Burkholderia
- Thread starter john1228
- Start date
mamaScarlett
Active member
I have cultured b. cepacia for 18 years. To date, it has not affected my cf. it can vary patient to patient, and depends on the strain you culture. There is much misinformation regarding b. cepacia in the cf community. Best to get all the facts from your cf care team, and go from there.
Yes, Burkholderia is a cousin of the Pseudomonas group. From what I understand, there are about 6 or 7 different strains of Burkholderia (genomes or types), some supposedly more sinister than others. I have cultured B. cep and B. stabilis off and on ever since my CF diagnosis (about 7 years now). Some people do not do well once they get this bug and they decline quickly (cepacia syndrome) yet there are people out there who simply culture it without it affecting them too much. It does tend to be a resistant bug, I have had pan resistant cepacia (where it is sensitive to nothing) which scared the hell out of me...I was on 2-3 IV's when I flared up. These days, I would say that the cepacia is stable..other bugs have been more of a problem than that one. Go figure.
As far as your son/daughter, the center should send off the sputum sample to get it genotyped to see exactly what strain of burkholderia you are dealing with. Types II and III will take you off of the transplant list for most centers (there are a few that do high risk tx's from cepacia).
I know that hearing that your child has cepacia is unnerving...perhaps you could go in with your son/daughter during next clinic visit if possible. That way any questions you may have will be answered.
I wish I had more to say. Hugs
Jenn 41 wCF
As far as your son/daughter, the center should send off the sputum sample to get it genotyped to see exactly what strain of burkholderia you are dealing with. Types II and III will take you off of the transplant list for most centers (there are a few that do high risk tx's from cepacia).
I know that hearing that your child has cepacia is unnerving...perhaps you could go in with your son/daughter during next clinic visit if possible. That way any questions you may have will be answered.
I wish I had more to say. Hugs
Jenn 41 wCF
Hi Im a parent of a cfer(25yearsold)he has recently been told of this strain called burkholderia has anyone heard of it and if so could you please tell me what you know about it,please and thank you........
Very Worried Parent of a cfer
There are 17 Genomovars (genomic species) of burkholderia and the identification is difficult/time_consuming.
These two here cause 85% of burkholderia infections:
Burkholderia multivorans (Genomovar II) – Initial infection
Burkholderia cenocepacia (Genomovar III) – Patient to patient
Other genomovars detrimental to health are:
–B. cepacia
–B. stabilis
–B. dolosa (Genomovar VI) (accelerated lung decline)
I guess this last one is the one you don't want to get...
Is this the first time he cultured it? I cultured it once in September of last year & haven't cultured it since(and I've had two sputum cultures since). My doctor thinks the lab may have messed up since I haven't continued to culture it. I would do as Jenn said & find out the species, but I would also ask your doctor to do another sputum culture in the near future to see if it is actually there. The lab could have contaminated it, you never know.
Some doctors treat it, some doctors just wait to see what happens. But as others have said it either just hangs out in the lungs and doesn't really affect you or it causes rapid lung decline. If you haven't noticed anything different with his lungs, yet, that's probably a good sign.
Some doctors treat it, some doctors just wait to see what happens. But as others have said it either just hangs out in the lungs and doesn't really affect you or it causes rapid lung decline. If you haven't noticed anything different with his lungs, yet, that's probably a good sign.
Thanks guys for the replys tho not sure of the strain he has cultured will find that one out...right now we have a situation at the hospital he was admitted on 1-29-2013 for a picc line which he has had several over the past few years never had a problem now tho they have given him for some reason not known yet a high dose of the iv meds and the vanco has started to damage his kidneys they do not know if they caught it in time to have stopped real damage yet we wont know for a couple days.Dont know quite how to handle everything thats been handed to us the last few days.Hes scared to death and all the family is scared to death and being a mom my heart is hurting for my son knowing there is nothing i can do for him but be there with arms wide open..........Prayers are appreciated
Aboveallislove
Super Moderator
Praying . . . praying . . . and praying. Please keep us posted.
Hugs and prayers,
Love
Hugs and prayers,
Love