What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

MAC

L

LouLou

New member
Marie, I don't have experience with MAC but I just wanted to chime in and second the suggestion to get a 2nd opinion about your care plan. It something people do even if they are very happy with their care. Easy for me to say but...try to stay positive. It stress and sadness effect our health. Good luck!
 
L

LouLou

New member
Marie, I don't have experience with MAC but I just wanted to chime in and second the suggestion to get a 2nd opinion about your care plan. It something people do even if they are very happy with their care. Easy for me to say but...try to stay positive. It stress and sadness effect our health. Good luck!
 
L

LouLou

New member
Marie, I don't have experience with MAC but I just wanted to chime in and second the suggestion to get a 2nd opinion about your care plan. It something people do even if they are very happy with their care. Easy for me to say but...try to stay positive. It stress and sadness effect our health. Good luck!
 
L

LouLou

New member
Marie, I don't have experience with MAC but I just wanted to chime in and second the suggestion to get a 2nd opinion about your care plan. It something people do even if they are very happy with their care. Easy for me to say but...try to stay positive. It stress and sadness effect our health. Good luck!
 
L

LouLou

New member
Marie, I don't have experience with MAC but I just wanted to chime in and second the suggestion to get a 2nd opinion about your care plan. It something people do even if they are very happy with their care. Easy for me to say but...try to stay positive. It stress and sadness effect our health. Good luck!
 
C

Cerulean

New member
Miss T. I have had the SAME experience as you have. I stayed out of the hospital all my life and only recently been twice. I too think I got it in the hospital. My FEV1s haven't been declining either. They told me not to take zithromax as well and am only on clarithromycin, and I think that is for the M Abcsessus I have. So I don't know why they aren't treating it. I hope it isn't because the treatments are too expensive or long to justify it. The only thing I can think of is that the treatment for MAC and the treatment for M Abcsessus is counterproductive.
 
C

Cerulean

New member
Miss T. I have had the SAME experience as you have. I stayed out of the hospital all my life and only recently been twice. I too think I got it in the hospital. My FEV1s haven't been declining either. They told me not to take zithromax as well and am only on clarithromycin, and I think that is for the M Abcsessus I have. So I don't know why they aren't treating it. I hope it isn't because the treatments are too expensive or long to justify it. The only thing I can think of is that the treatment for MAC and the treatment for M Abcsessus is counterproductive.
 
C

Cerulean

New member
Miss T. I have had the SAME experience as you have. I stayed out of the hospital all my life and only recently been twice. I too think I got it in the hospital. My FEV1s haven't been declining either. They told me not to take zithromax as well and am only on clarithromycin, and I think that is for the M Abcsessus I have. So I don't know why they aren't treating it. I hope it isn't because the treatments are too expensive or long to justify it. The only thing I can think of is that the treatment for MAC and the treatment for M Abcsessus is counterproductive.
 
C

Cerulean

New member
Miss T. I have had the SAME experience as you have. I stayed out of the hospital all my life and only recently been twice. I too think I got it in the hospital. My FEV1s haven't been declining either. They told me not to take zithromax as well and am only on clarithromycin, and I think that is for the M Abcsessus I have. So I don't know why they aren't treating it. I hope it isn't because the treatments are too expensive or long to justify it. The only thing I can think of is that the treatment for MAC and the treatment for M Abcsessus is counterproductive.
 
C

Cerulean

New member
Miss T. I have had the SAME experience as you have. I stayed out of the hospital all my life and only recently been twice. I too think I got it in the hospital. My FEV1s haven't been declining either. They told me not to take zithromax as well and am only on clarithromycin, and I think that is for the M Abcsessus I have. So I don't know why they aren't treating it. I hope it isn't because the treatments are too expensive or long to justify it. The only thing I can think of is that the treatment for MAC and the treatment for M Abcsessus is counterproductive.
 
C

CountryGirl

New member
Hey, I can't really give you any advice on MAC prior to transplant but I cultured it afterwards. I was taking Zithromax when I cultured it and they definitely did not take me off of it, I stayed on it. They also started me on Ethambutal and Mycobutin...Im supposed to stay on those for a year after culturing negative for MAC.

MAC I can't really say affected my pfts all that much, I was dealing with rejection at the same time. It didn't cause me to need extra O2 and after being on the antibiotics they prescribed for a month I was negative for MAC. So they seemed to work extremely well and it's over a year later and I'm still negative for it.
 
C

CountryGirl

New member
Hey, I can't really give you any advice on MAC prior to transplant but I cultured it afterwards. I was taking Zithromax when I cultured it and they definitely did not take me off of it, I stayed on it. They also started me on Ethambutal and Mycobutin...Im supposed to stay on those for a year after culturing negative for MAC.

MAC I can't really say affected my pfts all that much, I was dealing with rejection at the same time. It didn't cause me to need extra O2 and after being on the antibiotics they prescribed for a month I was negative for MAC. So they seemed to work extremely well and it's over a year later and I'm still negative for it.
 
C

CountryGirl

New member
Hey, I can't really give you any advice on MAC prior to transplant but I cultured it afterwards. I was taking Zithromax when I cultured it and they definitely did not take me off of it, I stayed on it. They also started me on Ethambutal and Mycobutin...Im supposed to stay on those for a year after culturing negative for MAC.

MAC I can't really say affected my pfts all that much, I was dealing with rejection at the same time. It didn't cause me to need extra O2 and after being on the antibiotics they prescribed for a month I was negative for MAC. So they seemed to work extremely well and it's over a year later and I'm still negative for it.
 
C

CountryGirl

New member
Hey, I can't really give you any advice on MAC prior to transplant but I cultured it afterwards. I was taking Zithromax when I cultured it and they definitely did not take me off of it, I stayed on it. They also started me on Ethambutal and Mycobutin...Im supposed to stay on those for a year after culturing negative for MAC.

MAC I can't really say affected my pfts all that much, I was dealing with rejection at the same time. It didn't cause me to need extra O2 and after being on the antibiotics they prescribed for a month I was negative for MAC. So they seemed to work extremely well and it's over a year later and I'm still negative for it.
 
C

CountryGirl

New member
Hey, I can't really give you any advice on MAC prior to transplant but I cultured it afterwards. I was taking Zithromax when I cultured it and they definitely did not take me off of it, I stayed on it. They also started me on Ethambutal and Mycobutin...Im supposed to stay on those for a year after culturing negative for MAC.
<br />
<br />MAC I can't really say affected my pfts all that much, I was dealing with rejection at the same time. It didn't cause me to need extra O2 and after being on the antibiotics they prescribed for a month I was negative for MAC. So they seemed to work extremely well and it's over a year later and I'm still negative for it.
 
You must log in or register to reply here.
Top