Sputum cultures

T

tammykrumrey

Guest
OK! Maybe a crazy question, but I was told by someone that works in CF clinical studies that it is better for patients with CF to culture a variety of bacteria rather that one that was dominating over the others. I was shocked when Kaylas recent culture showed PA for the first time...her normal stuff is Staph, MRSA, and Burkholderia Multivorans. And the clinical nurse told me that in CF it's actually better to have a variety.

Although I would think the opposite. And now MAC is starting to make a presence. And so is ABPA beginning to flare up? I think that is just too many at the party??!!?

Has anyone else heard such a thing? And by the way, when do doctors normally treat for MAC. Apparently Kayla has cultured it a four times (now five counting right now), and I was never informed. I even get copies of the cultures, and for some reason didn't get copies of those reports...the only reason I got this one was b/c she is in the hospital and I asked the nurse for a copy of her latest cultures and she printed it for me. And when drs were doing their rounds this morning one of the attending doctors asked about the MAC and looked surprised that her doctor hasn't treated her for it yet? Any thoughts?

Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
Tammy
 
T

tammykrumrey

Guest
OK! Maybe a crazy question, but I was told by someone that works in CF clinical studies that it is better for patients with CF to culture a variety of bacteria rather that one that was dominating over the others. I was shocked when Kaylas recent culture showed PA for the first time...her normal stuff is Staph, MRSA, and Burkholderia Multivorans. And the clinical nurse told me that in CF it's actually better to have a variety.

Although I would think the opposite. And now MAC is starting to make a presence. And so is ABPA beginning to flare up? I think that is just too many at the party??!!?

Has anyone else heard such a thing? And by the way, when do doctors normally treat for MAC. Apparently Kayla has cultured it a four times (now five counting right now), and I was never informed. I even get copies of the cultures, and for some reason didn't get copies of those reports...the only reason I got this one was b/c she is in the hospital and I asked the nurse for a copy of her latest cultures and she printed it for me. And when drs were doing their rounds this morning one of the attending doctors asked about the MAC and looked surprised that her doctor hasn't treated her for it yet? Any thoughts?

Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
Tammy
 
T

tammykrumrey

Guest
OK! Maybe a crazy question, but I was told by someone that works in CF clinical studies that it is better for patients with CF to culture a variety of bacteria rather that one that was dominating over the others. I was shocked when Kaylas recent culture showed PA for the first time...her normal stuff is Staph, MRSA, and Burkholderia Multivorans. And the clinical nurse told me that in CF it's actually better to have a variety.
<br />
<br />Although I would think the opposite. And now MAC is starting to make a presence. And so is ABPA beginning to flare up? I think that is just too many at the party??!!?
<br />
<br />Has anyone else heard such a thing? And by the way, when do doctors normally treat for MAC. Apparently Kayla has cultured it a four times (now five counting right now), and I was never informed. I even get copies of the cultures, and for some reason didn't get copies of those reports...the only reason I got this one was b/c she is in the hospital and I asked the nurse for a copy of her latest cultures and she printed it for me. And when drs were doing their rounds this morning one of the attending doctors asked about the MAC and looked surprised that her doctor hasn't treated her for it yet? Any thoughts?
<br />
<br />Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Tammy
 
J

Jeana

New member
I'm not sure I have the answer, but I do know that when one bacteria goes away, another may flare up. For example, we have been treating my staph (which was MRSA and now they call a small variant strand of staph) with Septra DS for about 2 years and not my PA. Now, with my FEV1 down we are going to treat my PA. My doctor said that the staph would then take over. But that hopefully we would have more options to treat my staph, since my PA is resistent to many things. Not sure how to look at it except that maybe if you culture a large variety of bacteria than any one won't be too well-populated??
 
J

Jeana

New member
I'm not sure I have the answer, but I do know that when one bacteria goes away, another may flare up. For example, we have been treating my staph (which was MRSA and now they call a small variant strand of staph) with Septra DS for about 2 years and not my PA. Now, with my FEV1 down we are going to treat my PA. My doctor said that the staph would then take over. But that hopefully we would have more options to treat my staph, since my PA is resistent to many things. Not sure how to look at it except that maybe if you culture a large variety of bacteria than any one won't be too well-populated??
 
