Question on Cepacia

LouLou

New member
Jazz and Christian - here is what I found - hope it helps.

Interesting site: CDC?s site on on b. cepacia http://www.cdc.gov/ncidod/EID/vol4no2/holmes.htm

This is where I got the 50% figure. http://bccm.belspo.be/newsletter/9-01/bccm02.htm "Infection or colonisation by B. cepacia leads to different outcomes in different patients. However, overall, pulmonary colonisation reduces survival by 50% and about one third to a half of the patients succumb to "cepacia syndrome", a rapidly fatal necrotising pneumonia."

Another mortality statistic: http://www.junkscience.com/news2/goodbugs.htm ?Goldstein says that B. cepacia is resistant to most antibiotics and kills around a third of cystic fibrosis patients it infects within a year?

http://www.cysticfibrosismedicine.com/htmldocs/CFText/bcepacia.htm
Median survival rates decline markedly to approximately 15-19 years with a history of B. cepacia complex infection. Once patients acquire an infection with B. cepacia complex bacteria, clinical progression of the disease follows one of three commonly observed patterns, namely (i). no change in lung function and clinical status, (ii). acceleration of decline in pulmonary function and (iii). fatal decline over a relatively short periods. This is sometimes accompanied by septicaemia, which is often referred to as the "cepacia syndrome".

How we get it and how long it lives: http://health.state.ga.us/healthtopics/mme/040504.asp. ?It is thought that the organism can survive on surfaces for up to a week and in water for many months. Transmission occurred either by direct contact with fluids such as saliva and sputum, by shaking hands, or even indirectly from contaminated surfaces (such as sinks, exercise equipment, and tissues).?
 

LouLou

New member
Jazz and Christian - here is what I found - hope it helps.

Interesting site: CDC?s site on on b. cepacia http://www.cdc.gov/ncidod/EID/vol4no2/holmes.htm

This is where I got the 50% figure. http://bccm.belspo.be/newsletter/9-01/bccm02.htm "Infection or colonisation by B. cepacia leads to different outcomes in different patients. However, overall, pulmonary colonisation reduces survival by 50% and about one third to a half of the patients succumb to "cepacia syndrome", a rapidly fatal necrotising pneumonia."

Another mortality statistic: http://www.junkscience.com/news2/goodbugs.htm ?Goldstein says that B. cepacia is resistant to most antibiotics and kills around a third of cystic fibrosis patients it infects within a year?

http://www.cysticfibrosismedicine.com/htmldocs/CFText/bcepacia.htm
Median survival rates decline markedly to approximately 15-19 years with a history of B. cepacia complex infection. Once patients acquire an infection with B. cepacia complex bacteria, clinical progression of the disease follows one of three commonly observed patterns, namely (i). no change in lung function and clinical status, (ii). acceleration of decline in pulmonary function and (iii). fatal decline over a relatively short periods. This is sometimes accompanied by septicaemia, which is often referred to as the "cepacia syndrome".

How we get it and how long it lives: http://health.state.ga.us/healthtopics/mme/040504.asp. ?It is thought that the organism can survive on surfaces for up to a week and in water for many months. Transmission occurred either by direct contact with fluids such as saliva and sputum, by shaking hands, or even indirectly from contaminated surfaces (such as sinks, exercise equipment, and tissues).?
 

