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View Full Version : Do you believe in doing every and any treatment and Medication



Giggles
05-06-2009, 12:56 PM
I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????

I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.

THanks
Jennifer 37 years old with CF and CFRD

Giggles
05-06-2009, 12:56 PM
I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????

I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.

THanks
Jennifer 37 years old with CF and CFRD

Giggles
05-06-2009, 12:56 PM
I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????

I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.

THanks
Jennifer 37 years old with CF and CFRD

Giggles
05-06-2009, 12:56 PM
I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????

I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.

THanks
Jennifer 37 years old with CF and CFRD

Giggles
05-06-2009, 12:56 PM
I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????
<br />
<br />I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.
<br />
<br />THanks
<br />Jennifer 37 years old with CF and CFRD

saveferris2009
05-06-2009, 01:25 PM
I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.

Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?

So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?

For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

saveferris2009
05-06-2009, 01:25 PM
I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.

Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?

So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?

For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

saveferris2009
05-06-2009, 01:25 PM
I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.

Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?

So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?

For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

saveferris2009
05-06-2009, 01:25 PM
I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.

Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?

So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?

For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

saveferris2009
05-06-2009, 01:25 PM
I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.
<br />
<br />Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?
<br />
<br />So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?
<br />
<br />For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).
<br />
<br />

JazzysMom
05-06-2009, 01:38 PM
I do understand what you are saying. I also think it really depends on what your philosophy in life is.

I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.

I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.

I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.

There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.

IMHO I also think that my body responds differently to the same thing at different times.

HUGS

JazzysMom
05-06-2009, 01:38 PM
I do understand what you are saying. I also think it really depends on what your philosophy in life is.

I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.

I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.

I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.

There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.

IMHO I also think that my body responds differently to the same thing at different times.

HUGS

JazzysMom
05-06-2009, 01:38 PM
I do understand what you are saying. I also think it really depends on what your philosophy in life is.

I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.

I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.

I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.

There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.

IMHO I also think that my body responds differently to the same thing at different times.

HUGS

JazzysMom
05-06-2009, 01:38 PM
I do understand what you are saying. I also think it really depends on what your philosophy in life is.

I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.

I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.

I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.

There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.

IMHO I also think that my body responds differently to the same thing at different times.

HUGS

JazzysMom
05-06-2009, 01:38 PM
I do understand what you are saying. I also think it really depends on what your philosophy in life is.
<br />
<br />I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.
<br />
<br />I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.
<br />
<br />I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.
<br />
<br />There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.
<br />
<br />IMHO I also think that my body responds differently to the same thing at different times.
<br />
<br />HUGS

Diane
05-06-2009, 05:07 PM
This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Diane
05-06-2009, 05:07 PM
This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Diane
05-06-2009, 05:07 PM
This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Diane
05-06-2009, 05:07 PM
This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Diane
05-06-2009, 05:07 PM
This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
<br />Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
<br />So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
<br />Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Nightwriter
05-06-2009, 06:09 PM
Jennifer,

I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.

Nightwriter
05-06-2009, 06:09 PM
Jennifer,

I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.

Nightwriter
05-06-2009, 06:09 PM
Jennifer,

I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.

Nightwriter
05-06-2009, 06:09 PM
Jennifer,

I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.

Nightwriter
05-06-2009, 06:09 PM
Jennifer,
<br />
<br />I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.

NYCLawGirl
05-06-2009, 09:08 PM
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):

i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.

as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.

zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.

bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.

also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.

good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!

NYCLawGirl
05-06-2009, 09:08 PM
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):

i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.

as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.

zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.

bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.

also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.

good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!

NYCLawGirl
05-06-2009, 09:08 PM
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):

i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.

as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.

zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.

bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.

also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.

good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!

NYCLawGirl
05-06-2009, 09:08 PM
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):

i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.

as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.

zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.

bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.

also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.

good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!

NYCLawGirl
05-06-2009, 09:08 PM
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):
<br />
<br />i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.
<br />
<br />as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.
<br />
<br />zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.
<br />
<br />bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.
<br />
<br />also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.
<br />
<br />good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!

Giggles
05-06-2009, 09:28 PM
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.

Jennifer 37 with CF and CFRD

Giggles
05-06-2009, 09:28 PM
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.

Jennifer 37 with CF and CFRD

Giggles
05-06-2009, 09:28 PM
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.

Jennifer 37 with CF and CFRD

Giggles
05-06-2009, 09:28 PM
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.

Jennifer 37 with CF and CFRD

Giggles
05-06-2009, 09:28 PM
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.
<br />
<br />Jennifer 37 with CF and CFRD

Jeana
05-06-2009, 10:25 PM
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Jeana
05-06-2009, 10:25 PM
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Jeana
05-06-2009, 10:25 PM
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Jeana
05-06-2009, 10:25 PM
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Jeana
05-06-2009, 10:25 PM
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">

dasjsmum
05-06-2009, 10:41 PM
I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.

