Achromobacter - a place to compare notes!

[Bridge76]

Hey guys
<br />Just to let you know - the group is now a closed one so you need to join us to read and contribute.
<br />
<br />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.
<br />
<br />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?
<br />
<br />I'm at the top place in the UK to deal with CF and loosing faith in the docs.
<br />
<br />Thanks, Sarah

 

[JustDucky]

I feel for you,achromobacter has been in my sputum for over a year now, it keeps growing even with really aggressive therapy. I was recently on a full month of strong IV's, my PA cultures have improved, achromobacter has not....it makes me have night sweats, low grade fevers, a bad cough to the point of pleurisy and needing serious pain meds, and bleeding. So very frustrating. Sarah, I have never had any experience with Fosformycin, mostly tygacil, zosyn, merrem for that bug. I hope something works for you soon though.
Sending hugs to all who deal with this,
Jenn

 

[JustDucky]

I feel for you,achromobacter has been in my sputum for over a year now, it keeps growing even with really aggressive therapy. I was recently on a full month of strong IV's, my PA cultures have improved, achromobacter has not....it makes me have night sweats, low grade fevers, a bad cough to the point of pleurisy and needing serious pain meds, and bleeding. So very frustrating. Sarah, I have never had any experience with Fosformycin, mostly tygacil, zosyn, merrem for that bug. I hope something works for you soon though.
Sending hugs to all who deal with this,
Jenn

 

[JustDucky]

I feel for you,achromobacter has been in my sputum for over a year now, it keeps growing even with really aggressive therapy. I was recently on a full month of strong IV's, my PA cultures have improved, achromobacter has not....it makes me have night sweats, low grade fevers, a bad cough to the point of pleurisy and needing serious pain meds, and bleeding. So very frustrating. Sarah, I have never had any experience with Fosformycin, mostly tygacil, zosyn, merrem for that bug. I hope something works for you soon though.
<br />Sending hugs to all who deal with this,
<br />Jenn

 

[Bridge76]

Thanks for yourlovely emails. I can't believe how similar all our symptons are with this troublesome bug.
Jenn - the antibiotics you've used are the ones that I have most relied upon over the past 2 years. I'll let you know if I do ever get the Fosformycin and whether it's worth it!

Prob not going to be on this admission though.

Best wishes to you all.

Sarah

 

[Bridge76]

Thanks for yourlovely emails. I can't believe how similar all our symptons are with this troublesome bug.
Jenn - the antibiotics you've used are the ones that I have most relied upon over the past 2 years. I'll let you know if I do ever get the Fosformycin and whether it's worth it!

Prob not going to be on this admission though.

Best wishes to you all.

Sarah

 

[Bridge76]

Thanks for yourlovely emails. I can't believe how similar all our symptons are with this troublesome bug.
<br />Jenn - the antibiotics you've used are the ones that I have most relied upon over the past 2 years. I'll let you know if I do ever get the Fosformycin and whether it's worth it!
<br />
<br />Prob not going to be on this admission though.
<br />
<br />Best wishes to you all.
<br />
<br />Sarah

 

[amessofphotos]

i cant seem to find the facebook group can someone add me? my name is mary kathleen getz! thanks so much!

 

[amessofphotos]

i cant seem to find the facebook group can someone add me? my name is mary kathleen getz! thanks so much!