JustDucky

New member
Hi Jazzy, I remember reading some pretty scary articles about how hearty the cepacia bug is. For isntance, it has been found to actually survive in some disinfectents. The thing is, cepacia is like PA in a way because it lives in our environment. Once I found out I had cepacia, I started to do more research...there were some articles about cepacia being grown out of the multidose albuterols in hospitals (one ICU was experiencing alot of folks who cultured out B. cepacia, so there was an investigation and Viola!), so many hospitals no longer use those multi dose bottles, instead they use the single use ampules. I also read about how cepacia was found on endoscopic tools, even after being disinfected....So, I am not sure of an exact time frame, but my guess is that cepacia can live for some time on a surface, especially if it is wet...cepacia likes water, in fact, it will grow in water without any nutrition from what I understand from my readings. I have saved the articles, I just need to find them....This is why CF centers, hospitals or any center of any kind should be very careful about cepacia. I always tell doctors that I have cepacia, what frightens me is that some of them do not have a clue what B. cepacia is!! I know the CF center I go to, they are very strict with cepacia folks, they aren't even seen with the regular CF population, I went on a non CF day and was masked before I went into the office and escorted to a room right away, no options given.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
Hi Jazzy, I remember reading some pretty scary articles about how hearty the cepacia bug is. For isntance, it has been found to actually survive in some disinfectents. The thing is, cepacia is like PA in a way because it lives in our environment. Once I found out I had cepacia, I started to do more research...there were some articles about cepacia being grown out of the multidose albuterols in hospitals (one ICU was experiencing alot of folks who cultured out B. cepacia, so there was an investigation and Viola!), so many hospitals no longer use those multi dose bottles, instead they use the single use ampules. I also read about how cepacia was found on endoscopic tools, even after being disinfected....So, I am not sure of an exact time frame, but my guess is that cepacia can live for some time on a surface, especially if it is wet...cepacia likes water, in fact, it will grow in water without any nutrition from what I understand from my readings. I have saved the articles, I just need to find them....This is why CF centers, hospitals or any center of any kind should be very careful about cepacia. I always tell doctors that I have cepacia, what frightens me is that some of them do not have a clue what B. cepacia is!! I know the CF center I go to, they are very strict with cepacia folks, they aren't even seen with the regular CF population, I went on a non CF day and was masked before I went into the office and escorted to a room right away, no options given.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Does anybody have any information on CFF protocol with the PFT machines? I read on stanford's site they change the filters and mouthpieces, but not sure what kind of machines they use. I suspect our clinic still uses the old machines. Kinda freaked out about this.
 

anonymous

New member
Does anybody have any information on CFF protocol with the PFT machines? I read on stanford's site they change the filters and mouthpieces, but not sure what kind of machines they use. I suspect our clinic still uses the old machines. Kinda freaked out about this.
 

anonymous

New member
We still have a community waiting room and the excuse the doctor has given us is "we've never had any cepacia patients here". Well maybe not at that particular clinic, but there was a CFer who died at that same hospital due to complications from it. Also, this was the same hospital that had 8 or 9 patient deaths caused by contaminated mouthwash.

I just figure DS has cultured PA as well as enterbactor cholea, HIB -- I dont' want him spreading his bugs, and I sure as heck don't want him picking up any new ones. I just get sooo freaked out by clinics.
 

anonymous

New member
We still have a community waiting room and the excuse the doctor has given us is "we've never had any cepacia patients here". Well maybe not at that particular clinic, but there was a CFer who died at that same hospital due to complications from it. Also, this was the same hospital that had 8 or 9 patient deaths caused by contaminated mouthwash.

I just figure DS has cultured PA as well as enterbactor cholea, HIB -- I dont' want him spreading his bugs, and I sure as heck don't want him picking up any new ones. I just get sooo freaked out by clinics.
 

thelizardqueen

New member
For the Anon that posted about Canada - TOBI is available in Canada, but I'm not quite sure about the vest. I've looked into it, and haven't found any information as to wheither its available here in Canada.

Canada does have some very great CF centres and specialists. My doc in Winnipeg is the head specialist in my province.
 

thelizardqueen

New member
For the Anon that posted about Canada - TOBI is available in Canada, but I'm not quite sure about the vest. I've looked into it, and haven't found any information as to wheither its available here in Canada.

Canada does have some very great CF centres and specialists. My doc in Winnipeg is the head specialist in my province.
 

anonymous

New member
Does anyone know if it's 100% sure that once you have it you can't get rid of it?
Meaning-has anyone heard of anyone that's iradicated it by any method.

I don't know why-but SeanDavis-I'm thinking that you might know of some natural/supplemental aid to it?

And, does anyone know clinically why once you have it you can't get rid of it? Can anyone explain that?

Meanwhile, I'm going to start researching those links you left Lauren, and thank you.

Christian
 

anonymous

New member
Does anyone know if it's 100% sure that once you have it you can't get rid of it?
Meaning-has anyone heard of anyone that's iradicated it by any method.

I don't know why-but SeanDavis-I'm thinking that you might know of some natural/supplemental aid to it?

And, does anyone know clinically why once you have it you can't get rid of it? Can anyone explain that?

Meanwhile, I'm going to start researching those links you left Lauren, and thank you.

