Mycobacterium abscessus

S

serendipity730

New member
Hi,

Over the last two years, I have had an explained decline in my lung function (~20%). During that time, I've undergone numerous tests and had two bronchoscopies (10/09 & 6/10). My doctor just imformed that me that my most recent bronch sample grew M. abscessus. I have done some reading about it, and it seems to be the culprit in unexplained declines often. I was hoping that someone who has cultured it in the past could tell me a little bit about what their disease course has been like since then. Some of the things I am reading are scaring me, to be quite honest.

Thanks!
 
S

serendipity730

New member
Hi,

Over the last two years, I have had an explained decline in my lung function (~20%). During that time, I've undergone numerous tests and had two bronchoscopies (10/09 & 6/10). My doctor just imformed that me that my most recent bronch sample grew M. abscessus. I have done some reading about it, and it seems to be the culprit in unexplained declines often. I was hoping that someone who has cultured it in the past could tell me a little bit about what their disease course has been like since then. Some of the things I am reading are scaring me, to be quite honest.

Thanks!
 
S

serendipity730

New member
Hi,
<br />
<br />Over the last two years, I have had an explained decline in my lung function (~20%). During that time, I've undergone numerous tests and had two bronchoscopies (10/09 & 6/10). My doctor just imformed that me that my most recent bronch sample grew M. abscessus. I have done some reading about it, and it seems to be the culprit in unexplained declines often. I was hoping that someone who has cultured it in the past could tell me a little bit about what their disease course has been like since then. Some of the things I am reading are scaring me, to be quite honest.
<br />
<br />Thanks!
 
M

marla

New member
My 17 year old son, Brad, cultures mycobacterium
abscessus. He first cultured it three years ago. At first, we didn't do anything to treat it as it didn't seem to be causing any problems.

However, over the next year he did start having a slow decline in lung function. He went from going into the hospital once a year to going in a few times a year. We decided to treat it with zythromax, IV tagicil and IV amikacin, the medicines that the mycobacterium was sensitive to at the time. This was a hard treatment because the amikacin made my son nauseous all the time. We used this regimen for 7 months, but never saw any difference in pfts or on CT scans. In the end the amikacin caused signifcant hearing loss and we decided to stop it.

We went 9 months without treating it and my son was fine though he never completely recovered his lung function. Six months ago he started having frequent exacerbations and a drop in pfts. This time the mycobacterium was sensitive to different meds. We began treating it with zithromax, zyvox and IV cefoxitin. We have done this for six months and have seen some improvements on CT scans and a little rise in pfts (my son's FEV1 is 67% right now, the lowest it's been is 54%). These meds have had no bad side effects and treatment has been fairly easy. Brad has had relatively good lung health during this time and he went for months with no exacerbations. Our plan was to follow this regiment for one year in hopes of getting rid of the mycobacterium for good. Sadly, last week we learned that the mycobacterium is no longer sensitive to the meds we are treating it with. We are stopping treatment. For now the plan is to treat the mycobacterium whenever it causes problems. This could mean IVs for a few months out of every year, or years in between treatments, depending on how often it flares up. I've met people online that have had it for years and treat it this way.

This certainly has not been the end of the world for us, it just sucks as so many things about cf do. The long courses of IVs really do become part of your daily routine and you don't give much thought to it after a while. I wish you success in whatever treatment you and your doctors decide on. If you don't mind updating the site on what your doctors advise, I would appreciate it. I'm always interested in how others are treating this.

Lisa
 
M

marla

New member
My 17 year old son, Brad, cultures mycobacterium
abscessus. He first cultured it three years ago. At first, we didn't do anything to treat it as it didn't seem to be causing any problems.

However, over the next year he did start having a slow decline in lung function. He went from going into the hospital once a year to going in a few times a year. We decided to treat it with zythromax, IV tagicil and IV amikacin, the medicines that the mycobacterium was sensitive to at the time. This was a hard treatment because the amikacin made my son nauseous all the time. We used this regimen for 7 months, but never saw any difference in pfts or on CT scans. In the end the amikacin caused signifcant hearing loss and we decided to stop it.

We went 9 months without treating it and my son was fine though he never completely recovered his lung function. Six months ago he started having frequent exacerbations and a drop in pfts. This time the mycobacterium was sensitive to different meds. We began treating it with zithromax, zyvox and IV cefoxitin. We have done this for six months and have seen some improvements on CT scans and a little rise in pfts (my son's FEV1 is 67% right now, the lowest it's been is 54%). These meds have had no bad side effects and treatment has been fairly easy. Brad has had relatively good lung health during this time and he went for months with no exacerbations. Our plan was to follow this regiment for one year in hopes of getting rid of the mycobacterium for good. Sadly, last week we learned that the mycobacterium is no longer sensitive to the meds we are treating it with. We are stopping treatment. For now the plan is to treat the mycobacterium whenever it causes problems. This could mean IVs for a few months out of every year, or years in between treatments, depending on how often it flares up. I've met people online that have had it for years and treat it this way.

