What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

How do I know if my sputum culture is getting extensively checked?

LouLou

New member
My lab results always note drug sensitivity level. That's amazing that some top clinics aren't doing it. We have to start demanding more. If you're reading this and you don't know what we are talking about put it on your list for your next clinic visit. You owe it to yourself or child.

I've looked at the lab order forms and they are pretty generic. So are you saying Melissa if it doesn't specifically say the bug names they aren't going to look for it? It sounds to me like this is something we all need to push back on our doctors for to ensure accurate testing. Standardized testing darnit. I want to be tested for everything, everytime...is that asking too much? I'm already only getting sputum cultures every 6 mo. or more often if sick (which never happens - I guess I must be doing something right) after my doctor made a comment about sputum cultures costing $1500....like I f'ing care - that's why I have insurance.

I love this site. This is exactly the type of thing I've gotten out of it. I never would have thought to question the analyzation of my sputum culture. I seem to now question everything about my care... and sadly things never measure up to my hopes and dreams at least not with timing. I seem to have a never ending list of To Do's regarding cf care.

If we all become *demanding* change will happen.
 

LouLou

New member
My lab results always note drug sensitivity level. That's amazing that some top clinics aren't doing it. We have to start demanding more. If you're reading this and you don't know what we are talking about put it on your list for your next clinic visit. You owe it to yourself or child.

I've looked at the lab order forms and they are pretty generic. So are you saying Melissa if it doesn't specifically say the bug names they aren't going to look for it? It sounds to me like this is something we all need to push back on our doctors for to ensure accurate testing. Standardized testing darnit. I want to be tested for everything, everytime...is that asking too much? I'm already only getting sputum cultures every 6 mo. or more often if sick (which never happens - I guess I must be doing something right) after my doctor made a comment about sputum cultures costing $1500....like I f'ing care - that's why I have insurance.

I love this site. This is exactly the type of thing I've gotten out of it. I never would have thought to question the analyzation of my sputum culture. I seem to now question everything about my care... and sadly things never measure up to my hopes and dreams at least not with timing. I seem to have a never ending list of To Do's regarding cf care.

If we all become *demanding* change will happen.
 

LouLou

New member
My lab results always note drug sensitivity level. That's amazing that some top clinics aren't doing it. We have to start demanding more. If you're reading this and you don't know what we are talking about put it on your list for your next clinic visit. You owe it to yourself or child.

I've looked at the lab order forms and they are pretty generic. So are you saying Melissa if it doesn't specifically say the bug names they aren't going to look for it? It sounds to me like this is something we all need to push back on our doctors for to ensure accurate testing. Standardized testing darnit. I want to be tested for everything, everytime...is that asking too much? I'm already only getting sputum cultures every 6 mo. or more often if sick (which never happens - I guess I must be doing something right) after my doctor made a comment about sputum cultures costing $1500....like I f'ing care - that's why I have insurance.

I love this site. This is exactly the type of thing I've gotten out of it. I never would have thought to question the analyzation of my sputum culture. I seem to now question everything about my care... and sadly things never measure up to my hopes and dreams at least not with timing. I seem to have a never ending list of To Do's regarding cf care.

If we all become *demanding* change will happen.
 

LouLou

New member
My lab results always note drug sensitivity level. That's amazing that some top clinics aren't doing it. We have to start demanding more. If you're reading this and you don't know what we are talking about put it on your list for your next clinic visit. You owe it to yourself or child.

I've looked at the lab order forms and they are pretty generic. So are you saying Melissa if it doesn't specifically say the bug names they aren't going to look for it? It sounds to me like this is something we all need to push back on our doctors for to ensure accurate testing. Standardized testing darnit. I want to be tested for everything, everytime...is that asking too much? I'm already only getting sputum cultures every 6 mo. or more often if sick (which never happens - I guess I must be doing something right) after my doctor made a comment about sputum cultures costing $1500....like I f'ing care - that's why I have insurance.

I love this site. This is exactly the type of thing I've gotten out of it. I never would have thought to question the analyzation of my sputum culture. I seem to now question everything about my care... and sadly things never measure up to my hopes and dreams at least not with timing. I seem to have a never ending list of To Do's regarding cf care.

If we all become *demanding* change will happen.
 

mom2lillian

New member
wowsa I had NO idea people didnt test sputum every visit (mine tests every 3 months or when sick) and to think of not testing for sensitivities is ludacrist!

My docs just told me my lab for whatever reason quit testing for cipro sensitivity they are just testing for levaquin and calling it 'equivalent' I call BS (yes they are the same mechanism of action but it doesnt matter)! I told my doc this and he said he agreed. Levaquin has never worked for me but cipro has plenty of times the whole reason I tried levaquin this past time was becuase the idiots didnt report cipro sensitivity.

