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intermediate

L

ladybug

New member
Hello.

Just got off phone with clinic and was told my p.a. that I'm growing (two strains as usual) are "moderate" and are "intermediate" to pretty much every medication they'd use.

I am having a bit of an issue with this. They've used intermediate meds in the past on me just blindly choosing what to use together (usually two meds... tobra and something else), and I haven't been bouncing back or feeling much better after doing so.

My nurse just told me they'd likely continue to use combos that "should" work. I know there is synergy testing, but she said they "sometimes" do this, it isn't habit when you're intermediate to many things.

So, what does your doc do when your intermediate to stuff? I also have this history of NOT getting all that much better on the combos they try (even after 6+ weeks of treatment), so why would this change? Is this acceptable for me to just go on things without knowing synergistically how they'll work? I want to get the most benefit obviously, but to me, just putting combos together in the hopes they work is a bit unsettling.

Thoughts???

On a side note, nurse did say I'm susceptible to colistin, which I inhale every other month and usually feel AWFUL when I take it... over the years its starting to make me sob on my "on" months. Urgh. Does anyone do colistin via IV and get decent results??

Thanks, guys!!! <img src="">
 
L

ladybug

New member
Hello.

Just got off phone with clinic and was told my p.a. that I'm growing (two strains as usual) are "moderate" and are "intermediate" to pretty much every medication they'd use.

I am having a bit of an issue with this. They've used intermediate meds in the past on me just blindly choosing what to use together (usually two meds... tobra and something else), and I haven't been bouncing back or feeling much better after doing so.

My nurse just told me they'd likely continue to use combos that "should" work. I know there is synergy testing, but she said they "sometimes" do this, it isn't habit when you're intermediate to many things.

So, what does your doc do when your intermediate to stuff? I also have this history of NOT getting all that much better on the combos they try (even after 6+ weeks of treatment), so why would this change? Is this acceptable for me to just go on things without knowing synergistically how they'll work? I want to get the most benefit obviously, but to me, just putting combos together in the hopes they work is a bit unsettling.

Thoughts???

On a side note, nurse did say I'm susceptible to colistin, which I inhale every other month and usually feel AWFUL when I take it... over the years its starting to make me sob on my "on" months. Urgh. Does anyone do colistin via IV and get decent results??

Thanks, guys!!! <img src="">
 
L

ladybug

New member
Hello.

Just got off phone with clinic and was told my p.a. that I'm growing (two strains as usual) are "moderate" and are "intermediate" to pretty much every medication they'd use.

I am having a bit of an issue with this. They've used intermediate meds in the past on me just blindly choosing what to use together (usually two meds... tobra and something else), and I haven't been bouncing back or feeling much better after doing so.

My nurse just told me they'd likely continue to use combos that "should" work. I know there is synergy testing, but she said they "sometimes" do this, it isn't habit when you're intermediate to many things.

So, what does your doc do when your intermediate to stuff? I also have this history of NOT getting all that much better on the combos they try (even after 6+ weeks of treatment), so why would this change? Is this acceptable for me to just go on things without knowing synergistically how they'll work? I want to get the most benefit obviously, but to me, just putting combos together in the hopes they work is a bit unsettling.

Thoughts???

On a side note, nurse did say I'm susceptible to colistin, which I inhale every other month and usually feel AWFUL when I take it... over the years its starting to make me sob on my "on" months. Urgh. Does anyone do colistin via IV and get decent results??

Thanks, guys!!! <img src="">
 
L

ladybug

New member
Hello.

Just got off phone with clinic and was told my p.a. that I'm growing (two strains as usual) are "moderate" and are "intermediate" to pretty much every medication they'd use.

I am having a bit of an issue with this. They've used intermediate meds in the past on me just blindly choosing what to use together (usually two meds... tobra and something else), and I haven't been bouncing back or feeling much better after doing so.

My nurse just told me they'd likely continue to use combos that "should" work. I know there is synergy testing, but she said they "sometimes" do this, it isn't habit when you're intermediate to many things.

So, what does your doc do when your intermediate to stuff? I also have this history of NOT getting all that much better on the combos they try (even after 6+ weeks of treatment), so why would this change? Is this acceptable for me to just go on things without knowing synergistically how they'll work? I want to get the most benefit obviously, but to me, just putting combos together in the hopes they work is a bit unsettling.

Thoughts???

On a side note, nurse did say I'm susceptible to colistin, which I inhale every other month and usually feel AWFUL when I take it... over the years its starting to make me sob on my "on" months. Urgh. Does anyone do colistin via IV and get decent results??

