I was just diagnosed with B. Cepacia! What is B. Cepacia???

[mamaScarlett]

I have b.cep. I've had it for about 15 years. It reacts differently for everyone, and yes there are different strains and they react differently.
Cepacia is like the "f" word in the cf world. But unfortunately there are alot of misconceptions about it. Everyone has some story of someone they know who died from it, or something like that. But often (not always) there are many other factors involved than just cepacia.
And unfortunately there isn't alot of info on it like there are in other bacterias patients culture.
I'm confused when you say cepacia/staph-staph is staph and cepacia is cepacia. They are 2 different things. Do you have both?
For me personally, my cep hasn't impacted me greatly. There's some antibiotics that just won't work on me. Bur for the most part cep doesn't affect my life. It might or might not affect yours. Talk to your docs about it, get your info from them.
Just as Cf is not a one size fits all disease-cep isn't either.

 

[mamaScarlett]

I have b.cep. I've had it for about 15 years. It reacts differently for everyone, and yes there are different strains and they react differently.
Cepacia is like the "f" word in the cf world. But unfortunately there are alot of misconceptions about it. Everyone has some story of someone they know who died from it, or something like that. But often (not always) there are many other factors involved than just cepacia.
And unfortunately there isn't alot of info on it like there are in other bacterias patients culture.
I'm confused when you say cepacia/staph-staph is staph and cepacia is cepacia. They are 2 different things. Do you have both?
For me personally, my cep hasn't impacted me greatly. There's some antibiotics that just won't work on me. Bur for the most part cep doesn't affect my life. It might or might not affect yours. Talk to your docs about it, get your info from them.
Just as Cf is not a one size fits all disease-cep isn't either.

 

[mamaScarlett]

I have b.cep. I've had it for about 15 years. It reacts differently for everyone, and yes there are different strains and they react differently.
Cepacia is like the "f" word in the cf world. But unfortunately there are alot of misconceptions about it. Everyone has some story of someone they know who died from it, or something like that. But often (not always) there are many other factors involved than just cepacia.
And unfortunately there isn't alot of info on it like there are in other bacterias patients culture.
I'm confused when you say cepacia/staph-staph is staph and cepacia is cepacia. They are 2 different things. Do you have both?
For me personally, my cep hasn't impacted me greatly. There's some antibiotics that just won't work on me. Bur for the most part cep doesn't affect my life. It might or might not affect yours. Talk to your docs about it, get your info from them.
Just as Cf is not a one size fits all disease-cep isn't either.

 

[mamaScarlett]

I have b.cep. I've had it for about 15 years. It reacts differently for everyone, and yes there are different strains and they react differently.
Cepacia is like the "f" word in the cf world. But unfortunately there are alot of misconceptions about it. Everyone has some story of someone they know who died from it, or something like that. But often (not always) there are many other factors involved than just cepacia.
And unfortunately there isn't alot of info on it like there are in other bacterias patients culture.
I'm confused when you say cepacia/staph-staph is staph and cepacia is cepacia. They are 2 different things. Do you have both?
For me personally, my cep hasn't impacted me greatly. There's some antibiotics that just won't work on me. Bur for the most part cep doesn't affect my life. It might or might not affect yours. Talk to your docs about it, get your info from them.
Just as Cf is not a one size fits all disease-cep isn't either.

 

[mamaScarlett]

I have b.cep. I've had it for about 15 years. It reacts differently for everyone, and yes there are different strains and they react differently.
<br />Cepacia is like the "f" word in the cf world. But unfortunately there are alot of misconceptions about it. Everyone has some story of someone they know who died from it, or something like that. But often (not always) there are many other factors involved than just cepacia.
<br />And unfortunately there isn't alot of info on it like there are in other bacterias patients culture.
<br />I'm confused when you say cepacia/staph-staph is staph and cepacia is cepacia. They are 2 different things. Do you have both?
<br />For me personally, my cep hasn't impacted me greatly. There's some antibiotics that just won't work on me. Bur for the most part cep doesn't affect my life. It might or might not affect yours. Talk to your docs about it, get your info from them.
<br />Just as Cf is not a one size fits all disease-cep isn't either.

