Mycobacterium help

CysticlyFIT · Oct 17, 2011

Hi everyone! I'm new here and thought I join, I have seen everyones support on these forms and think its great, and very informative.

I grew something weird in my spit during my hosp. stay-, something called 'Mycobacterium ' For those of you that have had/current/ what do notice ?? A decline in lung function? Does it ever go away for you? More clean outs? I don't what "kind' of 'MYCOBAC', - Wether its TB class or complex or not, - or what it sensitive to, as I said it was just 'detected ' Thanks for ur help!!!

CysticlyFIT · Oct 17, 2011

Hi everyone! I'm new here and thought I join, I have seen everyones support on these forms and think its great, and very informative.

I grew something weird in my spit during my hosp. stay-, something called 'Mycobacterium ' For those of you that have had/current/ what do notice ?? A decline in lung function? Does it ever go away for you? More clean outs? I don't what "kind' of 'MYCOBAC', - Wether its TB class or complex or not, - or what it sensitive to, as I said it was just 'detected ' Thanks for ur help!!!

CysticlyFIT · Oct 17, 2011

Hi everyone! I'm new here and thought I join, I have seen everyones support on these forms and think its great, and very informative.

I grew something weird in my spit during my hosp. stay-, something called 'Mycobacterium ' For those of you that have had/current/ what do notice ?? A decline in lung function? Does it ever go away for you? More clean outs? I don't what "kind' of 'MYCOBAC', - Wether its TB class or complex or not, - or what it sensitive to, as I said it was just 'detected ' Thanks for ur help!!!

Ldude916 · Oct 17, 2011

Hey! So I had MAC when I was about 25 years old. My lung function decreased probably from 70 to 50% over the course of a year or two, I was always tired, my hair was falling out, I was losing weight. The doc couldn't figure out why tune-ups just didn't seem to be working, so they eventually tested for MAC (I'm still bitter he didn't think of this earlier). I just overall felt like my immune system was failing me.

Anyway, the test came back positive and I was put on 18-24 month course of oral antibiotics called rifampin and ethambutol. They can be kind of hard on the liver, and after 17 months on it, I did experience some issues with my eyesight. After I stopped taking the drugs at 18 months, my eyesight returned to normal.

I no longer culture MAC, but I do feel like it led to my downfall, so I hope you don't have it, or if you do, it's good they found it early before you have symptoms like mine.

I started to feel better after a couple months of taking the drugs...energy came back, hair stopped falling out, FEV stopped falling......so, don't be too scared - I believe it can be treated - and it's so great that you are so committed to exercise!

Ldude916 · Oct 17, 2011

Hey! So I had MAC when I was about 25 years old. My lung function decreased probably from 70 to 50% over the course of a year or two, I was always tired, my hair was falling out, I was losing weight. The doc couldn't figure out why tune-ups just didn't seem to be working, so they eventually tested for MAC (I'm still bitter he didn't think of this earlier). I just overall felt like my immune system was failing me.

Anyway, the test came back positive and I was put on 18-24 month course of oral antibiotics called rifampin and ethambutol. They can be kind of hard on the liver, and after 17 months on it, I did experience some issues with my eyesight. After I stopped taking the drugs at 18 months, my eyesight returned to normal.

I no longer culture MAC, but I do feel like it led to my downfall, so I hope you don't have it, or if you do, it's good they found it early before you have symptoms like mine.

I started to feel better after a couple months of taking the drugs...energy came back, hair stopped falling out, FEV stopped falling......so, don't be too scared - I believe it can be treated - and it's so great that you are so committed to exercise!

Ldude916 · Oct 17, 2011

Hey! So I had MAC when I was about 25 years old. My lung function decreased probably from 70 to 50% over the course of a year or two, I was always tired, my hair was falling out, I was losing weight. The doc couldn't figure out why tune-ups just didn't seem to be working, so they eventually tested for MAC (I'm still bitter he didn't think of this earlier). I just overall felt like my immune system was failing me.
 
 Anyway, the test came back positive and I was put on 18-24 month course of oral antibiotics called rifampin and ethambutol. They can be kind of hard on the liver, and after 17 months on it, I did experience some issues with my eyesight. After I stopped taking the drugs at 18 months, my eyesight returned to normal.
 