Thanks, guys!!! <img src="">
 
L

ladybug

New member
Hello.
<br />
<br />Just got off phone with clinic and was told my p.a. that I'm growing (two strains as usual) are "moderate" and are "intermediate" to pretty much every medication they'd use.
<br />
<br />I am having a bit of an issue with this. They've used intermediate meds in the past on me just blindly choosing what to use together (usually two meds... tobra and something else), and I haven't been bouncing back or feeling much better after doing so.
<br />
<br />My nurse just told me they'd likely continue to use combos that "should" work. I know there is synergy testing, but she said they "sometimes" do this, it isn't habit when you're intermediate to many things.
<br />
<br />So, what does your doc do when your intermediate to stuff? I also have this history of NOT getting all that much better on the combos they try (even after 6+ weeks of treatment), so why would this change? Is this acceptable for me to just go on things without knowing synergistically how they'll work? I want to get the most benefit obviously, but to me, just putting combos together in the hopes they work is a bit unsettling.
<br />
<br />Thoughts???
<br />
<br />On a side note, nurse did say I'm susceptible to colistin, which I inhale every other month and usually feel AWFUL when I take it... over the years its starting to make me sob on my "on" months. Urgh. Does anyone do colistin via IV and get decent results??
<br />
<br />Thanks, guys!!! <img src="">
 
T

TonyaH

Guest
My son has been treated with abx he shows intermediate to. About a year ago his PA tested intermediate resistance to Gentamycin, so they switched him to tobramycin. This past July he was put back on tobra ivs, but is now showing intermediate to that as well. They always have him on tobra with something else...the first time it was timentin, this past time it was ceftaz. They also started his TOBI up on the tobra even though it was an off month for him...they said because of the intermediate result to the tobra. It makes me wonder why they use the intermediate stuff, too, but I guess when there are only so many abx with which to work, the doctors have to keep some meds aside for later.
 
T

TonyaH

Guest
My son has been treated with abx he shows intermediate to. About a year ago his PA tested intermediate resistance to Gentamycin, so they switched him to tobramycin. This past July he was put back on tobra ivs, but is now showing intermediate to that as well. They always have him on tobra with something else...the first time it was timentin, this past time it was ceftaz. They also started his TOBI up on the tobra even though it was an off month for him...they said because of the intermediate result to the tobra. It makes me wonder why they use the intermediate stuff, too, but I guess when there are only so many abx with which to work, the doctors have to keep some meds aside for later.
 
T

TonyaH

Guest
My son has been treated with abx he shows intermediate to. About a year ago his PA tested intermediate resistance to Gentamycin, so they switched him to tobramycin. This past July he was put back on tobra ivs, but is now showing intermediate to that as well. They always have him on tobra with something else...the first time it was timentin, this past time it was ceftaz. They also started his TOBI up on the tobra even though it was an off month for him...they said because of the intermediate result to the tobra. It makes me wonder why they use the intermediate stuff, too, but I guess when there are only so many abx with which to work, the doctors have to keep some meds aside for later.
 
T

TonyaH

Guest
My son has been treated with abx he shows intermediate to. About a year ago his PA tested intermediate resistance to Gentamycin, so they switched him to tobramycin. This past July he was put back on tobra ivs, but is now showing intermediate to that as well. They always have him on tobra with something else...the first time it was timentin, this past time it was ceftaz. They also started his TOBI up on the tobra even though it was an off month for him...they said because of the intermediate result to the tobra. It makes me wonder why they use the intermediate stuff, too, but I guess when there are only so many abx with which to work, the doctors have to keep some meds aside for later.
 
T

TonyaH

Guest
My son has been treated with abx he shows intermediate to. About a year ago his PA tested intermediate resistance to Gentamycin, so they switched him to tobramycin. This past July he was put back on tobra ivs, but is now showing intermediate to that as well. They always have him on tobra with something else...the first time it was timentin, this past time it was ceftaz. They also started his TOBI up on the tobra even though it was an off month for him...they said because of the intermediate result to the tobra. It makes me wonder why they use the intermediate stuff, too, but I guess when there are only so many abx with which to work, the doctors have to keep some meds aside for later.
 
L

liz26ny

New member
My doctor always sends my cultures out for synergy testing when they come back as being intermediate. My understanding was that an antibiotic could be intermediate when tested individually, but have an entirely different result when tested in conjunction with a 2nd and/or 3rd antibiotic. Also my doctor always reminds me that while culturing provides a good idea of what antibiotics are best for treatment, it is not foolproof. What happens in a lab and what happens in your lungs can be very different. So although a certain antibiotic might test intermediate in treating bacteria in a petri dish, it might be more effective in treating the bacteria in your lungs. Hope this makes sense!
 
L

liz26ny

New member
My doctor always sends my cultures out for synergy testing when they come back as being intermediate. My understanding was that an antibiotic could be intermediate when tested individually, but have an entirely different result when tested in conjunction with a 2nd and/or 3rd antibiotic. Also my doctor always reminds me that while culturing provides a good idea of what antibiotics are best for treatment, it is not foolproof. What happens in a lab and what happens in your lungs can be very different. So although a certain antibiotic might test intermediate in treating bacteria in a petri dish, it might be more effective in treating the bacteria in your lungs. Hope this makes sense!
 
