Achromobacter - a place to compare notes!

B

Bridge76

Guest
Hi there
A few of us were comparing symptoms of the exceedingly irritating achromobacter bug. We realised that there are some really specific symptons and problems unique to this damned resistant bug. If you have any input, please join our open group on facebook. Just do a search for 'Achromobacter Afficionados!' It would be helpful to know if anyone has any helpful tips other than paracetamol for getting over the ridiculous tiredness you get with this bug. And of course, any antibiotics that work for you, or 'alternative' remedies.

Thanks, S
 
B

Bridge76

Guest
Hi there
A few of us were comparing symptoms of the exceedingly irritating achromobacter bug. We realised that there are some really specific symptons and problems unique to this damned resistant bug. If you have any input, please join our open group on facebook. Just do a search for 'Achromobacter Afficionados!' It would be helpful to know if anyone has any helpful tips other than paracetamol for getting over the ridiculous tiredness you get with this bug. And of course, any antibiotics that work for you, or 'alternative' remedies.

Thanks, S
 
B

Bridge76

Guest
Hi there
<br />A few of us were comparing symptoms of the exceedingly irritating achromobacter bug. We realised that there are some really specific symptons and problems unique to this damned resistant bug. If you have any input, please join our open group on facebook. Just do a search for 'Achromobacter Afficionados!' It would be helpful to know if anyone has any helpful tips other than paracetamol for getting over the ridiculous tiredness you get with this bug. And of course, any antibiotics that work for you, or 'alternative' remedies.
<br />
<br />Thanks, S
 
M

mom2lillian

New member
I found the group on facebook. I found it interesting to see that you both deal with inflammation so much. That is my main problem and Achromabacter and Pseudo are the only two things I culture.

I prefer to keep CF forums for my CF items and Facebook for social networking with people I know IRL or a few CF'ers, especially with the group being public, absolutely everyone that is on your friends list can see what you write and I think that is just too much information for some of my family and near all of my friends. Thank you for letting me know about you, I'll read up every once in a while.
 
M

mom2lillian

New member
I found the group on facebook. I found it interesting to see that you both deal with inflammation so much. That is my main problem and Achromabacter and Pseudo are the only two things I culture.

I prefer to keep CF forums for my CF items and Facebook for social networking with people I know IRL or a few CF'ers, especially with the group being public, absolutely everyone that is on your friends list can see what you write and I think that is just too much information for some of my family and near all of my friends. Thank you for letting me know about you, I'll read up every once in a while.
 
M

mom2lillian

New member
I found the group on facebook. I found it interesting to see that you both deal with inflammation so much. That is my main problem and Achromabacter and Pseudo are the only two things I culture.
<br />
<br />I prefer to keep CF forums for my CF items and Facebook for social networking with people I know IRL or a few CF'ers, especially with the group being public, absolutely everyone that is on your friends list can see what you write and I think that is just too much information for some of my family and near all of my friends. Thank you for letting me know about you, I'll read up every once in a while.
 
K

kgfrompa

Guest
Hi I also have alot of inflammation and grow Pseuo and achromobacter. The doctors didnt tell me about the Achromobacter which culture in June until last week So this is so new to me. I also dont like to post on facebook because I feel more comforterable here Thank you so much for teaching me a little more Kathy from PA
 
K

kgfrompa

Guest
Hi I also have alot of inflammation and grow Pseuo and achromobacter. The doctors didnt tell me about the Achromobacter which culture in June until last week So this is so new to me. I also dont like to post on facebook because I feel more comforterable here Thank you so much for teaching me a little more Kathy from PA
 
K

kgfrompa

Guest
Hi I also have alot of inflammation and grow Pseuo and achromobacter. The doctors didnt tell me about the Achromobacter which culture in June until last week So this is so new to me. I also dont like to post on facebook because I feel more comforterable here Thank you so much for teaching me a little more Kathy from PA
 
B

Bridge76

Guest
Thanks for your feedback guys. I concur with your views about facebook - I will ask my friend who created it to make it a closed group, in which people request to join and then can read and contribute. I also don't like the idea of everyone knowing about my many issues with sputum!

S
 
B

Bridge76

Guest
Thanks for your feedback guys. I concur with your views about facebook - I will ask my friend who created it to make it a closed group, in which people request to join and then can read and contribute. I also don't like the idea of everyone knowing about my many issues with sputum!

S
 
B

Bridge76

Guest
Thanks for your feedback guys. I concur with your views about facebook - I will ask my friend who created it to make it a closed group, in which people request to join and then can read and contribute. I also don't like the idea of everyone knowing about my many issues with sputum!
<br />
<br />S
 
N

NYCLawGirl

New member
i call it achromobastard (haha) and somehow that's the bug that continues to pop up even post-tx -- wouldn't you know it. i agree that it has weird side effects and is just a generally annoying bug. after culturing it i was on IVs and steroids pretty much nonstop until my transplant...grrrr. anyway, along with the others i would be happy to share what i know and learn from the group about this bug, but not so much in an open space on FB. good idea though!
 
N

NYCLawGirl

New member
i call it achromobastard (haha) and somehow that's the bug that continues to pop up even post-tx -- wouldn't you know it. i agree that it has weird side effects and is just a generally annoying bug. after culturing it i was on IVs and steroids pretty much nonstop until my transplant...grrrr. anyway, along with the others i would be happy to share what i know and learn from the group about this bug, but not so much in an open space on FB. good idea though!
 
N

NYCLawGirl

New member
i call it achromobastard (haha) and somehow that's the bug that continues to pop up even post-tx -- wouldn't you know it. i agree that it has weird side effects and is just a generally annoying bug. after culturing it i was on IVs and steroids pretty much nonstop until my transplant...grrrr. anyway, along with the others i would be happy to share what i know and learn from the group about this bug, but not so much in an open space on FB. good idea though!
 
B

Bridge76

Guest
Hey guys
Just to let you know - the group is now a closed one so you need to join us to read and contribute.

Any thoughts from you all about a current exacerbation I have. I'm on my 3rd lot of IVs for the same admission - 1st lot was tazocin & colisten, 2nd try then included tigercycline and given that after a bit my CRP went up and temperatures came back, tried a 3rd lot of Meropenem with colisten and cipro - all IV. However, I'm not convinced these are even working as temp was up high last night.

There's been some talk of Fosformycin (although apparantly there are supply issues as Germany is stockpiling for their own patients) - anyone ever had joy with this? Anything else particularly good?

I'm at the top place in the UK to deal with CF and loosing faith in the docs.

Thanks, Sarah
 
B

Bridge76

Guest
Hey guys
Just to let you know - the group is now a closed one so you need to join us to read and contribute.

Any thoughts from you all about a current exacerbation I have. I'm on my 3rd lot of IVs for the same admission - 1st lot was tazocin & colisten, 2nd try then included tigercycline and given that after a bit my CRP went up and temperatures came back, tried a 3rd lot of Meropenem with colisten and cipro - all IV. However, I'm not convinced these are even working as temp was up high last night.

There's been some talk of Fosformycin (although apparantly there are supply issues as Germany is stockpiling for their own patients) - anyone ever had joy with this? Anything else particularly good?

I'm at the top place in the UK to deal with CF and loosing faith in the docs.

Thanks, Sarah
 
You must log in or register to reply here.
Top