 

[theLostMiler]

I have read on the blogs about some research saying the b. cep either "keeps" or "harbors" MRSA.

Then some say it is "like" staph...? (at least how I have interpretted things)

I am under the impression the b. cep is more closely related to Pseudomonas...

I have the multivarians strain, which my doctor said acts like pseudo in my lungs and so I shouldnt be too concerned...

i have m. abscessus too, which for 2 years I treated and was having fevers pretty regularly... now my doctors are saying (b. cep since feb 09) that my m. abscesssus seems to just be sitting there and the pseudo and b. cep i have are causing the infections and fevers (I get fevers a lot when not on ivs... so I am on ivs a lot) ...

so basically w/ that story I am saying I cant tell what is causing the fevers anymore for certain. My lung function varies from about fev1 of 1.6 (i think 47-48%) to 1.4 (i think 40%) throughout year, with winter staying down around 1.4-1.5.

 

[theLostMiler]

I have read on the blogs about some research saying the b. cep either "keeps" or "harbors" MRSA.

Then some say it is "like" staph...? (at least how I have interpretted things)

I am under the impression the b. cep is more closely related to Pseudomonas...

I have the multivarians strain, which my doctor said acts like pseudo in my lungs and so I shouldnt be too concerned...

i have m. abscessus too, which for 2 years I treated and was having fevers pretty regularly... now my doctors are saying (b. cep since feb 09) that my m. abscesssus seems to just be sitting there and the pseudo and b. cep i have are causing the infections and fevers (I get fevers a lot when not on ivs... so I am on ivs a lot) ...

so basically w/ that story I am saying I cant tell what is causing the fevers anymore for certain. My lung function varies from about fev1 of 1.6 (i think 47-48%) to 1.4 (i think 40%) throughout year, with winter staying down around 1.4-1.5.

 

[theLostMiler]

I have read on the blogs about some research saying the b. cep either "keeps" or "harbors" MRSA.

Then some say it is "like" staph...? (at least how I have interpretted things)

I am under the impression the b. cep is more closely related to Pseudomonas...

I have the multivarians strain, which my doctor said acts like pseudo in my lungs and so I shouldnt be too concerned...

i have m. abscessus too, which for 2 years I treated and was having fevers pretty regularly... now my doctors are saying (b. cep since feb 09) that my m. abscesssus seems to just be sitting there and the pseudo and b. cep i have are causing the infections and fevers (I get fevers a lot when not on ivs... so I am on ivs a lot) ...

so basically w/ that story I am saying I cant tell what is causing the fevers anymore for certain. My lung function varies from about fev1 of 1.6 (i think 47-48%) to 1.4 (i think 40%) throughout year, with winter staying down around 1.4-1.5.

 

[theLostMiler]

I have read on the blogs about some research saying the b. cep either "keeps" or "harbors" MRSA.

Then some say it is "like" staph...? (at least how I have interpretted things)

I am under the impression the b. cep is more closely related to Pseudomonas...

I have the multivarians strain, which my doctor said acts like pseudo in my lungs and so I shouldnt be too concerned...

i have m. abscessus too, which for 2 years I treated and was having fevers pretty regularly... now my doctors are saying (b. cep since feb 09) that my m. abscesssus seems to just be sitting there and the pseudo and b. cep i have are causing the infections and fevers (I get fevers a lot when not on ivs... so I am on ivs a lot) ...

so basically w/ that story I am saying I cant tell what is causing the fevers anymore for certain. My lung function varies from about fev1 of 1.6 (i think 47-48%) to 1.4 (i think 40%) throughout year, with winter staying down around 1.4-1.5.