I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.

My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).

He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).

I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.

So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

dasjsmum
05-06-2009, 10:41 PM
I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.

I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.

My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).

He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).

I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.

So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

dasjsmum
05-06-2009, 10:41 PM
I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.

I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.

My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).

He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).

I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.

So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

dasjsmum
05-06-2009, 10:41 PM
I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.

I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.

My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).

He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).

I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.

So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

dasjsmum
05-06-2009, 10:41 PM
I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.
<br />
<br />I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.
<br />
<br />My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).
<br />
<br />He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).
<br />
<br /> I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.
<br />
<br />So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

dbtoo
05-07-2009, 01:03 AM
I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

dbtoo
05-07-2009, 01:03 AM
I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

dbtoo
05-07-2009, 01:03 AM
I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

dbtoo
05-07-2009, 01:03 AM
I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

dbtoo
05-07-2009, 01:03 AM
I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

Nightwriter
05-07-2009, 05:32 PM
Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.

Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.

And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.

I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.

She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).

So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.

Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.

Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.

In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.

Nightwriter
05-07-2009, 05:32 PM
Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.

Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.

And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.

I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.

She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).

So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.

Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.

Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.

In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.

Nightwriter
05-07-2009, 05:32 PM
Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.

Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.

And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.

I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.

She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).

So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.

Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.

Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.

In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.

Nightwriter
05-07-2009, 05:32 PM
Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.

Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.

And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.

I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.

She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).

So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.

Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.

Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.

In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.

Nightwriter
05-07-2009, 05:32 PM
Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.
<br />
<br />Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.
<br />
<br />And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.
<br />
<br />I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.
<br />
<br />She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).
<br />
<br />So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.
<br />
<br />Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.
<br />
<br />Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.
<br />
<br />In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.
<br />
<br />
<br />
<br />

my65roses4me
05-08-2009, 02:51 AM
I love this topic!
When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
I have learned over the years that not every treatment is good for every cfer.
I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
So this topic peaked my interest and I will follow it.
Thanks

my65roses4me
05-08-2009, 02:51 AM
I love this topic!
When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
I have learned over the years that not every treatment is good for every cfer.
I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
So this topic peaked my interest and I will follow it.
Thanks

my65roses4me
05-08-2009, 02:51 AM
I love this topic!
When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
I have learned over the years that not every treatment is good for every cfer.
I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
So this topic peaked my interest and I will follow it.
Thanks

my65roses4me
05-08-2009, 02:51 AM
I love this topic!
When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
I have learned over the years that not every treatment is good for every cfer.
I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
So this topic peaked my interest and I will follow it.
Thanks

my65roses4me
05-08-2009, 02:51 AM
I love this topic!
<br />When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
<br />I have learned over the years that not every treatment is good for every cfer.
<br />I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
<br />I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
<br />I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
<br />So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
<br />So this topic peaked my interest and I will follow it.
<br />Thanks
<br />

Nightwriter
05-08-2009, 05:57 AM
Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.

What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.

I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.

The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.

From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.

There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.

A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.

The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).

I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.

I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).

This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....

So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.

Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

Nightwriter
05-08-2009, 05:57 AM
Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.

What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.

I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.

The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.

From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.

There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.

A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.

The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).

I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.

I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).

This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....

So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.

Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

Nightwriter
05-08-2009, 05:57 AM
Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.

What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.

I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.

The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.

From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.

There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.

A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.

The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).

I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.

I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).

This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....

So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.

Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

Nightwriter
05-08-2009, 05:57 AM
Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.

What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.

I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.

The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.

From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.

There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.

A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.

The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).

I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.

I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).

This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....

So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.

Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

Nightwriter
05-08-2009, 05:57 AM
Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.
<br />
<br />What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.
<br />
<br />I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.
<br />
<br />The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.
<br />
<br />From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.
<br />
<br />There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.
<br />
<br />A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.
<br />
<br />The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).
<br />
<br />I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.
<br />
<br />I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).
<br />
<br />This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....
<br />
<br />So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.
<br />
<br />Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a><br />
<br />

jdubbs
05-08-2009, 12:25 PM
For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.

In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)

I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.

I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.

So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs
05-08-2009, 12:25 PM
For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.

In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)

I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.

I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.

So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs
05-08-2009, 12:25 PM
For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.

In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)

I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.

I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.

So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs
05-08-2009, 12:25 PM
For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.

In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)

I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.

I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.

