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Have you cultured this.

sunflower

New member
Hi,

I was just told yesrterday that Ihave "stenotrophus pseudomonas". (You can get it from toothbrushes/found around skinks etc).I have been soo good with sterlising my tooth brush etc. I
have done oral antiobicts (Amoxycillian didn't work now on Ciopro and Klacid and finish tonight).
I cultured this before in nOV AND Cleared up.
Is it serious can anyone tell me about it or have it before.


-------------------
Sunflower 36yrs old
ABPA/Cepacia
Mutations DF508/P67L
 

sunflower

New member
Hi,

I was just told yesrterday that Ihave "stenotrophus pseudomonas". (You can get it from toothbrushes/found around skinks etc).I have been soo good with sterlising my tooth brush etc. I
have done oral antiobicts (Amoxycillian didn't work now on Ciopro and Klacid and finish tonight).
I cultured this before in nOV AND Cleared up.
Is it serious can anyone tell me about it or have it before.


-------------------
Sunflower 36yrs old
ABPA/Cepacia
Mutations DF508/P67L
 

sunflower

New member
Hi,

I was just told yesrterday that Ihave "stenotrophus pseudomonas". (You can get it from toothbrushes/found around skinks etc).I have been soo good with sterlising my tooth brush etc. I
have done oral antiobicts (Amoxycillian didn't work now on Ciopro and Klacid and finish tonight).
I cultured this before in nOV AND Cleared up.
Is it serious can anyone tell me about it or have it before.


-------------------
Sunflower 36yrs old
ABPA/Cepacia
Mutations DF508/P67L
 

letsrockcfem

New member
Hey there..I cultured Stenotrophamonas before..is that the same or something different?
A nice cocktail of IV's cleared that right up and it hasn't returned since.
Rock CF,
Em
 

letsrockcfem

New member
Hey there..I cultured Stenotrophamonas before..is that the same or something different?
A nice cocktail of IV's cleared that right up and it hasn't returned since.
Rock CF,
Em
 

letsrockcfem

New member
Hey there..I cultured Stenotrophamonas before..is that the same or something different?
A nice cocktail of IV's cleared that right up and it hasn't returned since.
Rock CF,
Em
 

sunflower

New member
Hi EM,


Yes that is the same. I did have IV'S in Dec and hoping I won't need them. I just done two oral antibioc, so fingers crossed aND I am feeling ok.
But, if need IV's them I need them. Will keep an eye on it. Mayb I am better off doing another sputum sample this week instead of sitting around getting ill.

Thank you...

---------------
Sunflower 36yrs old
Dx's 3yrs ago approx
ABPA/.B.Cepacia
mutations DF508/P67L
 

sunflower

New member
Hi EM,


Yes that is the same. I did have IV'S in Dec and hoping I won't need them. I just done two oral antibioc, so fingers crossed aND I am feeling ok.
But, if need IV's them I need them. Will keep an eye on it. Mayb I am better off doing another sputum sample this week instead of sitting around getting ill.

Thank you...

---------------
Sunflower 36yrs old
Dx's 3yrs ago approx
ABPA/.B.Cepacia
mutations DF508/P67L
 

sunflower

New member
Hi EM,


Yes that is the same. I did have IV'S in Dec and hoping I won't need them. I just done two oral antibioc, so fingers crossed aND I am feeling ok.
But, if need IV's them I need them. Will keep an eye on it. Mayb I am better off doing another sputum sample this week instead of sitting around getting ill.

Thank you...

---------------
Sunflower 36yrs old
Dx's 3yrs ago approx
ABPA/.B.Cepacia
mutations DF508/P67L
 

