M
moxie1
Guest
I was just thinking I haven't seen any posts from her in awhile. I appreciated her knowledge and willingness to share that knowledge.
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M
moxie1
Guest
I was just thinking I haven't seen any posts from her in awhile. I appreciated her knowledge and willingness to share that knowledge.
M
moxie1
Guest
<p>I was just thinking I haven't seen any posts from her in awhile. I appreciated her knowledge and willingness to share that knowledge.
Nightwriter
New member
Hi Becki and ymikale,
Thank you so much for asking about me. While I don't post anymore, I do check up on you guys because I care so much about all of you. If I can be of any help, please ask and I will be happy to answer as best as I can.
As for me, this year is a pretty decent one (knock wood). A year and a half ago, the swine flu set me back, bringing back PA and was hospitalized for the first time in 12 years for 5 days, then a month on Tobi. I suppose someone could look at that as an interesting prototype for treatment for a pretty bad exacerbation --one in which I couldn't breathe and was rushed to the ER. In fact --I do believe it would not have reached the point of hospitalization had it not been Christmas and my doctor was unavailable so I was winging it (badly) on my own.
But I worked myself back to baseline with the usual blips here and there anytime exposed to my usual triggers.
I wish I could say that I have found something new and exciting, or time-cutting in my CF experience. I still do believe that preventative care and a clean environment can cut down infections by reducing inflammation. But my preventative care protocol is very different from the usual, as you both know. And I know both of you believe in the same things that I do-- because it's hard to argue once you see results.
I suppose if I had to say if anything is different in the past few years -- when I have an exacerbation that is brought on by a cold or a trigger in the environment -- if my treatment protocol doesn't work within 4 or 5 days days and I get worse (and depending on certain other factors), I go on Zithromax for 2 to 4 weeks. This is why my doctor does not have me on it regularly -- so that it can be used for acute illness both as an antibiotic and anti-inflammatory.
After the swine flu -- PA has popped up once or twice -- and I've been on Tobi twice in a year and a half. Another reason why I don't use it preventively. Swine flu can trigger PA and did. For the first time in YEARS I even had 2 strains -- but the Tobi worked well -- avoiding IV other than those 5 days in the hospital (in the last 12 years).
It is disheartening to me still that IV antibiotics, while sometimes or often absolutely necessary -- in my opinion are overused. I used to be on them and became resistant to almost everything. At one point only one drug was sensitive to my bugs. Lifestyle changes and understanding how allergies, chemical sensitivities, and the asthma component of CF which is frequently overlooked --is the key to reducing inflammation and reducing exacerbations.
You know that I couldn't resist -- also for the sake of new people who have no idea who I am, lol.
Keep well, guys!
Thank you so much for asking about me. While I don't post anymore, I do check up on you guys because I care so much about all of you. If I can be of any help, please ask and I will be happy to answer as best as I can.
As for me, this year is a pretty decent one (knock wood). A year and a half ago, the swine flu set me back, bringing back PA and was hospitalized for the first time in 12 years for 5 days, then a month on Tobi. I suppose someone could look at that as an interesting prototype for treatment for a pretty bad exacerbation --one in which I couldn't breathe and was rushed to the ER. In fact --I do believe it would not have reached the point of hospitalization had it not been Christmas and my doctor was unavailable so I was winging it (badly) on my own.
But I worked myself back to baseline with the usual blips here and there anytime exposed to my usual triggers.
I wish I could say that I have found something new and exciting, or time-cutting in my CF experience. I still do believe that preventative care and a clean environment can cut down infections by reducing inflammation. But my preventative care protocol is very different from the usual, as you both know. And I know both of you believe in the same things that I do-- because it's hard to argue once you see results.
I suppose if I had to say if anything is different in the past few years -- when I have an exacerbation that is brought on by a cold or a trigger in the environment -- if my treatment protocol doesn't work within 4 or 5 days days and I get worse (and depending on certain other factors), I go on Zithromax for 2 to 4 weeks. This is why my doctor does not have me on it regularly -- so that it can be used for acute illness both as an antibiotic and anti-inflammatory.
After the swine flu -- PA has popped up once or twice -- and I've been on Tobi twice in a year and a half. Another reason why I don't use it preventively. Swine flu can trigger PA and did. For the first time in YEARS I even had 2 strains -- but the Tobi worked well -- avoiding IV other than those 5 days in the hospital (in the last 12 years).