 I no longer culture MAC, but I do feel like it led to my downfall, so I hope you don't have it, or if you do, it's good they found it early before you have symptoms like mine.
 
 I started to feel better after a couple months of taking the drugs...energy came back, hair stopped falling out, FEV stopped falling......so, don't be too scared - I believe it can be treated - and it's so great that you are so committed to exercise!

MichaelL · Oct 18, 2011

I was diagnosed with mycobacterium abscesses in the spring of 2008. I also grow steno and pseudomonas. My doctor has told me that some people have MAC without it causing them problems. Every time I go to the clinic (which is often), they test my sputum for all three infections. I always keep an eye on these measures.

I went through a nine-month treatment for MAC in 2009 that was primarily oral antibiotics. It improved my health for a couple years, but I found myself again having problems earlier this year. I started long-term IV therapy in March. It's expected to last well into next year although I don't have a definitive end date. Another patient in my clinic went through the long IV treatment and he didn't have problems with MAC again for ten years. It's not possible to kill off the MAC entirely, but it is possible to have it under control.

I hope you don't have MAC! The treatments are quite long, although you won't necessarily have to go on them as long as your health is stable.

MichaelL · Oct 18, 2011

I was diagnosed with mycobacterium abscesses in the spring of 2008. I also grow steno and pseudomonas. My doctor has told me that some people have MAC without it causing them problems. Every time I go to the clinic (which is often), they test my sputum for all three infections. I always keep an eye on these measures.

I went through a nine-month treatment for MAC in 2009 that was primarily oral antibiotics. It improved my health for a couple years, but I found myself again having problems earlier this year. I started long-term IV therapy in March. It's expected to last well into next year although I don't have a definitive end date. Another patient in my clinic went through the long IV treatment and he didn't have problems with MAC again for ten years. It's not possible to kill off the MAC entirely, but it is possible to have it under control.

I hope you don't have MAC! The treatments are quite long, although you won't necessarily have to go on them as long as your health is stable.

MichaelL · Oct 18, 2011

I was diagnosed with mycobacterium abscesses in the spring of 2008. I also grow steno and pseudomonas. My doctor has told me that some people have MAC without it causing them problems. Every time I go to the clinic (which is often), they test my sputum for all three infections. I always keep an eye on these measures.
 
 I went through a nine-month treatment for MAC in 2009 that was primarily oral antibiotics. It improved my health for a couple years, but I found myself again having problems earlier this year. I started long-term IV therapy in March. It's expected to last well into next year although I don't have a definitive end date. Another patient in my clinic went through the long IV treatment and he didn't have problems with MAC again for ten years. It's not possible to kill off the MAC entirely, but it is possible to have it under control.
 
 I hope you don't have MAC! The treatments are quite long, although you won't necessarily have to go on them as long as your health is stable.

TonyaH · Oct 18, 2011

Welcome to the board, FIT,

There is a class of mycobacterium that are called NTMs,,,Non Tuberculous Mycobacteria. There are many NTMs, but the most common you hear about in CF are Mycobacterium Avium Complex (MAC), and mycobacterium abcessus. My son started culturing abcessus about a year and half ago and I'll be truthful. It has been no fun.

Reading information on the web is very scary. It makes prognosis sound kind of grim. I think you'll find better information as well as a brighter outlook from those who will respond to you here.

Andrew's lung function has dropped about 10 percent since m. abcessus entered the picture. But, he has had periods of rebound in between treatments, so I would call him 'fluctuating' right now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Symptoms have included low grade afternoon fevers, fatique, an increased baseline cough, periodic drops in pfts, and just this past weekend, hemoptysis. (Although we are not quite sure the hemoptysis is infection related as he has had issues with this in the past.)

In the past 18 months my he has been through two different rounds of iv treatments, one lasting 6 weeks, one lasting 8 weeks. We just found out that his culture from last Wednesday is showing it again. We've just come to expect that this is here to stay. I'm more concerned with controlling it than eradicating it, as it doesn't look likely that eradicating it is going to happen.

The identification and sensitivities take a long time to grow out. It's hard to be patient. Hang in there! I hope you get answers very soon.

Oh, and if I were you, I would call my doctor. This is definitely worthy of a chat with your doc, not just your nurse.

Good luck!

