me with more questions

[catboogie]

hey!

my doctor said the same thing to me too, when i asked about the mucomyst. 'nobody uses that anymore.' 'it can be really irritating to some people's lungs.' 'it smells bad.' yeah, yeah, yeah. i got an RX for it anyway and tried drinking it--turns out, it made me short of breath. however, i would encourage you to try it, as everyone is different.

about the tobi: i know what you're saying about feeling like if you start it you're going to be on it forever. i don't think you should think of it that way. i think you should say, i'm going to do this month on/month off for 6 months and then see how i feel. if you feel it has helped you, then maybe continue on. if not, then maybe it's not a good fit for you. i myself am probably going to start cycling Tobi. i haven't found it very effective when i just take it for an exacerbation.

i hear what you're saying about not wanting to fix what ain't broke with your health. however, i agree with amy that this is a dangerous way to think. since you started doing the vest, i think Tobi might be another good thing to incorporate into your routine. a lot of people's cf kicks in more the older they get, so it's good for you to get a jump start on it.

good luck!

 

[catboogie]

hey!

my doctor said the same thing to me too, when i asked about the mucomyst. 'nobody uses that anymore.' 'it can be really irritating to some people's lungs.' 'it smells bad.' yeah, yeah, yeah. i got an RX for it anyway and tried drinking it--turns out, it made me short of breath. however, i would encourage you to try it, as everyone is different.

about the tobi: i know what you're saying about feeling like if you start it you're going to be on it forever. i don't think you should think of it that way. i think you should say, i'm going to do this month on/month off for 6 months and then see how i feel. if you feel it has helped you, then maybe continue on. if not, then maybe it's not a good fit for you. i myself am probably going to start cycling Tobi. i haven't found it very effective when i just take it for an exacerbation.

i hear what you're saying about not wanting to fix what ain't broke with your health. however, i agree with amy that this is a dangerous way to think. since you started doing the vest, i think Tobi might be another good thing to incorporate into your routine. a lot of people's cf kicks in more the older they get, so it's good for you to get a jump start on it.

good luck!

 

[catboogie]

hey!

my doctor said the same thing to me too, when i asked about the mucomyst. 'nobody uses that anymore.' 'it can be really irritating to some people's lungs.' 'it smells bad.' yeah, yeah, yeah. i got an RX for it anyway and tried drinking it--turns out, it made me short of breath. however, i would encourage you to try it, as everyone is different.

about the tobi: i know what you're saying about feeling like if you start it you're going to be on it forever. i don't think you should think of it that way. i think you should say, i'm going to do this month on/month off for 6 months and then see how i feel. if you feel it has helped you, then maybe continue on. if not, then maybe it's not a good fit for you. i myself am probably going to start cycling Tobi. i haven't found it very effective when i just take it for an exacerbation.

i hear what you're saying about not wanting to fix what ain't broke with your health. however, i agree with amy that this is a dangerous way to think. since you started doing the vest, i think Tobi might be another good thing to incorporate into your routine. a lot of people's cf kicks in more the older they get, so it's good for you to get a jump start on it.

good luck!

 

[catboogie]

hey!

my doctor said the same thing to me too, when i asked about the mucomyst. 'nobody uses that anymore.' 'it can be really irritating to some people's lungs.' 'it smells bad.' yeah, yeah, yeah. i got an RX for it anyway and tried drinking it--turns out, it made me short of breath. however, i would encourage you to try it, as everyone is different.

about the tobi: i know what you're saying about feeling like if you start it you're going to be on it forever. i don't think you should think of it that way. i think you should say, i'm going to do this month on/month off for 6 months and then see how i feel. if you feel it has helped you, then maybe continue on. if not, then maybe it's not a good fit for you. i myself am probably going to start cycling Tobi. i haven't found it very effective when i just take it for an exacerbation.

i hear what you're saying about not wanting to fix what ain't broke with your health. however, i agree with amy that this is a dangerous way to think. since you started doing the vest, i think Tobi might be another good thing to incorporate into your routine. a lot of people's cf kicks in more the older they get, so it's good for you to get a jump start on it.

good luck!

