Should I work on a bacteria free environment for my son

Alyssa

New member
I couldn't bring up lightnlife's article (from the link) either, but if you click on her link then search for the title that she mentions, it will come up
 

Alyssa

New member
I couldn't bring up lightnlife's article (from the link) either, but if you click on her link then search for the title that she mentions, it will come up
 

Alyssa

New member
I couldn't bring up lightnlife's article (from the link) either, but if you click on her link then search for the title that she mentions, it will come up
 

Alyssa

New member
I couldn't bring up lightnlife's article (from the link) either, but if you click on her link then search for the title that she mentions, it will come up
 

Alyssa

New member
I couldn't bring up lightnlife's article (from the link) either, but if you click on her link then search for the title that she mentions, it will come up
 

Emily65Roses

New member
A lot of people won't agree with me on this, but I think a bacteria-free environment is stupid. First of all... it doesn't exist. Second of all, bacteria will not kill you. Yes, even if you have CF. You want to clean stuff like the bathroom, sure. You crap in there, it only makes sense. But you don't need to scrub every surface in your house down with antibacterial garbage. That's why antibiotics never work anymore -- people OVER sanitize stuff.

Yes, from what I understand, burkholderia cepacia comes from bad onions. I eat onions all the time, so we do have them. We just throw out the gross ones.

As for all the pseudomonas... yes, it's a water bug. But I mean that literally. Even if you clean the puddles and stuff in the bathroom/kitchen, pseudomonas is IN water. So if your kid ever drinks water or washes his hands or brushes his teeth, he's coming into contact with it. Sad fact is, almost EVERYONE with CF will get pseudomonas at some time or another. Many will get several. And it's a pain, but so is CF. Not much you can do about it.
 

Emily65Roses

New member
A lot of people won't agree with me on this, but I think a bacteria-free environment is stupid. First of all... it doesn't exist. Second of all, bacteria will not kill you. Yes, even if you have CF. You want to clean stuff like the bathroom, sure. You crap in there, it only makes sense. But you don't need to scrub every surface in your house down with antibacterial garbage. That's why antibiotics never work anymore -- people OVER sanitize stuff.

Yes, from what I understand, burkholderia cepacia comes from bad onions. I eat onions all the time, so we do have them. We just throw out the gross ones.

As for all the pseudomonas... yes, it's a water bug. But I mean that literally. Even if you clean the puddles and stuff in the bathroom/kitchen, pseudomonas is IN water. So if your kid ever drinks water or washes his hands or brushes his teeth, he's coming into contact with it. Sad fact is, almost EVERYONE with CF will get pseudomonas at some time or another. Many will get several. And it's a pain, but so is CF. Not much you can do about it.
 

Emily65Roses

New member
A lot of people won't agree with me on this, but I think a bacteria-free environment is stupid. First of all... it doesn't exist. Second of all, bacteria will not kill you. Yes, even if you have CF. You want to clean stuff like the bathroom, sure. You crap in there, it only makes sense. But you don't need to scrub every surface in your house down with antibacterial garbage. That's why antibiotics never work anymore -- people OVER sanitize stuff.

Yes, from what I understand, burkholderia cepacia comes from bad onions. I eat onions all the time, so we do have them. We just throw out the gross ones.

As for all the pseudomonas... yes, it's a water bug. But I mean that literally. Even if you clean the puddles and stuff in the bathroom/kitchen, pseudomonas is IN water. So if your kid ever drinks water or washes his hands or brushes his teeth, he's coming into contact with it. Sad fact is, almost EVERYONE with CF will get pseudomonas at some time or another. Many will get several. And it's a pain, but so is CF. Not much you can do about it.
 

Emily65Roses

New member
A lot of people won't agree with me on this, but I think a bacteria-free environment is stupid. First of all... it doesn't exist. Second of all, bacteria will not kill you. Yes, even if you have CF. You want to clean stuff like the bathroom, sure. You crap in there, it only makes sense. But you don't need to scrub every surface in your house down with antibacterial garbage. That's why antibiotics never work anymore -- people OVER sanitize stuff.

Yes, from what I understand, burkholderia cepacia comes from bad onions. I eat onions all the time, so we do have them. We just throw out the gross ones.

