intermediate

[Jeana]

I agree that I would push for synergy testing. Also, I have done well with IV colistin to answer your other question.

 

[Jeana]

I agree that I would push for synergy testing. Also, I have done well with IV colistin to answer your other question.

 

[Jeana]

I agree that I would push for synergy testing. Also, I have done well with IV colistin to answer your other question.

 

[Jeana]

I agree that I would push for synergy testing. Also, I have done well with IV colistin to answer your other question.

 

[Jeana]

I agree that I would push for synergy testing. Also, I have done well with IV colistin to answer your other question.

 

[ladybug]

well, here's the thing...

when i left vegas, they sent out my culture for synergy testing to canada. the problem was, they sent it out AFTER my abx course of 6 weeks was done. they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. i mentioned to them time again that i didn't feel comfortable sending a nearly clear culture AFTER abx to get testing for future infections... makes no sense if we're not going to TREAT it, right???

anyway, when i got here, they wanted to do their own culture. so, they did a bunch of them (i coughed into 3 cups... stupid they can't just take a little for each culture out of ONE cup, but i digress). they wanted a starting point i think. so, its not that they didn't do synergy when i asked, its that they just really didn't know what they were dealing with.

when the nurse said today that i was intermediate for a lot and with me asking about synergy and her just kinda blowing it off, that put me off a bit. so, maybe i will call her tomorrow and suggest i bring in a fresh culture and they send that in. i am assuming this will be a bit of a pain since getting a hold of the military cf doc isn't always easy, but i would HOPE they'd do it for me if i'm down to few options. plus, if they're possibly going to admit, i want to know NOW what i'm growing and not have to start something and see what it grows in a few weeks. right?!? urgh... this is so frustrating.

thanks for making me feel like i have a right to ask for this "extra" test. i just hope its not a fight. if it is, thank goodness we have another CF clinic in town and i WILL go off base if necessary.

these are the same docs at the base that told me last week they will NOT desensitize me to a med if other meds work, even if they're just intermediate. i tried to explain to them that the med i'm really allergic to works wonders for me and i'm totally sensitive to it, but that didn't matter. they do not desensitize if there are other meds, even if they don't show susceptibility alone. hmmm... should this concern me as well?

sorry, i digress.

 

[ladybug]

well, here's the thing...

when i left vegas, they sent out my culture for synergy testing to canada. the problem was, they sent it out AFTER my abx course of 6 weeks was done. they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. i mentioned to them time again that i didn't feel comfortable sending a nearly clear culture AFTER abx to get testing for future infections... makes no sense if we're not going to TREAT it, right???

anyway, when i got here, they wanted to do their own culture. so, they did a bunch of them (i coughed into 3 cups... stupid they can't just take a little for each culture out of ONE cup, but i digress). they wanted a starting point i think. so, its not that they didn't do synergy when i asked, its that they just really didn't know what they were dealing with.

when the nurse said today that i was intermediate for a lot and with me asking about synergy and her just kinda blowing it off, that put me off a bit. so, maybe i will call her tomorrow and suggest i bring in a fresh culture and they send that in. i am assuming this will be a bit of a pain since getting a hold of the military cf doc isn't always easy, but i would HOPE they'd do it for me if i'm down to few options. plus, if they're possibly going to admit, i want to know NOW what i'm growing and not have to start something and see what it grows in a few weeks. right?!? urgh... this is so frustrating.

thanks for making me feel like i have a right to ask for this "extra" test. i just hope its not a fight. if it is, thank goodness we have another CF clinic in town and i WILL go off base if necessary.

these are the same docs at the base that told me last week they will NOT desensitize me to a med if other meds work, even if they're just intermediate. i tried to explain to them that the med i'm really allergic to works wonders for me and i'm totally sensitive to it, but that didn't matter. they do not desensitize if there are other meds, even if they don't show susceptibility alone. hmmm... should this concern me as well?

sorry, i digress.

 

[ladybug]

well, here's the thing...

when i left vegas, they sent out my culture for synergy testing to canada. the problem was, they sent it out AFTER my abx course of 6 weeks was done. they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. i mentioned to them time again that i didn't feel comfortable sending a nearly clear culture AFTER abx to get testing for future infections... makes no sense if we're not going to TREAT it, right???

anyway, when i got here, they wanted to do their own culture. so, they did a bunch of them (i coughed into 3 cups... stupid they can't just take a little for each culture out of ONE cup, but i digress). they wanted a starting point i think. so, its not that they didn't do synergy when i asked, its that they just really didn't know what they were dealing with.

