I was just diagnosed with B. Cepacia! What is B. Cepacia???

S

Sweetness81

New member
Ok, everyone! I know what strain I have. I found out today.

I have B. Cepacia Complex with Multivorans!

I've had it for 10 years. My specialist says that it is pretty strong, but can vary by the particular infection that I get. She says that it is an unusual bacteria for a cfer to get. She also says that it is extremely hard to kill. It is resistant to most antibiotics including IV ones too!

She really thinks that this trial I am getting ready to enter a trial for it in about a month or so. She thinks that this will definitely help me considerably. I just wanted to post this since I now know what my strain is. I still welcome any knowledge and/or advice. I'm hoping that this med. really works! I really need it to. Thank you for the continued support!

Mary w/ B. multivorans cf.
 
S

Sweetness81

New member
Ok, everyone! I know what strain I have. I found out today.

I have B. Cepacia Complex with Multivorans!

I've had it for 10 years. My specialist says that it is pretty strong, but can vary by the particular infection that I get. She says that it is an unusual bacteria for a cfer to get. She also says that it is extremely hard to kill. It is resistant to most antibiotics including IV ones too!

She really thinks that this trial I am getting ready to enter a trial for it in about a month or so. She thinks that this will definitely help me considerably. I just wanted to post this since I now know what my strain is. I still welcome any knowledge and/or advice. I'm hoping that this med. really works! I really need it to. Thank you for the continued support!

Mary w/ B. multivorans cf.
 
S

Sweetness81

New member
Ok, everyone! I know what strain I have. I found out today.

I have B. Cepacia Complex with Multivorans!

I've had it for 10 years. My specialist says that it is pretty strong, but can vary by the particular infection that I get. She says that it is an unusual bacteria for a cfer to get. She also says that it is extremely hard to kill. It is resistant to most antibiotics including IV ones too!

She really thinks that this trial I am getting ready to enter a trial for it in about a month or so. She thinks that this will definitely help me considerably. I just wanted to post this since I now know what my strain is. I still welcome any knowledge and/or advice. I'm hoping that this med. really works! I really need it to. Thank you for the continued support!

Mary w/ B. multivorans cf.
 
S

Sweetness81

New member
Ok, everyone! I know what strain I have. I found out today.

I have B. Cepacia Complex with Multivorans!

I've had it for 10 years. My specialist says that it is pretty strong, but can vary by the particular infection that I get. She says that it is an unusual bacteria for a cfer to get. She also says that it is extremely hard to kill. It is resistant to most antibiotics including IV ones too!

She really thinks that this trial I am getting ready to enter a trial for it in about a month or so. She thinks that this will definitely help me considerably. I just wanted to post this since I now know what my strain is. I still welcome any knowledge and/or advice. I'm hoping that this med. really works! I really need it to. Thank you for the continued support!

Mary w/ B. multivorans cf.
 
S

Sweetness81

New member
Ok, everyone! I know what strain I have. I found out today.
<br />
<br />I have B. Cepacia Complex with Multivorans!
<br />
<br />I've had it for 10 years. My specialist says that it is pretty strong, but can vary by the particular infection that I get. She says that it is an unusual bacteria for a cfer to get. She also says that it is extremely hard to kill. It is resistant to most antibiotics including IV ones too!
<br />
<br />She really thinks that this trial I am getting ready to enter a trial for it in about a month or so. She thinks that this will definitely help me considerably. I just wanted to post this since I now know what my strain is. I still welcome any knowledge and/or advice. I'm hoping that this med. really works! I really need it to. Thank you for the continued support!
<br />
<br />Mary w/ B. multivorans cf.
 
K

KrazyKat

New member
Sorry Sweetness but your doctor sounds like a giant douche bag!!

There is absolutely no correlation between Staph and Cepacia, Cepacia used to be one of the pseudomonas family, but they found nine different genomovars, so typed it separately as the Cepacia Complex. You don't have cepacia complex AND multivorans, you have Cepacia Multivorans, that's it.

