has anyone ever been treated for MAC??

[greatbay]

I have MAC, mycrobacterium avium complex, was diagnosed with it in 2003. I have researched MAC extensively. MAC is in everyone, it is just a matter as to whether it activates or not. Once you have MAC, you always have it, it is just a matter of whether it is giving you symtoms or not. Right now, my MAC is giving me hell due to the fact that I can not tolerate the "best" drugs for treating it.

When I was on Rifabutin, Ethambutol, Biaxin....it was the Enthambutol that gave me the most trouble. Nausa, severe weight loss (went from 129 to 99lbs in 6 months), shakes like low sugar, etc. The Rifabutin just made my urine rust colored and I sweat orange and cried pink tears...my family thought that was pretty funny.

There are other combos of drugs now that you might try instead of the Enthambutol. Also, I hope you were made aware that the enthambutol can affect the eyes and the patient needs to be followed by an eye doctor while on it. It made me have a lot of fluid behind my right eye which affected my vision and in turn made me feel lightheaded. Make sure that you have an eye doctor follow-up as long as on ethambutol.

Wishing you all the best.

 

[greatbay]

I have MAC, mycrobacterium avium complex, was diagnosed with it in 2003. I have researched MAC extensively. MAC is in everyone, it is just a matter as to whether it activates or not. Once you have MAC, you always have it, it is just a matter of whether it is giving you symtoms or not. Right now, my MAC is giving me hell due to the fact that I can not tolerate the "best" drugs for treating it.

When I was on Rifabutin, Ethambutol, Biaxin....it was the Enthambutol that gave me the most trouble. Nausa, severe weight loss (went from 129 to 99lbs in 6 months), shakes like low sugar, etc. The Rifabutin just made my urine rust colored and I sweat orange and cried pink tears...my family thought that was pretty funny.

There are other combos of drugs now that you might try instead of the Enthambutol. Also, I hope you were made aware that the enthambutol can affect the eyes and the patient needs to be followed by an eye doctor while on it. It made me have a lot of fluid behind my right eye which affected my vision and in turn made me feel lightheaded. Make sure that you have an eye doctor follow-up as long as on ethambutol.

Wishing you all the best.

 

[dramamama]

Hi Greatbay!!!

I hope you are feeling better!!! Are you still taking gamma interferon? I think your daughter? said that you were on it.

 

[dramamama]

Hi Greatbay!!!

I hope you are feeling better!!! Are you still taking gamma interferon? I think your daughter? said that you were on it.

 

[dramamama]

Hi Greatbay!!!

I hope you are feeling better!!! Are you still taking gamma interferon? I think your daughter? said that you were on it.

 

[dramamama]

Hi Greatbay!!!

I hope you are feeling better!!! Are you still taking gamma interferon? I think your daughter? said that you were on it.

 

[dramamama]

Hi Greatbay!!!

I hope you are feeling better!!! Are you still taking gamma interferon? I think your daughter? said that you were on it.

 

[dramamama]

Hi Greatbay!!!

I hope you are feeling better!!! Are you still taking gamma interferon? I think your daughter? said that you were on it.

 

[krisjohn53223]

Thanks for all the advice. My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right?? Well, I see her on Monday (sick appointment <img src="i/expressions/face-icon-small-sad.gif" border="0"> so I will talk to her again then and see what she is thinking.

 

[krisjohn53223]

Thanks for all the advice. My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right?? Well, I see her on Monday (sick appointment <img src="i/expressions/face-icon-small-sad.gif" border="0"> so I will talk to her again then and see what she is thinking.

 

[krisjohn53223]

Thanks for all the advice. My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right?? Well, I see her on Monday (sick appointment <img src="i/expressions/face-icon-small-sad.gif" border="0"> so I will talk to her again then and see what she is thinking.

 

[krisjohn53223]

Thanks for all the advice. My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right?? Well, I see her on Monday (sick appointment <img src="i/expressions/face-icon-small-sad.gif" border="0"> so I will talk to her again then and see what she is thinking.

 

[krisjohn53223]

Thanks for all the advice. My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right?? Well, I see her on Monday (sick appointment <img src="i/expressions/face-icon-small-sad.gif" border="0"> so I will talk to her again then and see what she is thinking.

 

[krisjohn53223]

Thanks for all the advice. My MAC only flares up once in awhile and then I have problems, but my CT scans have remained the same which is why my doc was ok with letting me go without treatment. Besides, it can only be treated when active right?? Well, I see her on Monday (sick appointment <img src="i/expressions/face-icon-small-sad.gif" border="0"> so I will talk to her again then and see what she is thinking.