when the nurse said today that i was intermediate for a lot and with me asking about synergy and her just kinda blowing it off, that put me off a bit. so, maybe i will call her tomorrow and suggest i bring in a fresh culture and they send that in. i am assuming this will be a bit of a pain since getting a hold of the military cf doc isn't always easy, but i would HOPE they'd do it for me if i'm down to few options. plus, if they're possibly going to admit, i want to know NOW what i'm growing and not have to start something and see what it grows in a few weeks. right?!? urgh... this is so frustrating.

thanks for making me feel like i have a right to ask for this "extra" test. i just hope its not a fight. if it is, thank goodness we have another CF clinic in town and i WILL go off base if necessary.

these are the same docs at the base that told me last week they will NOT desensitize me to a med if other meds work, even if they're just intermediate. i tried to explain to them that the med i'm really allergic to works wonders for me and i'm totally sensitive to it, but that didn't matter. they do not desensitize if there are other meds, even if they don't show susceptibility alone. hmmm... should this concern me as well?

sorry, i digress.

 

[ladybug]

well, here's the thing...

when i left vegas, they sent out my culture for synergy testing to canada. the problem was, they sent it out AFTER my abx course of 6 weeks was done. they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. i mentioned to them time again that i didn't feel comfortable sending a nearly clear culture AFTER abx to get testing for future infections... makes no sense if we're not going to TREAT it, right???

anyway, when i got here, they wanted to do their own culture. so, they did a bunch of them (i coughed into 3 cups... stupid they can't just take a little for each culture out of ONE cup, but i digress). they wanted a starting point i think. so, its not that they didn't do synergy when i asked, its that they just really didn't know what they were dealing with.

when the nurse said today that i was intermediate for a lot and with me asking about synergy and her just kinda blowing it off, that put me off a bit. so, maybe i will call her tomorrow and suggest i bring in a fresh culture and they send that in. i am assuming this will be a bit of a pain since getting a hold of the military cf doc isn't always easy, but i would HOPE they'd do it for me if i'm down to few options. plus, if they're possibly going to admit, i want to know NOW what i'm growing and not have to start something and see what it grows in a few weeks. right?!? urgh... this is so frustrating.

thanks for making me feel like i have a right to ask for this "extra" test. i just hope its not a fight. if it is, thank goodness we have another CF clinic in town and i WILL go off base if necessary.

these are the same docs at the base that told me last week they will NOT desensitize me to a med if other meds work, even if they're just intermediate. i tried to explain to them that the med i'm really allergic to works wonders for me and i'm totally sensitive to it, but that didn't matter. they do not desensitize if there are other meds, even if they don't show susceptibility alone. hmmm... should this concern me as well?

sorry, i digress.

 

[ladybug]

well, here's the thing...
<br />
<br />when i left vegas, they sent out my culture for synergy testing to canada. the problem was, they sent it out AFTER my abx course of 6 weeks was done. they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. i mentioned to them time again that i didn't feel comfortable sending a nearly clear culture AFTER abx to get testing for future infections... makes no sense if we're not going to TREAT it, right???
<br />
<br />anyway, when i got here, they wanted to do their own culture. so, they did a bunch of them (i coughed into 3 cups... stupid they can't just take a little for each culture out of ONE cup, but i digress). they wanted a starting point i think. so, its not that they didn't do synergy when i asked, its that they just really didn't know what they were dealing with.
<br />
<br />when the nurse said today that i was intermediate for a lot and with me asking about synergy and her just kinda blowing it off, that put me off a bit. so, maybe i will call her tomorrow and suggest i bring in a fresh culture and they send that in. i am assuming this will be a bit of a pain since getting a hold of the military cf doc isn't always easy, but i would HOPE they'd do it for me if i'm down to few options. plus, if they're possibly going to admit, i want to know NOW what i'm growing and not have to start something and see what it grows in a few weeks. right?!? urgh... this is so frustrating.
<br />
<br />thanks for making me feel like i have a right to ask for this "extra" test. i just hope its not a fight. if it is, thank goodness we have another CF clinic in town and i WILL go off base if necessary.
<br />
<br />these are the same docs at the base that told me last week they will NOT desensitize me to a med if other meds work, even if they're just intermediate. i tried to explain to them that the med i'm really allergic to works wonders for me and i'm totally sensitive to it, but that didn't matter. they do not desensitize if there are other meds, even if they don't show susceptibility alone. hmmm... should this concern me as well?
<br />
<br />sorry, i digress.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. </end quote></div>


how is that a waste of time and money when you knew you could have used the results in the future?

i don't think that would have been a waste of time or money at all. again, it's not like your CF is going away. chances are yo'ure going to need abx at least once more in your life.... so the results of those tests could have been useful

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. </end quote></div>


how is that a waste of time and money when you knew you could have used the results in the future?

