Talk to me

[saveferris2009]

1. Ya I think it's very important for you to be skin tested for allegies. if you doc says no, keep pushing, if you are truely committed to getting your FEV1 up. Allergies aren't just outdoor - you could be allergic to dust mites in your mattress, carpet, pillows, etc.

2. Yup, check out the study

3. My blog will tell you how to get the fizzy NAC they are using in the clinical. Bottomline, the fizzy NAC is already on the market - they're just running it through trials to see how it works in CFer's.

4. OK, but do you konw if something on the market could work BETTER? you never know unless you try - i'm just siting published study results.

6. Are you doing them for over 2 weeks before you decide if they're working? The PI says these steroids can take up to 4 weeks to reach max effect.

7. Great - ya I'm not as concerned about your exercise distance. It's more a factor of how high your heart rate is getting and for how long. Many CFer's try to run but it's very off and on and they sometimes don't get their heart rate up to a good level for a consistent 30 minutes. That's the most important part

8. Hmmmmm.... have you thought about getting a second opinion for that? If the myco is hiding somewhere causing you issues, that could be easily addressed

9. Hahaha OK. Maybe throw in an acapella treatment or flutter or manual CPT in between your 2 Vest treatments?


FIGHT ON!

 

[saveferris2009]

1. Ya I think it's very important for you to be skin tested for allegies. if you doc says no, keep pushing, if you are truely committed to getting your FEV1 up. Allergies aren't just outdoor - you could be allergic to dust mites in your mattress, carpet, pillows, etc.

2. Yup, check out the study

3. My blog will tell you how to get the fizzy NAC they are using in the clinical. Bottomline, the fizzy NAC is already on the market - they're just running it through trials to see how it works in CFer's.

4. OK, but do you konw if something on the market could work BETTER? you never know unless you try - i'm just siting published study results.

6. Are you doing them for over 2 weeks before you decide if they're working? The PI says these steroids can take up to 4 weeks to reach max effect.

7. Great - ya I'm not as concerned about your exercise distance. It's more a factor of how high your heart rate is getting and for how long. Many CFer's try to run but it's very off and on and they sometimes don't get their heart rate up to a good level for a consistent 30 minutes. That's the most important part

8. Hmmmmm.... have you thought about getting a second opinion for that? If the myco is hiding somewhere causing you issues, that could be easily addressed

9. Hahaha OK. Maybe throw in an acapella treatment or flutter or manual CPT in between your 2 Vest treatments?


FIGHT ON!

 

[saveferris2009]

1. Ya I think it's very important for you to be skin tested for allegies. if you doc says no, keep pushing, if you are truely committed to getting your FEV1 up. Allergies aren't just outdoor - you could be allergic to dust mites in your mattress, carpet, pillows, etc.

2. Yup, check out the study

3. My blog will tell you how to get the fizzy NAC they are using in the clinical. Bottomline, the fizzy NAC is already on the market - they're just running it through trials to see how it works in CFer's.

4. OK, but do you konw if something on the market could work BETTER? you never know unless you try - i'm just siting published study results.

6. Are you doing them for over 2 weeks before you decide if they're working? The PI says these steroids can take up to 4 weeks to reach max effect.

7. Great - ya I'm not as concerned about your exercise distance. It's more a factor of how high your heart rate is getting and for how long. Many CFer's try to run but it's very off and on and they sometimes don't get their heart rate up to a good level for a consistent 30 minutes. That's the most important part

8. Hmmmmm.... have you thought about getting a second opinion for that? If the myco is hiding somewhere causing you issues, that could be easily addressed

9. Hahaha OK. Maybe throw in an acapella treatment or flutter or manual CPT in between your 2 Vest treatments?


FIGHT ON!

 

[saveferris2009]

1. Ya I think it's very important for you to be skin tested for allegies. if you doc says no, keep pushing, if you are truely committed to getting your FEV1 up. Allergies aren't just outdoor - you could be allergic to dust mites in your mattress, carpet, pillows, etc.

2. Yup, check out the study

3. My blog will tell you how to get the fizzy NAC they are using in the clinical. Bottomline, the fizzy NAC is already on the market - they're just running it through trials to see how it works in CFer's.