So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs
05-08-2009, 12:25 PM
For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.
<br />
<br />In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)
<br />
<br />I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.
<br />
<br />I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.
<br />
<br />So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.
<br />
<br />
<br />

jdubbs
05-08-2009, 12:53 PM
I just want to add that dealing with CF is a bit like being stranded on a deserted island. Are you better off crafting a makeshift boat and sailing for it? Or should you stay put and hope for rescue? Who knows...

jdubbs
05-08-2009, 12:53 PM
I just want to add that dealing with CF is a bit like being stranded on a deserted island. Are you better off crafting a makeshift boat and sailing for it? Or should you stay put and hope for rescue? Who knows...

jdubbs
05-08-2009, 12:53 PM
I just want to add that dealing with CF is a bit like being stranded on a deserted island. Are you better off crafting a makeshift boat and sailing for it? Or should you stay put and hope for rescue? Who knows...

jdubbs
05-08-2009, 12:53 PM
I just want to add that dealing with CF is a bit like being stranded on a deserted island. Are you better off crafting a makeshift boat and sailing for it? Or should you stay put and hope for rescue? Who knows...

jdubbs
05-08-2009, 12:53 PM
I just want to add that dealing with CF is a bit like being stranded on a deserted island. Are you better off crafting a makeshift boat and sailing for it? Or should you stay put and hope for rescue? Who knows...

Gnub
09-07-2009, 08:56 PM
I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old

Gnub
09-07-2009, 08:56 PM
I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old

Gnub
09-07-2009, 08:56 PM
I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old

Gnub
09-07-2009, 08:56 PM
I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old

Gnub
09-07-2009, 08:56 PM
I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old

dasjsmum
09-07-2009, 09:49 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gnub</b></i>

I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old</end quote></div>

Hi Gnub, just a query, are you aware that the Azithro is used for inflammation? It's not used as an antibiotic against pseudo or for its antibiotic actions, but it anti inflammatory actions.

Tobi is an antibiotic used against pseudo...now, we dont have Tobi here (which to me sounds like a powder inhaled form? Or is it just nebbed?).

So, in the US for example, you are all put on Tobi as a matter of course (because it is available to you). We dont have it and only have Tobramycin (nebbed or IV) when having an exacerbation.

It would be interesting to compare outcomes for say the US on Tobi (one month on one off), compared to other countries where it's not available and see if it makes a difference to the amount of exacerbations etc., between the two.

dasjsmum
09-07-2009, 09:49 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gnub</b></i>

I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old</end quote></div>

Hi Gnub, just a query, are you aware that the Azithro is used for inflammation? It's not used as an antibiotic against pseudo or for its antibiotic actions, but it anti inflammatory actions.

Tobi is an antibiotic used against pseudo...now, we dont have Tobi here (which to me sounds like a powder inhaled form? Or is it just nebbed?).

So, in the US for example, you are all put on Tobi as a matter of course (because it is available to you). We dont have it and only have Tobramycin (nebbed or IV) when having an exacerbation.

It would be interesting to compare outcomes for say the US on Tobi (one month on one off), compared to other countries where it's not available and see if it makes a difference to the amount of exacerbations etc., between the two.

dasjsmum
09-07-2009, 09:49 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gnub</b></i>

I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old</end quote></div>

Hi Gnub, just a query, are you aware that the Azithro is used for inflammation? It's not used as an antibiotic against pseudo or for its antibiotic actions, but it anti inflammatory actions.

Tobi is an antibiotic used against pseudo...now, we dont have Tobi here (which to me sounds like a powder inhaled form? Or is it just nebbed?).

So, in the US for example, you are all put on Tobi as a matter of course (because it is available to you). We dont have it and only have Tobramycin (nebbed or IV) when having an exacerbation.

It would be interesting to compare outcomes for say the US on Tobi (one month on one off), compared to other countries where it's not available and see if it makes a difference to the amount of exacerbations etc., between the two.

dasjsmum
09-07-2009, 09:49 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gnub</b></i>

I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.

I want to know if anyone can give me advice on how to pursue this. Thanks

26 years old</end quote>

Hi Gnub, just a query, are you aware that the Azithro is used for inflammation? It's not used as an antibiotic against pseudo or for its antibiotic actions, but it anti inflammatory actions.

Tobi is an antibiotic used against pseudo...now, we dont have Tobi here (which to me sounds like a powder inhaled form? Or is it just nebbed?).

So, in the US for example, you are all put on Tobi as a matter of course (because it is available to you). We dont have it and only have Tobramycin (nebbed or IV) when having an exacerbation.

