and this bug seems like the worst bug pwcf can have!

so i just want to know what are the symptoms of cepacia etc

and can somebody explain to me if its true that pseudomonas keeps cepacia away or that pseudo can turn into cepacia (because cepacia is a form of pseudo right?)

Thank you
 
C

Crazyangel

New member
Ive been colonised with Pseudomonas ever since i was a teen and i always thought that was the worst bug anyone with cf could have

but ive been noticing pwcf talking about cepacia and this bug seems like the worst bug pwcf can have!

so i just want to know what are the symptoms of cepacia etc

and can somebody explain to me if its true that pseudomonas keeps cepacia away or that pseudo can turn into cepacia (because cepacia is a form of pseudo right?)

Thank you
 
C

Crazyangel

New member
Ive been colonised with Pseudomonas ever since i was a teen and i always thought that was the worst bug anyone with cf could have
<br />
<br />but ive been noticing pwcf talking about cepacia and this bug seems like the worst bug pwcf can have!
<br />
<br />so i just want to know what are the symptoms of cepacia etc
<br />
<br />and can somebody explain to me if its true that pseudomonas keeps cepacia away or that pseudo can turn into cepacia (because cepacia is a form of pseudo right?)
<br />
<br />Thank you
 
M

mamaScarlett

Active member
b. cep is its own bug. pseudo doesn't 'turn' into cepacia. they are different things.
i can't tell you about symptoms of cepacia-bc its different for everyone. some people w cep get fevers, rashes, or are resistant to more antibiotics. you know if you have it if it shows up on a culture.
there are also different levels of b. cepacia, or strains. some are extremely dangerous and could actually destroy your lungs, those are more rare. I have had a strain of cepacia for over 12 years now. it doesn't cause me that many problems, except it decreases how many antibiotics i will respond to.
cepacia is considered the 'big' bug. the one you don't want. but it doesn't mean you have a death sentence either. it makes your life more difficult than it already is with cf.
its true there are theories that pseudo and other bugs can keep cepacia in control. but the bottom line is that you don't want to colonize any of these things. so infection control is #1.
 
M

mamaScarlett

Active member
b. cep is its own bug. pseudo doesn't 'turn' into cepacia. they are different things.
i can't tell you about symptoms of cepacia-bc its different for everyone. some people w cep get fevers, rashes, or are resistant to more antibiotics. you know if you have it if it shows up on a culture.
there are also different levels of b. cepacia, or strains. some are extremely dangerous and could actually destroy your lungs, those are more rare. I have had a strain of cepacia for over 12 years now. it doesn't cause me that many problems, except it decreases how many antibiotics i will respond to.
cepacia is considered the 'big' bug. the one you don't want. but it doesn't mean you have a death sentence either. it makes your life more difficult than it already is with cf.
its true there are theories that pseudo and other bugs can keep cepacia in control. but the bottom line is that you don't want to colonize any of these things. so infection control is #1.
 
M

mamaScarlett

Active member
b. cep is its own bug. pseudo doesn't 'turn' into cepacia. they are different things.
i can't tell you about symptoms of cepacia-bc its different for everyone. some people w cep get fevers, rashes, or are resistant to more antibiotics. you know if you have it if it shows up on a culture.
there are also different levels of b. cepacia, or strains. some are extremely dangerous and could actually destroy your lungs, those are more rare. I have had a strain of cepacia for over 12 years now. it doesn't cause me that many problems, except it decreases how many antibiotics i will respond to.
cepacia is considered the 'big' bug. the one you don't want. but it doesn't mean you have a death sentence either. it makes your life more difficult than it already is with cf.
its true there are theories that pseudo and other bugs can keep cepacia in control. but the bottom line is that you don't want to colonize any of these things. so infection control is #1.
 
M

mamaScarlett

Active member
b. cep is its own bug. pseudo doesn't 'turn' into cepacia. they are different things.
i can't tell you about symptoms of cepacia-bc its different for everyone. some people w cep get fevers, rashes, or are resistant to more antibiotics. you know if you have it if it shows up on a culture.
there are also different levels of b. cepacia, or strains. some are extremely dangerous and could actually destroy your lungs, those are more rare. I have had a strain of cepacia for over 12 years now. it doesn't cause me that many problems, except it decreases how many antibiotics i will respond to.
cepacia is considered the 'big' bug. the one you don't want. but it doesn't mean you have a death sentence either. it makes your life more difficult than it already is with cf.
its true there are theories that pseudo and other bugs can keep cepacia in control. but the bottom line is that you don't want to colonize any of these things. so infection control is #1.
 
