Burkholder Cepacia bacteria

S

sunshine5637

New member
I was wondering if anyone on here grows the burkholder cepacia bacteria and if so, what, if anything, do you do to keep it from growing and flaring up?

I've grown it for a long time...and never had a problem with it but got a really bad viral infection and had to have a picc line to get rid of it.

I was just checking to see if many other CFers grow this.
 
S

sunshine5637

New member
I was wondering if anyone on here grows the burkholder cepacia bacteria and if so, what, if anything, do you do to keep it from growing and flaring up?

I've grown it for a long time...and never had a problem with it but got a really bad viral infection and had to have a picc line to get rid of it.

I was just checking to see if many other CFers grow this.
 
S

sunshine5637

New member
I was wondering if anyone on here grows the burkholder cepacia bacteria and if so, what, if anything, do you do to keep it from growing and flaring up?
<br />
<br />I've grown it for a long time...and never had a problem with it but got a really bad viral infection and had to have a picc line to get rid of it.
<br />
<br />I was just checking to see if many other CFers grow this.
 
J

JustDucky

New member
I grow B. cepacia....Oddly, I didn't grow it for 2 years and now it is back. There is nothing the docs do differently until things kick up, then it is usually IV time for me. I am on Colistin and Zithromax chronically, I would be on Bactrim if I weren't so allergic to it. My other meds are typical CF meds (pulmozyme, HTS, duonebs etc...). It is pretty resistant, one time it was pan resistant to every antibiotic, let's just say that everything was thrown at it and thankfully after 3 months, the colony counts came down. That was 3 years ago though....it did scare the heck out of me.
I know there are others who grow this bug besides me on this forum, I am sure they will chime in.
Hugs, Jenn
 
J

JustDucky

New member
I grow B. cepacia....Oddly, I didn't grow it for 2 years and now it is back. There is nothing the docs do differently until things kick up, then it is usually IV time for me. I am on Colistin and Zithromax chronically, I would be on Bactrim if I weren't so allergic to it. My other meds are typical CF meds (pulmozyme, HTS, duonebs etc...). It is pretty resistant, one time it was pan resistant to every antibiotic, let's just say that everything was thrown at it and thankfully after 3 months, the colony counts came down. That was 3 years ago though....it did scare the heck out of me.
I know there are others who grow this bug besides me on this forum, I am sure they will chime in.
Hugs, Jenn
 
J

JustDucky

New member
I grow B. cepacia....Oddly, I didn't grow it for 2 years and now it is back. There is nothing the docs do differently until things kick up, then it is usually IV time for me. I am on Colistin and Zithromax chronically, I would be on Bactrim if I weren't so allergic to it. My other meds are typical CF meds (pulmozyme, HTS, duonebs etc...). It is pretty resistant, one time it was pan resistant to every antibiotic, let's just say that everything was thrown at it and thankfully after 3 months, the colony counts came down. That was 3 years ago though....it did scare the heck out of me.
<br />I know there are others who grow this bug besides me on this forum, I am sure they will chime in.
<br />Hugs, Jenn
 
M

moxie1

Guest
I have cepacia and have cultured it for over 15 years.

Not really sure what to say about things kicking up. I haven't been on IVs for CF in over 4 years. When I have had IVs they do a 3 drug combo on me.....merrem, Tobra, and Bactrim.

When I feel like I'm getting sick, I usually start taking oral drops of oil of oregano. I can usually kick whatever without any antibiotics then. Also, lots of nasal irrigation, and plenty of exercise.
 
M

moxie1

Guest
I have cepacia and have cultured it for over 15 years.

Not really sure what to say about things kicking up. I haven't been on IVs for CF in over 4 years. When I have had IVs they do a 3 drug combo on me.....merrem, Tobra, and Bactrim.

When I feel like I'm getting sick, I usually start taking oral drops of oil of oregano. I can usually kick whatever without any antibiotics then. Also, lots of nasal irrigation, and plenty of exercise.
 
M

moxie1

Guest
I have cepacia and have cultured it for over 15 years.
<br />
<br />Not really sure what to say about things kicking up. I haven't been on IVs for CF in over 4 years. When I have had IVs they do a 3 drug combo on me.....merrem, Tobra, and Bactrim.
<br />
<br />When I feel like I'm getting sick, I usually start taking oral drops of oil of oregano. I can usually kick whatever without any antibiotics then. Also, lots of nasal irrigation, and plenty of exercise.
 
M

mamaScarlett

Active member
I have had it for over 15 years. My cepacia rarely affects my overall health anymore. Cepacia is very different for each person that gets it, but in my case we think it probably helps keep some of my other bugs at bay.
I don't really get anything different than other Cf patients when I exacerbate except that there are some abx that obviously won't work for me.
I haven't had cepacia come up in a culture in several years. Of course I figure its still there, but it doesn't flare up the way it did when I was younger.
I don't do anything differently to treat it than I do normally for my cf, which is strict chest pt that I never skip, hypertonic saline which I love, and I'm really big into nutrition.
 
M

mamaScarlett

Active member
I have had it for over 15 years. My cepacia rarely affects my overall health anymore. Cepacia is very different for each person that gets it, but in my case we think it probably helps keep some of my other bugs at bay.
I don't really get anything different than other Cf patients when I exacerbate except that there are some abx that obviously won't work for me.
I haven't had cepacia come up in a culture in several years. Of course I figure its still there, but it doesn't flare up the way it did when I was younger.
I don't do anything differently to treat it than I do normally for my cf, which is strict chest pt that I never skip, hypertonic saline which I love, and I'm really big into nutrition.
 