 

[Jem]

First off...congratulations on your sweet baby!<img src="i/expressions/face-icon-small-happy.gif" border="0">

Here is my experience with MAC:

I first cultured it about 12 years ago and underwent the triple antibiotic cocktail of Rifabutin, Ethambutol, & Biaxin for 18 months. 4 years later I had the rest of my left lung removed (for chronic massive hemoptysis in 1999). Two 1/2 years later I tested postive again so I went on the same triple antibiotic cocktail for 18 months. Both times I did not have any side effects that really bothered me.

I am tested for MAC every three months and 3 years ago I tested positive again on the 6th week of one of three cultures (they were induced sputums that were done 3 days in a row). I had a follow up sputum culture done and again on the last week (week 6) of the sputum culture it tested positive. Having only one lung I wanted to to pursue treatment although I was not showing any outward signs of the disease. After 6 months of the same triple antibiotics I had to end treatment because I lost 15 lbs and was so dizzy tired and nauseous that I could not function. They tried various alternative antibiotics but I was still not reacting well to them. My cultures tested negative after being on the triple cocktail for two months so after the six months since I was so ill and testing negative they stopped them. I have continued to be tested every three months and have remained MAC free for 2 years 8 months.

If I was to test positive again I would again pursue treatment but I would go to NJH for evaluation.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/disease-info/diseases/nts-mycobac/index.aspx">National Jewish Hospital</a>

I hope you are able to get the answers you need from your doctor. Please read through the threads of the link that Jane listed above in her post. You will get lots of good info there on questions to ask your doctor as well as many other people's experiences. If you have any other questions, just ask. I hope you remain well.

 

[Jem]

First off...congratulations on your sweet baby!<img src="i/expressions/face-icon-small-happy.gif" border="0">

Here is my experience with MAC:

I first cultured it about 12 years ago and underwent the triple antibiotic cocktail of Rifabutin, Ethambutol, & Biaxin for 18 months. 4 years later I had the rest of my left lung removed (for chronic massive hemoptysis in 1999). Two 1/2 years later I tested postive again so I went on the same triple antibiotic cocktail for 18 months. Both times I did not have any side effects that really bothered me.

I am tested for MAC every three months and 3 years ago I tested positive again on the 6th week of one of three cultures (they were induced sputums that were done 3 days in a row). I had a follow up sputum culture done and again on the last week (week 6) of the sputum culture it tested positive. Having only one lung I wanted to to pursue treatment although I was not showing any outward signs of the disease. After 6 months of the same triple antibiotics I had to end treatment because I lost 15 lbs and was so dizzy tired and nauseous that I could not function. They tried various alternative antibiotics but I was still not reacting well to them. My cultures tested negative after being on the triple cocktail for two months so after the six months since I was so ill and testing negative they stopped them. I have continued to be tested every three months and have remained MAC free for 2 years 8 months.

If I was to test positive again I would again pursue treatment but I would go to NJH for evaluation.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/disease-info/diseases/nts-mycobac/index.aspx">National Jewish Hospital</a>

I hope you are able to get the answers you need from your doctor. Please read through the threads of the link that Jane listed above in her post. You will get lots of good info there on questions to ask your doctor as well as many other people's experiences. If you have any other questions, just ask. I hope you remain well.

 

[Jem]

First off...congratulations on your sweet baby!<img src="i/expressions/face-icon-small-happy.gif" border="0">

Here is my experience with MAC:

I first cultured it about 12 years ago and underwent the triple antibiotic cocktail of Rifabutin, Ethambutol, & Biaxin for 18 months. 4 years later I had the rest of my left lung removed (for chronic massive hemoptysis in 1999). Two 1/2 years later I tested postive again so I went on the same triple antibiotic cocktail for 18 months. Both times I did not have any side effects that really bothered me.

I am tested for MAC every three months and 3 years ago I tested positive again on the 6th week of one of three cultures (they were induced sputums that were done 3 days in a row). I had a follow up sputum culture done and again on the last week (week 6) of the sputum culture it tested positive. Having only one lung I wanted to to pursue treatment although I was not showing any outward signs of the disease. After 6 months of the same triple antibiotics I had to end treatment because I lost 15 lbs and was so dizzy tired and nauseous that I could not function. They tried various alternative antibiotics but I was still not reacting well to them. My cultures tested negative after being on the triple cocktail for two months so after the six months since I was so ill and testing negative they stopped them. I have continued to be tested every three months and have remained MAC free for 2 years 8 months.

If I was to test positive again I would again pursue treatment but I would go to NJH for evaluation.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/disease-info/diseases/nts-mycobac/index.aspx">National Jewish Hospital</a>

I hope you are able to get the answers you need from your doctor. Please read through the threads of the link that Jane listed above in her post. You will get lots of good info there on questions to ask your doctor as well as many other people's experiences. If you have any other questions, just ask. I hope you remain well.

