Bek cultured Achromobacter

[mom2lillian]

I have cultured it for years, my FEV1 has went up and my infection frequency has went down, during those years. However I have become more pro-active and compliant during that time as well. When I do have an exacerbation it takes stronger stuff zosyn to knock it down since both it and my PA are highly resistant. I have not, however, had it show up in a culture in 2009---oddly enough another rare gram negative rod did show up in my most recent one but *me thinks* they mis-identified it and its actually the az since what they ID'd it as is very very hard to ID the way it was supposedly ID'd. Only time will tell.

Oh and the docs say that az seems to spell trouble for some and nothing for others so far for me we've never been able to tell the difference between it adn my PA.

 

[mom2lillian]

I have cultured it for years, my FEV1 has went up and my infection frequency has went down, during those years. However I have become more pro-active and compliant during that time as well. When I do have an exacerbation it takes stronger stuff zosyn to knock it down since both it and my PA are highly resistant. I have not, however, had it show up in a culture in 2009---oddly enough another rare gram negative rod did show up in my most recent one but *me thinks* they mis-identified it and its actually the az since what they ID'd it as is very very hard to ID the way it was supposedly ID'd. Only time will tell.

Oh and the docs say that az seems to spell trouble for some and nothing for others so far for me we've never been able to tell the difference between it adn my PA.

 

[mom2lillian]

I have cultured it for years, my FEV1 has went up and my infection frequency has went down, during those years. However I have become more pro-active and compliant during that time as well. When I do have an exacerbation it takes stronger stuff zosyn to knock it down since both it and my PA are highly resistant. I have not, however, had it show up in a culture in 2009---oddly enough another rare gram negative rod did show up in my most recent one but *me thinks* they mis-identified it and its actually the az since what they ID'd it as is very very hard to ID the way it was supposedly ID'd. Only time will tell.

Oh and the docs say that az seems to spell trouble for some and nothing for others so far for me we've never been able to tell the difference between it adn my PA.

 

[mom2lillian]

I have cultured it for years, my FEV1 has went up and my infection frequency has went down, during those years. However I have become more pro-active and compliant during that time as well. When I do have an exacerbation it takes stronger stuff zosyn to knock it down since both it and my PA are highly resistant. I have not, however, had it show up in a culture in 2009---oddly enough another rare gram negative rod did show up in my most recent one but *me thinks* they mis-identified it and its actually the az since what they ID'd it as is very very hard to ID the way it was supposedly ID'd. Only time will tell.

Oh and the docs say that az seems to spell trouble for some and nothing for others so far for me we've never been able to tell the difference between it adn my PA.

 

[mom2lillian]

I have cultured it for years, my FEV1 has went up and my infection frequency has went down, during those years. However I have become more pro-active and compliant during that time as well. When I do have an exacerbation it takes stronger stuff zosyn to knock it down since both it and my PA are highly resistant. I have not, however, had it show up in a culture in 2009---oddly enough another rare gram negative rod did show up in my most recent one but *me thinks* they mis-identified it and its actually the az since what they ID'd it as is very very hard to ID the way it was supposedly ID'd. Only time will tell.
<br />
<br />Oh and the docs say that az seems to spell trouble for some and nothing for others so far for me we've never been able to tell the difference between it adn my PA.

 

[beleache]

Hey Robin,

Im glad you got some replies. I dont have any infor on Achromobacter, I just wanted to let you know Bek & you will be in my thoughts & prayers..

<img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hey Robin,

Im glad you got some replies. I dont have any infor on Achromobacter, I just wanted to let you know Bek & you will be in my thoughts & prayers..

<img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hey Robin,

Im glad you got some replies. I dont have any infor on Achromobacter, I just wanted to let you know Bek & you will be in my thoughts & prayers..

<img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hey Robin,

Im glad you got some replies. I dont have any infor on Achromobacter, I just wanted to let you know Bek & you will be in my thoughts & prayers..