i don't think that would have been a waste of time or money at all. again, it's not like your CF is going away. chances are yo'ure going to need abx at least once more in your life.... so the results of those tests could have been useful

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. </end quote></div>


how is that a waste of time and money when you knew you could have used the results in the future?

i don't think that would have been a waste of time or money at all. again, it's not like your CF is going away. chances are yo'ure going to need abx at least once more in your life.... so the results of those tests could have been useful

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. </end quote>


how is that a waste of time and money when you knew you could have used the results in the future?

i don't think that would have been a waste of time or money at all. again, it's not like your CF is going away. chances are yo'ure going to need abx at least once more in your life.... so the results of those tests could have been useful

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>
<br />
<br /> they just did it for "future reference", which i kinda think was a waste of time and money and fueled by something other than my best interest. </end quote>
<br />
<br />
<br />how is that a waste of time and money when you knew you could have used the results in the future?
<br />
<br />i don't think that would have been a waste of time or money at all. again, it's not like your CF is going away. chances are yo'ure going to need abx at least once more in your life.... so the results of those tests could have been useful

 

[ladybug]

ok, let me clarify...

i personally think its a waste of time and money to do synergy testing on a culture that is no longer growing much since i'd been on abx for 6 weeks at that time. now, had they done the synergy testing at the BEGINNING of the 6 weeks, that makes sense. but, to wait until i'm getting the picc pulled doesn't make much sense to me.

the way i see it is that depending on the infection and what kind of bugs we grow at the time we have an exacerbation, THAT is what we treat. if i have cultures for a current illness, why not use the most recent cultures? why on earth would you resort to syngery testing that was done at the d/c of a prior course of abx? this is why we culture each time we go on abx, right? this is why they don't rely on a 4-5 month old culture... especially one taken at the END of abx therapy. right?

so, to me, to take a culture a few months ago just to tell me what THAT bug was sensitive to makes little sense.

i want to do synergy testing with each culture, or at the very least when i feel its time for abx.

i don't think i'd feel so heated about this if they'd have taken a synergy culture in my previous center at the onset of my p.a. exacerbation... at least then i'd feel maybe the results could translate, but at the END of therapy? when i'm "well"? honestly, my sputum was a completely different color and thickness than it is now (and than it was at the onset of prior exacerbation too!).

anyway, that's my soap box. <img src="i/expressions/face-icon-small-mad.gif" border="0"> i know you were asking in a very benign way, but the more i get thinking of it, the more upset i get that i: A. did that culture and now they're possibly going to use THOSE results to treat an infection 3 months later and B. they're not entirely willing to do a new test to see what combo would maybe work NOW.

urgh..... thanks for helping me see the light. tomorrow i will call and ask when i can do another sample for synergy.

 

[ladybug]

ok, let me clarify...

i personally think its a waste of time and money to do synergy testing on a culture that is no longer growing much since i'd been on abx for 6 weeks at that time. now, had they done the synergy testing at the BEGINNING of the 6 weeks, that makes sense. but, to wait until i'm getting the picc pulled doesn't make much sense to me.

the way i see it is that depending on the infection and what kind of bugs we grow at the time we have an exacerbation, THAT is what we treat. if i have cultures for a current illness, why not use the most recent cultures? why on earth would you resort to syngery testing that was done at the d/c of a prior course of abx? this is why we culture each time we go on abx, right? this is why they don't rely on a 4-5 month old culture... especially one taken at the END of abx therapy. right?

so, to me, to take a culture a few months ago just to tell me what THAT bug was sensitive to makes little sense.

i want to do synergy testing with each culture, or at the very least when i feel its time for abx.

i don't think i'd feel so heated about this if they'd have taken a synergy culture in my previous center at the onset of my p.a. exacerbation... at least then i'd feel maybe the results could translate, but at the END of therapy? when i'm "well"? honestly, my sputum was a completely different color and thickness than it is now (and than it was at the onset of prior exacerbation too!).

anyway, that's my soap box. <img src="i/expressions/face-icon-small-mad.gif" border="0"> i know you were asking in a very benign way, but the more i get thinking of it, the more upset i get that i: A. did that culture and now they're possibly going to use THOSE results to treat an infection 3 months later and B. they're not entirely willing to do a new test to see what combo would maybe work NOW.

urgh..... thanks for helping me see the light. tomorrow i will call and ask when i can do another sample for synergy.

