Do you feel good all the time

[ladybug]

strange! i feel entirely the same! its odd cause i used to get these huge spikes in FEV1 (even beyond baseline) after 2-3 weeks of IVs, but lately, it just reaches baseline or a point or two higher. this usually leads me to begging them to keep me on IVs, which they do for antoher 2-3 weeks and again, my number usually only gains a percent or two. i used to get 8-10% above baseline and felt amazing!

what are you FEV1 numbers like when you come off meds? is it possible they could just leave you on them an additional week or so to see if you can get that "feeling" back? i know this can breed resistance though (which i'm quickly learning with my own cultures.. urgh), and for me, i still never felt GREAT, even after the additional couple of weeks.

anyway, i think its odd that we're all kinda experiencing this. maybe it is just something that will happen with age... we won't get the "high" we used to get when we were young. it would be interesting if some tx peeps (young and old) could respond with what they felt like as their disease progressed after IV abx. my guess is, they never felt amazing after rounds of IVs either. leading me to think, its just progression of the disease....

 

[ladybug]

strange! i feel entirely the same! its odd cause i used to get these huge spikes in FEV1 (even beyond baseline) after 2-3 weeks of IVs, but lately, it just reaches baseline or a point or two higher. this usually leads me to begging them to keep me on IVs, which they do for antoher 2-3 weeks and again, my number usually only gains a percent or two. i used to get 8-10% above baseline and felt amazing!

what are you FEV1 numbers like when you come off meds? is it possible they could just leave you on them an additional week or so to see if you can get that "feeling" back? i know this can breed resistance though (which i'm quickly learning with my own cultures.. urgh), and for me, i still never felt GREAT, even after the additional couple of weeks.

anyway, i think its odd that we're all kinda experiencing this. maybe it is just something that will happen with age... we won't get the "high" we used to get when we were young. it would be interesting if some tx peeps (young and old) could respond with what they felt like as their disease progressed after IV abx. my guess is, they never felt amazing after rounds of IVs either. leading me to think, its just progression of the disease....

 

[ladybug]

strange! i feel entirely the same! its odd cause i used to get these huge spikes in FEV1 (even beyond baseline) after 2-3 weeks of IVs, but lately, it just reaches baseline or a point or two higher. this usually leads me to begging them to keep me on IVs, which they do for antoher 2-3 weeks and again, my number usually only gains a percent or two. i used to get 8-10% above baseline and felt amazing!

what are you FEV1 numbers like when you come off meds? is it possible they could just leave you on them an additional week or so to see if you can get that "feeling" back? i know this can breed resistance though (which i'm quickly learning with my own cultures.. urgh), and for me, i still never felt GREAT, even after the additional couple of weeks.

anyway, i think its odd that we're all kinda experiencing this. maybe it is just something that will happen with age... we won't get the "high" we used to get when we were young. it would be interesting if some tx peeps (young and old) could respond with what they felt like as their disease progressed after IV abx. my guess is, they never felt amazing after rounds of IVs either. leading me to think, its just progression of the disease....

 

[ladybug]

strange! i feel entirely the same! its odd cause i used to get these huge spikes in FEV1 (even beyond baseline) after 2-3 weeks of IVs, but lately, it just reaches baseline or a point or two higher. this usually leads me to begging them to keep me on IVs, which they do for antoher 2-3 weeks and again, my number usually only gains a percent or two. i used to get 8-10% above baseline and felt amazing!

what are you FEV1 numbers like when you come off meds? is it possible they could just leave you on them an additional week or so to see if you can get that "feeling" back? i know this can breed resistance though (which i'm quickly learning with my own cultures.. urgh), and for me, i still never felt GREAT, even after the additional couple of weeks.

anyway, i think its odd that we're all kinda experiencing this. maybe it is just something that will happen with age... we won't get the "high" we used to get when we were young. it would be interesting if some tx peeps (young and old) could respond with what they felt like as their disease progressed after IV abx. my guess is, they never felt amazing after rounds of IVs either. leading me to think, its just progression of the disease....