TonyaH · Oct 18, 2011

Welcome to the board, FIT,

There is a class of mycobacterium that are called NTMs,,,Non Tuberculous Mycobacteria. There are many NTMs, but the most common you hear about in CF are Mycobacterium Avium Complex (MAC), and mycobacterium abcessus. My son started culturing abcessus about a year and half ago and I'll be truthful. It has been no fun.

Reading information on the web is very scary. It makes prognosis sound kind of grim. I think you'll find better information as well as a brighter outlook from those who will respond to you here.

Andrew's lung function has dropped about 10 percent since m. abcessus entered the picture. But, he has had periods of rebound in between treatments, so I would call him 'fluctuating' right now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Symptoms have included low grade afternoon fevers, fatique, an increased baseline cough, periodic drops in pfts, and just this past weekend, hemoptysis. (Although we are not quite sure the hemoptysis is infection related as he has had issues with this in the past.)

In the past 18 months my he has been through two different rounds of iv treatments, one lasting 6 weeks, one lasting 8 weeks. We just found out that his culture from last Wednesday is showing it again. We've just come to expect that this is here to stay. I'm more concerned with controlling it than eradicating it, as it doesn't look likely that eradicating it is going to happen.

The identification and sensitivities take a long time to grow out. It's hard to be patient. Hang in there! I hope you get answers very soon.

Oh, and if I were you, I would call my doctor. This is definitely worthy of a chat with your doc, not just your nurse.

Good luck!

TonyaH · Oct 18, 2011

Welcome to the board, FIT,
 
 There is a class of mycobacterium that are called NTMs,,,Non Tuberculous Mycobacteria. There are many NTMs, but the most common you hear about in CF are Mycobacterium Avium Complex (MAC), and mycobacterium abcessus. My son started culturing abcessus about a year and half ago and I'll be truthful. It has been no fun.
 
 Reading information on the web is very scary. It makes prognosis sound kind of grim. I think you'll find better information as well as a brighter outlook from those who will respond to you here.
 
 Andrew's lung function has dropped about 10 percent since m. abcessus entered the picture. But, he has had periods of rebound in between treatments, so I would call him 'fluctuating' right now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Symptoms have included low grade afternoon fevers, fatique, an increased baseline cough, periodic drops in pfts, and just this past weekend, hemoptysis. (Although we are not quite sure the hemoptysis is infection related as he has had issues with this in the past.)
 
 In the past 18 months my he has been through two different rounds of iv treatments, one lasting 6 weeks, one lasting 8 weeks. We just found out that his culture from last Wednesday is showing it again. We've just come to expect that this is here to stay. I'm more concerned with controlling it than eradicating it, as it doesn't look likely that eradicating it is going to happen.
 
 The identification and sensitivities take a long time to grow out. It's hard to be patient. Hang in there! I hope you get answers very soon.
 
 Oh, and if I were you, I would call my doctor. This is definitely worthy of a chat with your doc, not just your nurse.
 
 Good luck!

CysticlyFIT · Oct 18, 2011

Hi there everyone,

Thank all for your great repays and support !

From what i'm gather on these forms, MAC and M.Abses. seems to target young and old age CFers, and they seem to cope with well, or least be stable if my info is correct,- despite being battered with antibiotics for long time.

Its just doesn't seem talked about in other CF places, !

A couple of more questions....

Did you notice any particular smell from your sputum when it was active ?

Reason being, is when before I went in from my past tune up, in the days before, I cough up green and smelled like ' musty ' odor when collected in a cup.... ..any of you MAC/M.absers had that??

Also, there has been a study out now that study Zirthomax can contribute to MAC infection when used long term.

I take this, M W F, for the past 2 years... although I have never had pseudo, my dr. told me as a preventive tool against pseudo....And now im wondering... : S

Do you still take zirthomax despite a diagnoses of MAC/ M. complexes ?

CysticlyFIT · Oct 18, 2011

Hi there everyone,

Thank all for your great repays and support !

From what i'm gather on these forms, MAC and M.Abses. seems to target young and old age CFers, and they seem to cope with well, or least be stable if my info is correct,- despite being battered with antibiotics for long time.

Its just doesn't seem talked about in other CF places, !

A couple of more questions....

Did you notice any particular smell from your sputum when it was active ?