M

mamaScarlett

Active member
b. cep is its own bug. pseudo doesn't 'turn' into cepacia. they are different things.
<br />i can't tell you about symptoms of cepacia-bc its different for everyone. some people w cep get fevers, rashes, or are resistant to more antibiotics. you know if you have it if it shows up on a culture.
<br />there are also different levels of b. cepacia, or strains. some are extremely dangerous and could actually destroy your lungs, those are more rare. I have had a strain of cepacia for over 12 years now. it doesn't cause me that many problems, except it decreases how many antibiotics i will respond to.
<br />cepacia is considered the 'big' bug. the one you don't want. but it doesn't mean you have a death sentence either. it makes your life more difficult than it already is with cf.
<br />its true there are theories that pseudo and other bugs can keep cepacia in control. but the bottom line is that you don't want to colonize any of these things. so infection control is #1.
 
N

NYCLawGirl

New member
B. Cepacia USED to be called Psuedomonas Cepacia, which is probably responsible for your confusion over Psuedo "turning into" Cepacia. Psuedomonas (like Burkholderia) is a category of bacteria, but the specific bug most CFers have is Psuedomonas Aeruginosa -- a type of the lager category of Psuedomonas.

B. Cepacia has 3 genomovars, some of which are considered "more severe" than others. But like PA, different CFers have different responses to the bacteria. What most CFers have come to fear is something called "cepacia syndrome", which is a rapid decrease in lung function sometimes leading to death soon after acquiring Cepacia. This is really pretty uncommon though -- far more common is that, much like Psuedo, Cepacia colonizes in the lungs and remains there, with occasional flare-ups requiring more aggressive treatment.

Because of the risk of cepacia syndrome, and also most likely the decreased success rates of transplant on individuals infected with Cepacia (again, that's a general statement, some Cepacia patients fare just fine after transplant), the CFF and clinics, etc, have pretty strict protocol for infection control with Cepacia. I know my particular transplant center will not accept any Cepacia patients for transplant though, which is another reason some CFers might be particularly scared of this bug.
 
N

NYCLawGirl

New member
B. Cepacia USED to be called Psuedomonas Cepacia, which is probably responsible for your confusion over Psuedo "turning into" Cepacia. Psuedomonas (like Burkholderia) is a category of bacteria, but the specific bug most CFers have is Psuedomonas Aeruginosa -- a type of the lager category of Psuedomonas.

B. Cepacia has 3 genomovars, some of which are considered "more severe" than others. But like PA, different CFers have different responses to the bacteria. What most CFers have come to fear is something called "cepacia syndrome", which is a rapid decrease in lung function sometimes leading to death soon after acquiring Cepacia. This is really pretty uncommon though -- far more common is that, much like Psuedo, Cepacia colonizes in the lungs and remains there, with occasional flare-ups requiring more aggressive treatment.

Because of the risk of cepacia syndrome, and also most likely the decreased success rates of transplant on individuals infected with Cepacia (again, that's a general statement, some Cepacia patients fare just fine after transplant), the CFF and clinics, etc, have pretty strict protocol for infection control with Cepacia. I know my particular transplant center will not accept any Cepacia patients for transplant though, which is another reason some CFers might be particularly scared of this bug.
 
N

NYCLawGirl

New member
B. Cepacia USED to be called Psuedomonas Cepacia, which is probably responsible for your confusion over Psuedo "turning into" Cepacia. Psuedomonas (like Burkholderia) is a category of bacteria, but the specific bug most CFers have is Psuedomonas Aeruginosa -- a type of the lager category of Psuedomonas.

B. Cepacia has 3 genomovars, some of which are considered "more severe" than others. But like PA, different CFers have different responses to the bacteria. What most CFers have come to fear is something called "cepacia syndrome", which is a rapid decrease in lung function sometimes leading to death soon after acquiring Cepacia. This is really pretty uncommon though -- far more common is that, much like Psuedo, Cepacia colonizes in the lungs and remains there, with occasional flare-ups requiring more aggressive treatment.

Because of the risk of cepacia syndrome, and also most likely the decreased success rates of transplant on individuals infected with Cepacia (again, that's a general statement, some Cepacia patients fare just fine after transplant), the CFF and clinics, etc, have pretty strict protocol for infection control with Cepacia. I know my particular transplant center will not accept any Cepacia patients for transplant though, which is another reason some CFers might be particularly scared of this bug.
 
N

NYCLawGirl

New member
B. Cepacia USED to be called Psuedomonas Cepacia, which is probably responsible for your confusion over Psuedo "turning into" Cepacia. Psuedomonas (like Burkholderia) is a category of bacteria, but the specific bug most CFers have is Psuedomonas Aeruginosa -- a type of the lager category of Psuedomonas.