This certainly has not been the end of the world for us, it just sucks as so many things about cf do. The long courses of IVs really do become part of your daily routine and you don't give much thought to it after a while. I wish you success in whatever treatment you and your doctors decide on. If you don't mind updating the site on what your doctors advise, I would appreciate it. I'm always interested in how others are treating this.

Lisa
 
M

marla

New member
My 17 year old son, Brad, cultures mycobacterium
<br />abscessus. He first cultured it three years ago. At first, we didn't do anything to treat it as it didn't seem to be causing any problems.
<br />
<br /> However, over the next year he did start having a slow decline in lung function. He went from going into the hospital once a year to going in a few times a year. We decided to treat it with zythromax, IV tagicil and IV amikacin, the medicines that the mycobacterium was sensitive to at the time. This was a hard treatment because the amikacin made my son nauseous all the time. We used this regimen for 7 months, but never saw any difference in pfts or on CT scans. In the end the amikacin caused signifcant hearing loss and we decided to stop it.
<br />
<br /> We went 9 months without treating it and my son was fine though he never completely recovered his lung function. Six months ago he started having frequent exacerbations and a drop in pfts. This time the mycobacterium was sensitive to different meds. We began treating it with zithromax, zyvox and IV cefoxitin. We have done this for six months and have seen some improvements on CT scans and a little rise in pfts (my son's FEV1 is 67% right now, the lowest it's been is 54%). These meds have had no bad side effects and treatment has been fairly easy. Brad has had relatively good lung health during this time and he went for months with no exacerbations. Our plan was to follow this regiment for one year in hopes of getting rid of the mycobacterium for good. Sadly, last week we learned that the mycobacterium is no longer sensitive to the meds we are treating it with. We are stopping treatment. For now the plan is to treat the mycobacterium whenever it causes problems. This could mean IVs for a few months out of every year, or years in between treatments, depending on how often it flares up. I've met people online that have had it for years and treat it this way.
<br />
<br /> This certainly has not been the end of the world for us, it just sucks as so many things about cf do. The long courses of IVs really do become part of your daily routine and you don't give much thought to it after a while. I wish you success in whatever treatment you and your doctors decide on. If you don't mind updating the site on what your doctors advise, I would appreciate it. I'm always interested in how others are treating this.
<br />
<br />Lisa
 
T

tarheel

Guest
Question about the IV regimine- why would you do it for a YEAR? I mean, abx are designed to be used on and off, or else the bugs do grow resistant to it. I grow a different mycobacterium, but it has always been susceptible to the same abx as my mrsa- and using the abx for two to four week courses, they stay suceptible to the same things.
 
T

tarheel

Guest
Question about the IV regimine- why would you do it for a YEAR? I mean, abx are designed to be used on and off, or else the bugs do grow resistant to it. I grow a different mycobacterium, but it has always been susceptible to the same abx as my mrsa- and using the abx for two to four week courses, they stay suceptible to the same things.
 
T

tarheel

Guest
Question about the IV regimine- why would you do it for a YEAR? I mean, abx are designed to be used on and off, or else the bugs do grow resistant to it. I grow a different mycobacterium, but it has always been susceptible to the same abx as my mrsa- and using the abx for two to four week courses, they stay suceptible to the same things.
 
L

LouLou

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tarheel</b></i>

Question about the IV regimine- why would you do it for a YEAR? q]

It's standard protocol to treat MAC for 12-18 months as I understand it from others on this site that have cultured it. Perhaps it's because they can make it go away if caught early enough or because left untreated agressively would be deadly. Denver National Jewish is the leader in MAC. If I ever culture it I will definitely be headed out there for a consult. Perhaps you need a second opinion on your care?
 
L

LouLou

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tarheel</b></i>

Question about the IV regimine- why would you do it for a YEAR? q]

It's standard protocol to treat MAC for 12-18 months as I understand it from others on this site that have cultured it. Perhaps it's because they can make it go away if caught early enough or because left untreated agressively would be deadly. Denver National Jewish is the leader in MAC. If I ever culture it I will definitely be headed out there for a consult. Perhaps you need a second opinion on your care?
 
L

LouLou

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tarheel</b></i>
<br />
<br />Question about the IV regimine- why would you do it for a YEAR? q]
<br />
<br />It's standard protocol to treat MAC for 12-18 months as I understand it from others on this site that have cultured it. Perhaps it's because they can make it go away if caught early enough or because left untreated agressively would be deadly. Denver National Jewish is the leader in MAC. If I ever culture it I will definitely be headed out there for a consult. Perhaps you need a second opinion on your care?
 
