Burkholderia Cepacia...

beleache · Dec 13, 2009

Hi Josh,

Good for you asking questions , getting info & taking charge (as best you can) Did you do an advanced search ? There are so many threads about B. Cep. There are also others on the site that have it..

When i was first dxd w/ Mcyo Ab I was devastated .. First thing i did was to talk to other ppl that have it.. That did help me.. I hope you get all the answers/info you need..

Take care & God Bless you. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Dec 13, 2009

Hi Josh,

Good for you asking questions , getting info & taking charge (as best you can) Did you do an advanced search ? There are so many threads about B. Cep. There are also others on the site that have it..

When i was first dxd w/ Mcyo Ab I was devastated .. First thing i did was to talk to other ppl that have it.. That did help me.. I hope you get all the answers/info you need..

Take care & God Bless you. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Dec 13, 2009

Hi Josh,

Good for you asking questions , getting info & taking charge (as best you can) Did you do an advanced search ? There are so many threads about B. Cep. There are also others on the site that have it..

When i was first dxd w/ Mcyo Ab I was devastated .. First thing i did was to talk to other ppl that have it.. That did help me.. I hope you get all the answers/info you need..

Take care & God Bless you. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Dec 13, 2009

Hi Josh,

Good for you asking questions , getting info & taking charge (as best you can) Did you do an advanced search ? There are so many threads about B. Cep. There are also others on the site that have it..

When i was first dxd w/ Mcyo Ab I was devastated .. First thing i did was to talk to other ppl that have it.. That did help me.. I hope you get all the answers/info you need..

Take care & God Bless you. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Dec 13, 2009

Hi Josh,
 
 Good for you asking questions , getting info & taking charge (as best you can) Did you do an advanced search ? There are so many threads about B. Cep. There are also others on the site that have it..
 
 When i was first dxd w/ Mcyo Ab I was devastated .. First thing i did was to talk to other ppl that have it.. That did help me.. I hope you get all the answers/info you need..
 
 Take care & God Bless you. <img src="i/expressions/heart.gif" border="0"> joni

LouLou · Dec 13, 2009

You'll want to find out what genomovar of B. Cepacia Complex you have. Your doctor has probably already sent a sample off to a lab for this information because I believe it's important to know in terms of how to treat. It is also important to know for cross contamination reason. In other words did you catch it from one of his other patients or the environment. If I was a doctor I'd rest a lot easier knowing that a recent b.cepacia diagnosis did not match my other b. cepacia patients. I believe beyond genomovar in the lab they also genetically code it so no two stains are the same unless they were contracted from the same source.

In terms of treatment, the best thing you can do is keep a spreadsheet with all your symptoms and how the different abx combos do at treating it. Abx don't just treat various bacteria but they attack the it in different ways so be very observant to document how they work. This will help your doctor to know what to treat.

I do not have b. cepacia. This is just what I've learned from the site through the years.

LouLou · Dec 13, 2009

You'll want to find out what genomovar of B. Cepacia Complex you have. Your doctor has probably already sent a sample off to a lab for this information because I believe it's important to know in terms of how to treat. It is also important to know for cross contamination reason. In other words did you catch it from one of his other patients or the environment. If I was a doctor I'd rest a lot easier knowing that a recent b.cepacia diagnosis did not match my other b. cepacia patients. I believe beyond genomovar in the lab they also genetically code it so no two stains are the same unless they were contracted from the same source.

In terms of treatment, the best thing you can do is keep a spreadsheet with all your symptoms and how the different abx combos do at treating it. Abx don't just treat various bacteria but they attack the it in different ways so be very observant to document how they work. This will help your doctor to know what to treat.

I do not have b. cepacia. This is just what I've learned from the site through the years.

LouLou · Dec 13, 2009

You'll want to find out what genomovar of B. Cepacia Complex you have. Your doctor has probably already sent a sample off to a lab for this information because I believe it's important to know in terms of how to treat. It is also important to know for cross contamination reason. In other words did you catch it from one of his other patients or the environment. If I was a doctor I'd rest a lot easier knowing that a recent b.cepacia diagnosis did not match my other b. cepacia patients. I believe beyond genomovar in the lab they also genetically code it so no two stains are the same unless they were contracted from the same source.

In terms of treatment, the best thing you can do is keep a spreadsheet with all your symptoms and how the different abx combos do at treating it. Abx don't just treat various bacteria but they attack the it in different ways so be very observant to document how they work. This will help your doctor to know what to treat.

I do not have b. cepacia. This is just what I've learned from the site through the years.

LouLou · Dec 13, 2009

You'll want to find out what genomovar of B. Cepacia Complex you have. Your doctor has probably already sent a sample off to a lab for this information because I believe it's important to know in terms of how to treat. It is also important to know for cross contamination reason. In other words did you catch it from one of his other patients or the environment. If I was a doctor I'd rest a lot easier knowing that a recent b.cepacia diagnosis did not match my other b. cepacia patients. I believe beyond genomovar in the lab they also genetically code it so no two stains are the same unless they were contracted from the same source.

In terms of treatment, the best thing you can do is keep a spreadsheet with all your symptoms and how the different abx combos do at treating it. Abx don't just treat various bacteria but they attack the it in different ways so be very observant to document how they work. This will help your doctor to know what to treat.

I do not have b. cepacia. This is just what I've learned from the site through the years.

LouLou · Dec 13, 2009

You'll want to find out what genomovar of B. Cepacia Complex you have. Your doctor has probably already sent a sample off to a lab for this information because I believe it's important to know in terms of how to treat. It is also important to know for cross contamination reason. In other words did you catch it from one of his other patients or the environment. If I was a doctor I'd rest a lot easier knowing that a recent b.cepacia diagnosis did not match my other b. cepacia patients. I believe beyond genomovar in the lab they also genetically code it so no two stains are the same unless they were contracted from the same source.
 