I will be sure to ask how this gets orderd next time, my cli nci always knows what I amculturing even if it is just 'small' thing that are not really factored into CF care so I 'think' they are doing a good job but who knows.

Also I mentioned on a different topic I have had a bad test done through a different lab before where they came up showing I was resisitant to a whole slew of things I am not. I ended up having to pay $50 extra each culture to have it sent ot the regualr 'out of network lab' but it was worth it. Thankfully that is straightened up now.
 

mom2lillian

New member
wowsa I had NO idea people didnt test sputum every visit (mine tests every 3 months or when sick) and to think of not testing for sensitivities is ludacrist!

My docs just told me my lab for whatever reason quit testing for cipro sensitivity they are just testing for levaquin and calling it 'equivalent' I call BS (yes they are the same mechanism of action but it doesnt matter)! I told my doc this and he said he agreed. Levaquin has never worked for me but cipro has plenty of times the whole reason I tried levaquin this past time was becuase the idiots didnt report cipro sensitivity.

I will be sure to ask how this gets orderd next time, my cli nci always knows what I amculturing even if it is just 'small' thing that are not really factored into CF care so I 'think' they are doing a good job but who knows.

Also I mentioned on a different topic I have had a bad test done through a different lab before where they came up showing I was resisitant to a whole slew of things I am not. I ended up having to pay $50 extra each culture to have it sent ot the regualr 'out of network lab' but it was worth it. Thankfully that is straightened up now.
 

mom2lillian

New member
wowsa I had NO idea people didnt test sputum every visit (mine tests every 3 months or when sick) and to think of not testing for sensitivities is ludacrist!

My docs just told me my lab for whatever reason quit testing for cipro sensitivity they are just testing for levaquin and calling it 'equivalent' I call BS (yes they are the same mechanism of action but it doesnt matter)! I told my doc this and he said he agreed. Levaquin has never worked for me but cipro has plenty of times the whole reason I tried levaquin this past time was becuase the idiots didnt report cipro sensitivity.

I will be sure to ask how this gets orderd next time, my cli nci always knows what I amculturing even if it is just 'small' thing that are not really factored into CF care so I 'think' they are doing a good job but who knows.

Also I mentioned on a different topic I have had a bad test done through a different lab before where they came up showing I was resisitant to a whole slew of things I am not. I ended up having to pay $50 extra each culture to have it sent ot the regualr 'out of network lab' but it was worth it. Thankfully that is straightened up now.
 

mom2lillian

New member
wowsa I had NO idea people didnt test sputum every visit (mine tests every 3 months or when sick) and to think of not testing for sensitivities is ludacrist!

My docs just told me my lab for whatever reason quit testing for cipro sensitivity they are just testing for levaquin and calling it 'equivalent' I call BS (yes they are the same mechanism of action but it doesnt matter)! I told my doc this and he said he agreed. Levaquin has never worked for me but cipro has plenty of times the whole reason I tried levaquin this past time was becuase the idiots didnt report cipro sensitivity.

I will be sure to ask how this gets orderd next time, my cli nci always knows what I amculturing even if it is just 'small' thing that are not really factored into CF care so I 'think' they are doing a good job but who knows.

Also I mentioned on a different topic I have had a bad test done through a different lab before where they came up showing I was resisitant to a whole slew of things I am not. I ended up having to pay $50 extra each culture to have it sent ot the regualr 'out of network lab' but it was worth it. Thankfully that is straightened up now.
 

mom2lillian

New member
wowsa I had NO idea people didnt test sputum every visit (mine tests every 3 months or when sick) and to think of not testing for sensitivities is ludacrist!

My docs just told me my lab for whatever reason quit testing for cipro sensitivity they are just testing for levaquin and calling it 'equivalent' I call BS (yes they are the same mechanism of action but it doesnt matter)! I told my doc this and he said he agreed. Levaquin has never worked for me but cipro has plenty of times the whole reason I tried levaquin this past time was becuase the idiots didnt report cipro sensitivity.

I will be sure to ask how this gets orderd next time, my cli nci always knows what I amculturing even if it is just 'small' thing that are not really factored into CF care so I 'think' they are doing a good job but who knows.

Also I mentioned on a different topic I have had a bad test done through a different lab before where they came up showing I was resisitant to a whole slew of things I am not. I ended up having to pay $50 extra each culture to have it sent ot the regualr 'out of network lab' but it was worth it. Thankfully that is straightened up now.
 

mom2lillian

New member
wowsa I had NO idea people didnt test sputum every visit (mine tests every 3 months or when sick) and to think of not testing for sensitivities is ludacrist!

