mycobacterium abscessus

E

ej0820

New member
hey all,

so I'm in the hospital with fevers above 101*F (38.9*C). they are most likely caused by mycobacterium abscessus and mycobacterium avium. we don't know it's resistance or anything yet but everything I'm reading about it (I know...shame on me) suggests that it has a life not uncommon to cepacia. I'm getting scared and just need some encouragement from you guys.

Thanks
 
E

ej0820

New member
hey all,

so I'm in the hospital with fevers above 101*F (38.9*C). they are most likely caused by mycobacterium abscessus and mycobacterium avium. we don't know it's resistance or anything yet but everything I'm reading about it (I know...shame on me) suggests that it has a life not uncommon to cepacia. I'm getting scared and just need some encouragement from you guys.

Thanks
 
E

ej0820

New member
hey all,

so I'm in the hospital with fevers above 101*F (38.9*C). they are most likely caused by mycobacterium abscessus and mycobacterium avium. we don't know it's resistance or anything yet but everything I'm reading about it (I know...shame on me) suggests that it has a life not uncommon to cepacia. I'm getting scared and just need some encouragement from you guys.

Thanks
 
E

ej0820

New member
hey all,

so I'm in the hospital with fevers above 101*F (38.9*C). they are most likely caused by mycobacterium abscessus and mycobacterium avium. we don't know it's resistance or anything yet but everything I'm reading about it (I know...shame on me) suggests that it has a life not uncommon to cepacia. I'm getting scared and just need some encouragement from you guys.

Thanks
 
E

ej0820

New member
hey all,
<br />
<br />so I'm in the hospital with fevers above 101*F (38.9*C). they are most likely caused by mycobacterium abscessus and mycobacterium avium. we don't know it's resistance or anything yet but everything I'm reading about it (I know...shame on me) suggests that it has a life not uncommon to cepacia. I'm getting scared and just need some encouragement from you guys.
<br />
<br />Thanks
 
L

ladybug

New member
I just recently cultured the avium one you mentioned (MAC) for the first time. I was told by my docs they only treat it if it causes problems and that many many CFers culture this as they grow older. My docs said its really not such a "big deal". If you are in the hospital because of it, it must be causing you issues, and I'm sorry to hear that. If you're in with an exacerbation, my doc said its often tough to know whether the pseudo and other infections we grow or the MAC are causing problems.

I wish you well with what you're battling. I'm glad you're in the hospital and getting the care you need and it sounds like they're being agressive, which is good.

The people I've read about on this site who have had MAC or other mycobacterium have said that it often takes months to erradicate/treat it, but they DO treat it. It IS treatable. So, I hope this puts your mind at ease. I know it did for me.
 
L

ladybug

New member
I just recently cultured the avium one you mentioned (MAC) for the first time. I was told by my docs they only treat it if it causes problems and that many many CFers culture this as they grow older. My docs said its really not such a "big deal". If you are in the hospital because of it, it must be causing you issues, and I'm sorry to hear that. If you're in with an exacerbation, my doc said its often tough to know whether the pseudo and other infections we grow or the MAC are causing problems.

I wish you well with what you're battling. I'm glad you're in the hospital and getting the care you need and it sounds like they're being agressive, which is good.

The people I've read about on this site who have had MAC or other mycobacterium have said that it often takes months to erradicate/treat it, but they DO treat it. It IS treatable. So, I hope this puts your mind at ease. I know it did for me.
 
L

ladybug

New member
I just recently cultured the avium one you mentioned (MAC) for the first time. I was told by my docs they only treat it if it causes problems and that many many CFers culture this as they grow older. My docs said its really not such a "big deal". If you are in the hospital because of it, it must be causing you issues, and I'm sorry to hear that. If you're in with an exacerbation, my doc said its often tough to know whether the pseudo and other infections we grow or the MAC are causing problems.

I wish you well with what you're battling. I'm glad you're in the hospital and getting the care you need and it sounds like they're being agressive, which is good.

The people I've read about on this site who have had MAC or other mycobacterium have said that it often takes months to erradicate/treat it, but they DO treat it. It IS treatable. So, I hope this puts your mind at ease. I know it did for me.
 