 In terms of treatment, the best thing you can do is keep a spreadsheet with all your symptoms and how the different abx combos do at treating it. Abx don't just treat various bacteria but they attack the it in different ways so be very observant to document how they work. This will help your doctor to know what to treat.
 
 I do not have b. cepacia. This is just what I've learned from the site through the years.

regina65 · Dec 13, 2009

I have b cepacia complex as well. Genomovars I have are Burkholderia/Ralstonia/Pandoraea and I also have Cenocepacia. From what I have read the cenocepacia is among the worst. The three levels of b cepacia are

1. dormant in some cf patients
2. causes deteriation over time
3. cepacia syndrome which causes rapid deteriation and death.

This isn't exactly how it was put on the internet but this is how i understood it. If this is wrong please tell me. I am not up on the medical terms like some . I think my sister had the Cepacia syndrome b/c she found out she had it in Jan of 2008 and died in Nov. 2008 and was on Meropenum and Ceftaz about 6 times in that time period. But she was also pregnant. Joshua you wont have that problem. But I think it did have something to do with her sudden death. Besides the fact that she was very under weight. I think it is according to the patient as to how their lungs handle the cepacia. My cf doctor said that my lungs handles the cepacia pretty well considering i have 2 different strands. But I also have not caught anything as far as flu or cold since Dec. 2008.

regina65 · Dec 13, 2009

I have b cepacia complex as well. Genomovars I have are Burkholderia/Ralstonia/Pandoraea and I also have Cenocepacia. From what I have read the cenocepacia is among the worst. The three levels of b cepacia are

1. dormant in some cf patients
2. causes deteriation over time
3. cepacia syndrome which causes rapid deteriation and death.

This isn't exactly how it was put on the internet but this is how i understood it. If this is wrong please tell me. I am not up on the medical terms like some . I think my sister had the Cepacia syndrome b/c she found out she had it in Jan of 2008 and died in Nov. 2008 and was on Meropenum and Ceftaz about 6 times in that time period. But she was also pregnant. Joshua you wont have that problem. But I think it did have something to do with her sudden death. Besides the fact that she was very under weight. I think it is according to the patient as to how their lungs handle the cepacia. My cf doctor said that my lungs handles the cepacia pretty well considering i have 2 different strands. But I also have not caught anything as far as flu or cold since Dec. 2008.

regina65 · Dec 13, 2009

I have b cepacia complex as well. Genomovars I have are Burkholderia/Ralstonia/Pandoraea and I also have Cenocepacia. From what I have read the cenocepacia is among the worst. The three levels of b cepacia are

1. dormant in some cf patients
2. causes deteriation over time
3. cepacia syndrome which causes rapid deteriation and death.

This isn't exactly how it was put on the internet but this is how i understood it. If this is wrong please tell me. I am not up on the medical terms like some . I think my sister had the Cepacia syndrome b/c she found out she had it in Jan of 2008 and died in Nov. 2008 and was on Meropenum and Ceftaz about 6 times in that time period. But she was also pregnant. Joshua you wont have that problem. But I think it did have something to do with her sudden death. Besides the fact that she was very under weight. I think it is according to the patient as to how their lungs handle the cepacia. My cf doctor said that my lungs handles the cepacia pretty well considering i have 2 different strands. But I also have not caught anything as far as flu or cold since Dec. 2008.

regina65 · Dec 13, 2009

I have b cepacia complex as well. Genomovars I have are Burkholderia/Ralstonia/Pandoraea and I also have Cenocepacia. From what I have read the cenocepacia is among the worst. The three levels of b cepacia are

1. dormant in some cf patients
2. causes deteriation over time
3. cepacia syndrome which causes rapid deteriation and death.

This isn't exactly how it was put on the internet but this is how i understood it. If this is wrong please tell me. I am not up on the medical terms like some . I think my sister had the Cepacia syndrome b/c she found out she had it in Jan of 2008 and died in Nov. 2008 and was on Meropenum and Ceftaz about 6 times in that time period. But she was also pregnant. Joshua you wont have that problem. But I think it did have something to do with her sudden death. Besides the fact that she was very under weight. I think it is according to the patient as to how their lungs handle the cepacia. My cf doctor said that my lungs handles the cepacia pretty well considering i have 2 different strands. But I also have not caught anything as far as flu or cold since Dec. 2008.

regina65 · Dec 13, 2009

I have b cepacia complex as well. Genomovars I have are Burkholderia/Ralstonia/Pandoraea and I also have Cenocepacia. From what I have read the cenocepacia is among the worst. The three levels of b cepacia are
 
 1. dormant in some cf patients
 2. causes deteriation over time
 3. cepacia syndrome which causes rapid deteriation and death.
 
 This isn't exactly how it was put on the internet but this is how i understood it. If this is wrong please tell me. I am not up on the medical terms like some . I think my sister had the Cepacia syndrome b/c she found out she had it in Jan of 2008 and died in Nov. 2008 and was on Meropenum and Ceftaz about 6 times in that time period. But she was also pregnant. Joshua you wont have that problem. But I think it did have something to do with her sudden death. Besides the fact that she was very under weight. I think it is according to the patient as to how their lungs handle the cepacia. My cf doctor said that my lungs handles the cepacia pretty well considering i have 2 different strands. But I also have not caught anything as far as flu or cold since Dec. 2008.

regina65 · Dec 13, 2009