NAC, my physician, and published article

[2perfectboys]

Louisville tops Minnesota!!! 98.1 mean for FEV1 for under 18. Minnesoata's guideline for care are actually sad. I can't believe that a clinic that is suppose to be so proactive is only reaching their required visits of peds and adults at 65% and 58%, sounds like a lot of non-compliance especially compared to Cinti clinic that had a peds rae of almost 75%. Too me, theses new #s are not really that useful and don't tell the whole story or else it just goes to show u, there is more than one way of CF treatment

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mneville</b></i>

Amy- Warwick also told me about NAC which I have put on my list of questions for our CF visit next week. I have no idea how much a two year old would take?



On another post, you mentioned the 97.9 number of the Minnesota Center and how great it was. It really is compared to our center in the low 80's for lung function between 6-17. But after visiting Warwick for five hours, the only difference I really notice is their strict adherence of an hour of the VEST daily. We have been doing this diligently since our son has been 19 months old. There is nothing else I can figure out that they do to make their numbers so high?? Have you? Besides MucoMyst...Whatever it is, I want to do it.



Overall Minnesota (CF or not) has the second highest life expectancy age in the USA. It must be good air? Megan</end quote></div>


I think the Vest can make a huge difference. If you are able to mobalize sputum I think you can truely make a large difference in lung function. I can only use myself as an example (other than clinical studies) but I know the few times that I haven't done the Vest I feel awful the same day.

So you may have answered your own question "the only difference I really notice is their strict adherence of an hour of the VEST daily." This center has had the Vest years longer than any other center because Warwick was the one that invented it. I think extra years of the Vest can improve FEV1's and prolong life.

I think at the end of the day, centers that innovate are going to have better CF clinical outcomes than centers that simply follow others.

We've seen it over the past 20 years with CF therapy - life expectacny has more than doubled. Has there been some miracle drug? No. Small improvements in therapies, Pulmozyme, the Vest, and improved nutrion (as the rest of the World gets fatter, CF patients keep more weight on as well) has led to dramatic increases in CF life expectancy.

So I think centers that innovate will see dramatic increases in clinical outcomes as well. Small tweeks in CF therapy add years. And those who have access to those small therapy tweeks later won't have as great clinical outcomes as those who have access earlier.

Innovation is the name of the game at Minnesota. And I think that's a large reason (although not the only) as to why they do so well.

In terms of air quality - I know many places in the US with good air quality. I think the correlation between FEV1's and air quality is pretty low, funny enough.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mneville</b></i>

Amy- Warwick also told me about NAC which I have put on my list of questions for our CF visit next week. I have no idea how much a two year old would take?



On another post, you mentioned the 97.9 number of the Minnesota Center and how great it was. It really is compared to our center in the low 80's for lung function between 6-17. But after visiting Warwick for five hours, the only difference I really notice is their strict adherence of an hour of the VEST daily. We have been doing this diligently since our son has been 19 months old. There is nothing else I can figure out that they do to make their numbers so high?? Have you? Besides MucoMyst...Whatever it is, I want to do it.



Overall Minnesota (CF or not) has the second highest life expectancy age in the USA. It must be good air? Megan</end quote></div>


I think the Vest can make a huge difference. If you are able to mobalize sputum I think you can truely make a large difference in lung function. I can only use myself as an example (other than clinical studies) but I know the few times that I haven't done the Vest I feel awful the same day.

So you may have answered your own question "the only difference I really notice is their strict adherence of an hour of the VEST daily." This center has had the Vest years longer than any other center because Warwick was the one that invented it. I think extra years of the Vest can improve FEV1's and prolong life.

I think at the end of the day, centers that innovate are going to have better CF clinical outcomes than centers that simply follow others.

We've seen it over the past 20 years with CF therapy - life expectacny has more than doubled. Has there been some miracle drug? No. Small improvements in therapies, Pulmozyme, the Vest, and improved nutrion (as the rest of the World gets fatter, CF patients keep more weight on as well) has led to dramatic increases in CF life expectancy.