As for all the pseudomonas... yes, it's a water bug. But I mean that literally. Even if you clean the puddles and stuff in the bathroom/kitchen, pseudomonas is IN water. So if your kid ever drinks water or washes his hands or brushes his teeth, he's coming into contact with it. Sad fact is, almost EVERYONE with CF will get pseudomonas at some time or another. Many will get several. And it's a pain, but so is CF. Not much you can do about it.
 

Emily65Roses

New member
A lot of people won't agree with me on this, but I think a bacteria-free environment is stupid. First of all... it doesn't exist. Second of all, bacteria will not kill you. Yes, even if you have CF. You want to clean stuff like the bathroom, sure. You crap in there, it only makes sense. But you don't need to scrub every surface in your house down with antibacterial garbage. That's why antibiotics never work anymore -- people OVER sanitize stuff.

Yes, from what I understand, burkholderia cepacia comes from bad onions. I eat onions all the time, so we do have them. We just throw out the gross ones.

As for all the pseudomonas... yes, it's a water bug. But I mean that literally. Even if you clean the puddles and stuff in the bathroom/kitchen, pseudomonas is IN water. So if your kid ever drinks water or washes his hands or brushes his teeth, he's coming into contact with it. Sad fact is, almost EVERYONE with CF will get pseudomonas at some time or another. Many will get several. And it's a pain, but so is CF. Not much you can do about it.
 

spacemom

New member
Well, guess what.... doctor showed up at DS's room in hospital while I was there in the p.m. so I asked her these same Q's... and she said practically the same as Emily65roses... she said DS has to go on with his normal life, in contact with all kinds of germs... she said the potential harm is inside him already, meaning the pseudo and staph cultures... she said it's no use to disinfect everything and turn him into a bubble boy, she also said NO air purifier in the world gets rid of bacteria and the proof is, they don't have them at hospitals. She said anti-bacteria soaps and stuff is sheer propaganda.

So i'm kind of baffled here, not sure what to do. We also spoke of other things, among which a cure - my son asked her about gene therapy - she said forget it, the medical class is very skeptical about that because a vector is needed to deliver the good DNA and it must be something like a virus, and in the end it becomes toxic to the body. Rather focus on treating symptoms the most effective way, in my DS's case clearing mucus from the lungs and keeping the cultures to a minimum. She also said many diseases don't have a cure - eg asthma, diabetes - but by treating the symptoms people get a good chance of not dying from them the way they died 20, 50 or 100 years ago.

Thanks for your input guys, and please add more if you have something to add.
Now off to follow Alyssa's suggestion and read Light's article.
 

spacemom

New member
Well, guess what.... doctor showed up at DS's room in hospital while I was there in the p.m. so I asked her these same Q's... and she said practically the same as Emily65roses... she said DS has to go on with his normal life, in contact with all kinds of germs... she said the potential harm is inside him already, meaning the pseudo and staph cultures... she said it's no use to disinfect everything and turn him into a bubble boy, she also said NO air purifier in the world gets rid of bacteria and the proof is, they don't have them at hospitals. She said anti-bacteria soaps and stuff is sheer propaganda.

So i'm kind of baffled here, not sure what to do. We also spoke of other things, among which a cure - my son asked her about gene therapy - she said forget it, the medical class is very skeptical about that because a vector is needed to deliver the good DNA and it must be something like a virus, and in the end it becomes toxic to the body. Rather focus on treating symptoms the most effective way, in my DS's case clearing mucus from the lungs and keeping the cultures to a minimum. She also said many diseases don't have a cure - eg asthma, diabetes - but by treating the symptoms people get a good chance of not dying from them the way they died 20, 50 or 100 years ago.

Thanks for your input guys, and please add more if you have something to add.
Now off to follow Alyssa's suggestion and read Light's article.
 

spacemom

New member
Well, guess what.... doctor showed up at DS's room in hospital while I was there in the p.m. so I asked her these same Q's... and she said practically the same as Emily65roses... she said DS has to go on with his normal life, in contact with all kinds of germs... she said the potential harm is inside him already, meaning the pseudo and staph cultures... she said it's no use to disinfect everything and turn him into a bubble boy, she also said NO air purifier in the world gets rid of bacteria and the proof is, they don't have them at hospitals. She said anti-bacteria soaps and stuff is sheer propaganda.