It is disheartening to me still that IV antibiotics, while sometimes or often absolutely necessary -- in my opinion are overused. I used to be on them and became resistant to almost everything. At one point only one drug was sensitive to my bugs. Lifestyle changes and understanding how allergies, chemical sensitivities, and the asthma component of CF which is frequently overlooked --is the key to reducing inflammation and reducing exacerbations.
You know that I couldn't resist -- also for the sake of new people who have no idea who I am, lol.
Keep well, guys!
Nightwriter
New member
Hi Becki and ymikale,
Thank you so much for asking about me. While I don't post anymore, I do check up on you guys because I care so much about all of you. If I can be of any help, please ask and I will be happy to answer as best as I can.
As for me, this year is a pretty decent one (knock wood). A year and a half ago, the swine flu set me back, bringing back PA and was hospitalized for the first time in 12 years for 5 days, then a month on Tobi. I suppose someone could look at that as an interesting prototype for treatment for a pretty bad exacerbation --one in which I couldn't breathe and was rushed to the ER. In fact --I do believe it would not have reached the point of hospitalization had it not been Christmas and my doctor was unavailable so I was winging it (badly) on my own.
But I worked myself back to baseline with the usual blips here and there anytime exposed to my usual triggers.
I wish I could say that I have found something new and exciting, or time-cutting in my CF experience. I still do believe that preventative care and a clean environment can cut down infections by reducing inflammation. But my preventative care protocol is very different from the usual, as you both know. And I know both of you believe in the same things that I do-- because it's hard to argue once you see results.
I suppose if I had to say if anything is different in the past few years -- when I have an exacerbation that is brought on by a cold or a trigger in the environment -- if my treatment protocol doesn't work within 4 or 5 days days and I get worse (and depending on certain other factors), I go on Zithromax for 2 to 4 weeks. This is why my doctor does not have me on it regularly -- so that it can be used for acute illness both as an antibiotic and anti-inflammatory.
After the swine flu -- PA has popped up once or twice -- and I've been on Tobi twice in a year and a half. Another reason why I don't use it preventively. Swine flu can trigger PA and did. For the first time in YEARS I even had 2 strains -- but the Tobi worked well -- avoiding IV other than those 5 days in the hospital (in the last 12 years).
It is disheartening to me still that IV antibiotics, while sometimes or often absolutely necessary -- in my opinion are overused. I used to be on them and became resistant to almost everything. At one point only one drug was sensitive to my bugs. Lifestyle changes and understanding how allergies, chemical sensitivities, and the asthma component of CF which is frequently overlooked --is the key to reducing inflammation and reducing exacerbations.
You know that I couldn't resist -- also for the sake of new people who have no idea who I am, lol.
Keep well, guys!
Thank you so much for asking about me. While I don't post anymore, I do check up on you guys because I care so much about all of you. If I can be of any help, please ask and I will be happy to answer as best as I can.
As for me, this year is a pretty decent one (knock wood). A year and a half ago, the swine flu set me back, bringing back PA and was hospitalized for the first time in 12 years for 5 days, then a month on Tobi. I suppose someone could look at that as an interesting prototype for treatment for a pretty bad exacerbation --one in which I couldn't breathe and was rushed to the ER. In fact --I do believe it would not have reached the point of hospitalization had it not been Christmas and my doctor was unavailable so I was winging it (badly) on my own.
But I worked myself back to baseline with the usual blips here and there anytime exposed to my usual triggers.
I wish I could say that I have found something new and exciting, or time-cutting in my CF experience. I still do believe that preventative care and a clean environment can cut down infections by reducing inflammation. But my preventative care protocol is very different from the usual, as you both know. And I know both of you believe in the same things that I do-- because it's hard to argue once you see results.
I suppose if I had to say if anything is different in the past few years -- when I have an exacerbation that is brought on by a cold or a trigger in the environment -- if my treatment protocol doesn't work within 4 or 5 days days and I get worse (and depending on certain other factors), I go on Zithromax for 2 to 4 weeks. This is why my doctor does not have me on it regularly -- so that it can be used for acute illness both as an antibiotic and anti-inflammatory.
After the swine flu -- PA has popped up once or twice -- and I've been on Tobi twice in a year and a half. Another reason why I don't use it preventively. Swine flu can trigger PA and did. For the first time in YEARS I even had 2 strains -- but the Tobi worked well -- avoiding IV other than those 5 days in the hospital (in the last 12 years).
