You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Doc telling not to look up cf sites
- Thread starter anonymous
- Start date
JennifersHope
New member
When I was first dignoised with Addison's disease, I was told not to look information randomly up on the internet, especially when it came to steroids. Same thing with CF, because I was told I was not a typical case of CF, I can understand to some degree the point, this website in particular is my home away from home, and is wonderful, NO ONE diagnoises anyone, we just lend support, share information, and experiences which has changed my life for the good in so many ways.
However, if I scroll through the internet, I can find some really crappy, horror stories, worst case scenerios in both the diseases I have. Some web sites are made by people and it is very subjective information that only applied to their cases. An example is this addison's disease website, that I read.. Very few ppl in this world have addison's so we are a rare bunch... but, on this website, these people, many of them being misdiagnoised for years, myself included, are very bitter toward doctors, (not me anymore) and they try to treat themselves, they give each other medical advise on changing their meds, IT is very dangerous and stupid...and I so wish I had a different place to share ideas with, though recently I did meet another CFer who lives in England that has Addison's... we IM.. but I am digressing here..
I say support groups, education from the correct sources, and everything else this website ( though I am wondering if the persons doctor meant just random information on the website) and many of the other Cf websites offers is a wonderful source of enrichment in someone's life, I have been on some really crappy websites in the name of information searching about steroid use, addison's disease, and also CF where I was personally horrified, and found it do nothing but cause anxiety in me, only to find it wasn't true information....
Before I dumped this doctor, I would find out more specifically how he felt about qualified websites, if he was still against it, then I would consider an alternate doctor.
Just my half pennies worth,
Jennifer
However, if I scroll through the internet, I can find some really crappy, horror stories, worst case scenerios in both the diseases I have. Some web sites are made by people and it is very subjective information that only applied to their cases. An example is this addison's disease website, that I read.. Very few ppl in this world have addison's so we are a rare bunch... but, on this website, these people, many of them being misdiagnoised for years, myself included, are very bitter toward doctors, (not me anymore) and they try to treat themselves, they give each other medical advise on changing their meds, IT is very dangerous and stupid...and I so wish I had a different place to share ideas with, though recently I did meet another CFer who lives in England that has Addison's... we IM.. but I am digressing here..
I say support groups, education from the correct sources, and everything else this website ( though I am wondering if the persons doctor meant just random information on the website) and many of the other Cf websites offers is a wonderful source of enrichment in someone's life, I have been on some really crappy websites in the name of information searching about steroid use, addison's disease, and also CF where I was personally horrified, and found it do nothing but cause anxiety in me, only to find it wasn't true information....
Before I dumped this doctor, I would find out more specifically how he felt about qualified websites, if he was still against it, then I would consider an alternate doctor.
Just my half pennies worth,
Jennifer
JennifersHope
New member
When I was first dignoised with Addison's disease, I was told not to look information randomly up on the internet, especially when it came to steroids. Same thing with CF, because I was told I was not a typical case of CF, I can understand to some degree the point, this website in particular is my home away from home, and is wonderful, NO ONE diagnoises anyone, we just lend support, share information, and experiences which has changed my life for the good in so many ways.
However, if I scroll through the internet, I can find some really crappy, horror stories, worst case scenerios in both the diseases I have. Some web sites are made by people and it is very subjective information that only applied to their cases. An example is this addison's disease website, that I read.. Very few ppl in this world have addison's so we are a rare bunch... but, on this website, these people, many of them being misdiagnoised for years, myself included, are very bitter toward doctors, (not me anymore) and they try to treat themselves, they give each other medical advise on changing their meds, IT is very dangerous and stupid...and I so wish I had a different place to share ideas with, though recently I did meet another CFer who lives in England that has Addison's... we IM.. but I am digressing here..
I say support groups, education from the correct sources, and everything else this website ( though I am wondering if the persons doctor meant just random information on the website) and many of the other Cf websites offers is a wonderful source of enrichment in someone's life, I have been on some really crappy websites in the name of information searching about steroid use, addison's disease, and also CF where I was personally horrified, and found it do nothing but cause anxiety in me, only to find it wasn't true information....
Before I dumped this doctor, I would find out more specifically how he felt about qualified websites, if he was still against it, then I would consider an alternate doctor.
Just my half pennies worth,
Jennifer
However, if I scroll through the internet, I can find some really crappy, horror stories, worst case scenerios in both the diseases I have. Some web sites are made by people and it is very subjective information that only applied to their cases. An example is this addison's disease website, that I read.. Very few ppl in this world have addison's so we are a rare bunch... but, on this website, these people, many of them being misdiagnoised for years, myself included, are very bitter toward doctors, (not me anymore) and they try to treat themselves, they give each other medical advise on changing their meds, IT is very dangerous and stupid...and I so wish I had a different place to share ideas with, though recently I did meet another CFer who lives in England that has Addison's... we IM.. but I am digressing here..