It would be interesting to compare outcomes for say the US on Tobi (one month on one off), compared to other countries where it's not available and see if it makes a difference to the amount of exacerbations etc., between the two.

dasjsmum
09-07-2009, 09:49 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gnub</b></i>
<br />
<br />I do not believe it is absolutely necessary to take every medication under the sun. I am on both TOBI and Zithromax. The thing is that they both are antibiotics that treat the exact same problem (Pseudomonas aeruginosa). The only difference is that one is inhaled and the other is oral. I constantly want to stop the Zithromax (and have done so on several occasions), yet ever time I do, I am put right back on it against my protests. In my eyes, if one does the intended job and my FEV1 results are positive when I have my PFT's, why do I need both. I take creons, ADEK's, Ursodiol, and vitamin D supplements (when my levels are low). I even take Cipro (for Staphylococcus aureus treatments) if my doctor puts me on a 2-week program. All of them treat different things, and all of them keep my healthy.
<br />
<br />I want to know if anyone can give me advice on how to pursue this. Thanks
<br />
<br />26 years old</end quote>
<br />
<br />Hi Gnub, just a query, are you aware that the Azithro is used for inflammation? It's not used as an antibiotic against pseudo or for its antibiotic actions, but it anti inflammatory actions.
<br />
<br />Tobi is an antibiotic used against pseudo...now, we dont have Tobi here (which to me sounds like a powder inhaled form? Or is it just nebbed?).
<br />
<br />So, in the US for example, you are all put on Tobi as a matter of course (because it is available to you). We dont have it and only have Tobramycin (nebbed or IV) when having an exacerbation.
<br />
<br />It would be interesting to compare outcomes for say the US on Tobi (one month on one off), compared to other countries where it's not available and see if it makes a difference to the amount of exacerbations etc., between the two.

Gnub
09-08-2009, 12:20 AM
Hi dasjsmum,

Thanks for the reply. I became aware that Zithromax was anti-inflammation about 30 minutes after I posted (believed it was for the psuedomonas), but I have found alternative holistic approaches for anti-inflammation. I don't notice any difference between when I am on or off Zithromax. The Tobi (Tobramycin) I take is the nebulizer (month on month off). But still, if there are alternative therapies that work that aren't prescribed, aren't completely necessary, or that break the bank, then that should be an available choice that others should accept. Just because a drug is prescribed doesn't necessarily mean that you need it. It really depends on the person and what they can tolerate and what works for them.

26 years old

Gnub
09-08-2009, 12:20 AM
Hi dasjsmum,

Thanks for the reply. I became aware that Zithromax was anti-inflammation about 30 minutes after I posted (believed it was for the psuedomonas), but I have found alternative holistic approaches for anti-inflammation. I don't notice any difference between when I am on or off Zithromax. The Tobi (Tobramycin) I take is the nebulizer (month on month off). But still, if there are alternative therapies that work that aren't prescribed, aren't completely necessary, or that break the bank, then that should be an available choice that others should accept. Just because a drug is prescribed doesn't necessarily mean that you need it. It really depends on the person and what they can tolerate and what works for them.

26 years old

Gnub
09-08-2009, 12:20 AM
Hi dasjsmum,

Thanks for the reply. I became aware that Zithromax was anti-inflammation about 30 minutes after I posted (believed it was for the psuedomonas), but I have found alternative holistic approaches for anti-inflammation. I don't notice any difference between when I am on or off Zithromax. The Tobi (Tobramycin) I take is the nebulizer (month on month off). But still, if there are alternative therapies that work that aren't prescribed, aren't completely necessary, or that break the bank, then that should be an available choice that others should accept. Just because a drug is prescribed doesn't necessarily mean that you need it. It really depends on the person and what they can tolerate and what works for them.

26 years old

Gnub
09-08-2009, 12:20 AM
Hi dasjsmum,

Thanks for the reply. I became aware that Zithromax was anti-inflammation about 30 minutes after I posted (believed it was for the psuedomonas), but I have found alternative holistic approaches for anti-inflammation. I don't notice any difference between when I am on or off Zithromax. The Tobi (Tobramycin) I take is the nebulizer (month on month off). But still, if there are alternative therapies that work that aren't prescribed, aren't completely necessary, or that break the bank, then that should be an available choice that others should accept. Just because a drug is prescribed doesn't necessarily mean that you need it. It really depends on the person and what they can tolerate and what works for them.

26 years old

Gnub
09-08-2009, 12:20 AM
Hi dasjsmum,

Thanks for the reply. I became aware that Zithromax was anti-inflammation about 30 minutes after I posted (believed it was for the psuedomonas), but I have found alternative holistic approaches for anti-inflammation. I don't notice any difference between when I am on or off Zithromax. The Tobi (Tobramycin) I take is the nebulizer (month on month off). But still, if there are alternative therapies that work that aren't prescribed, aren't completely necessary, or that break the bank, then that should be an available choice that others should accept. Just because a drug is prescribed doesn't necessarily mean that you need it. It really depends on the person and what they can tolerate and what works for them.

26 years old