 

[AnD]

The only other thing that I don't think I saw mentioned here (apologies if it has!) so far is that for a few people, it can cause tightness in the lungs. I had that, had to quit it for a couple of years, and I have to make sure I do my Advair before my Tobi (check with your doctor first if you do get tightness- disclaimer <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). I thought I was just weird until I came here, and found out I'm not the only one <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I just do it with an exaserbation, due to my lovely intolerence problem (I also get IV fevers, and once, facial swelling, with anything that ends in a "-myacin" that I've had in the last few years *sigh*). I take an oral antibiotic with it these days, though, in hopes that both will work better than just the one by itself. So far, so good.

(Sorry, didn't mean to rattle on<img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[AnD]

The only other thing that I don't think I saw mentioned here (apologies if it has!) so far is that for a few people, it can cause tightness in the lungs. I had that, had to quit it for a couple of years, and I have to make sure I do my Advair before my Tobi (check with your doctor first if you do get tightness- disclaimer <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). I thought I was just weird until I came here, and found out I'm not the only one <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I just do it with an exaserbation, due to my lovely intolerence problem (I also get IV fevers, and once, facial swelling, with anything that ends in a "-myacin" that I've had in the last few years *sigh*). I take an oral antibiotic with it these days, though, in hopes that both will work better than just the one by itself. So far, so good.

(Sorry, didn't mean to rattle on<img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[AnD]

The only other thing that I don't think I saw mentioned here (apologies if it has!) so far is that for a few people, it can cause tightness in the lungs. I had that, had to quit it for a couple of years, and I have to make sure I do my Advair before my Tobi (check with your doctor first if you do get tightness- disclaimer <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). I thought I was just weird until I came here, and found out I'm not the only one <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I just do it with an exaserbation, due to my lovely intolerence problem (I also get IV fevers, and once, facial swelling, with anything that ends in a "-myacin" that I've had in the last few years *sigh*). I take an oral antibiotic with it these days, though, in hopes that both will work better than just the one by itself. So far, so good.

(Sorry, didn't mean to rattle on<img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[AnD]

The only other thing that I don't think I saw mentioned here (apologies if it has!) so far is that for a few people, it can cause tightness in the lungs. I had that, had to quit it for a couple of years, and I have to make sure I do my Advair before my Tobi (check with your doctor first if you do get tightness- disclaimer <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). I thought I was just weird until I came here, and found out I'm not the only one <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I just do it with an exaserbation, due to my lovely intolerence problem (I also get IV fevers, and once, facial swelling, with anything that ends in a "-myacin" that I've had in the last few years *sigh*). I take an oral antibiotic with it these days, though, in hopes that both will work better than just the one by itself. So far, so good.

(Sorry, didn't mean to rattle on<img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[AnD]

The only other thing that I don't think I saw mentioned here (apologies if it has!) so far is that for a few people, it can cause tightness in the lungs. I had that, had to quit it for a couple of years, and I have to make sure I do my Advair before my Tobi (check with your doctor first if you do get tightness- disclaimer <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). I thought I was just weird until I came here, and found out I'm not the only one <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I just do it with an exaserbation, due to my lovely intolerence problem (I also get IV fevers, and once, facial swelling, with anything that ends in a "-myacin" that I've had in the last few years *sigh*). I take an oral antibiotic with it these days, though, in hopes that both will work better than just the one by itself. So far, so good.

(Sorry, didn't mean to rattle on<img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[AnD]

The only other thing that I don't think I saw mentioned here (apologies if it has!) so far is that for a few people, it can cause tightness in the lungs. I had that, had to quit it for a couple of years, and I have to make sure I do my Advair before my Tobi (check with your doctor first if you do get tightness- disclaimer <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). I thought I was just weird until I came here, and found out I'm not the only one <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I just do it with an exaserbation, due to my lovely intolerence problem (I also get IV fevers, and once, facial swelling, with anything that ends in a "-myacin" that I've had in the last few years *sigh*). I take an oral antibiotic with it these days, though, in hopes that both will work better than just the one by itself. So far, so good.