You've had it for ten years and have only just found out? OMG!! Do you call your doctor 'lightning' for his/her obvious speed? LOLz

It is NOT even remotely unusual for CFers to get cepacia, in fact the vast majority of people who get cepacia ARE CFers and last but not least, you won't know if this inhaled antibiotic will help you or not until you try it. It will depend on what antibiotics your particular strain of Multivorans is sensitive too and how damaged your lungs are already, so for your doc to say 'this will definitely help you heaps' is extremely stupid of him/her, it may not help you at all.

Sheesh, where are you based and is your doctor a CF specialist? What is the inhaled drug he/she is starting you on?

I would be seriously concerned about the standard of care you are receiving if I were you, you are now culturing one of the more serious bugs we can get and need a doctor who knows what the heck they are talking about, which yours clearly doesn't.
 
K

KrazyKat

New member
Sorry Sweetness but your doctor sounds like a giant douche bag!!

There is absolutely no correlation between Staph and Cepacia, Cepacia used to be one of the pseudomonas family, but they found nine different genomovars, so typed it separately as the Cepacia Complex. You don't have cepacia complex AND multivorans, you have Cepacia Multivorans, that's it.

You've had it for ten years and have only just found out? OMG!! Do you call your doctor 'lightning' for his/her obvious speed? LOLz

It is NOT even remotely unusual for CFers to get cepacia, in fact the vast majority of people who get cepacia ARE CFers and last but not least, you won't know if this inhaled antibiotic will help you or not until you try it. It will depend on what antibiotics your particular strain of Multivorans is sensitive too and how damaged your lungs are already, so for your doc to say 'this will definitely help you heaps' is extremely stupid of him/her, it may not help you at all.

Sheesh, where are you based and is your doctor a CF specialist? What is the inhaled drug he/she is starting you on?

I would be seriously concerned about the standard of care you are receiving if I were you, you are now culturing one of the more serious bugs we can get and need a doctor who knows what the heck they are talking about, which yours clearly doesn't.
 
K

KrazyKat

New member
Sorry Sweetness but your doctor sounds like a giant douche bag!!

There is absolutely no correlation between Staph and Cepacia, Cepacia used to be one of the pseudomonas family, but they found nine different genomovars, so typed it separately as the Cepacia Complex. You don't have cepacia complex AND multivorans, you have Cepacia Multivorans, that's it.

You've had it for ten years and have only just found out? OMG!! Do you call your doctor 'lightning' for his/her obvious speed? LOLz

It is NOT even remotely unusual for CFers to get cepacia, in fact the vast majority of people who get cepacia ARE CFers and last but not least, you won't know if this inhaled antibiotic will help you or not until you try it. It will depend on what antibiotics your particular strain of Multivorans is sensitive too and how damaged your lungs are already, so for your doc to say 'this will definitely help you heaps' is extremely stupid of him/her, it may not help you at all.

Sheesh, where are you based and is your doctor a CF specialist? What is the inhaled drug he/she is starting you on?

I would be seriously concerned about the standard of care you are receiving if I were you, you are now culturing one of the more serious bugs we can get and need a doctor who knows what the heck they are talking about, which yours clearly doesn't.
 
K

KrazyKat

New member
Sorry Sweetness but your doctor sounds like a giant douche bag!!

There is absolutely no correlation between Staph and Cepacia, Cepacia used to be one of the pseudomonas family, but they found nine different genomovars, so typed it separately as the Cepacia Complex. You don't have cepacia complex AND multivorans, you have Cepacia Multivorans, that's it.

You've had it for ten years and have only just found out? OMG!! Do you call your doctor 'lightning' for his/her obvious speed? LOLz

It is NOT even remotely unusual for CFers to get cepacia, in fact the vast majority of people who get cepacia ARE CFers and last but not least, you won't know if this inhaled antibiotic will help you or not until you try it. It will depend on what antibiotics your particular strain of Multivorans is sensitive too and how damaged your lungs are already, so for your doc to say 'this will definitely help you heaps' is extremely stupid of him/her, it may not help you at all.

Sheesh, where are you based and is your doctor a CF specialist? What is the inhaled drug he/she is starting you on?

I would be seriously concerned about the standard of care you are receiving if I were you, you are now culturing one of the more serious bugs we can get and need a doctor who knows what the heck they are talking about, which yours clearly doesn't.
 