J

Jeana

New member
I'm not sure I have the answer, but I do know that when one bacteria goes away, another may flare up. For example, we have been treating my staph (which was MRSA and now they call a small variant strand of staph) with Septra DS for about 2 years and not my PA. Now, with my FEV1 down we are going to treat my PA. My doctor said that the staph would then take over. But that hopefully we would have more options to treat my staph, since my PA is resistent to many things. Not sure how to look at it except that maybe if you culture a large variety of bacteria than any one won't be too well-populated??
 
J

Jana

New member
Well, I've heard that also but wouldn't say it's been true in my case. For a long time I cultured only PA, but added MRSA maybe 7 or 8 years ago. It's just made things more complicated. Often we have to treat both at the same time, or we treat one, and the other immediately begins causing trouble. I've been sick more with both of them than I was with just one.

CF can vary so much between people, though, so maybe it is true for some.

Hope Kayla is feeling better soon!
 
J

Jana

New member
Well, I've heard that also but wouldn't say it's been true in my case. For a long time I cultured only PA, but added MRSA maybe 7 or 8 years ago. It's just made things more complicated. Often we have to treat both at the same time, or we treat one, and the other immediately begins causing trouble. I've been sick more with both of them than I was with just one.

CF can vary so much between people, though, so maybe it is true for some.

Hope Kayla is feeling better soon!
 
J

Jana

New member
Well, I've heard that also but wouldn't say it's been true in my case. For a long time I cultured only PA, but added MRSA maybe 7 or 8 years ago. It's just made things more complicated. Often we have to treat both at the same time, or we treat one, and the other immediately begins causing trouble. I've been sick more with both of them than I was with just one.
<br />
<br />CF can vary so much between people, though, so maybe it is true for some.
<br />
<br />Hope Kayla is feeling better soon!
 
W

windex125

Guest
Hi I'm Pat women 55 with severe MAC it is extremely important to treat as it will eat away at the lung and spread over the years. My right lung does not show up on the xray anymore because of MAC I only tested once for PA that was in 2007 but I am sure it's still hiding in there somewhere? MAC is becoming a super bug and very hard to get under control so please make sure the doctor fully explains this, and it's treatment. I went untreated for too long and now there are not many drugs that can kill it off it's a super bug for sure. My cultures usually show staph as well.
 
W

windex125

Guest
Hi I'm Pat women 55 with severe MAC it is extremely important to treat as it will eat away at the lung and spread over the years. My right lung does not show up on the xray anymore because of MAC I only tested once for PA that was in 2007 but I am sure it's still hiding in there somewhere? MAC is becoming a super bug and very hard to get under control so please make sure the doctor fully explains this, and it's treatment. I went untreated for too long and now there are not many drugs that can kill it off it's a super bug for sure. My cultures usually show staph as well.
 
W

windex125

Guest
Hi I'm Pat women 55 with severe MAC it is extremely important to treat as it will eat away at the lung and spread over the years. My right lung does not show up on the xray anymore because of MAC I only tested once for PA that was in 2007 but I am sure it's still hiding in there somewhere? MAC is becoming a super bug and very hard to get under control so please make sure the doctor fully explains this, and it's treatment. I went untreated for too long and now there are not many drugs that can kill it off it's a super bug for sure. My cultures usually show staph as well.
 
K

Keepercjr

Guest
I had Mycobacterium Abscessus many years ago and we did treat it (at my pediatric clinic) but I don't remember it causing problems. A few years ago I was discussing it with my adult doctors and we decided that if I did culture it again, it would be my choice or not to treat it (as long as it wasn't causing a problem). I would most likely not have treated it. Treating mycobacteriums is not like taking a 2 week course of antibiotics. It is months and months of several antibiotics, usually IVs though we did treat mine with inhaled Amikacin and biaxin. Many CF doctors are opting not to treat unless it is causing a problem for the patient.
 
