I have one of the worst cases I guess...or so I am told I have B-Delosia (not sure if that is the correct spelling). I caught it 2 years ago and have been slowly declining since. I am not sure how I got it considering I hardly ever pressed elevator buttons or anything else because my mom was always with me. I have become really resistant to a lot of anti-biotics so there aren't a lot of mixtures I can take anymore. I guess I have been getting progressively worse however because my doctor has brought up the idea of transplants and wants me to start the work up this summer...I am totally SCARED out of my mind!!!! I am still attending college and have a great support system of family, friends and an incrediable boyfriend. You can still live a normal life as long as you stay on top of your health and take care of yourself. Cepacia like CF doesn't have to take over your life, it just becomes a part of it.
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For those with cepacia
- Thread starter anonymous
- Start date
Scarlett81
New member
I think the 'onion' thing is only onions that are rotting. And surprisingly I've seen alot of onions at the store for sale that are begining to rot.
Frozen ones would be fine. But-it could be in any foods we eat. The potato field could be right next to the onion field...so you never know! I try to be reasonable with this. So I just avoid any veggies that are even slightly rotting, or soft. And of course organic is better.
Frozen ones would be fine. But-it could be in any foods we eat. The potato field could be right next to the onion field...so you never know! I try to be reasonable with this. So I just avoid any veggies that are even slightly rotting, or soft. And of course organic is better.
As a cystic fibrosis sufferer, I'm concerned about the use of Burkholdria cepacia in organic farming. Do you know which produce items B. cepacia might be used for? -Jenny, AOL
For those of you who may not be familiar with this issue (Professor Produce wasn't familiar with it until he turned to his good buddy Google), Burkholderia cepacia is a beneficial bacterium that has found an agricultural niche for itself in fighting certain plant and soil borne diseases (rhizoctonia, fusarium, and pythium for those of you who simply must know). Moreover, it's naturally occuring, so organic farmers especially like B. cepacia because this wonder bug actually degrades chlorinated hydrocarbons and herbicides in farm soil and groundwater. Organic farming refers to this use of microbes in agriculture as "biocontrol."
Unfortunately, use of B. cepacia has a huge drawback, as Jenny from AOL points out. Cystic fibrosis sufferers are vulnerable to lung infections from B. cepacia - so vulnerable that the Cystic Fibrosis Foundation had to issue a statement in 2000 saying that folks infected with B. cepacia were not allowed to attend CFF functions for fear of spreading the bacteria to other cystic fibrosis sufferers. Scarier still is this microbe's strong resistance to antibiotics, making it a particularly deadly bacterium for that population.
But before anyone flies off the handle, please take note: There is considerable disagreement about how much of a threat using B. cepacia as biocontrol poses to vulnerable cystic fibrosis patients. Burkholderia cepacia is abundant in nature, with at least nine different species swimming in the Earth's topsoil. Because of this prevalence, it's been difficult for researchers to determine what a safe or dangerous amount might be for use in biocontrol. Just this year, the Environmental Protection Agency has launched a major assessment of B. cepacia's real effect on public health, placing a moratorium on any new significant uses for B. cepacia in the meanwhile.
The average shopper has absolutely nothing to fear from B. cepacia, but CF sufferers might want to take extra care in washing produce - particularly items like bell peppers, tomatoes, onions, and potatoes. The Cystic Fibrosis Foundation recommends washing hands (and, we can conclude, produce) for at least 15 seconds, and we here at The Prof Produce Institute for Clean Veggies always recommend a cap full of hydrogen peroxide in a quart of water for washing produce. We keep this mixture in a plastic bottle by the sink when we wash veggies for dinner.
taken from:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.wedge.coop/newsletter/article/368.html">http://www.wedge.coop/newsletter/article/368.html</a>
For those of you who may not be familiar with this issue (Professor Produce wasn't familiar with it until he turned to his good buddy Google), Burkholderia cepacia is a beneficial bacterium that has found an agricultural niche for itself in fighting certain plant and soil borne diseases (rhizoctonia, fusarium, and pythium for those of you who simply must know). Moreover, it's naturally occuring, so organic farmers especially like B. cepacia because this wonder bug actually degrades chlorinated hydrocarbons and herbicides in farm soil and groundwater. Organic farming refers to this use of microbes in agriculture as "biocontrol."