K

KrazyKat

New member
Sorry Sweetness but your doctor sounds like a giant douche bag!!
<br />
<br />There is absolutely no correlation between Staph and Cepacia, Cepacia used to be one of the pseudomonas family, but they found nine different genomovars, so typed it separately as the Cepacia Complex. You don't have cepacia complex AND multivorans, you have Cepacia Multivorans, that's it.
<br />
<br />You've had it for ten years and have only just found out? OMG!! Do you call your doctor 'lightning' for his/her obvious speed? LOLz
<br />
<br />It is NOT even remotely unusual for CFers to get cepacia, in fact the vast majority of people who get cepacia ARE CFers and last but not least, you won't know if this inhaled antibiotic will help you or not until you try it. It will depend on what antibiotics your particular strain of Multivorans is sensitive too and how damaged your lungs are already, so for your doc to say 'this will definitely help you heaps' is extremely stupid of him/her, it may not help you at all.
<br />
<br />Sheesh, where are you based and is your doctor a CF specialist? What is the inhaled drug he/she is starting you on?
<br />
<br />I would be seriously concerned about the standard of care you are receiving if I were you, you are now culturing one of the more serious bugs we can get and need a doctor who knows what the heck they are talking about, which yours clearly doesn't.
 
T

theLostMiler

New member
When I first read the update I was confused, b/c I also thought "how can it be possible to have complex with multivorians?" but I didnt reply b/c I thought I had it mixed up and clearly could be missing information b/c I am obviously not a doctor or biologist. I also thought maybe you understood the information wrong (b/c I do that allll the time haha seriously!)
I also wondered how they would know you had it 10 years but not tell you?

Although if you have had it 10 years it seems that it hasnt affected you badly or hardly so that is something to be happy about in my opinion.

Good Luck and keep us updated on clearing up some of the questions.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
When I first read the update I was confused, b/c I also thought "how can it be possible to have complex with multivorians?" but I didnt reply b/c I thought I had it mixed up and clearly could be missing information b/c I am obviously not a doctor or biologist. I also thought maybe you understood the information wrong (b/c I do that allll the time haha seriously!)
I also wondered how they would know you had it 10 years but not tell you?

Although if you have had it 10 years it seems that it hasnt affected you badly or hardly so that is something to be happy about in my opinion.

Good Luck and keep us updated on clearing up some of the questions.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
When I first read the update I was confused, b/c I also thought "how can it be possible to have complex with multivorians?" but I didnt reply b/c I thought I had it mixed up and clearly could be missing information b/c I am obviously not a doctor or biologist. I also thought maybe you understood the information wrong (b/c I do that allll the time haha seriously!)
I also wondered how they would know you had it 10 years but not tell you?

Although if you have had it 10 years it seems that it hasnt affected you badly or hardly so that is something to be happy about in my opinion.

Good Luck and keep us updated on clearing up some of the questions.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
When I first read the update I was confused, b/c I also thought "how can it be possible to have complex with multivorians?" but I didnt reply b/c I thought I had it mixed up and clearly could be missing information b/c I am obviously not a doctor or biologist. I also thought maybe you understood the information wrong (b/c I do that allll the time haha seriously!)
I also wondered how they would know you had it 10 years but not tell you?

Although if you have had it 10 years it seems that it hasnt affected you badly or hardly so that is something to be happy about in my opinion.

Good Luck and keep us updated on clearing up some of the questions.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
When I first read the update I was confused, b/c I also thought "how can it be possible to have complex with multivorians?" but I didnt reply b/c I thought I had it mixed up and clearly could be missing information b/c I am obviously not a doctor or biologist. I also thought maybe you understood the information wrong (b/c I do that allll the time haha seriously!)
<br />I also wondered how they would know you had it 10 years but not tell you?
<br />
<br />Although if you have had it 10 years it seems that it hasnt affected you badly or hardly so that is something to be happy about in my opinion.
<br />
<br />Good Luck and keep us updated on clearing up some of the questions.
<br />
<br /><img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Mary,

I agree that maybe there is something wrong with the care you are getting from your doctor if they are just now, after 10 years, explaining to you about the B. Cepacia that you have been culturing <img src="i/expressions/face-icon-small-sad.gif" border="0"> Burkholderia Cepacia is not unusual for a CF patient to culture, and can be passed along to others with CF fairly easily. At our CF clinic, the B. Cepacia patients are seen on different days of the week than the others with out it.