(Sorry, didn't mean to rattle on<img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[mom2lillian]

wanderlost-I think you have excellent ideas. I agree that if mucomyst is something you want to try then tell them to buzz off and write you the rx (in whatever fashion will work for the personality of your doc of course).

I cycle TOBI I think it workse excellent my PA is still sensitive to TOBI and I have been cycling since dx about 6.5 years ago. I would not use it if I didnt think it super effective at keeping PA at bay because it is a royal pain (hence looking into e-flow). I think it reduces how often I get sick because sometimes I will start to feel really junky or like I am getting sick and if it coincides with when I can start TOBI then I almost always get to feeling better. I tend to get hoarse feeling but not sounding first couple days and it irritates my throat and makes me cough for first few treatments.

Let me know what you think about mucomyst.

 

[mom2lillian]

wanderlost-I think you have excellent ideas. I agree that if mucomyst is something you want to try then tell them to buzz off and write you the rx (in whatever fashion will work for the personality of your doc of course).

I cycle TOBI I think it workse excellent my PA is still sensitive to TOBI and I have been cycling since dx about 6.5 years ago. I would not use it if I didnt think it super effective at keeping PA at bay because it is a royal pain (hence looking into e-flow). I think it reduces how often I get sick because sometimes I will start to feel really junky or like I am getting sick and if it coincides with when I can start TOBI then I almost always get to feeling better. I tend to get hoarse feeling but not sounding first couple days and it irritates my throat and makes me cough for first few treatments.

Let me know what you think about mucomyst.

 

[mom2lillian]

wanderlost-I think you have excellent ideas. I agree that if mucomyst is something you want to try then tell them to buzz off and write you the rx (in whatever fashion will work for the personality of your doc of course).

I cycle TOBI I think it workse excellent my PA is still sensitive to TOBI and I have been cycling since dx about 6.5 years ago. I would not use it if I didnt think it super effective at keeping PA at bay because it is a royal pain (hence looking into e-flow). I think it reduces how often I get sick because sometimes I will start to feel really junky or like I am getting sick and if it coincides with when I can start TOBI then I almost always get to feeling better. I tend to get hoarse feeling but not sounding first couple days and it irritates my throat and makes me cough for first few treatments.

Let me know what you think about mucomyst.

 

[mom2lillian]

wanderlost-I think you have excellent ideas. I agree that if mucomyst is something you want to try then tell them to buzz off and write you the rx (in whatever fashion will work for the personality of your doc of course).

I cycle TOBI I think it workse excellent my PA is still sensitive to TOBI and I have been cycling since dx about 6.5 years ago. I would not use it if I didnt think it super effective at keeping PA at bay because it is a royal pain (hence looking into e-flow). I think it reduces how often I get sick because sometimes I will start to feel really junky or like I am getting sick and if it coincides with when I can start TOBI then I almost always get to feeling better. I tend to get hoarse feeling but not sounding first couple days and it irritates my throat and makes me cough for first few treatments.

Let me know what you think about mucomyst.

 

[mom2lillian]

wanderlost-I think you have excellent ideas. I agree that if mucomyst is something you want to try then tell them to buzz off and write you the rx (in whatever fashion will work for the personality of your doc of course).

I cycle TOBI I think it workse excellent my PA is still sensitive to TOBI and I have been cycling since dx about 6.5 years ago. I would not use it if I didnt think it super effective at keeping PA at bay because it is a royal pain (hence looking into e-flow). I think it reduces how often I get sick because sometimes I will start to feel really junky or like I am getting sick and if it coincides with when I can start TOBI then I almost always get to feeling better. I tend to get hoarse feeling but not sounding first couple days and it irritates my throat and makes me cough for first few treatments.

Let me know what you think about mucomyst.

 

[mom2lillian]

wanderlost-I think you have excellent ideas. I agree that if mucomyst is something you want to try then tell them to buzz off and write you the rx (in whatever fashion will work for the personality of your doc of course).