So I think centers that innovate will see dramatic increases in clinical outcomes as well. Small tweeks in CF therapy add years. And those who have access to those small therapy tweeks later won't have as great clinical outcomes as those who have access earlier.

Innovation is the name of the game at Minnesota. And I think that's a large reason (although not the only) as to why they do so well.

In terms of air quality - I know many places in the US with good air quality. I think the correlation between FEV1's and air quality is pretty low, funny enough.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mneville</b></i>

Amy- Warwick also told me about NAC which I have put on my list of questions for our CF visit next week. I have no idea how much a two year old would take?



On another post, you mentioned the 97.9 number of the Minnesota Center and how great it was. It really is compared to our center in the low 80's for lung function between 6-17. But after visiting Warwick for five hours, the only difference I really notice is their strict adherence of an hour of the VEST daily. We have been doing this diligently since our son has been 19 months old. There is nothing else I can figure out that they do to make their numbers so high?? Have you? Besides MucoMyst...Whatever it is, I want to do it.



Overall Minnesota (CF or not) has the second highest life expectancy age in the USA. It must be good air? Megan</end quote></div>


I think the Vest can make a huge difference. If you are able to mobalize sputum I think you can truely make a large difference in lung function. I can only use myself as an example (other than clinical studies) but I know the few times that I haven't done the Vest I feel awful the same day.

So you may have answered your own question "the only difference I really notice is their strict adherence of an hour of the VEST daily." This center has had the Vest years longer than any other center because Warwick was the one that invented it. I think extra years of the Vest can improve FEV1's and prolong life.

I think at the end of the day, centers that innovate are going to have better CF clinical outcomes than centers that simply follow others.

We've seen it over the past 20 years with CF therapy - life expectacny has more than doubled. Has there been some miracle drug? No. Small improvements in therapies, Pulmozyme, the Vest, and improved nutrion (as the rest of the World gets fatter, CF patients keep more weight on as well) has led to dramatic increases in CF life expectancy.

So I think centers that innovate will see dramatic increases in clinical outcomes as well. Small tweeks in CF therapy add years. And those who have access to those small therapy tweeks later won't have as great clinical outcomes as those who have access earlier.

Innovation is the name of the game at Minnesota. And I think that's a large reason (although not the only) as to why they do so well.

In terms of air quality - I know many places in the US with good air quality. I think the correlation between FEV1's and air quality is pretty low, funny enough.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Studies take so long, because safety is the top priority. It's about time they did research on GSH/NAC. I would never put my son on it because it was not approved, and the when I asked his doctor about testing his GSH levels, he seemed dumbfounded on how to do this. There is a lab that wll do the GSH levels, but until they find that it is first of all safe and secondly that oral dosage can be delivered effectively to increase GSH, I think it is not a good ideal to experiment of your own. There is a doage by weight for GSH, but I think this dosage could just add up to money down the drain, if there is no benefit from it. Can't wait to see what the studies conclude</end quote></div>

Many CF therapies aren't "approved". Using zithromax or macrolide therapy 3 times a week at 500mg or 5 days a week at 250mg isn't FDA approved. But it's generally accepted CF therapy.

And NAC is a natural substance - therefore it will never be "approved" by the FDA.

So I'm a bit confused as to what you mean by never puting your son on NAC because it's not "approved." You'll never get approval until/if the FDA regulates supplements.

You mentioned "that oral dosage can be delivered effectively to increase GSH" that's what the study I posted is all about. That's the prupose of the whole study.

But I understand your concern with safety 100% and I fully understand why clinical trials take so long due to safety.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Studies take so long, because safety is the top priority. It's about time they did research on GSH/NAC. I would never put my son on it because it was not approved, and the when I asked his doctor about testing his GSH levels, he seemed dumbfounded on how to do this. There is a lab that wll do the GSH levels, but until they find that it is first of all safe and secondly that oral dosage can be delivered effectively to increase GSH, I think it is not a good ideal to experiment of your own. There is a doage by weight for GSH, but I think this dosage could just add up to money down the drain, if there is no benefit from it. Can't wait to see what the studies conclude</end quote></div>

Many CF therapies aren't "approved". Using zithromax or macrolide therapy 3 times a week at 500mg or 5 days a week at 250mg isn't FDA approved. But it's generally accepted CF therapy.

