Burkholderia Cepacia...

Jbenjamin152 · Dec 13, 2009

I have heard there are 3 types of this diagnosis...how do I find out what the 3 are and who knows anything about the progression of the 3 diffrent strains and how do I find out which one I have....When and where is the information so I can learn and research it for myself the last time I made a publication on this subject the answers were mostly to tell me that I am ok and to not worry too much about this disease that plenty of people have it and are living long productive lives...ok so I realize that I can live with it. I want to know the productiveness and then to see where I'm going and where this is going. So if u have information I REALLY WANT TO LEARN. I was diagnosed with M.A.I. 6 YEARS AGO and I beat it in 4 year...I took meds that made me puke every day, made me hate life...beat the hardest thing in my life and now I have 2 to replace the one...should I except that even If I beat these that there's more...I also have aspergilis and am not willing to try to beat it because when I did take voryconosil it nearly KILLED ME...then again the doc didn't realize that if your on mycobutin and Rifapune...I think I spelled it right...it will kill you...as I run out of medacines that work how do you realize what to fight and what to leave like a sleeping dog...let it lye still and it will just get barried under worse bacteria's...LET ME KNOW YOUR FELLINGS ON SUCH A MATTER AND SORRY IF I SOUND DEPRESSED...Still accepting such a hand is hard.

Joshua A. Benjamin

Jbenjamin152 · Dec 13, 2009

I have heard there are 3 types of this diagnosis...how do I find out what the 3 are and who knows anything about the progression of the 3 diffrent strains and how do I find out which one I have....When and where is the information so I can learn and research it for myself the last time I made a publication on this subject the answers were mostly to tell me that I am ok and to not worry too much about this disease that plenty of people have it and are living long productive lives...ok so I realize that I can live with it. I want to know the productiveness and then to see where I'm going and where this is going. So if u have information I REALLY WANT TO LEARN. I was diagnosed with M.A.I. 6 YEARS AGO and I beat it in 4 year...I took meds that made me puke every day, made me hate life...beat the hardest thing in my life and now I have 2 to replace the one...should I except that even If I beat these that there's more...I also have aspergilis and am not willing to try to beat it because when I did take voryconosil it nearly KILLED ME...then again the doc didn't realize that if your on mycobutin and Rifapune...I think I spelled it right...it will kill you...as I run out of medacines that work how do you realize what to fight and what to leave like a sleeping dog...let it lye still and it will just get barried under worse bacteria's...LET ME KNOW YOUR FELLINGS ON SUCH A MATTER AND SORRY IF I SOUND DEPRESSED...Still accepting such a hand is hard.

Joshua A. Benjamin

Jbenjamin152 · Dec 13, 2009

I have heard there are 3 types of this diagnosis...how do I find out what the 3 are and who knows anything about the progression of the 3 diffrent strains and how do I find out which one I have....When and where is the information so I can learn and research it for myself the last time I made a publication on this subject the answers were mostly to tell me that I am ok and to not worry too much about this disease that plenty of people have it and are living long productive lives...ok so I realize that I can live with it. I want to know the productiveness and then to see where I'm going and where this is going. So if u have information I REALLY WANT TO LEARN. I was diagnosed with M.A.I. 6 YEARS AGO and I beat it in 4 year...I took meds that made me puke every day, made me hate life...beat the hardest thing in my life and now I have 2 to replace the one...should I except that even If I beat these that there's more...I also have aspergilis and am not willing to try to beat it because when I did take voryconosil it nearly KILLED ME...then again the doc didn't realize that if your on mycobutin and Rifapune...I think I spelled it right...it will kill you...as I run out of medacines that work how do you realize what to fight and what to leave like a sleeping dog...let it lye still and it will just get barried under worse bacteria's...LET ME KNOW YOUR FELLINGS ON SUCH A MATTER AND SORRY IF I SOUND DEPRESSED...Still accepting such a hand is hard.