Unfortunately, use of B. cepacia has a huge drawback, as Jenny from AOL points out. Cystic fibrosis sufferers are vulnerable to lung infections from B. cepacia - so vulnerable that the Cystic Fibrosis Foundation had to issue a statement in 2000 saying that folks infected with B. cepacia were not allowed to attend CFF functions for fear of spreading the bacteria to other cystic fibrosis sufferers. Scarier still is this microbe's strong resistance to antibiotics, making it a particularly deadly bacterium for that population.
But before anyone flies off the handle, please take note: There is considerable disagreement about how much of a threat using B. cepacia as biocontrol poses to vulnerable cystic fibrosis patients. Burkholderia cepacia is abundant in nature, with at least nine different species swimming in the Earth's topsoil. Because of this prevalence, it's been difficult for researchers to determine what a safe or dangerous amount might be for use in biocontrol. Just this year, the Environmental Protection Agency has launched a major assessment of B. cepacia's real effect on public health, placing a moratorium on any new significant uses for B. cepacia in the meanwhile.
The average shopper has absolutely nothing to fear from B. cepacia, but CF sufferers might want to take extra care in washing produce - particularly items like bell peppers, tomatoes, onions, and potatoes. The Cystic Fibrosis Foundation recommends washing hands (and, we can conclude, produce) for at least 15 seconds, and we here at The Prof Produce Institute for Clean Veggies always recommend a cap full of hydrogen peroxide in a quart of water for washing produce. We keep this mixture in a plastic bottle by the sink when we wash veggies for dinner.
taken from:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.wedge.coop/newsletter/article/368.html">http://www.wedge.coop/newsletter/article/368.html</a>
thelizardqueen
New member
I rinse stuff with water. I'm not that concerned about catching something from rinsing a potato with water.
L
littlemisssilly
Guest
Hi Ricky,
Thanks for your post, it's good to hear about other people with CF who have had Cepacia for as long a time as me and still remain ok health wise.
I personally never used to get anxious about Cepacia until the CF Association starting segregating sectors of the CF community and people to this day perpetuate all this hysteria about Cepacia, don't get me wrong, I don't want to down grade the seriousness that Cepacia has caused to some people, but it just makes sufferers like me scared and anxious and lose perspective of the fact that my lung function has remained stable all these years (as my doctor keeps reminding me whenever I start getting overwhelmed!).
As much as it breaks my heart, I would never attend any CF camps or conferences etc (cepacia or no cepacia) because any bacteria can be harmful / damaging to CF health and you just never know .... what lays dormant in one person's lungs could be deadly to another...
Thanks for your post, it's good to hear about other people with CF who have had Cepacia for as long a time as me and still remain ok health wise.
I personally never used to get anxious about Cepacia until the CF Association starting segregating sectors of the CF community and people to this day perpetuate all this hysteria about Cepacia, don't get me wrong, I don't want to down grade the seriousness that Cepacia has caused to some people, but it just makes sufferers like me scared and anxious and lose perspective of the fact that my lung function has remained stable all these years (as my doctor keeps reminding me whenever I start getting overwhelmed!).
As much as it breaks my heart, I would never attend any CF camps or conferences etc (cepacia or no cepacia) because any bacteria can be harmful / damaging to CF health and you just never know .... what lays dormant in one person's lungs could be deadly to another...
I know before my son had his transplant I never wanted to hear negative things about what could happen with cepacia, however, seeing as this subject has been brought up I just wanted to tell all of you how important it is to stay as healthy as you can and keep up with your meds and excercising religiously.
My son had cepacia for quite a few years which I think he most probably caught during summer camp when they were in operation during the 80's. He did fine living with cepacia, very seldom hospitalized up until the last couple of years before he passed away.
There are many hospitals that will not transplant those with cepacia as the risks are much greater. Toronto General is one hospital that will transplant cepacia patients and I personally know individuals that are doing quite well having cepacia and being transplanted. However my son was one that was not so lucky and unfortunately the worst thing that could happen, did, the cepacia got into his new lungs and then into his bloodstream. He never had the chance to use his new lungs at all and passed away two weeks after surgery.
I have hesitated, since this subject came up, whether or not to post this message but I really wanted to impress upon you how important it is to keep as healthy as you possibly can. Medical science has come such a long way since my son was first diagnosed and to be able to have the chance of a better life with a transplant is absolutely wonderful. Of course as time goes on, the more research is being done and the risks of transplant, with or without cepacia, will one day, be a thing of the past.