I say support groups, education from the correct sources, and everything else this website ( though I am wondering if the persons doctor meant just random information on the website) and many of the other Cf websites offers is a wonderful source of enrichment in someone's life, I have been on some really crappy websites in the name of information searching about steroid use, addison's disease, and also CF where I was personally horrified, and found it do nothing but cause anxiety in me, only to find it wasn't true information....
Before I dumped this doctor, I would find out more specifically how he felt about qualified websites, if he was still against it, then I would consider an alternate doctor.
Just my half pennies worth,
Jennifer
CFHockeyMom
New member
Firstly, I highly doubt that their Dr. was speaking directly about this site.
Secondly, there is a lot of crap information on the internet about every subject. I think this site is great and provides an excellent source of information, advice, and support but we've had people come on and try to sell stuff and don't even get me started on the whole gluconutrients thread.
Our CF Dr. steered us away from the internet initially. Let's face it, newbies can be overwhelmed and possibly even gullable so any kind of misinformation is bad! I think you need to get a "handle" on the disease and learn all the facts but not everything that's published is fact (especially on the net).
Secondly, there is a lot of crap information on the internet about every subject. I think this site is great and provides an excellent source of information, advice, and support but we've had people come on and try to sell stuff and don't even get me started on the whole gluconutrients thread.
Our CF Dr. steered us away from the internet initially. Let's face it, newbies can be overwhelmed and possibly even gullable so any kind of misinformation is bad! I think you need to get a "handle" on the disease and learn all the facts but not everything that's published is fact (especially on the net).
CFHockeyMom
New member
Firstly, I highly doubt that their Dr. was speaking directly about this site.
Secondly, there is a lot of crap information on the internet about every subject. I think this site is great and provides an excellent source of information, advice, and support but we've had people come on and try to sell stuff and don't even get me started on the whole gluconutrients thread.
Our CF Dr. steered us away from the internet initially. Let's face it, newbies can be overwhelmed and possibly even gullable so any kind of misinformation is bad! I think you need to get a "handle" on the disease and learn all the facts but not everything that's published is fact (especially on the net).
Secondly, there is a lot of crap information on the internet about every subject. I think this site is great and provides an excellent source of information, advice, and support but we've had people come on and try to sell stuff and don't even get me started on the whole gluconutrients thread.
Our CF Dr. steered us away from the internet initially. Let's face it, newbies can be overwhelmed and possibly even gullable so any kind of misinformation is bad! I think you need to get a "handle" on the disease and learn all the facts but not everything that's published is fact (especially on the net).
Hey,
I've been told by my doc to just be careful and not take any supplement without running it by her first. Maybe that was his intent, to just tell you to be careful, and there's nothign wrong with that. Some people do just listen to whatever anyone tells them. But, he shouldn't have worded it that way, and taken into account that these sites are a great support for you. I don't like his insensitivity.
I would bring it up, tell him you don't appreciate that, and then explain that you'd wouldn't change your regimen, or self'diagnose without asking him. (provided you wouldn't )
The worst is when you have a doc that is so self confident they won't consider anyone's opinion/or think outside the box.
Good luck!
Christian
I've been told by my doc to just be careful and not take any supplement without running it by her first. Maybe that was his intent, to just tell you to be careful, and there's nothign wrong with that. Some people do just listen to whatever anyone tells them. But, he shouldn't have worded it that way, and taken into account that these sites are a great support for you. I don't like his insensitivity.
I would bring it up, tell him you don't appreciate that, and then explain that you'd wouldn't change your regimen, or self'diagnose without asking him. (provided you wouldn't )
The worst is when you have a doc that is so self confident they won't consider anyone's opinion/or think outside the box.
Good luck!
Christian
Hey,
I've been told by my doc to just be careful and not take any supplement without running it by her first. Maybe that was his intent, to just tell you to be careful, and there's nothign wrong with that. Some people do just listen to whatever anyone tells them. But, he shouldn't have worded it that way, and taken into account that these sites are a great support for you. I don't like his insensitivity.
I would bring it up, tell him you don't appreciate that, and then explain that you'd wouldn't change your regimen, or self'diagnose without asking him. (provided you wouldn't )
The worst is when you have a doc that is so self confident they won't consider anyone's opinion/or think outside the box.
Good luck!
Christian
I've been told by my doc to just be careful and not take any supplement without running it by her first. Maybe that was his intent, to just tell you to be careful, and there's nothign wrong with that. Some people do just listen to whatever anyone tells them. But, he shouldn't have worded it that way, and taken into account that these sites are a great support for you. I don't like his insensitivity.