Joshua A. Benjamin

Jbenjamin152 · Dec 13, 2009

I have heard there are 3 types of this diagnosis...how do I find out what the 3 are and who knows anything about the progression of the 3 diffrent strains and how do I find out which one I have....When and where is the information so I can learn and research it for myself the last time I made a publication on this subject the answers were mostly to tell me that I am ok and to not worry too much about this disease that plenty of people have it and are living long productive lives...ok so I realize that I can live with it. I want to know the productiveness and then to see where I'm going and where this is going. So if u have information I REALLY WANT TO LEARN. I was diagnosed with M.A.I. 6 YEARS AGO and I beat it in 4 year...I took meds that made me puke every day, made me hate life...beat the hardest thing in my life and now I have 2 to replace the one...should I except that even If I beat these that there's more...I also have aspergilis and am not willing to try to beat it because when I did take voryconosil it nearly KILLED ME...then again the doc didn't realize that if your on mycobutin and Rifapune...I think I spelled it right...it will kill you...as I run out of medacines that work how do you realize what to fight and what to leave like a sleeping dog...let it lye still and it will just get barried under worse bacteria's...LET ME KNOW YOUR FELLINGS ON SUCH A MATTER AND SORRY IF I SOUND DEPRESSED...Still accepting such a hand is hard.

Joshua A. Benjamin

Jbenjamin152 · Dec 13, 2009

I have heard there are 3 types of this diagnosis...how do I find out what the 3 are and who knows anything about the progression of the 3 diffrent strains and how do I find out which one I have....When and where is the information so I can learn and research it for myself the last time I made a publication on this subject the answers were mostly to tell me that I am ok and to not worry too much about this disease that plenty of people have it and are living long productive lives...ok so I realize that I can live with it. I want to know the productiveness and then to see where I'm going and where this is going. So if u have information I REALLY WANT TO LEARN. I was diagnosed with M.A.I. 6 YEARS AGO and I beat it in 4 year...I took meds that made me puke every day, made me hate life...beat the hardest thing in my life and now I have 2 to replace the one...should I except that even If I beat these that there's more...I also have aspergilis and am not willing to try to beat it because when I did take voryconosil it nearly KILLED ME...then again the doc didn't realize that if your on mycobutin and Rifapune...I think I spelled it right...it will kill you...as I run out of medacines that work how do you realize what to fight and what to leave like a sleeping dog...let it lye still and it will just get barried under worse bacteria's...LET ME KNOW YOUR FELLINGS ON SUCH A MATTER AND SORRY IF I SOUND DEPRESSED...Still accepting such a hand is hard.
 
 Joshua A. Benjamin

theLostMiler · Dec 13, 2009

I just point blank asked my doctor which strain it was and how bad it was for me. Asked if it was the "really bad one" they said, "On scale of 1-10, 10 being the "bad one"" I was a little above medium... so 6 or 7, that was when I first got it.

Then I asked my tx doctor about it and he said I had the multivarians, and for me, it acts like PA and shouldnt be a problem for tx centers as much as the non tb.

Also, my doctors tend to decided which "bug" to treat, and along with pfts, results of iv tune up, how I feel etc..
for me, the b. cep and my PA are more of the problem, they cause me fevers while my non tb, seems to be just chilling in there. We deduced this b/c over summer while treating b. cep/PA i wouldnt have fevers while on ivs, next day after stopping would get fevers... so we treated the non tb and I still felt like crap and still got fevers (though not as much)so my treatment has been geared for my b. cep and PA.

i bawled the day, like the entire day, then the next day, called a close cf friend and bawled some more when my doctor told me (over the phone). thought I was gonna die. my attitude has changed with more information. I feel like I can maintain it, I do not think i will ever get rid of it, but if I can beat it down when I need to thats, what Ill focus on.. and as we all know, mind is a powerful healer too right!

theLostMiler · Dec 13, 2009

I just point blank asked my doctor which strain it was and how bad it was for me. Asked if it was the "really bad one" they said, "On scale of 1-10, 10 being the "bad one"" I was a little above medium... so 6 or 7, that was when I first got it.

Then I asked my tx doctor about it and he said I had the multivarians, and for me, it acts like PA and shouldnt be a problem for tx centers as much as the non tb.