My docs just told me my lab for whatever reason quit testing for cipro sensitivity they are just testing for levaquin and calling it 'equivalent' I call BS (yes they are the same mechanism of action but it doesnt matter)! I told my doc this and he said he agreed. Levaquin has never worked for me but cipro has plenty of times the whole reason I tried levaquin this past time was becuase the idiots didnt report cipro sensitivity.

I will be sure to ask how this gets orderd next time, my cli nci always knows what I amculturing even if it is just 'small' thing that are not really factored into CF care so I 'think' they are doing a good job but who knows.

Also I mentioned on a different topic I have had a bad test done through a different lab before where they came up showing I was resisitant to a whole slew of things I am not. I ended up having to pay $50 extra each culture to have it sent ot the regualr 'out of network lab' but it was worth it. Thankfully that is straightened up now.
 

lightNlife

New member
There have been a few times where I've requested a certain "extra" test be done just to check on specific bugs. For example, remember that Agent Cool Blue rinse that was recalled b/c of cepacia? I had been using that product, so when I got sick I requested an additional test to make sure that I wasn't culturing a different species of cepacia than usual. Thankfully, I was unaffected by the recall.

Most docs will start a patient on cipro while they await more conclusive results of the sputum sample. This is because Cipro is traditionally the best and strongest against many types of infections. Cipro is even the abx that would be prescribed in the even of an Anthrax exposure.
 

lightNlife

New member
There have been a few times where I've requested a certain "extra" test be done just to check on specific bugs. For example, remember that Agent Cool Blue rinse that was recalled b/c of cepacia? I had been using that product, so when I got sick I requested an additional test to make sure that I wasn't culturing a different species of cepacia than usual. Thankfully, I was unaffected by the recall.

Most docs will start a patient on cipro while they await more conclusive results of the sputum sample. This is because Cipro is traditionally the best and strongest against many types of infections. Cipro is even the abx that would be prescribed in the even of an Anthrax exposure.
 

lightNlife

New member
There have been a few times where I've requested a certain "extra" test be done just to check on specific bugs. For example, remember that Agent Cool Blue rinse that was recalled b/c of cepacia? I had been using that product, so when I got sick I requested an additional test to make sure that I wasn't culturing a different species of cepacia than usual. Thankfully, I was unaffected by the recall.

Most docs will start a patient on cipro while they await more conclusive results of the sputum sample. This is because Cipro is traditionally the best and strongest against many types of infections. Cipro is even the abx that would be prescribed in the even of an Anthrax exposure.
 

lightNlife

New member
There have been a few times where I've requested a certain "extra" test be done just to check on specific bugs. For example, remember that Agent Cool Blue rinse that was recalled b/c of cepacia? I had been using that product, so when I got sick I requested an additional test to make sure that I wasn't culturing a different species of cepacia than usual. Thankfully, I was unaffected by the recall.

Most docs will start a patient on cipro while they await more conclusive results of the sputum sample. This is because Cipro is traditionally the best and strongest against many types of infections. Cipro is even the abx that would be prescribed in the even of an Anthrax exposure.
 

lightNlife

New member
There have been a few times where I've requested a certain "extra" test be done just to check on specific bugs. For example, remember that Agent Cool Blue rinse that was recalled b/c of cepacia? I had been using that product, so when I got sick I requested an additional test to make sure that I wasn't culturing a different species of cepacia than usual. Thankfully, I was unaffected by the recall.

Most docs will start a patient on cipro while they await more conclusive results of the sputum sample. This is because Cipro is traditionally the best and strongest against many types of infections. Cipro is even the abx that would be prescribed in the even of an Anthrax exposure.
 

lightNlife

New member
There have been a few times where I've requested a certain "extra" test be done just to check on specific bugs. For example, remember that Agent Cool Blue rinse that was recalled b/c of cepacia? I had been using that product, so when I got sick I requested an additional test to make sure that I wasn't culturing a different species of cepacia than usual. Thankfully, I was unaffected by the recall.

Most docs will start a patient on cipro while they await more conclusive results of the sputum sample. This is because Cipro is traditionally the best and strongest against many types of infections. Cipro is even the abx that would be prescribed in the even of an Anthrax exposure.
 

JustDucky

New member
I have my sputum tested frequently and when I do, I always ask for a copy of the results which shows how colonized I am as well as the sensitivites. The doc usually flags the sample as CF sputum, so the lab looks for B. cepacia, MAC, all of the bugs. I like to know exactly what I am growing and quantity as well. When I am ill, it is no surprise that my samples contain very high amounts of B. cepacia as well as staph or some other cootie, but mostly the cepacia. In the lab that my sputum is sent, the gram stain will either show scant to +4 which is alot for quantity, then once the bug is ID'ed, it will show how much of the sample is that bug. The sensitivities are good to look at, shows what I am resistant to, which is almost everything as far as my cepacia goes. My doc actually adds different antibiotics to test for sensitivites for because there are so few that will work for my cepacia (steno is also problematic with me). I have to check about price, but I don't think it is a very expensive test to do in comparison to a test like Ambry which does cost quite a bit. I think my doc said that it was one of the cheaper tests as it is an automated test, not done like I had to do in my micro class which was labor intensive. But, it shouldn't matter, like you said, that is why we have insurance.