JustDucky

New member
Hi Sunflower...Steno is one of the bugs I always seem to culture along with my others. Ever since I have cultured it about a year ago, it has followed me ever since. It seems that the colonies vary, when the docs get aggressive with cepacia, the colonies for that will go down but sometimes the Steno rears its ugly head. It is in the pseudomonas family, which we seem to attract. I have lately started to culture Flavobacterium species, not too common from what my doc said. Also in the pseudo family. Not sure as to how serious it is, I guess with any chronic infection it can do a number. For me, the cepacia is the worst problem followed by the others. I hope that the antibiotics do their job...my doc did say that steno does like to "hide" in parts of the lungs, so if a culture is negative once, it may mean that the part cultured doesn't have enough steno to show up. Same goes with any other bacteria I hear. Hugs to you, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
Hi Sunflower...Steno is one of the bugs I always seem to culture along with my others. Ever since I have cultured it about a year ago, it has followed me ever since. It seems that the colonies vary, when the docs get aggressive with cepacia, the colonies for that will go down but sometimes the Steno rears its ugly head. It is in the pseudomonas family, which we seem to attract. I have lately started to culture Flavobacterium species, not too common from what my doc said. Also in the pseudo family. Not sure as to how serious it is, I guess with any chronic infection it can do a number. For me, the cepacia is the worst problem followed by the others. I hope that the antibiotics do their job...my doc did say that steno does like to "hide" in parts of the lungs, so if a culture is negative once, it may mean that the part cultured doesn't have enough steno to show up. Same goes with any other bacteria I hear. Hugs to you, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
Hi Sunflower...Steno is one of the bugs I always seem to culture along with my others. Ever since I have cultured it about a year ago, it has followed me ever since. It seems that the colonies vary, when the docs get aggressive with cepacia, the colonies for that will go down but sometimes the Steno rears its ugly head. It is in the pseudomonas family, which we seem to attract. I have lately started to culture Flavobacterium species, not too common from what my doc said. Also in the pseudo family. Not sure as to how serious it is, I guess with any chronic infection it can do a number. For me, the cepacia is the worst problem followed by the others. I hope that the antibiotics do their job...my doc did say that steno does like to "hide" in parts of the lungs, so if a culture is negative once, it may mean that the part cultured doesn't have enough steno to show up. Same goes with any other bacteria I hear. Hugs to you, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

letsrockcfem

New member
Good luck with it and just like anything else keep an eye on it...if you start to feel worse then you know you've got to act on it.
Keep doing what you're doing!
Rock CF,
Em
 

letsrockcfem

New member
Good luck with it and just like anything else keep an eye on it...if you start to feel worse then you know you've got to act on it.
Keep doing what you're doing!
Rock CF,
Em
 

letsrockcfem

New member
Good luck with it and just like anything else keep an eye on it...if you start to feel worse then you know you've got to act on it.
Keep doing what you're doing!
Rock CF,
Em
 

sunflower

New member
Thanks guys for your advise. Cepaciagal thank you for the advise on Cepacia/Steno.
My doc did get aggressive with the Cepacia Nov and Dec. And he did feel we never got to the route of Steno. The doc put me on Septrin. But fingers crossed. However I am going to send in a sputum sample on Monday early and see!! I am feeling ok but, bit tired because of the steriods being increased for ABPA.

---------------------
sunflower
36yrs old
Dx's 3half yrs ago
ABPA/ B.CCepacia (recently dx's with C)
mutations DF508/P67L


You never know what health is till you lose it!
 

sunflower

New member
Thanks guys for your advise. Cepaciagal thank you for the advise on Cepacia/Steno.
My doc did get aggressive with the Cepacia Nov and Dec. And he did feel we never got to the route of Steno. The doc put me on Septrin. But fingers crossed. However I am going to send in a sputum sample on Monday early and see!! I am feeling ok but, bit tired because of the steriods being increased for ABPA.

---------------------
sunflower
36yrs old
Dx's 3half yrs ago
ABPA/ B.CCepacia (recently dx's with C)
mutations DF508/P67L


You never know what health is till you lose it!
 

sunflower

New member
Thanks guys for your advise. Cepaciagal thank you for the advise on Cepacia/Steno.
My doc did get aggressive with the Cepacia Nov and Dec. And he did feel we never got to the route of Steno. The doc put me on Septrin. But fingers crossed. However I am going to send in a sputum sample on Monday early and see!! I am feeling ok but, bit tired because of the steriods being increased for ABPA.

---------------------
sunflower
36yrs old
Dx's 3half yrs ago
ABPA/ B.CCepacia (recently dx's with C)
mutations DF508/P67L


You never know what health is till you lose it!
 

ashton2005

New member
Just in the beginning of February Ashton cultured this.. I found out when i had him in the Emergency Room ( they didnt call me from the pulmo office and tell me) but when i took him to the ER for a 105.2 fever They of course asked if he had any throat cultures recently(the nurse did) and i said yes.. Then when the Doctor came in she was like yea he cultured stenotrophomonas I WAS LIKE WHAT??? since the dr office never told us and they think thats why we wouldnt get his cold cleared up wnd his fever down because that was rearing it ugly head.. so he went in for 3 days of IV antibiotics and was a completely different baby after that!!!
 

ashton2005

New member
Just in the beginning of February Ashton cultured this.. I found out when i had him in the Emergency Room ( they didnt call me from the pulmo office and tell me) but when i took him to the ER for a 105.2 fever They of course asked if he had any throat cultures recently(the nurse did) and i said yes.. Then when the Doctor came in she was like yea he cultured stenotrophomonas I WAS LIKE WHAT??? since the dr office never told us and they think thats why we wouldnt get his cold cleared up wnd his fever down because that was rearing it ugly head.. so he went in for 3 days of IV antibiotics and was a completely different baby after that!!!
 
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