<img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hey Robin,
<br />
<br /> Im glad you got some replies. I dont have any infor on Achromobacter, I just wanted to let you know Bek & you will be in my thoughts & prayers..
<br />
<br /> <img src="i/expressions/heart.gif" border="0"> joni

 

[JustDucky]

It is always possible that that bug might have been lurking around her lungs for awhile in small colonies. Not sure if it would cause the fevers you describe if the cultures were negative for it. Have they looked into other bacteria such as MAC (mycobacterium family)..just a thought. That bug can cause lingering low grade temps along with other symptoms..I personally don't have it, but whenever I have low grade temps that seem to hang on, they check for it.
I agree with others that it has taken big guns to take it down...currently I am on tygacil (sp?) and ertapenem (impepenem/cilistatin for this bug and steno. I have had three exacerbatons requiring IV's since fall although other bugs were responsible for making me ill as well.
hope this helps
Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

It is always possible that that bug might have been lurking around her lungs for awhile in small colonies. Not sure if it would cause the fevers you describe if the cultures were negative for it. Have they looked into other bacteria such as MAC (mycobacterium family)..just a thought. That bug can cause lingering low grade temps along with other symptoms..I personally don't have it, but whenever I have low grade temps that seem to hang on, they check for it.
I agree with others that it has taken big guns to take it down...currently I am on tygacil (sp?) and ertapenem (impepenem/cilistatin for this bug and steno. I have had three exacerbatons requiring IV's since fall although other bugs were responsible for making me ill as well.
hope this helps
Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

It is always possible that that bug might have been lurking around her lungs for awhile in small colonies. Not sure if it would cause the fevers you describe if the cultures were negative for it. Have they looked into other bacteria such as MAC (mycobacterium family)..just a thought. That bug can cause lingering low grade temps along with other symptoms..I personally don't have it, but whenever I have low grade temps that seem to hang on, they check for it.
I agree with others that it has taken big guns to take it down...currently I am on tygacil (sp?) and ertapenem (impepenem/cilistatin for this bug and steno. I have had three exacerbatons requiring IV's since fall although other bugs were responsible for making me ill as well.
hope this helps
Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

It is always possible that that bug might have been lurking around her lungs for awhile in small colonies. Not sure if it would cause the fevers you describe if the cultures were negative for it. Have they looked into other bacteria such as MAC (mycobacterium family)..just a thought. That bug can cause lingering low grade temps along with other symptoms..I personally don't have it, but whenever I have low grade temps that seem to hang on, they check for it.
I agree with others that it has taken big guns to take it down...currently I am on tygacil (sp?) and ertapenem (impepenem/cilistatin for this bug and steno. I have had three exacerbatons requiring IV's since fall although other bugs were responsible for making me ill as well.
hope this helps
Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

It is always possible that that bug might have been lurking around her lungs for awhile in small colonies. Not sure if it would cause the fevers you describe if the cultures were negative for it. Have they looked into other bacteria such as MAC (mycobacterium family)..just a thought. That bug can cause lingering low grade temps along with other symptoms..I personally don't have it, but whenever I have low grade temps that seem to hang on, they check for it.
<br />I agree with others that it has taken big guns to take it down...currently I am on tygacil (sp?) and ertapenem (impepenem/cilistatin for this bug and steno. I have had three exacerbatons requiring IV's since fall although other bugs were responsible for making me ill as well.
<br />hope this helps
<br />Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Bridge76]

I have a lot of experience with this bug, as I've cultured it for about 10 yrs. Previously I had PA, but since growing Acromobacter, Pa has made only rare appearances.

At first, I had no problem with it. Even went a whole year without IVs (unheard of for me). As the years progressed though, it has become more problematic. I want to stress that my lung function has not decreased in that 10 years, but daily life with symptoms has been troublemsome. Basically, it does increase the ammount of sputum you produce, so I have to do 3 hrs of physio each day, or I can feel myself from filling up. Over the past couple of years, my CRP levels in my blood have been rising so that anything in the 70s or above is the norm. This makes me feel exhausted a lot of the time. The bug is really resitant, but tigercycline seems to be a good IV. I've also recently started nebulised Azli, which is still part of a study (being done in the US, so my docs have to get it shipped over to London for me - I am English).

Basically, my doc told me recently that this bug 'isn't going to knock you off your perch, but will be a pain'. Best advice I can give, is keep up the physio and as much exercise as possible. Do all the antibiotic nebs and stay on top of it.

I hope this post is helpful, it is very honest - I hope that is ok.

Sarah

 

[Bridge76]

I have a lot of experience with this bug, as I've cultured it for about 10 yrs. Previously I had PA, but since growing Acromobacter, Pa has made only rare appearances.