So i'm kind of baffled here, not sure what to do. We also spoke of other things, among which a cure - my son asked her about gene therapy - she said forget it, the medical class is very skeptical about that because a vector is needed to deliver the good DNA and it must be something like a virus, and in the end it becomes toxic to the body. Rather focus on treating symptoms the most effective way, in my DS's case clearing mucus from the lungs and keeping the cultures to a minimum. She also said many diseases don't have a cure - eg asthma, diabetes - but by treating the symptoms people get a good chance of not dying from them the way they died 20, 50 or 100 years ago.

Thanks for your input guys, and please add more if you have something to add.
Now off to follow Alyssa's suggestion and read Light's article.
 

spacemom

New member
Well, guess what.... doctor showed up at DS's room in hospital while I was there in the p.m. so I asked her these same Q's... and she said practically the same as Emily65roses... she said DS has to go on with his normal life, in contact with all kinds of germs... she said the potential harm is inside him already, meaning the pseudo and staph cultures... she said it's no use to disinfect everything and turn him into a bubble boy, she also said NO air purifier in the world gets rid of bacteria and the proof is, they don't have them at hospitals. She said anti-bacteria soaps and stuff is sheer propaganda.

So i'm kind of baffled here, not sure what to do. We also spoke of other things, among which a cure - my son asked her about gene therapy - she said forget it, the medical class is very skeptical about that because a vector is needed to deliver the good DNA and it must be something like a virus, and in the end it becomes toxic to the body. Rather focus on treating symptoms the most effective way, in my DS's case clearing mucus from the lungs and keeping the cultures to a minimum. She also said many diseases don't have a cure - eg asthma, diabetes - but by treating the symptoms people get a good chance of not dying from them the way they died 20, 50 or 100 years ago.

Thanks for your input guys, and please add more if you have something to add.
Now off to follow Alyssa's suggestion and read Light's article.
 

spacemom

New member
Well, guess what.... doctor showed up at DS's room in hospital while I was there in the p.m. so I asked her these same Q's... and she said practically the same as Emily65roses... she said DS has to go on with his normal life, in contact with all kinds of germs... she said the potential harm is inside him already, meaning the pseudo and staph cultures... she said it's no use to disinfect everything and turn him into a bubble boy, she also said NO air purifier in the world gets rid of bacteria and the proof is, they don't have them at hospitals. She said anti-bacteria soaps and stuff is sheer propaganda.

So i'm kind of baffled here, not sure what to do. We also spoke of other things, among which a cure - my son asked her about gene therapy - she said forget it, the medical class is very skeptical about that because a vector is needed to deliver the good DNA and it must be something like a virus, and in the end it becomes toxic to the body. Rather focus on treating symptoms the most effective way, in my DS's case clearing mucus from the lungs and keeping the cultures to a minimum. She also said many diseases don't have a cure - eg asthma, diabetes - but by treating the symptoms people get a good chance of not dying from them the way they died 20, 50 or 100 years ago.

Thanks for your input guys, and please add more if you have something to add.
Now off to follow Alyssa's suggestion and read Light's article.
 

Alyssa

New member
Wow, although correct, I hope her delivery was a little better than what you have typed out :) I'm used to our doctor being a little more on the positive side. I guess she got her point across though because there was no mensing words :)

I get what she was saying -- your efforts would be better spent on treating his CF symptoms, not trying to scrub your house clean :) And, yes, you need to concentrate on treating his problems now, rather than sitting on your hands hoping for the cure to come.... but I don't think that's what you were asking to do! Anyway, she is correct, they are having problems with the delivery of the DNA, but our doctor is still very excited about the prospect of it working at some point. And, as a side note, so far, if they do get it to work, it will only work on gene mutations that end with an X

She is also correct about air purifiers not getting rid of <b>bacteria</b> (I don't think anyone here suggested they did) but they are generally helpful in other ways by making the air "cleaner", easier for people with asthma or allergies to tolerate because a good HEPA filter <b>will</b> remove mold & pollen spores, dust mites & pet dander. In my book, anything that removes potential irritants to the lungs, would be a good thing for a person with CF to have around.
 