Reason being, is when before I went in from my past tune up, in the days before, I cough up green and smelled like ' musty ' odor when collected in a cup.... ..any of you MAC/M.absers had that??

Also, there has been a study out now that study Zirthomax can contribute to MAC infection when used long term.

I take this, M W F, for the past 2 years... although I have never had pseudo, my dr. told me as a preventive tool against pseudo....And now im wondering... : S

Do you still take zirthomax despite a diagnoses of MAC/ M. complexes ?

CysticlyFIT · Oct 18, 2011

Hi there everyone,
 
 Thank all for your great repays and support !
 
 From what i'm gather on these forms, MAC and M.Abses. seems to target young and old age CFers, and they seem to cope with well, or least be stable if my info is correct,- despite being battered with antibiotics for long time.
 
 Its just doesn't seem talked about in other CF places, !
 
 A couple of more questions....
 
 Did you notice any particular smell from your sputum when it was active ?
 
 Reason being, is when before I went in from my past tune up, in the days before, I cough up green and smelled like ' musty ' odor when collected in a cup.... ..any of you MAC/M.absers had that??
 
 Also, there has been a study out now that study Zirthomax can contribute to MAC infection when used long term.
 
 I take this, M W F, for the past 2 years... although I have never had pseudo, my dr. told me as a preventive tool against pseudo....And now im wondering... : S
 
 Do you still take zirthomax despite a diagnoses of MAC/ M. complexes ?

CysticlyFIT · Oct 18, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: TonyaH

Welcome to the board, FIT,

There is a class of mycobacterium that are called NTMs,,,Non Tuberculous Mycobacteria. There are many NTMs, but the most common you hear about in CF are Mycobacterium Avium Complex (MAC), and mycobacterium abcessus. My son started culturing abcessus about a year and half ago and I'll be truthful. It has been no fun.

Reading information on the web is very scary. It makes prognosis sound kind of grim. I think you'll find better information as well as a brighter outlook from those who will respond to you here.

Andrew's lung function has dropped about 10 percent since m. abcessus entered the picture. But, he has had periods of rebound in between treatments, so I would call him 'fluctuating' right now. <img src=""> Symptoms have included low grade afternoon fevers, fatique, an increased baseline cough, periodic drops in pfts, and just this past weekend, hemoptysis. (Although we are not quite sure the hemoptysis is infection related as he has had issues with this in the past.)

In the past 18 months my he has been through two different rounds of iv treatments, one lasting 6 weeks, one lasting 8 weeks. We just found out that his culture from last Wednesday is showing it again. We've just come to expect that this is here to stay. I'm more concerned with controlling it than eradicating it, as it doesn't look likely that eradicating it is going to happen.

The identification and sensitivities take a long time to grow out. It's hard to be patient. Hang in there! I hope you get answers very soon.

Oh, and if I were you, I would call my doctor. This is definitely worthy of a chat with your doc, not just your nurse.

Good luck!</end quote></div> Hi TonyaH Thank you being truthful in what this, too many times, these ( I feel ) Drs sugarcoat things, and say ' oh, you'll be fine, we give you different antibiotics and can give rid of it most cases' , I like to know what i'm dealing with and what power I can have for treatments, ect Yea, any info on the web I can across was confusing and technical,. I have had too the odd period low-grade fevers, and my lung function has fluctuated sometimes as well, but it seems to come and go, just as son has....these 'episodes' Thanks for your info, and i will speak to the dr at my next appointment about this. I hope your son's doing well, make sure he exercises, plays and rolls in the mud ! HA! <img src="i/expressions/face-icon-small-happy.gif" border="0">

CysticlyFIT · Oct 18, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: TonyaH

Welcome to the board, FIT,

There is a class of mycobacterium that are called NTMs,,,Non Tuberculous Mycobacteria. There are many NTMs, but the most common you hear about in CF are Mycobacterium Avium Complex (MAC), and mycobacterium abcessus. My son started culturing abcessus about a year and half ago and I'll be truthful. It has been no fun.

Reading information on the web is very scary. It makes prognosis sound kind of grim. I think you'll find better information as well as a brighter outlook from those who will respond to you here.