M

Mallymookcf

New member
hello! i was 16 when i was first told i cultured out mycobacterium abscessus. (i am now 24.) i had always had my pfts anywhere from 110-120, until i turned around 15 or 16. they were not sure as to why they started dropping into the 70s and 80s until i too grew the abscessus. they started on a very rigorous IV treatment of, zyvox, cyfoxitin (not sure spelling), and another one that i cant remember the name. I also did amikacin in a nebulizer (even though it is in the form for IV use). it made my voice so horse and even completely where i could not talk sometimes. i was on treatment for motnhs until i finally started having allergic reactions to my iv meds (i guess my body wanted no more) everytime i would connect one of the iv meds...i would itch to DEATH and break out in a body rash and had terrible pain in my spine. i guess God knew i should be done with treatment because as soon as i went back for sputum cultures it showed no signs of the abscessus. to be sure, my doctor did a broncoscopy to get a better sample and still no sign of it! it has been 7 years and still no cultures have grown it! i believe i was healed! my pfts immediately starting getting better right after i started treatment. today they are high 90s! so there is hope! stay positive, pray to be healed ( u could have a healing service with u and ur family..we did, and i believe that is why i am healthy today ) lots of love!!!
Mallory
 
M

Mallymookcf

New member
hello! i was 16 when i was first told i cultured out mycobacterium abscessus. (i am now 24.) i had always had my pfts anywhere from 110-120, until i turned around 15 or 16. they were not sure as to why they started dropping into the 70s and 80s until i too grew the abscessus. they started on a very rigorous IV treatment of, zyvox, cyfoxitin (not sure spelling), and another one that i cant remember the name. I also did amikacin in a nebulizer (even though it is in the form for IV use). it made my voice so horse and even completely where i could not talk sometimes. i was on treatment for motnhs until i finally started having allergic reactions to my iv meds (i guess my body wanted no more) everytime i would connect one of the iv meds...i would itch to DEATH and break out in a body rash and had terrible pain in my spine. i guess God knew i should be done with treatment because as soon as i went back for sputum cultures it showed no signs of the abscessus. to be sure, my doctor did a broncoscopy to get a better sample and still no sign of it! it has been 7 years and still no cultures have grown it! i believe i was healed! my pfts immediately starting getting better right after i started treatment. today they are high 90s! so there is hope! stay positive, pray to be healed ( u could have a healing service with u and ur family..we did, and i believe that is why i am healthy today ) lots of love!!!
Mallory
 
M

Mallymookcf

New member
hello! i was 16 when i was first told i cultured out mycobacterium abscessus. (i am now 24.) i had always had my pfts anywhere from 110-120, until i turned around 15 or 16. they were not sure as to why they started dropping into the 70s and 80s until i too grew the abscessus. they started on a very rigorous IV treatment of, zyvox, cyfoxitin (not sure spelling), and another one that i cant remember the name. I also did amikacin in a nebulizer (even though it is in the form for IV use). it made my voice so horse and even completely where i could not talk sometimes. i was on treatment for motnhs until i finally started having allergic reactions to my iv meds (i guess my body wanted no more) everytime i would connect one of the iv meds...i would itch to DEATH and break out in a body rash and had terrible pain in my spine. i guess God knew i should be done with treatment because as soon as i went back for sputum cultures it showed no signs of the abscessus. to be sure, my doctor did a broncoscopy to get a better sample and still no sign of it! it has been 7 years and still no cultures have grown it! i believe i was healed! my pfts immediately starting getting better right after i started treatment. today they are high 90s! so there is hope! stay positive, pray to be healed ( u could have a healing service with u and ur family..we did, and i believe that is why i am healthy today ) lots of love!!!
<br />Mallory
 
M

marla

New member
Like Lou Lou said, it's protocol to treat the mycobacterium abscessus with antibiotics for anywhere from 6 to 18 months if you are trying to get rid of it. My doctor consults frequently with National Jewish on my son's case. His labs are sent there and we've taken all of their advice exactly as they have given it.
 
M

marla

New member
Like Lou Lou said, it's protocol to treat the mycobacterium abscessus with antibiotics for anywhere from 6 to 18 months if you are trying to get rid of it. My doctor consults frequently with National Jewish on my son's case. His labs are sent there and we've taken all of their advice exactly as they have given it.
 
M

marla

New member
Like Lou Lou said, it's protocol to treat the mycobacterium abscessus with antibiotics for anywhere from 6 to 18 months if you are trying to get rid of it. My doctor consults frequently with National Jewish on my son's case. His labs are sent there and we've taken all of their advice exactly as they have given it.
 
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