Stay healthy
Sandy
Mom of Matt, 06/01/1978 - 15/05/2005
My son had cepacia for quite a few years which I think he most probably caught during summer camp when they were in operation during the 80's. He did fine living with cepacia, very seldom hospitalized up until the last couple of years before he passed away.
There are many hospitals that will not transplant those with cepacia as the risks are much greater. Toronto General is one hospital that will transplant cepacia patients and I personally know individuals that are doing quite well having cepacia and being transplanted. However my son was one that was not so lucky and unfortunately the worst thing that could happen, did, the cepacia got into his new lungs and then into his bloodstream. He never had the chance to use his new lungs at all and passed away two weeks after surgery.
I have hesitated, since this subject came up, whether or not to post this message but I really wanted to impress upon you how important it is to keep as healthy as you possibly can. Medical science has come such a long way since my son was first diagnosed and to be able to have the chance of a better life with a transplant is absolutely wonderful. Of course as time goes on, the more research is being done and the risks of transplant, with or without cepacia, will one day, be a thing of the past.
Stay healthy
Sandy
Mom of Matt, 06/01/1978 - 15/05/2005
How do you know if you have it?
I was reading some of the post this morning, and the part about the dirt freaked me out. I have played sports all my life (I am a girl so I played softball--inhaled tons of dirt sliding into bases. But, this weekend I spent 3 days cleaning out my backyard. We are talking 12 hour days in the hot sun (I'm from the south), digging, hoeing, and uprooting cane/bamboo. We bought a house that was built in the 40's and has a probably 30 feet of cane in a huge area growing. Well, at least it did, I chopped it <i>all</i> down this weekend. I also used a blower and had leaves and dust everwhere. I did use a mask, but not everyday and not the entire time. Anyway, I was freaking out, and late for work after reading that about the dirt. I called my husband yelling I have b.cepacia.... <img src="i/expressions/face-icon-small-smile.gif" border="0"> After I calmed down I researched it a bunch. I went to a bunch of agricultural websites. Most said that it can live on dry ground for a few days(4-5). It can live in water for a month or so. It depends on the heat etc... So, it is found in a lot of pesticides and on the ground. But, from reading, it looked like the only way you can 'get it' from dirt was if you were in the same region with in 4-5 days of someone coughing etc.. that had it. Then you took in a mouthful of that dirt. Most articles said the stuff in pesticides dies in a couple of days--unless it got in water and then it could live longer. So, I think I am safe.... Is any of this right? I did read several articles very quickly (I really was late for work). Should I still be worried? Well, there is not much I can do about it now anyway. I think I am looking for reassurance.....<img src="i/expressions/face-icon-small-smile.gif" border="0">
I was reading some of the post this morning, and the part about the dirt freaked me out. I have played sports all my life (I am a girl so I played softball--inhaled tons of dirt sliding into bases. But, this weekend I spent 3 days cleaning out my backyard. We are talking 12 hour days in the hot sun (I'm from the south), digging, hoeing, and uprooting cane/bamboo. We bought a house that was built in the 40's and has a probably 30 feet of cane in a huge area growing. Well, at least it did, I chopped it <i>all</i> down this weekend. I also used a blower and had leaves and dust everwhere. I did use a mask, but not everyday and not the entire time. Anyway, I was freaking out, and late for work after reading that about the dirt. I called my husband yelling I have b.cepacia.... <img src="i/expressions/face-icon-small-smile.gif" border="0"> After I calmed down I researched it a bunch. I went to a bunch of agricultural websites. Most said that it can live on dry ground for a few days(4-5). It can live in water for a month or so. It depends on the heat etc... So, it is found in a lot of pesticides and on the ground. But, from reading, it looked like the only way you can 'get it' from dirt was if you were in the same region with in 4-5 days of someone coughing etc.. that had it. Then you took in a mouthful of that dirt. Most articles said the stuff in pesticides dies in a couple of days--unless it got in water and then it could live longer. So, I think I am safe.... Is any of this right? I did read several articles very quickly (I really was late for work). Should I still be worried? Well, there is not much I can do about it now anyway. I think I am looking for reassurance.....<img src="i/expressions/face-icon-small-smile.gif" border="0">
I think I just answered my own post. I was still doing some research. Most of the stuff we get is from the community virus, not the other strands. i was reading this article
<a target=_blank class=ftalternatingbarlinklarge href="http://www.apsnet.org/online/feature/BurkholderiaCepacia/top.html
">http://www.apsnet.org/online/f...deriaCepacia/top.html
</a>
It has some pretty good info.