I cycle TOBI I think it workse excellent my PA is still sensitive to TOBI and I have been cycling since dx about 6.5 years ago. I would not use it if I didnt think it super effective at keeping PA at bay because it is a royal pain (hence looking into e-flow). I think it reduces how often I get sick because sometimes I will start to feel really junky or like I am getting sick and if it coincides with when I can start TOBI then I almost always get to feeling better. I tend to get hoarse feeling but not sounding first couple days and it irritates my throat and makes me cough for first few treatments.

Let me know what you think about mucomyst.

 

[lightNlife]

I recently switched from Creon to Pancreacarb and I LOVE it. The difference is incredible. I was taking anywhere from 6-8 creon and still having sloppy, greasy, frequent BMs. I've been on Pancreacarb now for 10 days and I only need 4 pills with a big meal, and my BMs are so much better. I've even gained weight! I hope that you have the same success I do.

I've been on TOBI now for about 10 years. I do one month on, one month off. I can definitely notice a difference in how I feel. A few days before I'm due to start it up again, I get a bit run down, but then once I start it, I feel better again. The only negative thing I've experienced with it is that the first day or so of it, I have a bit of hemoptysis. However, now that I'm on Tazacef in between months of TOBI, I haven't had that problem.

People do still use mucomyst. I used to use it for sinus stuff and a special mask). It stinks, but it works.

Good luck and best wishes.

 

[lightNlife]

I recently switched from Creon to Pancreacarb and I LOVE it. The difference is incredible. I was taking anywhere from 6-8 creon and still having sloppy, greasy, frequent BMs. I've been on Pancreacarb now for 10 days and I only need 4 pills with a big meal, and my BMs are so much better. I've even gained weight! I hope that you have the same success I do.

I've been on TOBI now for about 10 years. I do one month on, one month off. I can definitely notice a difference in how I feel. A few days before I'm due to start it up again, I get a bit run down, but then once I start it, I feel better again. The only negative thing I've experienced with it is that the first day or so of it, I have a bit of hemoptysis. However, now that I'm on Tazacef in between months of TOBI, I haven't had that problem.

People do still use mucomyst. I used to use it for sinus stuff and a special mask). It stinks, but it works.

Good luck and best wishes.

 

[lightNlife]

I recently switched from Creon to Pancreacarb and I LOVE it. The difference is incredible. I was taking anywhere from 6-8 creon and still having sloppy, greasy, frequent BMs. I've been on Pancreacarb now for 10 days and I only need 4 pills with a big meal, and my BMs are so much better. I've even gained weight! I hope that you have the same success I do.

I've been on TOBI now for about 10 years. I do one month on, one month off. I can definitely notice a difference in how I feel. A few days before I'm due to start it up again, I get a bit run down, but then once I start it, I feel better again. The only negative thing I've experienced with it is that the first day or so of it, I have a bit of hemoptysis. However, now that I'm on Tazacef in between months of TOBI, I haven't had that problem.

People do still use mucomyst. I used to use it for sinus stuff and a special mask). It stinks, but it works.

Good luck and best wishes.

 

[lightNlife]

I recently switched from Creon to Pancreacarb and I LOVE it. The difference is incredible. I was taking anywhere from 6-8 creon and still having sloppy, greasy, frequent BMs. I've been on Pancreacarb now for 10 days and I only need 4 pills with a big meal, and my BMs are so much better. I've even gained weight! I hope that you have the same success I do.

I've been on TOBI now for about 10 years. I do one month on, one month off. I can definitely notice a difference in how I feel. A few days before I'm due to start it up again, I get a bit run down, but then once I start it, I feel better again. The only negative thing I've experienced with it is that the first day or so of it, I have a bit of hemoptysis. However, now that I'm on Tazacef in between months of TOBI, I haven't had that problem.

People do still use mucomyst. I used to use it for sinus stuff and a special mask). It stinks, but it works.

Good luck and best wishes.