Alyssa

New member
Wow, although correct, I hope her delivery was a little better than what you have typed out :) I'm used to our doctor being a little more on the positive side. I guess she got her point across though because there was no mensing words :)

I get what she was saying -- your efforts would be better spent on treating his CF symptoms, not trying to scrub your house clean :) And, yes, you need to concentrate on treating his problems now, rather than sitting on your hands hoping for the cure to come.... but I don't think that's what you were asking to do! Anyway, she is correct, they are having problems with the delivery of the DNA, but our doctor is still very excited about the prospect of it working at some point. And, as a side note, so far, if they do get it to work, it will only work on gene mutations that end with an X

She is also correct about air purifiers not getting rid of <b>bacteria</b> (I don't think anyone here suggested they did) but they are generally helpful in other ways by making the air "cleaner", easier for people with asthma or allergies to tolerate because a good HEPA filter <b>will</b> remove mold & pollen spores, dust mites & pet dander. In my book, anything that removes potential irritants to the lungs, would be a good thing for a person with CF to have around.
 

Alyssa

New member
Wow, although correct, I hope her delivery was a little better than what you have typed out :) I'm used to our doctor being a little more on the positive side. I guess she got her point across though because there was no mensing words :)

I get what she was saying -- your efforts would be better spent on treating his CF symptoms, not trying to scrub your house clean :) And, yes, you need to concentrate on treating his problems now, rather than sitting on your hands hoping for the cure to come.... but I don't think that's what you were asking to do! Anyway, she is correct, they are having problems with the delivery of the DNA, but our doctor is still very excited about the prospect of it working at some point. And, as a side note, so far, if they do get it to work, it will only work on gene mutations that end with an X

She is also correct about air purifiers not getting rid of <b>bacteria</b> (I don't think anyone here suggested they did) but they are generally helpful in other ways by making the air "cleaner", easier for people with asthma or allergies to tolerate because a good HEPA filter <b>will</b> remove mold & pollen spores, dust mites & pet dander. In my book, anything that removes potential irritants to the lungs, would be a good thing for a person with CF to have around.
 

Alyssa

New member
Wow, although correct, I hope her delivery was a little better than what you have typed out :) I'm used to our doctor being a little more on the positive side. I guess she got her point across though because there was no mensing words :)

I get what she was saying -- your efforts would be better spent on treating his CF symptoms, not trying to scrub your house clean :) And, yes, you need to concentrate on treating his problems now, rather than sitting on your hands hoping for the cure to come.... but I don't think that's what you were asking to do! Anyway, she is correct, they are having problems with the delivery of the DNA, but our doctor is still very excited about the prospect of it working at some point. And, as a side note, so far, if they do get it to work, it will only work on gene mutations that end with an X

She is also correct about air purifiers not getting rid of <b>bacteria</b> (I don't think anyone here suggested they did) but they are generally helpful in other ways by making the air "cleaner", easier for people with asthma or allergies to tolerate because a good HEPA filter <b>will</b> remove mold & pollen spores, dust mites & pet dander. In my book, anything that removes potential irritants to the lungs, would be a good thing for a person with CF to have around.
 

Alyssa

New member
Wow, although correct, I hope her delivery was a little better than what you have typed out :) I'm used to our doctor being a little more on the positive side. I guess she got her point across though because there was no mensing words :)

I get what she was saying -- your efforts would be better spent on treating his CF symptoms, not trying to scrub your house clean :) And, yes, you need to concentrate on treating his problems now, rather than sitting on your hands hoping for the cure to come.... but I don't think that's what you were asking to do! Anyway, she is correct, they are having problems with the delivery of the DNA, but our doctor is still very excited about the prospect of it working at some point. And, as a side note, so far, if they do get it to work, it will only work on gene mutations that end with an X

She is also correct about air purifiers not getting rid of <b>bacteria</b> (I don't think anyone here suggested they did) but they are generally helpful in other ways by making the air "cleaner", easier for people with asthma or allergies to tolerate because a good HEPA filter <b>will</b> remove mold & pollen spores, dust mites & pet dander. In my book, anything that removes potential irritants to the lungs, would be a good thing for a person with CF to have around.
 
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