My 11 year old daughter cultures Burkholderia Multivorans and has for about a year and a half. Amazingly my 10 year old has not cultured it yet...but of course, I treat her as if she does have it and do not allow her around others with CF.

My 19 year old nephew also cultures it, and has for about 9 years. His girlfriend, who also has CF, cultures it too. And someone in my church cultured a different strain of Burkholderia (he also had CF).

So, it really is not unusual.

I hope the new meds help you! We have tried many different things, and so far no luck<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
Mary,

I agree that maybe there is something wrong with the care you are getting from your doctor if they are just now, after 10 years, explaining to you about the B. Cepacia that you have been culturing <img src="i/expressions/face-icon-small-sad.gif" border="0"> Burkholderia Cepacia is not unusual for a CF patient to culture, and can be passed along to others with CF fairly easily. At our CF clinic, the B. Cepacia patients are seen on different days of the week than the others with out it.

My 11 year old daughter cultures Burkholderia Multivorans and has for about a year and a half. Amazingly my 10 year old has not cultured it yet...but of course, I treat her as if she does have it and do not allow her around others with CF.

My 19 year old nephew also cultures it, and has for about 9 years. His girlfriend, who also has CF, cultures it too. And someone in my church cultured a different strain of Burkholderia (he also had CF).

So, it really is not unusual.

I hope the new meds help you! We have tried many different things, and so far no luck<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
Mary,

I agree that maybe there is something wrong with the care you are getting from your doctor if they are just now, after 10 years, explaining to you about the B. Cepacia that you have been culturing <img src="i/expressions/face-icon-small-sad.gif" border="0"> Burkholderia Cepacia is not unusual for a CF patient to culture, and can be passed along to others with CF fairly easily. At our CF clinic, the B. Cepacia patients are seen on different days of the week than the others with out it.

My 11 year old daughter cultures Burkholderia Multivorans and has for about a year and a half. Amazingly my 10 year old has not cultured it yet...but of course, I treat her as if she does have it and do not allow her around others with CF.

My 19 year old nephew also cultures it, and has for about 9 years. His girlfriend, who also has CF, cultures it too. And someone in my church cultured a different strain of Burkholderia (he also had CF).

So, it really is not unusual.

I hope the new meds help you! We have tried many different things, and so far no luck<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
Mary,

I agree that maybe there is something wrong with the care you are getting from your doctor if they are just now, after 10 years, explaining to you about the B. Cepacia that you have been culturing <img src="i/expressions/face-icon-small-sad.gif" border="0"> Burkholderia Cepacia is not unusual for a CF patient to culture, and can be passed along to others with CF fairly easily. At our CF clinic, the B. Cepacia patients are seen on different days of the week than the others with out it.

My 11 year old daughter cultures Burkholderia Multivorans and has for about a year and a half. Amazingly my 10 year old has not cultured it yet...but of course, I treat her as if she does have it and do not allow her around others with CF.

My 19 year old nephew also cultures it, and has for about 9 years. His girlfriend, who also has CF, cultures it too. And someone in my church cultured a different strain of Burkholderia (he also had CF).

So, it really is not unusual.

I hope the new meds help you! We have tried many different things, and so far no luck<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
Mary,
<br />
<br />I agree that maybe there is something wrong with the care you are getting from your doctor if they are just now, after 10 years, explaining to you about the B. Cepacia that you have been culturing <img src="i/expressions/face-icon-small-sad.gif" border="0"> Burkholderia Cepacia is not unusual for a CF patient to culture, and can be passed along to others with CF fairly easily. At our CF clinic, the B. Cepacia patients are seen on different days of the week than the others with out it.
<br />
<br />My 11 year old daughter cultures Burkholderia Multivorans and has for about a year and a half. Amazingly my 10 year old has not cultured it yet...but of course, I treat her as if she does have it and do not allow her around others with CF.
<br />
<br />My 19 year old nephew also cultures it, and has for about 9 years. His girlfriend, who also has CF, cultures it too. And someone in my church cultured a different strain of Burkholderia (he also had CF).
<br />
<br />So, it really is not unusual.
<br />
<br />I hope the new meds help you! We have tried many different things, and so far no luck<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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