Borderline sweat test???

saveferris2009 · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: MicheleGazelle

I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test.

My pulmonologist said that with my medical history and the fact that I was improving on CF treatments, it looks like CF to him. My son was also diagnosed with sweat tests of 41 and mostly sinus problems.</end quote></div>

Wait, so you've never been genetically diagnosed with CF?

This explains a lot.....

It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.

You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.

saveferris2009 · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: MicheleGazelle

I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test.

My pulmonologist said that with my medical history and the fact that I was improving on CF treatments, it looks like CF to him. My son was also diagnosed with sweat tests of 41 and mostly sinus problems.</end quote></div>

Wait, so you've never been genetically diagnosed with CF?

This explains a lot.....

It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.

You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.

saveferris2009 · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: MicheleGazelle

I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test.

My pulmonologist said that with my medical history and the fact that I was improving on CF treatments, it looks like CF to him. My son was also diagnosed with sweat tests of 41 and mostly sinus problems.</end quote></div>

Wait, so you've never been genetically diagnosed with CF?

This explains a lot.....

It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.

You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.

saveferris2009 · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: MicheleGazelle

I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test.

My pulmonologist said that with my medical history and the fact that I was improving on CF treatments, it looks like CF to him. My son was also diagnosed with sweat tests of 41 and mostly sinus problems.</end quote>

Wait, so you've never been genetically diagnosed with CF?

This explains a lot.....

It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.

You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.

saveferris2009 · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: MicheleGazelle
 
 I am primarily a sinus sufferer. I was diagnosed with "atypical CF" with sweat chlorides of 41. They did DNA tests and found nothing. My insurance then turned down the request for a more expensive, more comprehensive DNA test.
 
 
 
 My pulmonologist said that with my medical history and the fact that I was improving on CF treatments, it looks like CF to him. My son was also diagnosed with sweat tests of 41 and mostly sinus problems.</end quote>
 
 
 Wait, so you've never been genetically diagnosed with CF?
 
 This explains a lot.....
 
 It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.
 
 You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.

MicheleGazelle · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009
Wait, so you've never been genetically diagnosed with CF?

This explains a lot.....

It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.

You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.</end quote></div>

I state that clearly any time it comes up. I have never hidden that fact. I also know others with genetic diagnoses who have benefited from some of the same things I do.

MicheleGazelle · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009
Wait, so you've never been genetically diagnosed with CF?

This explains a lot.....

It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.

You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.</end quote></div>

I state that clearly any time it comes up. I have never hidden that fact. I also know others with genetic diagnoses who have benefited from some of the same things I do.

MicheleGazelle · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009
Wait, so you've never been genetically diagnosed with CF?

This explains a lot.....

It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.

You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.</end quote></div>

I state that clearly any time it comes up. I have never hidden that fact. I also know others with genetic diagnoses who have benefited from some of the same things I do.

MicheleGazelle · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009
Wait, so you've never been genetically diagnosed with CF?

This explains a lot.....

It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.

You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.</end quote>

I state that clearly any time it comes up. I have never hidden that fact. I also know others with genetic diagnoses who have benefited from some of the same things I do.

MicheleGazelle · Jan 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009
 Wait, so you've never been genetically diagnosed with CF?
 
 
 
 This explains a lot.....
 
 
 
 It's so surprising to me that you claim you've been off digestive enzymes and antibiotics.... when you don't even have a genetic diagnosis of CF. Wow.
 
 
 
 You owe it to the CF community on this board at to those who read your blog to state CLEARLY that you don't have a genetic CF diagnosis but simply a borderline sweat test so every person can put your "recommendations" and your story into proper context.</end quote>
 
 I state that clearly any time it comes up. I have never hidden that fact. I also know others with genetic diagnoses who have benefited from some of the same things I do.

AnnaH · Jan 26, 2009

Mostly a lurker, but I read daily. As I remember, Michele has previously stated that:
- She does not see a doctor, and has not for a while
- Her lung function has always been close to normal, even while she was bedridden
- Doctors don't take her seriously, even when she felt that her life was in danger
- She does not need enzymes or antibiotics.

I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.