K

Keepercjr

Guest
I had Mycobacterium Abscessus many years ago and we did treat it (at my pediatric clinic) but I don't remember it causing problems. A few years ago I was discussing it with my adult doctors and we decided that if I did culture it again, it would be my choice or not to treat it (as long as it wasn't causing a problem). I would most likely not have treated it. Treating mycobacteriums is not like taking a 2 week course of antibiotics. It is months and months of several antibiotics, usually IVs though we did treat mine with inhaled Amikacin and biaxin. Many CF doctors are opting not to treat unless it is causing a problem for the patient.
 
K

Keepercjr

Guest
I had Mycobacterium Abscessus many years ago and we did treat it (at my pediatric clinic) but I don't remember it causing problems. A few years ago I was discussing it with my adult doctors and we decided that if I did culture it again, it would be my choice or not to treat it (as long as it wasn't causing a problem). I would most likely not have treated it. Treating mycobacteriums is not like taking a 2 week course of antibiotics. It is months and months of several antibiotics, usually IVs though we did treat mine with inhaled Amikacin and biaxin. Many CF doctors are opting not to treat unless it is causing a problem for the patient.
 
W

windex125

Guest
I took a cocktail of 3 oral meds for 9mts. with blood work every month,I turned tan or I shd say orange like if I had baked in the Islands for a vacation it was gradual, the meds were so sun sentative that I had to wear gloves when driving as my hands were getting a sunburn Did it help not really? maybe short term? The dr. who was treating me at the time said to me well all yr. other numbers look fine do you want to treat this? the drugs are very serious? Stupid me said NO. Then 2 years later seeing a different doctor said you need to treat this now... decsisons we take and chances with meds. I inhaled Tobi thru my nebulizer for yrs. in the early 90's not knowing ther first side effect is loss of hearing? I am wearing hearing aids now.Even though I was told well that side effect were considered through IV 's only well when we inhale it goes into our bloodstream? But this was back in the 90's, did the Tobi help sure, so I guess we have to weight the odds at that time. As for the MAC I had to give up gardening which was one of my favorite things, and remove all potted plants in the house, as we know this is considered a bacteria from dirt and water? We have compromised systems so I guess we are open for the unknown.
------------
Pat 55 w/CF
 
W

windex125

Guest
I took a cocktail of 3 oral meds for 9mts. with blood work every month,I turned tan or I shd say orange like if I had baked in the Islands for a vacation it was gradual, the meds were so sun sentative that I had to wear gloves when driving as my hands were getting a sunburn Did it help not really? maybe short term? The dr. who was treating me at the time said to me well all yr. other numbers look fine do you want to treat this? the drugs are very serious? Stupid me said NO. Then 2 years later seeing a different doctor said you need to treat this now... decsisons we take and chances with meds. I inhaled Tobi thru my nebulizer for yrs. in the early 90's not knowing ther first side effect is loss of hearing? I am wearing hearing aids now.Even though I was told well that side effect were considered through IV 's only well when we inhale it goes into our bloodstream? But this was back in the 90's, did the Tobi help sure, so I guess we have to weight the odds at that time. As for the MAC I had to give up gardening which was one of my favorite things, and remove all potted plants in the house, as we know this is considered a bacteria from dirt and water? We have compromised systems so I guess we are open for the unknown.
------------
Pat 55 w/CF
 
W

windex125

Guest
I took a cocktail of 3 oral meds for 9mts. with blood work every month,I turned tan or I shd say orange like if I had baked in the Islands for a vacation it was gradual, the meds were so sun sentative that I had to wear gloves when driving as my hands were getting a sunburn Did it help not really? maybe short term? The dr. who was treating me at the time said to me well all yr. other numbers look fine do you want to treat this? the drugs are very serious? Stupid me said NO. Then 2 years later seeing a different doctor said you need to treat this now... decsisons we take and chances with meds. I inhaled Tobi thru my nebulizer for yrs. in the early 90's not knowing ther first side effect is loss of hearing? I am wearing hearing aids now.Even though I was told well that side effect were considered through IV 's only well when we inhale it goes into our bloodstream? But this was back in the 90's, did the Tobi help sure, so I guess we have to weight the odds at that time. As for the MAC I had to give up gardening which was one of my favorite things, and remove all potted plants in the house, as we know this is considered a bacteria from dirt and water? We have compromised systems so I guess we are open for the unknown.
<br />------------
<br />Pat 55 w/CF
 
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