L

ladybug

New member
I just recently cultured the avium one you mentioned (MAC) for the first time. I was told by my docs they only treat it if it causes problems and that many many CFers culture this as they grow older. My docs said its really not such a "big deal". If you are in the hospital because of it, it must be causing you issues, and I'm sorry to hear that. If you're in with an exacerbation, my doc said its often tough to know whether the pseudo and other infections we grow or the MAC are causing problems.

I wish you well with what you're battling. I'm glad you're in the hospital and getting the care you need and it sounds like they're being agressive, which is good.

The people I've read about on this site who have had MAC or other mycobacterium have said that it often takes months to erradicate/treat it, but they DO treat it. It IS treatable. So, I hope this puts your mind at ease. I know it did for me.
 
L

ladybug

New member
I just recently cultured the avium one you mentioned (MAC) for the first time. I was told by my docs they only treat it if it causes problems and that many many CFers culture this as they grow older. My docs said its really not such a "big deal". If you are in the hospital because of it, it must be causing you issues, and I'm sorry to hear that. If you're in with an exacerbation, my doc said its often tough to know whether the pseudo and other infections we grow or the MAC are causing problems.
<br />
<br />I wish you well with what you're battling. I'm glad you're in the hospital and getting the care you need and it sounds like they're being agressive, which is good.
<br />
<br />The people I've read about on this site who have had MAC or other mycobacterium have said that it often takes months to erradicate/treat it, but they DO treat it. It IS treatable. So, I hope this puts your mind at ease. I know it did for me.
<br />
<br />
 
C

christyisnutz

Guest
I've had both. Mycobacterium abscessus is much worse than avium. I wouldn't compare it to genomovar III cepacia though, because a mycobacterium is completely gone with a transplant, where the cepacia can stay in the rest of the body and get into the blood stream.. it's why most hospitals don't like to transplant those with that type of cepacia. Transplant centers don't have a problem transplanting those with a mycobacterium.

However, mycobacterium abscessus does eat away the lungs similar to a flesh eating bacteria.. that's what the doc told me and what another doc told a friend of mine who had it. Treatment for this mycobacterium is typically 18 to 24 months of IV therapy. Unfortunately, over 2 years of daily IV's didn't get rid of it for me, and I had to get transplanted because of this mycobacterium. I am glad your docs are on top of it and trying to figure out what to treat you with. I do hope you can get rid of it!! I know there is always that chance. Hang in there!
 
C

christyisnutz

Guest
I've had both. Mycobacterium abscessus is much worse than avium. I wouldn't compare it to genomovar III cepacia though, because a mycobacterium is completely gone with a transplant, where the cepacia can stay in the rest of the body and get into the blood stream.. it's why most hospitals don't like to transplant those with that type of cepacia. Transplant centers don't have a problem transplanting those with a mycobacterium.

However, mycobacterium abscessus does eat away the lungs similar to a flesh eating bacteria.. that's what the doc told me and what another doc told a friend of mine who had it. Treatment for this mycobacterium is typically 18 to 24 months of IV therapy. Unfortunately, over 2 years of daily IV's didn't get rid of it for me, and I had to get transplanted because of this mycobacterium. I am glad your docs are on top of it and trying to figure out what to treat you with. I do hope you can get rid of it!! I know there is always that chance. Hang in there!
 
C

christyisnutz

Guest
I've had both. Mycobacterium abscessus is much worse than avium. I wouldn't compare it to genomovar III cepacia though, because a mycobacterium is completely gone with a transplant, where the cepacia can stay in the rest of the body and get into the blood stream.. it's why most hospitals don't like to transplant those with that type of cepacia. Transplant centers don't have a problem transplanting those with a mycobacterium.

However, mycobacterium abscessus does eat away the lungs similar to a flesh eating bacteria.. that's what the doc told me and what another doc told a friend of mine who had it. Treatment for this mycobacterium is typically 18 to 24 months of IV therapy. Unfortunately, over 2 years of daily IV's didn't get rid of it for me, and I had to get transplanted because of this mycobacterium. I am glad your docs are on top of it and trying to figure out what to treat you with. I do hope you can get rid of it!! I know there is always that chance. Hang in there!
 
C

christyisnutz

Guest
I've had both. Mycobacterium abscessus is much worse than avium. I wouldn't compare it to genomovar III cepacia though, because a mycobacterium is completely gone with a transplant, where the cepacia can stay in the rest of the body and get into the blood stream.. it's why most hospitals don't like to transplant those with that type of cepacia. Transplant centers don't have a problem transplanting those with a mycobacterium.