At first, I had no problem with it. Even went a whole year without IVs (unheard of for me). As the years progressed though, it has become more problematic. I want to stress that my lung function has not decreased in that 10 years, but daily life with symptoms has been troublemsome. Basically, it does increase the ammount of sputum you produce, so I have to do 3 hrs of physio each day, or I can feel myself from filling up. Over the past couple of years, my CRP levels in my blood have been rising so that anything in the 70s or above is the norm. This makes me feel exhausted a lot of the time. The bug is really resitant, but tigercycline seems to be a good IV. I've also recently started nebulised Azli, which is still part of a study (being done in the US, so my docs have to get it shipped over to London for me - I am English).

Basically, my doc told me recently that this bug 'isn't going to knock you off your perch, but will be a pain'. Best advice I can give, is keep up the physio and as much exercise as possible. Do all the antibiotic nebs and stay on top of it.

I hope this post is helpful, it is very honest - I hope that is ok.

Sarah

 

[Bridge76]

I have a lot of experience with this bug, as I've cultured it for about 10 yrs. Previously I had PA, but since growing Acromobacter, Pa has made only rare appearances.

At first, I had no problem with it. Even went a whole year without IVs (unheard of for me). As the years progressed though, it has become more problematic. I want to stress that my lung function has not decreased in that 10 years, but daily life with symptoms has been troublemsome. Basically, it does increase the ammount of sputum you produce, so I have to do 3 hrs of physio each day, or I can feel myself from filling up. Over the past couple of years, my CRP levels in my blood have been rising so that anything in the 70s or above is the norm. This makes me feel exhausted a lot of the time. The bug is really resitant, but tigercycline seems to be a good IV. I've also recently started nebulised Azli, which is still part of a study (being done in the US, so my docs have to get it shipped over to London for me - I am English).

Basically, my doc told me recently that this bug 'isn't going to knock you off your perch, but will be a pain'. Best advice I can give, is keep up the physio and as much exercise as possible. Do all the antibiotic nebs and stay on top of it.

I hope this post is helpful, it is very honest - I hope that is ok.

Sarah

 

[Bridge76]

I have a lot of experience with this bug, as I've cultured it for about 10 yrs. Previously I had PA, but since growing Acromobacter, Pa has made only rare appearances.

At first, I had no problem with it. Even went a whole year without IVs (unheard of for me). As the years progressed though, it has become more problematic. I want to stress that my lung function has not decreased in that 10 years, but daily life with symptoms has been troublemsome. Basically, it does increase the ammount of sputum you produce, so I have to do 3 hrs of physio each day, or I can feel myself from filling up. Over the past couple of years, my CRP levels in my blood have been rising so that anything in the 70s or above is the norm. This makes me feel exhausted a lot of the time. The bug is really resitant, but tigercycline seems to be a good IV. I've also recently started nebulised Azli, which is still part of a study (being done in the US, so my docs have to get it shipped over to London for me - I am English).

Basically, my doc told me recently that this bug 'isn't going to knock you off your perch, but will be a pain'. Best advice I can give, is keep up the physio and as much exercise as possible. Do all the antibiotic nebs and stay on top of it.

I hope this post is helpful, it is very honest - I hope that is ok.

Sarah

 

[Bridge76]

I have a lot of experience with this bug, as I've cultured it for about 10 yrs. Previously I had PA, but since growing Acromobacter, Pa has made only rare appearances.
<br />
<br />At first, I had no problem with it. Even went a whole year without IVs (unheard of for me). As the years progressed though, it has become more problematic. I want to stress that my lung function has not decreased in that 10 years, but daily life with symptoms has been troublemsome. Basically, it does increase the ammount of sputum you produce, so I have to do 3 hrs of physio each day, or I can feel myself from filling up. Over the past couple of years, my CRP levels in my blood have been rising so that anything in the 70s or above is the norm. This makes me feel exhausted a lot of the time. The bug is really resitant, but tigercycline seems to be a good IV. I've also recently started nebulised Azli, which is still part of a study (being done in the US, so my docs have to get it shipped over to London for me - I am English).
<br />
<br />Basically, my doc told me recently that this bug 'isn't going to knock you off your perch, but will be a pain'. Best advice I can give, is keep up the physio and as much exercise as possible. Do all the antibiotic nebs and stay on top of it.
<br />
<br />I hope this post is helpful, it is very honest - I hope that is ok.
<br />
<br />Sarah