M

mamaScarlett

Active member
I have had it for over 15 years. My cepacia rarely affects my overall health anymore. Cepacia is very different for each person that gets it, but in my case we think it probably helps keep some of my other bugs at bay.
<br />I don't really get anything different than other Cf patients when I exacerbate except that there are some abx that obviously won't work for me.
<br />I haven't had cepacia come up in a culture in several years. Of course I figure its still there, but it doesn't flare up the way it did when I was younger.
<br />I don't do anything differently to treat it than I do normally for my cf, which is strict chest pt that I never skip, hypertonic saline which I love, and I'm really big into nutrition.
 
T

texnation

New member
Hey there. I first grew B Cepacia about 14 years ago, I was about 6. Up until I was 15 my health was still good and my memory of growing it in that time span is blurry.

However I do know that since about 2006 I've grown it. I did manage to keep it at bay for a while (7-9 months) after a combo of Zithro, Cipro, and one other I think Clindamycin <- not 100% on that one. Along with all of my other meds.

Since then my FEV1 has been below 35%, and during that span that it didn't show up in cultures I can't really say I could tell a difference in how I felt. I'm sure there was some difference in my body somewhere in terms of risk of infection but there was no noticeable correlation in any area I can think of. It has hung around for about 3 years now despite a handful of hospitalizations and antibiotic cocktails.
 
T

texnation

New member
Hey there. I first grew B Cepacia about 14 years ago, I was about 6. Up until I was 15 my health was still good and my memory of growing it in that time span is blurry.

However I do know that since about 2006 I've grown it. I did manage to keep it at bay for a while (7-9 months) after a combo of Zithro, Cipro, and one other I think Clindamycin <- not 100% on that one. Along with all of my other meds.

Since then my FEV1 has been below 35%, and during that span that it didn't show up in cultures I can't really say I could tell a difference in how I felt. I'm sure there was some difference in my body somewhere in terms of risk of infection but there was no noticeable correlation in any area I can think of. It has hung around for about 3 years now despite a handful of hospitalizations and antibiotic cocktails.
 
T

texnation

New member
Hey there. I first grew B Cepacia about 14 years ago, I was about 6. Up until I was 15 my health was still good and my memory of growing it in that time span is blurry.
<br />
<br />However I do know that since about 2006 I've grown it. I did manage to keep it at bay for a while (7-9 months) after a combo of Zithro, Cipro, and one other I think Clindamycin <- not 100% on that one. Along with all of my other meds.
<br />
<br />Since then my FEV1 has been below 35%, and during that span that it didn't show up in cultures I can't really say I could tell a difference in how I felt. I'm sure there was some difference in my body somewhere in terms of risk of infection but there was no noticeable correlation in any area I can think of. It has hung around for about 3 years now despite a handful of hospitalizations and antibiotic cocktails.
 
T

tammykrumrey

Guest
My older daughter has cultured it for three years now and it hasn't really impacted her health too much. She has only had three hospitalizations in the past three years (about once every year, actually). She cultures many other things as well as having ABPA, so it's hard to tell what causing her the flare ups.

Her doctor does treat her with a cocktail of three antibiotics when in, usually Vanc, Tobra and I think last time was Meripenum (not sure on the spelling<img src="i/expressions/face-icon-small-smile.gif" border="0">). She is participating in a study right now to see how Cayston works against Cepacia, and I am happy with the results (although I think the first 6 months she was on placebo, and has only been on the real deal for about two months now).

Besides the Cayston, she does the Vest, Pulmozyme, VFend (for the ABPA) and Zyrtec on a daily basis.

PFTs have not been dramatically decreased due to the Cepacia.

My younger daughter has never cultured it, but would be VERY surprised if it were not hiding down in those lungs and just not being caught yet!
 
T

tammykrumrey

Guest
My older daughter has cultured it for three years now and it hasn't really impacted her health too much. She has only had three hospitalizations in the past three years (about once every year, actually). She cultures many other things as well as having ABPA, so it's hard to tell what causing her the flare ups.

Her doctor does treat her with a cocktail of three antibiotics when in, usually Vanc, Tobra and I think last time was Meripenum (not sure on the spelling<img src="i/expressions/face-icon-small-smile.gif" border="0">). She is participating in a study right now to see how Cayston works against Cepacia, and I am happy with the results (although I think the first 6 months she was on placebo, and has only been on the real deal for about two months now).

Besides the Cayston, she does the Vest, Pulmozyme, VFend (for the ABPA) and Zyrtec on a daily basis.

PFTs have not been dramatically decreased due to the Cepacia.

My younger daughter has never cultured it, but would be VERY surprised if it were not hiding down in those lungs and just not being caught yet!
 
T

tammykrumrey

Guest
My older daughter has cultured it for three years now and it hasn't really impacted her health too much. She has only had three hospitalizations in the past three years (about once every year, actually). She cultures many other things as well as having ABPA, so it's hard to tell what causing her the flare ups.
<br />
<br />Her doctor does treat her with a cocktail of three antibiotics when in, usually Vanc, Tobra and I think last time was Meripenum (not sure on the spelling<img src="i/expressions/face-icon-small-smile.gif" border="0">). She is participating in a study right now to see how Cayston works against Cepacia, and I am happy with the results (although I think the first 6 months she was on placebo, and has only been on the real deal for about two months now).
<br />
<br />Besides the Cayston, she does the Vest, Pulmozyme, VFend (for the ABPA) and Zyrtec on a daily basis.
<br />
<br />PFTs have not been dramatically decreased due to the Cepacia.
<br />
<br />My younger daughter has never cultured it, but would be VERY surprised if it were not hiding down in those lungs and just not being caught yet!
 
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