To answer the question, I had one borderline sweat test followed by 3 (very)positive sweat tests, a positive genetic test, and a positive nasal differential. I also know sisters who had very low sweat tests(not borderline) and have DDf508 and classic CF.
My dad and sister both had borderline sweat tests and do *not* have CF, as confirmed by genetic testing, a nasal differential and symptoms.

I would push for the genetic testing, and also visit a CF clinic. The Clinic should be able to help you sort it out.
I had mostly digestive and sinus/ear problems as a kid, and very good lung function(with preventative treatment).

AnnaH · Jan 26, 2009

Mostly a lurker, but I read daily. As I remember, Michele has previously stated that:
- She does not see a doctor, and has not for a while
- Her lung function has always been close to normal, even while she was bedridden
- Doctors don't take her seriously, even when she felt that her life was in danger
- She does not need enzymes or antibiotics.

I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.

To answer the question, I had one borderline sweat test followed by 3 (very)positive sweat tests, a positive genetic test, and a positive nasal differential. I also know sisters who had very low sweat tests(not borderline) and have DDf508 and classic CF.
My dad and sister both had borderline sweat tests and do *not* have CF, as confirmed by genetic testing, a nasal differential and symptoms.

I would push for the genetic testing, and also visit a CF clinic. The Clinic should be able to help you sort it out.
I had mostly digestive and sinus/ear problems as a kid, and very good lung function(with preventative treatment).

AnnaH · Jan 26, 2009

Mostly a lurker, but I read daily. As I remember, Michele has previously stated that:
- She does not see a doctor, and has not for a while
- Her lung function has always been close to normal, even while she was bedridden
- Doctors don't take her seriously, even when she felt that her life was in danger
- She does not need enzymes or antibiotics.

I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.

To answer the question, I had one borderline sweat test followed by 3 (very)positive sweat tests, a positive genetic test, and a positive nasal differential. I also know sisters who had very low sweat tests(not borderline) and have DDf508 and classic CF.
My dad and sister both had borderline sweat tests and do *not* have CF, as confirmed by genetic testing, a nasal differential and symptoms.

I would push for the genetic testing, and also visit a CF clinic. The Clinic should be able to help you sort it out.
I had mostly digestive and sinus/ear problems as a kid, and very good lung function(with preventative treatment).

AnnaH · Jan 26, 2009

Mostly a lurker, but I read daily. As I remember, Michele has previously stated that:
- She does not see a doctor, and has not for a while
- Her lung function has always been close to normal, even while she was bedridden
- Doctors don't take her seriously, even when she felt that her life was in danger
- She does not need enzymes or antibiotics.

I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.

To answer the question, I had one borderline sweat test followed by 3 (very)positive sweat tests, a positive genetic test, and a positive nasal differential. I also know sisters who had very low sweat tests(not borderline) and have DDf508 and classic CF.
My dad and sister both had borderline sweat tests and do *not* have CF, as confirmed by genetic testing, a nasal differential and symptoms.

I would push for the genetic testing, and also visit a CF clinic. The Clinic should be able to help you sort it out.
I had mostly digestive and sinus/ear problems as a kid, and very good lung function(with preventative treatment).

AnnaH · Jan 26, 2009

Mostly a lurker, but I read daily. As I remember, Michele has previously stated that:
 - She does not see a doctor, and has not for a while
 - Her lung function has always been close to normal, even while she was bedridden
 - Doctors don't take her seriously, even when she felt that her life was in danger
 - She does not need enzymes or antibiotics.
 
 
 I'm curious as to which accredited CF center diagnosed and treated you. I'm also curious as to what you have cultured. Also, have you repeated the sweat test, pushed for genetic testing or had a nasal differential.
 
 To answer the question, I had one borderline sweat test followed by 3 (very)positive sweat tests, a positive genetic test, and a positive nasal differential. I also know sisters who had very low sweat tests(not borderline) and have DDf508 and classic CF.
 My dad and sister both had borderline sweat tests and do *not* have CF, as confirmed by genetic testing, a nasal differential and symptoms.
 
 I would push for the genetic testing, and also visit a CF clinic. The Clinic should be able to help you sort it out.
 I had mostly digestive and sinus/ear problems as a kid, and very good lung function(with preventative treatment).

valigirl21 · Jan 26, 2009