And NAC is a natural substance - therefore it will never be "approved" by the FDA.

So I'm a bit confused as to what you mean by never puting your son on NAC because it's not "approved." You'll never get approval until/if the FDA regulates supplements.

You mentioned "that oral dosage can be delivered effectively to increase GSH" that's what the study I posted is all about. That's the prupose of the whole study.

But I understand your concern with safety 100% and I fully understand why clinical trials take so long due to safety.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Studies take so long, because safety is the top priority. It's about time they did research on GSH/NAC. I would never put my son on it because it was not approved, and the when I asked his doctor about testing his GSH levels, he seemed dumbfounded on how to do this. There is a lab that wll do the GSH levels, but until they find that it is first of all safe and secondly that oral dosage can be delivered effectively to increase GSH, I think it is not a good ideal to experiment of your own. There is a doage by weight for GSH, but I think this dosage could just add up to money down the drain, if there is no benefit from it. Can't wait to see what the studies conclude</end quote></div>

Many CF therapies aren't "approved". Using zithromax or macrolide therapy 3 times a week at 500mg or 5 days a week at 250mg isn't FDA approved. But it's generally accepted CF therapy.

And NAC is a natural substance - therefore it will never be "approved" by the FDA.

So I'm a bit confused as to what you mean by never puting your son on NAC because it's not "approved." You'll never get approval until/if the FDA regulates supplements.

You mentioned "that oral dosage can be delivered effectively to increase GSH" that's what the study I posted is all about. That's the prupose of the whole study.

But I understand your concern with safety 100% and I fully understand why clinical trials take so long due to safety.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>zoe4life</b></i>

Amy,

Thanks again for all of your knowledge & research! You are such an inspiration to me and Zoe! Please keep us informed, you "trying" out these doses etc...thank you!!

Love,

Jada

Zoe's mom</end quote></div>

My pleasure Jada.

I'm aware that not everyone will agree with expiramentation, but at least the info is out there and people are able to make their decisions accordingly.

Being able to decide means everything, I think. If you dont' have the info, you can't make a decision.

This site has made me aware of so much info that I would never that otherwise had the opportunity to know. I didn't even know about Warwick until I visited this site. Or the eFlow. I owe both of those topics to this board!

So I try to give back by these postings. Most people won't try it, and I'm certainly not encouraging people to because it's so personal. But at least the info is out there just like info has been out there for me to become aware of many many times.

<img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for your kind words, Jada.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>zoe4life</b></i>

Amy,

Thanks again for all of your knowledge & research! You are such an inspiration to me and Zoe! Please keep us informed, you "trying" out these doses etc...thank you!!

Love,

Jada

Zoe's mom</end quote></div>

My pleasure Jada.

I'm aware that not everyone will agree with expiramentation, but at least the info is out there and people are able to make their decisions accordingly.

Being able to decide means everything, I think. If you dont' have the info, you can't make a decision.

This site has made me aware of so much info that I would never that otherwise had the opportunity to know. I didn't even know about Warwick until I visited this site. Or the eFlow. I owe both of those topics to this board!

So I try to give back by these postings. Most people won't try it, and I'm certainly not encouraging people to because it's so personal. But at least the info is out there just like info has been out there for me to become aware of many many times.

<img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for your kind words, Jada.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>zoe4life</b></i>

Amy,

Thanks again for all of your knowledge & research! You are such an inspiration to me and Zoe! Please keep us informed, you "trying" out these doses etc...thank you!!

Love,

Jada

Zoe's mom</end quote></div>

My pleasure Jada.

I'm aware that not everyone will agree with expiramentation, but at least the info is out there and people are able to make their decisions accordingly.