However, mycobacterium abscessus does eat away the lungs similar to a flesh eating bacteria.. that's what the doc told me and what another doc told a friend of mine who had it. Treatment for this mycobacterium is typically 18 to 24 months of IV therapy. Unfortunately, over 2 years of daily IV's didn't get rid of it for me, and I had to get transplanted because of this mycobacterium. I am glad your docs are on top of it and trying to figure out what to treat you with. I do hope you can get rid of it!! I know there is always that chance. Hang in there!
 
C

christyisnutz

Guest
I've had both. Mycobacterium abscessus is much worse than avium. I wouldn't compare it to genomovar III cepacia though, because a mycobacterium is completely gone with a transplant, where the cepacia can stay in the rest of the body and get into the blood stream.. it's why most hospitals don't like to transplant those with that type of cepacia. Transplant centers don't have a problem transplanting those with a mycobacterium.
<br />
<br />However, mycobacterium abscessus does eat away the lungs similar to a flesh eating bacteria.. that's what the doc told me and what another doc told a friend of mine who had it. Treatment for this mycobacterium is typically 18 to 24 months of IV therapy. Unfortunately, over 2 years of daily IV's didn't get rid of it for me, and I had to get transplanted because of this mycobacterium. I am glad your docs are on top of it and trying to figure out what to treat you with. I do hope you can get rid of it!! I know there is always that chance. Hang in there!
 
J

juliepie

New member
I cultured M. abscessus. It hasn't grown out in my cultures in about 6 months now. It took a long regimen of IVs and I still take intense amounts of oral abx to keep it under control, but it hasn't caused any problems for me in a while. The infectious disease team at my regular hospital and also at my transplant hospital (I am in the process of being listed) both agree that it is control-able and will not affect my chances of being listed. Mycobacteria can be pretty resistant, I ended up taking many many antibiotics that I've never heard to, but it is possible to control the infection.

Good luck! I hope they get the sensitivities asap and get you on your way to feeling better!
 
J

juliepie

New member
I cultured M. abscessus. It hasn't grown out in my cultures in about 6 months now. It took a long regimen of IVs and I still take intense amounts of oral abx to keep it under control, but it hasn't caused any problems for me in a while. The infectious disease team at my regular hospital and also at my transplant hospital (I am in the process of being listed) both agree that it is control-able and will not affect my chances of being listed. Mycobacteria can be pretty resistant, I ended up taking many many antibiotics that I've never heard to, but it is possible to control the infection.

Good luck! I hope they get the sensitivities asap and get you on your way to feeling better!
 
J

juliepie

New member
I cultured M. abscessus. It hasn't grown out in my cultures in about 6 months now. It took a long regimen of IVs and I still take intense amounts of oral abx to keep it under control, but it hasn't caused any problems for me in a while. The infectious disease team at my regular hospital and also at my transplant hospital (I am in the process of being listed) both agree that it is control-able and will not affect my chances of being listed. Mycobacteria can be pretty resistant, I ended up taking many many antibiotics that I've never heard to, but it is possible to control the infection.

Good luck! I hope they get the sensitivities asap and get you on your way to feeling better!
 
J

juliepie

New member
I cultured M. abscessus. It hasn't grown out in my cultures in about 6 months now. It took a long regimen of IVs and I still take intense amounts of oral abx to keep it under control, but it hasn't caused any problems for me in a while. The infectious disease team at my regular hospital and also at my transplant hospital (I am in the process of being listed) both agree that it is control-able and will not affect my chances of being listed. Mycobacteria can be pretty resistant, I ended up taking many many antibiotics that I've never heard to, but it is possible to control the infection.

Good luck! I hope they get the sensitivities asap and get you on your way to feeling better!
 
J

juliepie

New member
I cultured M. abscessus. It hasn't grown out in my cultures in about 6 months now. It took a long regimen of IVs and I still take intense amounts of oral abx to keep it under control, but it hasn't caused any problems for me in a while. The infectious disease team at my regular hospital and also at my transplant hospital (I am in the process of being listed) both agree that it is control-able and will not affect my chances of being listed. Mycobacteria can be pretty resistant, I ended up taking many many antibiotics that I've never heard to, but it is possible to control the infection.
<br />
<br />Good luck! I hope they get the sensitivities asap and get you on your way to feeling better!
 
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