B. Cepacia has 3 genomovars, some of which are considered "more severe" than others. But like PA, different CFers have different responses to the bacteria. What most CFers have come to fear is something called "cepacia syndrome", which is a rapid decrease in lung function sometimes leading to death soon after acquiring Cepacia. This is really pretty uncommon though -- far more common is that, much like Psuedo, Cepacia colonizes in the lungs and remains there, with occasional flare-ups requiring more aggressive treatment.

Because of the risk of cepacia syndrome, and also most likely the decreased success rates of transplant on individuals infected with Cepacia (again, that's a general statement, some Cepacia patients fare just fine after transplant), the CFF and clinics, etc, have pretty strict protocol for infection control with Cepacia. I know my particular transplant center will not accept any Cepacia patients for transplant though, which is another reason some CFers might be particularly scared of this bug.
 
N

NYCLawGirl

New member
B. Cepacia USED to be called Psuedomonas Cepacia, which is probably responsible for your confusion over Psuedo "turning into" Cepacia. Psuedomonas (like Burkholderia) is a category of bacteria, but the specific bug most CFers have is Psuedomonas Aeruginosa -- a type of the lager category of Psuedomonas.
<br />
<br />B. Cepacia has 3 genomovars, some of which are considered "more severe" than others. But like PA, different CFers have different responses to the bacteria. What most CFers have come to fear is something called "cepacia syndrome", which is a rapid decrease in lung function sometimes leading to death soon after acquiring Cepacia. This is really pretty uncommon though -- far more common is that, much like Psuedo, Cepacia colonizes in the lungs and remains there, with occasional flare-ups requiring more aggressive treatment.
<br />
<br />Because of the risk of cepacia syndrome, and also most likely the decreased success rates of transplant on individuals infected with Cepacia (again, that's a general statement, some Cepacia patients fare just fine after transplant), the CFF and clinics, etc, have pretty strict protocol for infection control with Cepacia. I know my particular transplant center will not accept any Cepacia patients for transplant though, which is another reason some CFers might be particularly scared of this bug.
 
D

Diane

New member
My cepacia symptoms were coughing more, feeling unbelievably tired and nothing helping to make me feel better. Then i developed low grade fevers every day, same time of day. Antibiotics that used to work easily on me were not as effective. Here are some links that explain it all and then some....

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/bcepacia.htm
">http://www3.nbnet.nb.ca/normap/bcepacia.htm
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?hl=en&ie=UTF-8&q=burkholderia+cepacia&spell=1
">http://www.google.com/search?h...deria+cepacia&spell=1
</a>
 
D

Diane

New member
My cepacia symptoms were coughing more, feeling unbelievably tired and nothing helping to make me feel better. Then i developed low grade fevers every day, same time of day. Antibiotics that used to work easily on me were not as effective. Here are some links that explain it all and then some....

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/bcepacia.htm
">http://www3.nbnet.nb.ca/normap/bcepacia.htm
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?hl=en&ie=UTF-8&q=burkholderia+cepacia&spell=1
">http://www.google.com/search?h...deria+cepacia&spell=1
</a>
 
D

Diane

New member
My cepacia symptoms were coughing more, feeling unbelievably tired and nothing helping to make me feel better. Then i developed low grade fevers every day, same time of day. Antibiotics that used to work easily on me were not as effective. Here are some links that explain it all and then some....

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/bcepacia.htm
">http://www3.nbnet.nb.ca/normap/bcepacia.htm
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?hl=en&ie=UTF-8&q=burkholderia+cepacia&spell=1
">http://www.google.com/search?h...deria+cepacia&spell=1
</a>
 
D

Diane

New member
My cepacia symptoms were coughing more, feeling unbelievably tired and nothing helping to make me feel better. Then i developed low grade fevers every day, same time of day. Antibiotics that used to work easily on me were not as effective. Here are some links that explain it all and then some....

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/bcepacia.htm
">http://www3.nbnet.nb.ca/normap/bcepacia.htm
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?hl=en&ie=UTF-8&q=burkholderia+cepacia&spell=1
">http://www.google.com/search?h...deria+cepacia&spell=1
</a>
 
D

Diane

New member
My cepacia symptoms were coughing more, feeling unbelievably tired and nothing helping to make me feel better. Then i developed low grade fevers every day, same time of day. Antibiotics that used to work easily on me were not as effective. Here are some links that explain it all and then some....
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/bcepacia.htm
">http://www3.nbnet.nb.ca/normap/bcepacia.htm
</a><br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?hl=en&ie=UTF-8&q=burkholderia+cepacia&spell=1
">http://www.google.com/search?h...deria+cepacia&spell=1
</a><br />
 
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