Being able to decide means everything, I think. If you dont' have the info, you can't make a decision.

This site has made me aware of so much info that I would never that otherwise had the opportunity to know. I didn't even know about Warwick until I visited this site. Or the eFlow. I owe both of those topics to this board!

So I try to give back by these postings. Most people won't try it, and I'm certainly not encouraging people to because it's so personal. But at least the info is out there just like info has been out there for me to become aware of many many times.

<img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for your kind words, Jada.

 

[2perfectboys]

I've heard that u should take vitamin C with NAC and/or GSH, to help with absorption. Have u heard anything like this? AMy, just because something is a natural substance, does not make it safe!! There are all kinds of natural substances that have side effects if overdosed on. Potassium for one can be deadly. I think FDA will approve things, didn't they do this with Hypetonic Saline, which really isn't a drug, water and salt?

 

[2perfectboys]

I've heard that u should take vitamin C with NAC and/or GSH, to help with absorption. Have u heard anything like this? AMy, just because something is a natural substance, does not make it safe!! There are all kinds of natural substances that have side effects if overdosed on. Potassium for one can be deadly. I think FDA will approve things, didn't they do this with Hypetonic Saline, which really isn't a drug, water and salt?

 

[2perfectboys]

I've heard that u should take vitamin C with NAC and/or GSH, to help with absorption. Have u heard anything like this? AMy, just because something is a natural substance, does not make it safe!! There are all kinds of natural substances that have side effects if overdosed on. Potassium for one can be deadly. I think FDA will approve things, didn't they do this with Hypetonic Saline, which really isn't a drug, water and salt?

 

[NoExcuses]

Oh I never said natural substances were safe! Never once did I ever say that.

And no, thank you for bringing up Hypertonic Saline. This is another great example of a CF therapy that is not FDA approved, but widely used.

NAC will never be under review by the FDA, as I said, unless it decides to regulate supplements.

 

[NoExcuses]

Oh I never said natural substances were safe! Never once did I ever say that.

And no, thank you for bringing up Hypertonic Saline. This is another great example of a CF therapy that is not FDA approved, but widely used.

NAC will never be under review by the FDA, as I said, unless it decides to regulate supplements.

 

[NoExcuses]

Oh I never said natural substances were safe! Never once did I ever say that.

And no, thank you for bringing up Hypertonic Saline. This is another great example of a CF therapy that is not FDA approved, but widely used.

NAC will never be under review by the FDA, as I said, unless it decides to regulate supplements.

 

[2perfectboys]

sorry, misread, but the whole FDA thing, is kind of a joke, We dont currently do supplements, but I think there is an advantage to many of them. The FDA can approve all these money making drugs and then they have a habit of withdrawling their blessings on several occasions.

 

[2perfectboys]

sorry, misread, but the whole FDA thing, is kind of a joke, We dont currently do supplements, but I think there is an advantage to many of them. The FDA can approve all these money making drugs and then they have a habit of withdrawling their blessings on several occasions.

 

[2perfectboys]

sorry, misread, but the whole FDA thing, is kind of a joke, We dont currently do supplements, but I think there is an advantage to many of them. The FDA can approve all these money making drugs and then they have a habit of withdrawling their blessings on several occasions.

 

[2perfectboys]

Just be careful, check out this site about the possible danger of NAC. I hope it is shown to be a benifit to CF people, but I think it's intake should be monitored.

<a target=_blank class=ftalternatingbarlinklarge href="http://mednews.stanford.edu/releases/2006/march/CF.html
">http://mednews.stanford.edu/re...es/2006/march/CF.html
</a>
"Despite the improvement and the relatively safe profile of NAC, Conrad and Tirouvanziam strongly caution cystic fibrosis patients against self-medicating with NAC or any other drug. Although NAC can sometimes be found as a food supplement, many of these formulations contain little or no active compound, and some even contain a form of NAC that is potentially harmful to cystic fibrosis patients. The NAC that was used in this study is specially formulated for medical use by a Canadian company and is not licensed for sale in the United States."