Christian
 

Allie

New member
I have no idea why, but I have never heard of anyone eradicating it. It can be controlled in some people, but not gotten rid of. It's a horribly nasty bug. Ry was one of those oh so lucky people that it killed in a fairly short period of time (2.5 years). How you fare with it is kind of a crapshoot, I think.
 

Allie

New member
I have no idea why, but I have never heard of anyone eradicating it. It can be controlled in some people, but not gotten rid of. It's a horribly nasty bug. Ry was one of those oh so lucky people that it killed in a fairly short period of time (2.5 years). How you fare with it is kind of a crapshoot, I think.
 

anonymous

New member
I just skimmed this category, but the suggestion that there is basically no danger in hanging around other cf'ers really surprises me. I find it hard to believe that the best dr's in Canada have no qualms about suggesting this, especially since, if I am recalling correctly, the percentage of Canadian CF'ers that have cepacia is even greater than in the US. It would seem to me that you can't be 100% sure you aren't culturing cepacia at any given time, that it might show up in the next culture. Why put yourself or your friends at risk? Although I understand some friendships would be deemed worth the risk, I suppose. I would do anything I could to prevent the possibility of being exposed to cepacia, and I wouldn't care what any other cf'er or medical person thought. I remember reading another thread a month or so ago that seemed to downplay the serious of cepacia. I couldn't believe it! Yes, there are some people that it doesn't seem to affect as greatly as others. But just read the statistics or the stories of those that have it, and the fact that most tx centers won't accept those with cepacia, or will only consider them on a case by case basis, and yes, the outlook is grim. I could go on, but I'll spare you!

Here's wishing you all good health!
jan (wife of Greg, 46 cf'er w/cepacia, tx'd @ Methodist, Indianapolis)
www.standinginthegap4greg.org
 

anonymous

New member
I just skimmed this category, but the suggestion that there is basically no danger in hanging around other cf'ers really surprises me. I find it hard to believe that the best dr's in Canada have no qualms about suggesting this, especially since, if I am recalling correctly, the percentage of Canadian CF'ers that have cepacia is even greater than in the US. It would seem to me that you can't be 100% sure you aren't culturing cepacia at any given time, that it might show up in the next culture. Why put yourself or your friends at risk? Although I understand some friendships would be deemed worth the risk, I suppose. I would do anything I could to prevent the possibility of being exposed to cepacia, and I wouldn't care what any other cf'er or medical person thought. I remember reading another thread a month or so ago that seemed to downplay the serious of cepacia. I couldn't believe it! Yes, there are some people that it doesn't seem to affect as greatly as others. But just read the statistics or the stories of those that have it, and the fact that most tx centers won't accept those with cepacia, or will only consider them on a case by case basis, and yes, the outlook is grim. I could go on, but I'll spare you!

Here's wishing you all good health!
jan (wife of Greg, 46 cf'er w/cepacia, tx'd @ Methodist, Indianapolis)
www.standinginthegap4greg.org
 

lilMeggies

New member
pretty sure there are precautions as I stated before so read the whole thread and don't skim! where's your PHD???? YEAH PRETTY SURE YOU DON'T HAVE ONE! So take your statitics and shove them!
 

lilMeggies

New member
pretty sure there are precautions as I stated before so read the whole thread and don't skim! where's your PHD???? YEAH PRETTY SURE YOU DON'T HAVE ONE! So take your statitics and shove them!
 

anonymous

New member
I agree, but I think most people here realize the seriousness of cepacia, which is a good thing. It is definitely a virulent bug that is not to be messed with.

About the eradicating thing- I have heard that they have eradicated cepacia in people but not genomovar III- technically the "bad" one. I think it is so hard to get rid of because of its virulence, and because you have to play the whole game with resistance- maybe if you were on meds 24/7 for a year, you might eradicate it, but then it might come back and you could be resistant- no one would be on IV meds for a year it would be way to risky.

anyway- thats my thought but who knows

Caitlin
 

anonymous

New member
I agree, but I think most people here realize the seriousness of cepacia, which is a good thing. It is definitely a virulent bug that is not to be messed with.

About the eradicating thing- I have heard that they have eradicated cepacia in people but not genomovar III- technically the "bad" one. I think it is so hard to get rid of because of its virulence, and because you have to play the whole game with resistance- maybe if you were on meds 24/7 for a year, you might eradicate it, but then it might come back and you could be resistant- no one would be on IV meds for a year it would be way to risky.

anyway- thats my thought but who knows

Caitlin
 
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