"Normal" sweat test

M

mom2lillian

New member
"Normal

sweat tests are great for a quick positive so as not to postpone treatment when a dx is 'clear' but that is ALL they are good for. I do not believe you can rule out CF based on sweat alone and it will just take a few more years before the medical community starts to see this and probably another decade before they accept this.

I had 5 borderline sweat tests before my diagnosis.

If you feel strongly do EVERYTHIGN you can to get the test, including paying out pocket, the test is $1300 if you self pay and ambry will set up a payment plan with you. Getting insurance to cover it without a doc backing you is going to be imposssible. Try calling a CF center and talkign with a social worker there or a coordinator. Do some research and take it to your doctor, yell kick scream whatever. If your test was borderline then you would have a stronger case, numbers below 20 are not wrong as often as the 'borderline world of 40+ but there are still cases out there.

Ironically, if you self pay and the test is positive then you can probably appeal and get it covered and then get reimbursed (sad victory though).
 
M

mom2lillian

New member
"Normal

sweat tests are great for a quick positive so as not to postpone treatment when a dx is 'clear' but that is ALL they are good for. I do not believe you can rule out CF based on sweat alone and it will just take a few more years before the medical community starts to see this and probably another decade before they accept this.

I had 5 borderline sweat tests before my diagnosis.

If you feel strongly do EVERYTHIGN you can to get the test, including paying out pocket, the test is $1300 if you self pay and ambry will set up a payment plan with you. Getting insurance to cover it without a doc backing you is going to be imposssible. Try calling a CF center and talkign with a social worker there or a coordinator. Do some research and take it to your doctor, yell kick scream whatever. If your test was borderline then you would have a stronger case, numbers below 20 are not wrong as often as the 'borderline world of 40+ but there are still cases out there.

Ironically, if you self pay and the test is positive then you can probably appeal and get it covered and then get reimbursed (sad victory though).
 
M

mom2lillian

New member
"Normal

sweat tests are great for a quick positive so as not to postpone treatment when a dx is 'clear' but that is ALL they are good for. I do not believe you can rule out CF based on sweat alone and it will just take a few more years before the medical community starts to see this and probably another decade before they accept this.

I had 5 borderline sweat tests before my diagnosis.

If you feel strongly do EVERYTHIGN you can to get the test, including paying out pocket, the test is $1300 if you self pay and ambry will set up a payment plan with you. Getting insurance to cover it without a doc backing you is going to be imposssible. Try calling a CF center and talkign with a social worker there or a coordinator. Do some research and take it to your doctor, yell kick scream whatever. If your test was borderline then you would have a stronger case, numbers below 20 are not wrong as often as the 'borderline world of 40+ but there are still cases out there.

Ironically, if you self pay and the test is positive then you can probably appeal and get it covered and then get reimbursed (sad victory though).
 
M

mom2lillian

New member
"Normal

sweat tests are great for a quick positive so as not to postpone treatment when a dx is 'clear' but that is ALL they are good for. I do not believe you can rule out CF based on sweat alone and it will just take a few more years before the medical community starts to see this and probably another decade before they accept this.

I had 5 borderline sweat tests before my diagnosis.

If you feel strongly do EVERYTHIGN you can to get the test, including paying out pocket, the test is $1300 if you self pay and ambry will set up a payment plan with you. Getting insurance to cover it without a doc backing you is going to be imposssible. Try calling a CF center and talkign with a social worker there or a coordinator. Do some research and take it to your doctor, yell kick scream whatever. If your test was borderline then you would have a stronger case, numbers below 20 are not wrong as often as the 'borderline world of 40+ but there are still cases out there.

Ironically, if you self pay and the test is positive then you can probably appeal and get it covered and then get reimbursed (sad victory though).
 