It is disheartening to me still that IV antibiotics, while sometimes or often absolutely necessary -- in my opinion are overused. I used to be on them and became resistant to almost everything. At one point only one drug was sensitive to my bugs. Lifestyle changes and understanding how allergies, chemical sensitivities, and the asthma component of CF which is frequently overlooked --is the key to reducing inflammation and reducing exacerbations.
You know that I couldn't resist -- also for the sake of new people who have no idea who I am, lol.
Keep well, guys!
Nightwriter
New member
Hi Becki and ymikale,
<br />
<br />Thank you so much for asking about me. While I don't post anymore, I do check up on you guys because I care so much about all of you. If I can be of any help, please ask and I will be happy to answer as best as I can.
<br />
<br />As for me, this year is a pretty decent one (knock wood). A year and a half ago, the swine flu set me back, bringing back PA and was hospitalized for the first time in 12 years for 5 days, then a month on Tobi. I suppose someone could look at that as an interesting prototype for treatment for a pretty bad exacerbation --one in which I couldn't breathe and was rushed to the ER. In fact --I do believe it would not have reached the point of hospitalization had it not been Christmas and my doctor was unavailable so I was winging it (badly) on my own.
<br />
<br />But I worked myself back to baseline with the usual blips here and there anytime exposed to my usual triggers.
<br />
<br />I wish I could say that I have found something new and exciting, or time-cutting in my CF experience. I still do believe that preventative care and a clean environment can cut down infections by reducing inflammation. But my preventative care protocol is very different from the usual, as you both know. And I know both of you believe in the same things that I do-- because it's hard to argue once you see results.
<br />
<br />I suppose if I had to say if anything is different in the past few years -- when I have an exacerbation that is brought on by a cold or a trigger in the environment -- if my treatment protocol doesn't work within 4 or 5 days days and I get worse (and depending on certain other factors), I go on Zithromax for 2 to 4 weeks. This is why my doctor does not have me on it regularly -- so that it can be used for acute illness both as an antibiotic and anti-inflammatory.
<br />
<br />After the swine flu -- PA has popped up once or twice -- and I've been on Tobi twice in a year and a half. Another reason why I don't use it preventively. Swine flu can trigger PA and did. For the first time in YEARS I even had 2 strains -- but the Tobi worked well -- avoiding IV other than those 5 days in the hospital (in the last 12 years).
<br />
<br />It is disheartening to me still that IV antibiotics, while sometimes or often absolutely necessary -- in my opinion are overused. I used to be on them and became resistant to almost everything. At one point only one drug was sensitive to my bugs. Lifestyle changes and understanding how allergies, chemical sensitivities, and the asthma component of CF which is frequently overlooked --is the key to reducing inflammation and reducing exacerbations.
<br />
<br />You know that I couldn't resist -- also for the sake of new people who have no idea who I am, lol.
<br />
<br />Keep well, guys!
<br />
<br />
<br />Thank you so much for asking about me. While I don't post anymore, I do check up on you guys because I care so much about all of you. If I can be of any help, please ask and I will be happy to answer as best as I can.
<br />
<br />As for me, this year is a pretty decent one (knock wood). A year and a half ago, the swine flu set me back, bringing back PA and was hospitalized for the first time in 12 years for 5 days, then a month on Tobi. I suppose someone could look at that as an interesting prototype for treatment for a pretty bad exacerbation --one in which I couldn't breathe and was rushed to the ER. In fact --I do believe it would not have reached the point of hospitalization had it not been Christmas and my doctor was unavailable so I was winging it (badly) on my own.
<br />
<br />But I worked myself back to baseline with the usual blips here and there anytime exposed to my usual triggers.
<br />
<br />I wish I could say that I have found something new and exciting, or time-cutting in my CF experience. I still do believe that preventative care and a clean environment can cut down infections by reducing inflammation. But my preventative care protocol is very different from the usual, as you both know. And I know both of you believe in the same things that I do-- because it's hard to argue once you see results.
<br />
<br />I suppose if I had to say if anything is different in the past few years -- when I have an exacerbation that is brought on by a cold or a trigger in the environment -- if my treatment protocol doesn't work within 4 or 5 days days and I get worse (and depending on certain other factors), I go on Zithromax for 2 to 4 weeks. This is why my doctor does not have me on it regularly -- so that it can be used for acute illness both as an antibiotic and anti-inflammatory.