 

[ladybug]

ok, let me clarify...

i personally think its a waste of time and money to do synergy testing on a culture that is no longer growing much since i'd been on abx for 6 weeks at that time. now, had they done the synergy testing at the BEGINNING of the 6 weeks, that makes sense. but, to wait until i'm getting the picc pulled doesn't make much sense to me.

the way i see it is that depending on the infection and what kind of bugs we grow at the time we have an exacerbation, THAT is what we treat. if i have cultures for a current illness, why not use the most recent cultures? why on earth would you resort to syngery testing that was done at the d/c of a prior course of abx? this is why we culture each time we go on abx, right? this is why they don't rely on a 4-5 month old culture... especially one taken at the END of abx therapy. right?

so, to me, to take a culture a few months ago just to tell me what THAT bug was sensitive to makes little sense.

i want to do synergy testing with each culture, or at the very least when i feel its time for abx.

i don't think i'd feel so heated about this if they'd have taken a synergy culture in my previous center at the onset of my p.a. exacerbation... at least then i'd feel maybe the results could translate, but at the END of therapy? when i'm "well"? honestly, my sputum was a completely different color and thickness than it is now (and than it was at the onset of prior exacerbation too!).

anyway, that's my soap box. <img src="i/expressions/face-icon-small-mad.gif" border="0"> i know you were asking in a very benign way, but the more i get thinking of it, the more upset i get that i: A. did that culture and now they're possibly going to use THOSE results to treat an infection 3 months later and B. they're not entirely willing to do a new test to see what combo would maybe work NOW.

urgh..... thanks for helping me see the light. tomorrow i will call and ask when i can do another sample for synergy.

 

[ladybug]

ok, let me clarify...

i personally think its a waste of time and money to do synergy testing on a culture that is no longer growing much since i'd been on abx for 6 weeks at that time. now, had they done the synergy testing at the BEGINNING of the 6 weeks, that makes sense. but, to wait until i'm getting the picc pulled doesn't make much sense to me.

the way i see it is that depending on the infection and what kind of bugs we grow at the time we have an exacerbation, THAT is what we treat. if i have cultures for a current illness, why not use the most recent cultures? why on earth would you resort to syngery testing that was done at the d/c of a prior course of abx? this is why we culture each time we go on abx, right? this is why they don't rely on a 4-5 month old culture... especially one taken at the END of abx therapy. right?

so, to me, to take a culture a few months ago just to tell me what THAT bug was sensitive to makes little sense.

i want to do synergy testing with each culture, or at the very least when i feel its time for abx.

i don't think i'd feel so heated about this if they'd have taken a synergy culture in my previous center at the onset of my p.a. exacerbation... at least then i'd feel maybe the results could translate, but at the END of therapy? when i'm "well"? honestly, my sputum was a completely different color and thickness than it is now (and than it was at the onset of prior exacerbation too!).

anyway, that's my soap box. <img src="i/expressions/face-icon-small-mad.gif" border="0"> i know you were asking in a very benign way, but the more i get thinking of it, the more upset i get that i: A. did that culture and now they're possibly going to use THOSE results to treat an infection 3 months later and B. they're not entirely willing to do a new test to see what combo would maybe work NOW.

urgh..... thanks for helping me see the light. tomorrow i will call and ask when i can do another sample for synergy.

 

[ladybug]

ok, let me clarify...
<br />
<br />i personally think its a waste of time and money to do synergy testing on a culture that is no longer growing much since i'd been on abx for 6 weeks at that time. now, had they done the synergy testing at the BEGINNING of the 6 weeks, that makes sense. but, to wait until i'm getting the picc pulled doesn't make much sense to me.
<br />
<br />the way i see it is that depending on the infection and what kind of bugs we grow at the time we have an exacerbation, THAT is what we treat. if i have cultures for a current illness, why not use the most recent cultures? why on earth would you resort to syngery testing that was done at the d/c of a prior course of abx? this is why we culture each time we go on abx, right? this is why they don't rely on a 4-5 month old culture... especially one taken at the END of abx therapy. right?
<br />
<br />so, to me, to take a culture a few months ago just to tell me what THAT bug was sensitive to makes little sense.
<br />
<br />i want to do synergy testing with each culture, or at the very least when i feel its time for abx.
<br />
<br />i don't think i'd feel so heated about this if they'd have taken a synergy culture in my previous center at the onset of my p.a. exacerbation... at least then i'd feel maybe the results could translate, but at the END of therapy? when i'm "well"? honestly, my sputum was a completely different color and thickness than it is now (and than it was at the onset of prior exacerbation too!).
<br />
<br />anyway, that's my soap box. <img src="i/expressions/face-icon-small-mad.gif" border="0"> i know you were asking in a very benign way, but the more i get thinking of it, the more upset i get that i: A. did that culture and now they're possibly going to use THOSE results to treat an infection 3 months later and B. they're not entirely willing to do a new test to see what combo would maybe work NOW.
<br />
<br />urgh..... thanks for helping me see the light. tomorrow i will call and ask when i can do another sample for synergy.