 

[theLostMiler]

I have read on the blogs about some research saying the b. cep either "keeps" or "harbors" MRSA.
<br />
<br />Then some say it is "like" staph...? (at least how I have interpretted things)
<br />
<br />I am under the impression the b. cep is more closely related to Pseudomonas...
<br />
<br />I have the multivarians strain, which my doctor said acts like pseudo in my lungs and so I shouldnt be too concerned...
<br />
<br />i have m. abscessus too, which for 2 years I treated and was having fevers pretty regularly... now my doctors are saying (b. cep since feb 09) that my m. abscesssus seems to just be sitting there and the pseudo and b. cep i have are causing the infections and fevers (I get fevers a lot when not on ivs... so I am on ivs a lot) ...
<br />
<br />so basically w/ that story I am saying I cant tell what is causing the fevers anymore for certain. My lung function varies from about fev1 of 1.6 (i think 47-48%) to 1.4 (i think 40%) throughout year, with winter staying down around 1.4-1.5.

 

[Sweetness81]

to "theLostMiler" I think the b.cepacia in my lungs harbors the MRSA.

The doctor says that the bacteria is really sticky and sticks to the sides of my lungs and cause pseudomonas pneumonia, and as a second infection develops MRSA STAPH as a result of the already build up currently in my lungs. I don't know what strain I have yet, but I will be finding out soon. As soon as I know more, I will post it. Thank you all so much for your advice.

Mary 28 w/cf

 

[Sweetness81]

to "theLostMiler" I think the b.cepacia in my lungs harbors the MRSA.

The doctor says that the bacteria is really sticky and sticks to the sides of my lungs and cause pseudomonas pneumonia, and as a second infection develops MRSA STAPH as a result of the already build up currently in my lungs. I don't know what strain I have yet, but I will be finding out soon. As soon as I know more, I will post it. Thank you all so much for your advice.

Mary 28 w/cf

 

[Sweetness81]

to "theLostMiler" I think the b.cepacia in my lungs harbors the MRSA.

The doctor says that the bacteria is really sticky and sticks to the sides of my lungs and cause pseudomonas pneumonia, and as a second infection develops MRSA STAPH as a result of the already build up currently in my lungs. I don't know what strain I have yet, but I will be finding out soon. As soon as I know more, I will post it. Thank you all so much for your advice.

Mary 28 w/cf

 

[Sweetness81]

to "theLostMiler" I think the b.cepacia in my lungs harbors the MRSA.

The doctor says that the bacteria is really sticky and sticks to the sides of my lungs and cause pseudomonas pneumonia, and as a second infection develops MRSA STAPH as a result of the already build up currently in my lungs. I don't know what strain I have yet, but I will be finding out soon. As soon as I know more, I will post it. Thank you all so much for your advice.

Mary 28 w/cf

 

[Sweetness81]

to "theLostMiler" I think the b.cepacia in my lungs harbors the MRSA.
<br />
<br /> The doctor says that the bacteria is really sticky and sticks to the sides of my lungs and cause pseudomonas pneumonia, and as a second infection develops MRSA STAPH as a result of the already build up currently in my lungs. I don't know what strain I have yet, but I will be finding out soon. As soon as I know more, I will post it. Thank you all so much for your advice.
<br />
<br />Mary 28 w/cf

 

[iamnina3178]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rubyroselee</b></i>
And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.
</end quote></div>

this is what happened to me. i cultured it a couple times and then not again after that

 

[iamnina3178]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rubyroselee</b></i>
And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.
</end quote></div>

this is what happened to me. i cultured it a couple times and then not again after that

 

[iamnina3178]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rubyroselee</b></i>
And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.
</end quote></div>

this is what happened to me. i cultured it a couple times and then not again after that

 

[iamnina3178]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rubyroselee</b></i>
And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.
</end quote>

this is what happened to me. i cultured it a couple times and then not again after that

 

[iamnina3178]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rubyroselee</b></i>
<br />And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.
<br /></end quote>
<br />
<br />this is what happened to me. i cultured it a couple times and then not again after that