MAC

J

Jennsmom

New member
Hi Ladybug,

My daughter had mycobacterium abscessus (related but not the same as MAC - mycobacterium avium complex)and was treated for six months. She has not cultured it for about two years now.

I have never heard of anything regarding a skin rash but I don't believe they usually treat unless there are at least three positive cultures along with other symptoms such as the falling pft's. I think this varies among doctors with some being more aggressive than others.

She saw Dr. Richard Wallace at the University of Texas Health Center in Tyler.

There is a website which may be helpful to you, for nontuberculous mycobacteria - NTMinfo.com.
 
J

Jennsmom

New member
Hi Ladybug,

My daughter had mycobacterium abscessus (related but not the same as MAC - mycobacterium avium complex)and was treated for six months. She has not cultured it for about two years now.

I have never heard of anything regarding a skin rash but I don't believe they usually treat unless there are at least three positive cultures along with other symptoms such as the falling pft's. I think this varies among doctors with some being more aggressive than others.

She saw Dr. Richard Wallace at the University of Texas Health Center in Tyler.

There is a website which may be helpful to you, for nontuberculous mycobacteria - NTMinfo.com.
 
J

Jennsmom

New member
Hi Ladybug,

My daughter had mycobacterium abscessus (related but not the same as MAC - mycobacterium avium complex)and was treated for six months. She has not cultured it for about two years now.

I have never heard of anything regarding a skin rash but I don't believe they usually treat unless there are at least three positive cultures along with other symptoms such as the falling pft's. I think this varies among doctors with some being more aggressive than others.

She saw Dr. Richard Wallace at the University of Texas Health Center in Tyler.

There is a website which may be helpful to you, for nontuberculous mycobacteria - NTMinfo.com.
 
J

Jennsmom

New member
Hi Ladybug,

My daughter had mycobacterium abscessus (related but not the same as MAC - mycobacterium avium complex)and was treated for six months. She has not cultured it for about two years now.

I have never heard of anything regarding a skin rash but I don't believe they usually treat unless there are at least three positive cultures along with other symptoms such as the falling pft's. I think this varies among doctors with some being more aggressive than others.

She saw Dr. Richard Wallace at the University of Texas Health Center in Tyler.

There is a website which may be helpful to you, for nontuberculous mycobacteria - NTMinfo.com.
 
J

Jennsmom

New member
Hi Ladybug,
<br />
<br />My daughter had mycobacterium abscessus (related but not the same as MAC - mycobacterium avium complex)and was treated for six months. She has not cultured it for about two years now.
<br />
<br />I have never heard of anything regarding a skin rash but I don't believe they usually treat unless there are at least three positive cultures along with other symptoms such as the falling pft's. I think this varies among doctors with some being more aggressive than others.
<br />
<br />She saw Dr. Richard Wallace at the University of Texas Health Center in Tyler.
<br />
<br />There is a website which may be helpful to you, for nontuberculous mycobacteria - NTMinfo.com.
 
B

beleache

New member
Hi Sonia ,

I, like jenn have mycobacterium accesses .. My drs held off on treatment (because its harsh) for about 1 yr.

After my ct scan showed a change my dr decided to "go after it" I went to Denver National Jewish for a consultation.

They are the ones that came up w/ my treatment plan... So my drs here are following their lead, but honestly i think they would have prob done the same thing seeing that your sputum is sent out for testing what you are sensitive to ..

So i have been on 3 abx for about 7 mos now.. one oral , one inhaled , one IV.. I am heading back to Denver National Jewish in october..

I know there is one other Center like DNJ that is located in N.C. You can get the info for that from like jennsmom posted NTMinfo.com ..

If i can help you w/ any questions please PM me & i will give you my # ...

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

beleache

New member
Hi Sonia ,

I, like jenn have mycobacterium accesses .. My drs held off on treatment (because its harsh) for about 1 yr.

After my ct scan showed a change my dr decided to "go after it" I went to Denver National Jewish for a consultation.

They are the ones that came up w/ my treatment plan... So my drs here are following their lead, but honestly i think they would have prob done the same thing seeing that your sputum is sent out for testing what you are sensitive to ..

So i have been on 3 abx for about 7 mos now.. one oral , one inhaled , one IV.. I am heading back to Denver National Jewish in october..