Also, my doctors tend to decided which "bug" to treat, and along with pfts, results of iv tune up, how I feel etc..
for me, the b. cep and my PA are more of the problem, they cause me fevers while my non tb, seems to be just chilling in there. We deduced this b/c over summer while treating b. cep/PA i wouldnt have fevers while on ivs, next day after stopping would get fevers... so we treated the non tb and I still felt like crap and still got fevers (though not as much)so my treatment has been geared for my b. cep and PA.

i bawled the day, like the entire day, then the next day, called a close cf friend and bawled some more when my doctor told me (over the phone). thought I was gonna die. my attitude has changed with more information. I feel like I can maintain it, I do not think i will ever get rid of it, but if I can beat it down when I need to thats, what Ill focus on.. and as we all know, mind is a powerful healer too right!

theLostMiler · Dec 13, 2009

I just point blank asked my doctor which strain it was and how bad it was for me. Asked if it was the "really bad one" they said, "On scale of 1-10, 10 being the "bad one"" I was a little above medium... so 6 or 7, that was when I first got it.

Then I asked my tx doctor about it and he said I had the multivarians, and for me, it acts like PA and shouldnt be a problem for tx centers as much as the non tb.

Also, my doctors tend to decided which "bug" to treat, and along with pfts, results of iv tune up, how I feel etc..
for me, the b. cep and my PA are more of the problem, they cause me fevers while my non tb, seems to be just chilling in there. We deduced this b/c over summer while treating b. cep/PA i wouldnt have fevers while on ivs, next day after stopping would get fevers... so we treated the non tb and I still felt like crap and still got fevers (though not as much)so my treatment has been geared for my b. cep and PA.

i bawled the day, like the entire day, then the next day, called a close cf friend and bawled some more when my doctor told me (over the phone). thought I was gonna die. my attitude has changed with more information. I feel like I can maintain it, I do not think i will ever get rid of it, but if I can beat it down when I need to thats, what Ill focus on.. and as we all know, mind is a powerful healer too right!

theLostMiler · Dec 13, 2009

I just point blank asked my doctor which strain it was and how bad it was for me. Asked if it was the "really bad one" they said, "On scale of 1-10, 10 being the "bad one"" I was a little above medium... so 6 or 7, that was when I first got it.

Then I asked my tx doctor about it and he said I had the multivarians, and for me, it acts like PA and shouldnt be a problem for tx centers as much as the non tb.

Also, my doctors tend to decided which "bug" to treat, and along with pfts, results of iv tune up, how I feel etc..
for me, the b. cep and my PA are more of the problem, they cause me fevers while my non tb, seems to be just chilling in there. We deduced this b/c over summer while treating b. cep/PA i wouldnt have fevers while on ivs, next day after stopping would get fevers... so we treated the non tb and I still felt like crap and still got fevers (though not as much)so my treatment has been geared for my b. cep and PA.

i bawled the day, like the entire day, then the next day, called a close cf friend and bawled some more when my doctor told me (over the phone). thought I was gonna die. my attitude has changed with more information. I feel like I can maintain it, I do not think i will ever get rid of it, but if I can beat it down when I need to thats, what Ill focus on.. and as we all know, mind is a powerful healer too right!

theLostMiler · Dec 13, 2009

I just point blank asked my doctor which strain it was and how bad it was for me. Asked if it was the "really bad one" they said, "On scale of 1-10, 10 being the "bad one"" I was a little above medium... so 6 or 7, that was when I first got it.
 
 Then I asked my tx doctor about it and he said I had the multivarians, and for me, it acts like PA and shouldnt be a problem for tx centers as much as the non tb.
 
 Also, my doctors tend to decided which "bug" to treat, and along with pfts, results of iv tune up, how I feel etc..
 for me, the b. cep and my PA are more of the problem, they cause me fevers while my non tb, seems to be just chilling in there. We deduced this b/c over summer while treating b. cep/PA i wouldnt have fevers while on ivs, next day after stopping would get fevers... so we treated the non tb and I still felt like crap and still got fevers (though not as much)so my treatment has been geared for my b. cep and PA.
 
 i bawled the day, like the entire day, then the next day, called a close cf friend and bawled some more when my doctor told me (over the phone). thought I was gonna die. my attitude has changed with more information. I feel like I can maintain it, I do not think i will ever get rid of it, but if I can beat it down when I need to thats, what Ill focus on.. and as we all know, mind is a powerful healer too right!

dasjsmum · Dec 13, 2009