Ironically, the one antibiotic that my cepacia is sensitive to is Cipro, unfortunately, I am severely allergic to the drug...bummer, as there are no other drugs that will work by mouth, so IV's it is when I start to get sick. I too learn alot from this site, there is always a question that someone asks that makes me stop and think.
 

JustDucky

New member
I have my sputum tested frequently and when I do, I always ask for a copy of the results which shows how colonized I am as well as the sensitivites. The doc usually flags the sample as CF sputum, so the lab looks for B. cepacia, MAC, all of the bugs. I like to know exactly what I am growing and quantity as well. When I am ill, it is no surprise that my samples contain very high amounts of B. cepacia as well as staph or some other cootie, but mostly the cepacia. In the lab that my sputum is sent, the gram stain will either show scant to +4 which is alot for quantity, then once the bug is ID'ed, it will show how much of the sample is that bug. The sensitivities are good to look at, shows what I am resistant to, which is almost everything as far as my cepacia goes. My doc actually adds different antibiotics to test for sensitivites for because there are so few that will work for my cepacia (steno is also problematic with me). I have to check about price, but I don't think it is a very expensive test to do in comparison to a test like Ambry which does cost quite a bit. I think my doc said that it was one of the cheaper tests as it is an automated test, not done like I had to do in my micro class which was labor intensive. But, it shouldn't matter, like you said, that is why we have insurance.

Ironically, the one antibiotic that my cepacia is sensitive to is Cipro, unfortunately, I am severely allergic to the drug...bummer, as there are no other drugs that will work by mouth, so IV's it is when I start to get sick. I too learn alot from this site, there is always a question that someone asks that makes me stop and think.
 

JustDucky

New member
I have my sputum tested frequently and when I do, I always ask for a copy of the results which shows how colonized I am as well as the sensitivites. The doc usually flags the sample as CF sputum, so the lab looks for B. cepacia, MAC, all of the bugs. I like to know exactly what I am growing and quantity as well. When I am ill, it is no surprise that my samples contain very high amounts of B. cepacia as well as staph or some other cootie, but mostly the cepacia. In the lab that my sputum is sent, the gram stain will either show scant to +4 which is alot for quantity, then once the bug is ID'ed, it will show how much of the sample is that bug. The sensitivities are good to look at, shows what I am resistant to, which is almost everything as far as my cepacia goes. My doc actually adds different antibiotics to test for sensitivites for because there are so few that will work for my cepacia (steno is also problematic with me). I have to check about price, but I don't think it is a very expensive test to do in comparison to a test like Ambry which does cost quite a bit. I think my doc said that it was one of the cheaper tests as it is an automated test, not done like I had to do in my micro class which was labor intensive. But, it shouldn't matter, like you said, that is why we have insurance.

Ironically, the one antibiotic that my cepacia is sensitive to is Cipro, unfortunately, I am severely allergic to the drug...bummer, as there are no other drugs that will work by mouth, so IV's it is when I start to get sick. I too learn alot from this site, there is always a question that someone asks that makes me stop and think.
 

JustDucky

New member
I have my sputum tested frequently and when I do, I always ask for a copy of the results which shows how colonized I am as well as the sensitivites. The doc usually flags the sample as CF sputum, so the lab looks for B. cepacia, MAC, all of the bugs. I like to know exactly what I am growing and quantity as well. When I am ill, it is no surprise that my samples contain very high amounts of B. cepacia as well as staph or some other cootie, but mostly the cepacia. In the lab that my sputum is sent, the gram stain will either show scant to +4 which is alot for quantity, then once the bug is ID'ed, it will show how much of the sample is that bug. The sensitivities are good to look at, shows what I am resistant to, which is almost everything as far as my cepacia goes. My doc actually adds different antibiotics to test for sensitivites for because there are so few that will work for my cepacia (steno is also problematic with me). I have to check about price, but I don't think it is a very expensive test to do in comparison to a test like Ambry which does cost quite a bit. I think my doc said that it was one of the cheaper tests as it is an automated test, not done like I had to do in my micro class which was labor intensive. But, it shouldn't matter, like you said, that is why we have insurance.

Ironically, the one antibiotic that my cepacia is sensitive to is Cipro, unfortunately, I am severely allergic to the drug...bummer, as there are no other drugs that will work by mouth, so IV's it is when I start to get sick. I too learn alot from this site, there is always a question that someone asks that makes me stop and think.
 
Top