 

[ladybug]

strange! i feel entirely the same! its odd cause i used to get these huge spikes in FEV1 (even beyond baseline) after 2-3 weeks of IVs, but lately, it just reaches baseline or a point or two higher. this usually leads me to begging them to keep me on IVs, which they do for antoher 2-3 weeks and again, my number usually only gains a percent or two. i used to get 8-10% above baseline and felt amazing!
<br />
<br />what are you FEV1 numbers like when you come off meds? is it possible they could just leave you on them an additional week or so to see if you can get that "feeling" back? i know this can breed resistance though (which i'm quickly learning with my own cultures.. urgh), and for me, i still never felt GREAT, even after the additional couple of weeks.
<br />
<br />anyway, i think its odd that we're all kinda experiencing this. maybe it is just something that will happen with age... we won't get the "high" we used to get when we were young. it would be interesting if some tx peeps (young and old) could respond with what they felt like as their disease progressed after IV abx. my guess is, they never felt amazing after rounds of IVs either. leading me to think, its just progression of the disease....

 

[Giggles]

I can accept not getting the high. But I just notice daily life is different than it use to be. I just don't always feel that great... UGH

 

[Giggles]

I can accept not getting the high. But I just notice daily life is different than it use to be. I just don't always feel that great... UGH

 

[Giggles]

I can accept not getting the high. But I just notice daily life is different than it use to be. I just don't always feel that great... UGH

 

[Giggles]

I can accept not getting the high. But I just notice daily life is different than it use to be. I just don't always feel that great... UGH

 

[Giggles]

I can accept not getting the high. But I just notice daily life is different than it use to be. I just don't always feel that great... UGH

 

[melx]

i think iv's and really all antibiotics make the bacteria smarter and stronger. the first week after my Tobi months the gunk gets crazy and so much more of it. my first ever round of iv's it took a while for the gunk to come back.... now it is just a matter of days. we need the antibiotics to get us better and yet they also make our disease harder to treat. it is a vicious circle. i have had antibiotic phobia all my life .... despite how they have helped me, i also know they have strengthened the bacteria. i find it amazing that bacteria can be intelligent enough to find a way to survive.

 

[melx]

i think iv's and really all antibiotics make the bacteria smarter and stronger. the first week after my Tobi months the gunk gets crazy and so much more of it. my first ever round of iv's it took a while for the gunk to come back.... now it is just a matter of days. we need the antibiotics to get us better and yet they also make our disease harder to treat. it is a vicious circle. i have had antibiotic phobia all my life .... despite how they have helped me, i also know they have strengthened the bacteria. i find it amazing that bacteria can be intelligent enough to find a way to survive.

 

[melx]

i think iv's and really all antibiotics make the bacteria smarter and stronger. the first week after my Tobi months the gunk gets crazy and so much more of it. my first ever round of iv's it took a while for the gunk to come back.... now it is just a matter of days. we need the antibiotics to get us better and yet they also make our disease harder to treat. it is a vicious circle. i have had antibiotic phobia all my life .... despite how they have helped me, i also know they have strengthened the bacteria. i find it amazing that bacteria can be intelligent enough to find a way to survive.

 

[melx]

i think iv's and really all antibiotics make the bacteria smarter and stronger. the first week after my Tobi months the gunk gets crazy and so much more of it. my first ever round of iv's it took a while for the gunk to come back.... now it is just a matter of days. we need the antibiotics to get us better and yet they also make our disease harder to treat. it is a vicious circle. i have had antibiotic phobia all my life .... despite how they have helped me, i also know they have strengthened the bacteria. i find it amazing that bacteria can be intelligent enough to find a way to survive.

 

[melx]

i think iv's and really all antibiotics make the bacteria smarter and stronger. the first week after my Tobi months the gunk gets crazy and so much more of it. my first ever round of iv's it took a while for the gunk to come back.... now it is just a matter of days. we need the antibiotics to get us better and yet they also make our disease harder to treat. it is a vicious circle. i have had antibiotic phobia all my life .... despite how they have helped me, i also know they have strengthened the bacteria. i find it amazing that bacteria can be intelligent enough to find a way to survive.