L

liz26ny

New member
My doctor always sends my cultures out for synergy testing when they come back as being intermediate. My understanding was that an antibiotic could be intermediate when tested individually, but have an entirely different result when tested in conjunction with a 2nd and/or 3rd antibiotic. Also my doctor always reminds me that while culturing provides a good idea of what antibiotics are best for treatment, it is not foolproof. What happens in a lab and what happens in your lungs can be very different. So although a certain antibiotic might test intermediate in treating bacteria in a petri dish, it might be more effective in treating the bacteria in your lungs. Hope this makes sense!
 
L

liz26ny

New member
My doctor always sends my cultures out for synergy testing when they come back as being intermediate. My understanding was that an antibiotic could be intermediate when tested individually, but have an entirely different result when tested in conjunction with a 2nd and/or 3rd antibiotic. Also my doctor always reminds me that while culturing provides a good idea of what antibiotics are best for treatment, it is not foolproof. What happens in a lab and what happens in your lungs can be very different. So although a certain antibiotic might test intermediate in treating bacteria in a petri dish, it might be more effective in treating the bacteria in your lungs. Hope this makes sense!
 
L

liz26ny

New member
My doctor always sends my cultures out for synergy testing when they come back as being intermediate. My understanding was that an antibiotic could be intermediate when tested individually, but have an entirely different result when tested in conjunction with a 2nd and/or 3rd antibiotic. Also my doctor always reminds me that while culturing provides a good idea of what antibiotics are best for treatment, it is not foolproof. What happens in a lab and what happens in your lungs can be very different. So although a certain antibiotic might test intermediate in treating bacteria in a petri dish, it might be more effective in treating the bacteria in your lungs. Hope this makes sense!
 
S

saveferris2009

New member
i'm FLOORED that your doc doesn't do synergy testing.

what's the hold up? some paperwork?

there is NO EXCUSE for this. you deserve the right combinations to get you to feel better as soon as possible.

synergy testing can take a while, but so what? it's not like your CF is going away any time soon....

really, this is your moment to say that you deserve the very best. there's only so much we can do to make CF more bearable, and knowing which antibiotics to make you feel better should be one of them.

i'm furious. tell your doc he better make sure he doesn't run into me on the street. (j/k). but really, there is no excuse for this.
 
S

saveferris2009

New member
i'm FLOORED that your doc doesn't do synergy testing.

what's the hold up? some paperwork?

there is NO EXCUSE for this. you deserve the right combinations to get you to feel better as soon as possible.

synergy testing can take a while, but so what? it's not like your CF is going away any time soon....

really, this is your moment to say that you deserve the very best. there's only so much we can do to make CF more bearable, and knowing which antibiotics to make you feel better should be one of them.

i'm furious. tell your doc he better make sure he doesn't run into me on the street. (j/k). but really, there is no excuse for this.
 
S

saveferris2009

New member
i'm FLOORED that your doc doesn't do synergy testing.

what's the hold up? some paperwork?

there is NO EXCUSE for this. you deserve the right combinations to get you to feel better as soon as possible.

synergy testing can take a while, but so what? it's not like your CF is going away any time soon....

really, this is your moment to say that you deserve the very best. there's only so much we can do to make CF more bearable, and knowing which antibiotics to make you feel better should be one of them.

i'm furious. tell your doc he better make sure he doesn't run into me on the street. (j/k). but really, there is no excuse for this.
 
S

saveferris2009

New member
i'm FLOORED that your doc doesn't do synergy testing.

what's the hold up? some paperwork?

there is NO EXCUSE for this. you deserve the right combinations to get you to feel better as soon as possible.

synergy testing can take a while, but so what? it's not like your CF is going away any time soon....

really, this is your moment to say that you deserve the very best. there's only so much we can do to make CF more bearable, and knowing which antibiotics to make you feel better should be one of them.

i'm furious. tell your doc he better make sure he doesn't run into me on the street. (j/k). but really, there is no excuse for this.
 
S

saveferris2009

New member
i'm FLOORED that your doc doesn't do synergy testing.
<br />
<br />what's the hold up? some paperwork?
<br />
<br />there is NO EXCUSE for this. you deserve the right combinations to get you to feel better as soon as possible.
<br />
<br />synergy testing can take a while, but so what? it's not like your CF is going away any time soon....
<br />
<br />really, this is your moment to say that you deserve the very best. there's only so much we can do to make CF more bearable, and knowing which antibiotics to make you feel better should be one of them.
<br />
<br />i'm furious. tell your doc he better make sure he doesn't run into me on the street. (j/k). but really, there is no excuse for this.
 
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