M

mom2lillian

New member
"Normal

sweat tests are great for a quick positive so as not to postpone treatment when a dx is 'clear' but that is ALL they are good for. I do not believe you can rule out CF based on sweat alone and it will just take a few more years before the medical community starts to see this and probably another decade before they accept this.
<br />
<br />I had 5 borderline sweat tests before my diagnosis.
<br />
<br />If you feel strongly do EVERYTHIGN you can to get the test, including paying out pocket, the test is $1300 if you self pay and ambry will set up a payment plan with you. Getting insurance to cover it without a doc backing you is going to be imposssible. Try calling a CF center and talkign with a social worker there or a coordinator. Do some research and take it to your doctor, yell kick scream whatever. If your test was borderline then you would have a stronger case, numbers below 20 are not wrong as often as the 'borderline world of 40+ but there are still cases out there.
<br />
<br />Ironically, if you self pay and the test is positive then you can probably appeal and get it covered and then get reimbursed (sad victory though).
 
W

Wendy

Guest
"Normal

My daughter was tested at an accredited cf clinic and her results were 10 and 11. Only because I have cf did they agree to the genetic tests, after much debate and frustration on my part. She has the 621+1GT mutation and the IVS-8 5T variant. They expected her to have atypical cf and not show symptoms until later in life... however she has already cultured her first "cf pathogen". Please listen to your instincts and pursue this aggressively. If I had not, we would never have been seen at the clinic or her cultures done and we would have lost the opportunity to treat her early.
 
W

Wendy

Guest
"Normal

My daughter was tested at an accredited cf clinic and her results were 10 and 11. Only because I have cf did they agree to the genetic tests, after much debate and frustration on my part. She has the 621+1GT mutation and the IVS-8 5T variant. They expected her to have atypical cf and not show symptoms until later in life... however she has already cultured her first "cf pathogen". Please listen to your instincts and pursue this aggressively. If I had not, we would never have been seen at the clinic or her cultures done and we would have lost the opportunity to treat her early.
 
W

Wendy

Guest
"Normal

My daughter was tested at an accredited cf clinic and her results were 10 and 11. Only because I have cf did they agree to the genetic tests, after much debate and frustration on my part. She has the 621+1GT mutation and the IVS-8 5T variant. They expected her to have atypical cf and not show symptoms until later in life... however she has already cultured her first "cf pathogen". Please listen to your instincts and pursue this aggressively. If I had not, we would never have been seen at the clinic or her cultures done and we would have lost the opportunity to treat her early.
 
W

Wendy

Guest
"Normal

My daughter was tested at an accredited cf clinic and her results were 10 and 11. Only because I have cf did they agree to the genetic tests, after much debate and frustration on my part. She has the 621+1GT mutation and the IVS-8 5T variant. They expected her to have atypical cf and not show symptoms until later in life... however she has already cultured her first "cf pathogen". Please listen to your instincts and pursue this aggressively. If I had not, we would never have been seen at the clinic or her cultures done and we would have lost the opportunity to treat her early.
 
W

Wendy

Guest
"Normal

My daughter was tested at an accredited cf clinic and her results were 10 and 11. Only because I have cf did they agree to the genetic tests, after much debate and frustration on my part. She has the 621+1GT mutation and the IVS-8 5T variant. They expected her to have atypical cf and not show symptoms until later in life... however she has already cultured her first "cf pathogen". Please listen to your instincts and pursue this aggressively. If I had not, we would never have been seen at the clinic or her cultures done and we would have lost the opportunity to treat her early.
<br />
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
S

shallowwaters

New member
"Normal

when i was four (1991) i did soooo many sweat tests and they all came back negative. and i did these at cf center. they insisted i didnt have cf because my weight was fine and the sweat test didnt come back positive. well my weight was ok because my mom fed me constantly. but all my other syptoms related to the bathroom were consistant with cf. there was this one dr that believed i had cf so she pushed until the would do a blood test and it turns out i have DDF508. so i dont really hold much faith in those sweat tests. i honestly think they are torture since i remember it being july and i was outside in all the winter clothes i owned lol.
 
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