 

[Jem]

First off...congratulations on your sweet baby!<img src="i/expressions/face-icon-small-happy.gif" border="0">

Here is my experience with MAC:

I first cultured it about 12 years ago and underwent the triple antibiotic cocktail of Rifabutin, Ethambutol, & Biaxin for 18 months. 4 years later I had the rest of my left lung removed (for chronic massive hemoptysis in 1999). Two 1/2 years later I tested postive again so I went on the same triple antibiotic cocktail for 18 months. Both times I did not have any side effects that really bothered me.

I am tested for MAC every three months and 3 years ago I tested positive again on the 6th week of one of three cultures (they were induced sputums that were done 3 days in a row). I had a follow up sputum culture done and again on the last week (week 6) of the sputum culture it tested positive. Having only one lung I wanted to to pursue treatment although I was not showing any outward signs of the disease. After 6 months of the same triple antibiotics I had to end treatment because I lost 15 lbs and was so dizzy tired and nauseous that I could not function. They tried various alternative antibiotics but I was still not reacting well to them. My cultures tested negative after being on the triple cocktail for two months so after the six months since I was so ill and testing negative they stopped them. I have continued to be tested every three months and have remained MAC free for 2 years 8 months.

If I was to test positive again I would again pursue treatment but I would go to NJH for evaluation.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/disease-info/diseases/nts-mycobac/index.aspx">National Jewish Hospital</a>

I hope you are able to get the answers you need from your doctor. Please read through the threads of the link that Jane listed above in her post. You will get lots of good info there on questions to ask your doctor as well as many other people's experiences. If you have any other questions, just ask. I hope you remain well.

 

[Jem]

First off...congratulations on your sweet baby!<img src="i/expressions/face-icon-small-happy.gif" border="0">

Here is my experience with MAC:

I first cultured it about 12 years ago and underwent the triple antibiotic cocktail of Rifabutin, Ethambutol, & Biaxin for 18 months. 4 years later I had the rest of my left lung removed (for chronic massive hemoptysis in 1999). Two 1/2 years later I tested postive again so I went on the same triple antibiotic cocktail for 18 months. Both times I did not have any side effects that really bothered me.

I am tested for MAC every three months and 3 years ago I tested positive again on the 6th week of one of three cultures (they were induced sputums that were done 3 days in a row). I had a follow up sputum culture done and again on the last week (week 6) of the sputum culture it tested positive. Having only one lung I wanted to to pursue treatment although I was not showing any outward signs of the disease. After 6 months of the same triple antibiotics I had to end treatment because I lost 15 lbs and was so dizzy tired and nauseous that I could not function. They tried various alternative antibiotics but I was still not reacting well to them. My cultures tested negative after being on the triple cocktail for two months so after the six months since I was so ill and testing negative they stopped them. I have continued to be tested every three months and have remained MAC free for 2 years 8 months.

If I was to test positive again I would again pursue treatment but I would go to NJH for evaluation.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/disease-info/diseases/nts-mycobac/index.aspx">National Jewish Hospital</a>

I hope you are able to get the answers you need from your doctor. Please read through the threads of the link that Jane listed above in her post. You will get lots of good info there on questions to ask your doctor as well as many other people's experiences. If you have any other questions, just ask. I hope you remain well.

 

[Jem]

First off...congratulations on your sweet baby!<img src="i/expressions/face-icon-small-happy.gif" border="0">

Here is my experience with MAC:

I first cultured it about 12 years ago and underwent the triple antibiotic cocktail of Rifabutin, Ethambutol, & Biaxin for 18 months. 4 years later I had the rest of my left lung removed (for chronic massive hemoptysis in 1999). Two 1/2 years later I tested postive again so I went on the same triple antibiotic cocktail for 18 months. Both times I did not have any side effects that really bothered me.

I am tested for MAC every three months and 3 years ago I tested positive again on the 6th week of one of three cultures (they were induced sputums that were done 3 days in a row). I had a follow up sputum culture done and again on the last week (week 6) of the sputum culture it tested positive. Having only one lung I wanted to to pursue treatment although I was not showing any outward signs of the disease. After 6 months of the same triple antibiotics I had to end treatment because I lost 15 lbs and was so dizzy tired and nauseous that I could not function. They tried various alternative antibiotics but I was still not reacting well to them. My cultures tested negative after being on the triple cocktail for two months so after the six months since I was so ill and testing negative they stopped them. I have continued to be tested every three months and have remained MAC free for 2 years 8 months.

If I was to test positive again I would again pursue treatment but I would go to NJH for evaluation.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/disease-info/diseases/nts-mycobac/index.aspx">National Jewish Hospital</a>

I hope you are able to get the answers you need from your doctor. Please read through the threads of the link that Jane listed above in her post. You will get lots of good info there on questions to ask your doctor as well as many other people's experiences. If you have any other questions, just ask. I hope you remain well.