I know there is one other Center like DNJ that is located in N.C. You can get the info for that from like jennsmom posted NTMinfo.com ..

If i can help you w/ any questions please PM me & i will give you my # ...

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

beleache

New member
Hi Sonia ,

I, like jenn have mycobacterium accesses .. My drs held off on treatment (because its harsh) for about 1 yr.

After my ct scan showed a change my dr decided to "go after it" I went to Denver National Jewish for a consultation.

They are the ones that came up w/ my treatment plan... So my drs here are following their lead, but honestly i think they would have prob done the same thing seeing that your sputum is sent out for testing what you are sensitive to ..

So i have been on 3 abx for about 7 mos now.. one oral , one inhaled , one IV.. I am heading back to Denver National Jewish in october..

I know there is one other Center like DNJ that is located in N.C. You can get the info for that from like jennsmom posted NTMinfo.com ..

If i can help you w/ any questions please PM me & i will give you my # ...

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

beleache

New member
Hi Sonia ,

I, like jenn have mycobacterium accesses .. My drs held off on treatment (because its harsh) for about 1 yr.

After my ct scan showed a change my dr decided to "go after it" I went to Denver National Jewish for a consultation.

They are the ones that came up w/ my treatment plan... So my drs here are following their lead, but honestly i think they would have prob done the same thing seeing that your sputum is sent out for testing what you are sensitive to ..

So i have been on 3 abx for about 7 mos now.. one oral , one inhaled , one IV.. I am heading back to Denver National Jewish in october..

I know there is one other Center like DNJ that is located in N.C. You can get the info for that from like jennsmom posted NTMinfo.com ..

If i can help you w/ any questions please PM me & i will give you my # ...

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

beleache

New member
Hi Sonia ,
<br />
<br /> I, like jenn have mycobacterium accesses .. My drs held off on treatment (because its harsh) for about 1 yr.
<br />
<br /> After my ct scan showed a change my dr decided to "go after it" I went to Denver National Jewish for a consultation.
<br />
<br /> They are the ones that came up w/ my treatment plan... So my drs here are following their lead, but honestly i think they would have prob done the same thing seeing that your sputum is sent out for testing what you are sensitive to ..
<br />
<br />So i have been on 3 abx for about 7 mos now.. one oral , one inhaled , one IV.. I am heading back to Denver National Jewish in october..
<br />
<br /> I know there is one other Center like DNJ that is located in N.C. You can get the info for that from like jennsmom posted NTMinfo.com ..
<br />
<br />If i can help you w/ any questions please PM me & i will give you my # ...
<br />
<br /> Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
 
L

lostindreamz

New member
my late husband cultured MAC and he was treated for it right away. He was on a harsh regimen of antibiotics for it, and i don't remember ever hearing anything about a skin rash. his doctors said it would be a long treatment (18 months), but best to keep on top of it. he was resistant to every common MAC drug there was, but the doctors figured some treatment was better than no treatment at all. he passed 2 months before his MAC treatment was to be complete.
 
L

lostindreamz

New member
my late husband cultured MAC and he was treated for it right away. He was on a harsh regimen of antibiotics for it, and i don't remember ever hearing anything about a skin rash. his doctors said it would be a long treatment (18 months), but best to keep on top of it. he was resistant to every common MAC drug there was, but the doctors figured some treatment was better than no treatment at all. he passed 2 months before his MAC treatment was to be complete.
 
L

lostindreamz

New member
my late husband cultured MAC and he was treated for it right away. He was on a harsh regimen of antibiotics for it, and i don't remember ever hearing anything about a skin rash. his doctors said it would be a long treatment (18 months), but best to keep on top of it. he was resistant to every common MAC drug there was, but the doctors figured some treatment was better than no treatment at all. he passed 2 months before his MAC treatment was to be complete.
 
L

lostindreamz

New member
my late husband cultured MAC and he was treated for it right away. He was on a harsh regimen of antibiotics for it, and i don't remember ever hearing anything about a skin rash. his doctors said it would be a long treatment (18 months), but best to keep on top of it. he was resistant to every common MAC drug there was, but the doctors figured some treatment was better than no treatment at all. he passed 2 months before his MAC treatment was to be complete.
 