<img src="i/expressions/face-icon-small-smile.gif" border="0">
<a target=_blank class=ftalternatingbarlinklarge href="http://www.apsnet.org/online/feature/BurkholderiaCepacia/top.html
">http://www.apsnet.org/online/f...deriaCepacia/top.html
</a>
It has some pretty good info.
<img src="i/expressions/face-icon-small-smile.gif" border="0">
My son cultured B. Cepacia about 3 years ago. He was 17 years old. We had started to see some decline in his lung function a little before his started to culture it. After culturing Cepcia he had a 20-25% decrease in his lung functions. It was very frustrating. He was on IV antibiotics more than he wasn't. When the resistant tests came back, he showed resistance to almost everything. Luckily for us we have a very Stubborn and determined doctor. After conference calls with doctors in other contries, he learned that even if you are resistant to one antibiotic, using antibiotic "cocktails" may be more affective. We also use HS along with Aztreoem. All that have made big difference. Not only has he been able to stabilize and not decline any further but he has also increased his lung function.
Now with that being said, we don't "wait anything out". Every sign of any illness gets treated right away and treated very aggressively. He is on IV's more often than he was pre-cepacia. (4 times in the last year)
We are definately more aware of our surrounding. He pays attention to what he touches or where he is having a coughing spell.
I think sometimes I have been know as the "Mom from H@ll" when it comes to infection control. I don't have the control of keeping Cepecia away from Cory but I do have control in helping to keep some ignorant nurse or therapist from carring it over to someone else.
Now with that being said, we don't "wait anything out". Every sign of any illness gets treated right away and treated very aggressively. He is on IV's more often than he was pre-cepacia. (4 times in the last year)
We are definately more aware of our surrounding. He pays attention to what he touches or where he is having a coughing spell.
I think sometimes I have been know as the "Mom from H@ll" when it comes to infection control. I don't have the control of keeping Cepecia away from Cory but I do have control in helping to keep some ignorant nurse or therapist from carring it over to someone else.
Hey scarlett81,
I've had cepacia scince 1996. I was tested for it every 3 months when I lived in Atlanta (1990 - 2005). That's when they started seggregating cepacia patients from the other Cf patients. From what I was told you can only catch it from other Cf patients. I'm not sure if that's true, but i did test negative until 1996. I try stay active and do my tretments. My wife and I also wanted a family but I'm in that group 98% of men with Cf who cant have kids . My wife and I tried invitro and other things but nothing ever worked. She wants kids (biologically) really bad. It put a strain on our marriage and we seperated efter 12 years of marriage last year and with the way things are now I'm sure we'll never stay together. She's 8 years younger than me and as they say her biological clock is ticking. I'm not mad at her or hate her or anything I guess being a man I can't understand what she'e going through and she doesn't know what I am going through and it just wasn't meant to be. Hang in there, having cepatia is not a death sentence.
I've had cepacia scince 1996. I was tested for it every 3 months when I lived in Atlanta (1990 - 2005). That's when they started seggregating cepacia patients from the other Cf patients. From what I was told you can only catch it from other Cf patients. I'm not sure if that's true, but i did test negative until 1996. I try stay active and do my tretments. My wife and I also wanted a family but I'm in that group 98% of men with Cf who cant have kids . My wife and I tried invitro and other things but nothing ever worked. She wants kids (biologically) really bad. It put a strain on our marriage and we seperated efter 12 years of marriage last year and with the way things are now I'm sure we'll never stay together. She's 8 years younger than me and as they say her biological clock is ticking. I'm not mad at her or hate her or anything I guess being a man I can't understand what she'e going through and she doesn't know what I am going through and it just wasn't meant to be. Hang in there, having cepatia is not a death sentence.
thelizardqueen
New member
From what I understand, you can't just catch cepacia from CFers. You can catch it from anyone who has it like seniors. Isn't there someone on here who caught it because they worked in a seniors hom?
Is this an underlying thing that once you've got it
that it's always there or is there actually a way to
"Get Rid" of it. I'm in the slightly mis understood
group of people.
I had cultured cepacia may '05 but latest cultures
have had not traces. So I'm just courious if it
could still be lurking around somewhere in my lungs.
that it's always there or is there actually a way to
"Get Rid" of it. I'm in the slightly mis understood
group of people.
I had cultured cepacia may '05 but latest cultures
have had not traces. So I'm just courious if it
could still be lurking around somewhere in my lungs.