<br />
<br />After the swine flu -- PA has popped up once or twice -- and I've been on Tobi twice in a year and a half. Another reason why I don't use it preventively. Swine flu can trigger PA and did. For the first time in YEARS I even had 2 strains -- but the Tobi worked well -- avoiding IV other than those 5 days in the hospital (in the last 12 years).
<br />
<br />It is disheartening to me still that IV antibiotics, while sometimes or often absolutely necessary -- in my opinion are overused. I used to be on them and became resistant to almost everything. At one point only one drug was sensitive to my bugs. Lifestyle changes and understanding how allergies, chemical sensitivities, and the asthma component of CF which is frequently overlooked --is the key to reducing inflammation and reducing exacerbations.
<br />
<br />You know that I couldn't resist -- also for the sake of new people who have no idea who I am, lol.
<br />
<br />Keep well, guys!
<br />
M
moxie1
Guest
nightwriter: glad to see your response and so glad that you are doing well. <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
moxie1
Guest
nightwriter: glad to see your response and so glad that you are doing well. <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
moxie1
Guest
<p>nightwriter: glad to see your response and so glad that you are doing well. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<p>
<p>
theLostMiler
New member
I feel like I have read a lot of your post nightwriter... but never have seen this before... can you point me to some threads to read or expand on this stuff? I am interested...
theLostMiler
New member
I feel like I have read a lot of your post nightwriter... but never have seen this before... can you point me to some threads to read or expand on this stuff? I am interested...
theLostMiler
New member
I feel like I have read a lot of your post nightwriter... but never have seen this before... can you point me to some threads to read or expand on this stuff? I am interested...
Nightwriter
New member
Thanks, Becki!
The Lost Miler -- I think it is not so easy for you to find my posts. So I will put together a list of a few different topics for you to click on and post them here.
The Lost Miler -- I think it is not so easy for you to find my posts. So I will put together a list of a few different topics for you to click on and post them here.
Nightwriter
New member
Thanks, Becki!
The Lost Miler -- I think it is not so easy for you to find my posts. So I will put together a list of a few different topics for you to click on and post them here.
The Lost Miler -- I think it is not so easy for you to find my posts. So I will put together a list of a few different topics for you to click on and post them here.
Nightwriter
New member
Thanks, Becki!
<br />
<br />The Lost Miler -- I think it is not so easy for you to find my posts. So I will put together a list of a few different topics for you to click on and post them here.
<br />
<br />
<br />The Lost Miler -- I think it is not so easy for you to find my posts. So I will put together a list of a few different topics for you to click on and post them here.
<br />
Nightwriter
New member
Lost Miler,
I had saved some threads under favorites -- but when I click not all of the me work -- perhaps something to do with changing the site. But I will post the threads that did work. I have changed a few things since these were posted, particularly with the supplements. Almost everything else is what I do follow.
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=39912 (Cleaning House)
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=38667 (Strategies to fight colds)
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=37352 (CF Doc. gives negative survival rate for 9 year old)
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=41753 (Can someone help me... Nightwriter?)
I had saved some threads under favorites -- but when I click not all of the me work -- perhaps something to do with changing the site. But I will post the threads that did work. I have changed a few things since these were posted, particularly with the supplements. Almost everything else is what I do follow.
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=39912 (Cleaning House)
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=38667 (Strategies to fight colds)
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=37352 (CF Doc. gives negative survival rate for 9 year old)
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=41753 (Can someone help me... Nightwriter?)
Nightwriter
New member
Lost Miler,
I had saved some threads under favorites -- but when I click not all of the me work -- perhaps something to do with changing the site. But I will post the threads that did work. I have changed a few things since these were posted, particularly with the supplements. Almost everything else is what I do follow.
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=39912 (Cleaning House)
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=38667 (Strategies to fight colds)
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=37352 (CF Doc. gives negative survival rate for 9 year old)
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=41753 (Can someone help me... Nightwriter?)
I had saved some threads under favorites -- but when I click not all of the me work -- perhaps something to do with changing the site. But I will post the threads that did work. I have changed a few things since these were posted, particularly with the supplements. Almost everything else is what I do follow.
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=39912 (Cleaning House)
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=38667 (Strategies to fight colds)
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=37352 (CF Doc. gives negative survival rate for 9 year old)
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=41753 (Can someone help me... Nightwriter?)