L

lostindreamz

New member
my late husband cultured MAC and he was treated for it right away. He was on a harsh regimen of antibiotics for it, and i don't remember ever hearing anything about a skin rash. his doctors said it would be a long treatment (18 months), but best to keep on top of it. he was resistant to every common MAC drug there was, but the doctors figured some treatment was better than no treatment at all. he passed 2 months before his MAC treatment was to be complete.
 
T

tleigh

New member
Sonia,
I too have cultured several forms of Mycobateria. I was treated for M. cheloni several years ago. The doctors watched several cultures, taken over a period of a couple months. I had a decrease in lung function and there was not really an exacerbation that explained it. The struggle is figuring out if the myco is actively causing problems or if there is something else goin' on. The docs decided that the myco was the issue and I was treated w/ 6 mos. of IV antibiotics. It was an IV cocktail (meaning, the docs had to pick and choose what abx to use, as there was not a protocol to follow). This was 2+ years ago. Recently, I have cultured MAC, but it has not been in the last couple of cultures-so, we just keep an eye on it and keep on keeping on!

I would definitely pursue some form of treatment. It can be a long haul to treat, but if you catch it early, treatment is manageable.
 
T

tleigh

New member
Sonia,
I too have cultured several forms of Mycobateria. I was treated for M. cheloni several years ago. The doctors watched several cultures, taken over a period of a couple months. I had a decrease in lung function and there was not really an exacerbation that explained it. The struggle is figuring out if the myco is actively causing problems or if there is something else goin' on. The docs decided that the myco was the issue and I was treated w/ 6 mos. of IV antibiotics. It was an IV cocktail (meaning, the docs had to pick and choose what abx to use, as there was not a protocol to follow). This was 2+ years ago. Recently, I have cultured MAC, but it has not been in the last couple of cultures-so, we just keep an eye on it and keep on keeping on!

I would definitely pursue some form of treatment. It can be a long haul to treat, but if you catch it early, treatment is manageable.
 
T

tleigh

New member
Sonia,
I too have cultured several forms of Mycobateria. I was treated for M. cheloni several years ago. The doctors watched several cultures, taken over a period of a couple months. I had a decrease in lung function and there was not really an exacerbation that explained it. The struggle is figuring out if the myco is actively causing problems or if there is something else goin' on. The docs decided that the myco was the issue and I was treated w/ 6 mos. of IV antibiotics. It was an IV cocktail (meaning, the docs had to pick and choose what abx to use, as there was not a protocol to follow). This was 2+ years ago. Recently, I have cultured MAC, but it has not been in the last couple of cultures-so, we just keep an eye on it and keep on keeping on!

I would definitely pursue some form of treatment. It can be a long haul to treat, but if you catch it early, treatment is manageable.
 
T

tleigh

New member
Sonia,
I too have cultured several forms of Mycobateria. I was treated for M. cheloni several years ago. The doctors watched several cultures, taken over a period of a couple months. I had a decrease in lung function and there was not really an exacerbation that explained it. The struggle is figuring out if the myco is actively causing problems or if there is something else goin' on. The docs decided that the myco was the issue and I was treated w/ 6 mos. of IV antibiotics. It was an IV cocktail (meaning, the docs had to pick and choose what abx to use, as there was not a protocol to follow). This was 2+ years ago. Recently, I have cultured MAC, but it has not been in the last couple of cultures-so, we just keep an eye on it and keep on keeping on!

I would definitely pursue some form of treatment. It can be a long haul to treat, but if you catch it early, treatment is manageable.
 
T

tleigh

New member
Sonia,
I too have cultured several forms of Mycobateria. I was treated for M. cheloni several years ago. The doctors watched several cultures, taken over a period of a couple months. I had a decrease in lung function and there was not really an exacerbation that explained it. The struggle is figuring out if the myco is actively causing problems or if there is something else goin' on. The docs decided that the myco was the issue and I was treated w/ 6 mos. of IV antibiotics. It was an IV cocktail (meaning, the docs had to pick and choose what abx to use, as there was not a protocol to follow). This was 2+ years ago. Recently, I have cultured MAC, but it has not been in the last couple of cultures-so, we just keep an eye on it and keep on keeping on!

I would definitely pursue some form of treatment. It can be a long haul to treat, but if you catch it early, treatment is manageable.
 
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