I would bring it up, tell him you don't appreciate that, and then explain that you'd wouldn't change your regimen, or self'diagnose without asking him. (provided you wouldn't )
The worst is when you have a doc that is so self confident they won't consider anyone's opinion/or think outside the box.
Good luck!
Christian
Some doctors get egotistical and butt-hurt by you looking around at other medical stuff. They think you are questioning their ability to treat you and ANY doctor who feels that way has some issues and you don't need them as a doctor.
Nobody is saying you did anyting wrong by coming to this site, telling your doc. and coming back to talk to us. We're pretty much saying your doc. is a Quack.
Nobody is saying you did anyting wrong by coming to this site, telling your doc. and coming back to talk to us. We're pretty much saying your doc. is a Quack.
Some doctors get egotistical and butt-hurt by you looking around at other medical stuff. They think you are questioning their ability to treat you and ANY doctor who feels that way has some issues and you don't need them as a doctor.
Nobody is saying you did anyting wrong by coming to this site, telling your doc. and coming back to talk to us. We're pretty much saying your doc. is a Quack.
Nobody is saying you did anyting wrong by coming to this site, telling your doc. and coming back to talk to us. We're pretty much saying your doc. is a Quack.
littledebbie
New member
Yes Sean, YOU should defineitely give it more time. If 20 slices doesn't do the trick you might want to increase to 25 slices and give it another 7-10 days.
Editing to say - Julie..."butt-hurt" lol oh, I'm gonna use that, that's hilarious.
Editing to say - Julie..."butt-hurt" lol oh, I'm gonna use that, that's hilarious.
littledebbie
New member
Yes Sean, YOU should defineitely give it more time. If 20 slices doesn't do the trick you might want to increase to 25 slices and give it another 7-10 days.
Editing to say - Julie..."butt-hurt" lol oh, I'm gonna use that, that's hilarious.
Editing to say - Julie..."butt-hurt" lol oh, I'm gonna use that, that's hilarious.
Sean, wether it's bacon or bolonga it might not cure the CF but you'll have no butt problems for sure - the frozen goodies would see to that!
Seriosly though I think there's nothing wrong with being informed. Where you might be really worried about a new symptom at least it helps to find out that there are other with the same that are doing just fine.
Also as a parent I may know what to look out for and what to expect but by reading the posts I have a better understanding of how Monique experiences the different aspects of CF. Even a doctor cannot tell you this they can only give you the "medical point of view".
Seriosly though I think there's nothing wrong with being informed. Where you might be really worried about a new symptom at least it helps to find out that there are other with the same that are doing just fine.
Also as a parent I may know what to look out for and what to expect but by reading the posts I have a better understanding of how Monique experiences the different aspects of CF. Even a doctor cannot tell you this they can only give you the "medical point of view".
Sean, wether it's bacon or bolonga it might not cure the CF but you'll have no butt problems for sure - the frozen goodies would see to that!
Seriosly though I think there's nothing wrong with being informed. Where you might be really worried about a new symptom at least it helps to find out that there are other with the same that are doing just fine.
Also as a parent I may know what to look out for and what to expect but by reading the posts I have a better understanding of how Monique experiences the different aspects of CF. Even a doctor cannot tell you this they can only give you the "medical point of view".
Seriosly though I think there's nothing wrong with being informed. Where you might be really worried about a new symptom at least it helps to find out that there are other with the same that are doing just fine.
Also as a parent I may know what to look out for and what to expect but by reading the posts I have a better understanding of how Monique experiences the different aspects of CF. Even a doctor cannot tell you this they can only give you the "medical point of view".
Our doctor told us the same thing when DS was first diagnosed -- basically told us that a LOT of info out there was outdated because of all the advances. Also told us not to run to the library to research. Suggested a few websites to look at CFF, etc. that would have more recent up to date info. And I can see his point -- we got a book for Xmas on CF and while it had a publication date of 2005, it was obviously a reprint -- no mention of tobi, zithromax -- bunch of other stuff that was incorrect. Also, I came across a webpage that showed a woman in a vegetative state who CURED two girls with CF.
Our doctor told us the same thing when DS was first diagnosed -- basically told us that a LOT of info out there was outdated because of all the advances. Also told us not to run to the library to research. Suggested a few websites to look at CFF, etc. that would have more recent up to date info. And I can see his point -- we got a book for Xmas on CF and while it had a publication date of 2005, it was obviously a reprint -- no mention of tobi, zithromax -- bunch of other stuff that was incorrect. Also, I came across a webpage that showed a woman in a vegetative state who CURED two girls with CF.