Andrew's lung function has dropped about 10 percent since m. abcessus entered the picture. But, he has had periods of rebound in between treatments, so I would call him 'fluctuating' right now. <img src=""> Symptoms have included low grade afternoon fevers, fatique, an increased baseline cough, periodic drops in pfts, and just this past weekend, hemoptysis. (Although we are not quite sure the hemoptysis is infection related as he has had issues with this in the past.)

In the past 18 months my he has been through two different rounds of iv treatments, one lasting 6 weeks, one lasting 8 weeks. We just found out that his culture from last Wednesday is showing it again. We've just come to expect that this is here to stay. I'm more concerned with controlling it than eradicating it, as it doesn't look likely that eradicating it is going to happen.

The identification and sensitivities take a long time to grow out. It's hard to be patient. Hang in there! I hope you get answers very soon.

Oh, and if I were you, I would call my doctor. This is definitely worthy of a chat with your doc, not just your nurse.

Good luck!</end quote> Hi TonyaH Thank you being truthful in what this, too many times, these ( I feel ) Drs sugarcoat things, and say ' oh, you'll be fine, we give you different antibiotics and can give rid of it most cases' , I like to know what i'm dealing with and what power I can have for treatments, ect Yea, any info on the web I can across was confusing and technical,. I have had too the odd period low-grade fevers, and my lung function has fluctuated sometimes as well, but it seems to come and go, just as son has....these 'episodes' Thanks for your info, and i will speak to the dr at my next appointment about this. I hope your son's doing well, make sure he exercises, plays and rolls in the mud ! HA! <img src="i/expressions/face-icon-small-happy.gif" border="0">

CysticlyFIT · Oct 18, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: TonyaH

Welcome to the board, FIT,

There is a class of mycobacterium that are called NTMs,,,Non Tuberculous Mycobacteria. There are many NTMs, but the most common you hear about in CF are Mycobacterium Avium Complex (MAC), and mycobacterium abcessus. My son started culturing abcessus about a year and half ago and I'll be truthful. It has been no fun.

Reading information on the web is very scary. It makes prognosis sound kind of grim. I think you'll find better information as well as a brighter outlook from those who will respond to you here.

Andrew's lung function has dropped about 10 percent since m. abcessus entered the picture. But, he has had periods of rebound in between treatments, so I would call him 'fluctuating' right now. <img src=""> Symptoms have included low grade afternoon fevers, fatique, an increased baseline cough, periodic drops in pfts, and just this past weekend, hemoptysis. (Although we are not quite sure the hemoptysis is infection related as he has had issues with this in the past.)

In the past 18 months my he has been through two different rounds of iv treatments, one lasting 6 weeks, one lasting 8 weeks. We just found out that his culture from last Wednesday is showing it again. We've just come to expect that this is here to stay. I'm more concerned with controlling it than eradicating it, as it doesn't look likely that eradicating it is going to happen.

The identification and sensitivities take a long time to grow out. It's hard to be patient. Hang in there! I hope you get answers very soon.

Oh, and if I were you, I would call my doctor. This is definitely worthy of a chat with your doc, not just your nurse.

Good luck!</end quote> Hi TonyaH Thank you being truthful in what this, too many times, these ( I feel ) Drs sugarcoat things, and say ' oh, you'll be fine, we give you different antibiotics and can give rid of it most cases' , I like to know what i'm dealing with and what power I can have for treatments, ect Yea, any info on the web I can across was confusing and technical,. I have had too the odd period low-grade fevers, and my lung function has fluctuated sometimes as well, but it seems to come and go, just as son has....these 'episodes' Thanks for your info, and i will speak to the dr at my next appointment about this. I hope your son's doing well, make sure he exercises, plays and rolls in the mud ! HA! <img src="i/expressions/face-icon-small-happy.gif" border="0">

Ldude916 · Oct 19, 2011

I still take Zythromax. I mentioned the study to my doctor (and I wish I was listening with better ears that day) because he said that it only affected a VERY limited number of people - maybe even that it almost wasn't statistically significant....I'll have to ask him again what he said. I'll get back to you =)

Ldude916 · Oct 19, 2011

I still take Zythromax. I mentioned the study to my doctor (and I wish I was listening with better ears that day) because he said that it only affected a VERY limited number of people - maybe even that it almost wasn't statistically significant....I'll have to ask him again what he said. I'll get back to you =)

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