4. OK, but do you konw if something on the market could work BETTER? you never know unless you try - i'm just siting published study results.

6. Are you doing them for over 2 weeks before you decide if they're working? The PI says these steroids can take up to 4 weeks to reach max effect.

7. Great - ya I'm not as concerned about your exercise distance. It's more a factor of how high your heart rate is getting and for how long. Many CFer's try to run but it's very off and on and they sometimes don't get their heart rate up to a good level for a consistent 30 minutes. That's the most important part

8. Hmmmmm.... have you thought about getting a second opinion for that? If the myco is hiding somewhere causing you issues, that could be easily addressed

9. Hahaha OK. Maybe throw in an acapella treatment or flutter or manual CPT in between your 2 Vest treatments?


FIGHT ON!

 

[saveferris2009]

1. Ya I think it's very important for you to be skin tested for allegies. if you doc says no, keep pushing, if you are truely committed to getting your FEV1 up. Allergies aren't just outdoor - you could be allergic to dust mites in your mattress, carpet, pillows, etc.
<br />
<br />2. Yup, check out the study
<br />
<br />3. My blog will tell you how to get the fizzy NAC they are using in the clinical. Bottomline, the fizzy NAC is already on the market - they're just running it through trials to see how it works in CFer's.
<br />
<br />4. OK, but do you konw if something on the market could work BETTER? you never know unless you try - i'm just siting published study results.
<br />
<br />6. Are you doing them for over 2 weeks before you decide if they're working? The PI says these steroids can take up to 4 weeks to reach max effect.
<br />
<br />7. Great - ya I'm not as concerned about your exercise distance. It's more a factor of how high your heart rate is getting and for how long. Many CFer's try to run but it's very off and on and they sometimes don't get their heart rate up to a good level for a consistent 30 minutes. That's the most important part
<br />
<br />8. Hmmmmm.... have you thought about getting a second opinion for that? If the myco is hiding somewhere causing you issues, that could be easily addressed
<br />
<br />9. Hahaha OK. Maybe throw in an acapella treatment or flutter or manual CPT in between your 2 Vest treatments?
<br />
<br />
<br />FIGHT ON!

 

[jbrandonAW]

1. I didn't get a chance to see the doc today -but I will ask tuesday (I'm having surgery tomorrow -so Ill try and remember but no promises)

2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.

3. I will ask about this tuesday as well.

4.I've been on pretty much everything. (I've had several sinus surgeries and its always been my down fall.) Since being on rhinocort I haven't needed sinus surgery and I just had a CT and the doc said they "look bad" but nothing needing surgery or even close to past ct's

6. I did flovent low does for 6 months, Flovent high does for 4 months. I did advair low does for 2 months and then Ive been doing the high does since march and still no improvement. I got my symbicort today so Im hoping it goes well.

7. So what should your heart rate range? I know that when I was walking the other day my O2 was 96 and my heart rate was 117. (my last heart rate taken today while chilling in bed was 75).... Is that good enough? So it stayed at 117 for 15 minutes.

8. I haven't gotten a second opinion on it b/c my insurance will only pay for me to go hear (and the clinic in new orleans is 5 hours away). But all the docs agree, and she said IF I culture it again we will start treatment. She also knows my plans for wanting to nurse and if we start treatment I will have to stop nursing so we are working around that as well.

9. Humm I hate the acapella. It tends to induce migraines on me(Im full of issues). But I think that when my button heals Ill try adding another vest session.


I'd love to know what your thoughts are on nutrition/bmi and cf health???

Also I get debilitating headaches -I'm assuming from meds -any ideas on something besides tylenol???

 

[jbrandonAW]

1. I didn't get a chance to see the doc today -but I will ask tuesday (I'm having surgery tomorrow -so Ill try and remember but no promises)

2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.

3. I will ask about this tuesday as well.

4.I've been on pretty much everything. (I've had several sinus surgeries and its always been my down fall.) Since being on rhinocort I haven't needed sinus surgery and I just had a CT and the doc said they "look bad" but nothing needing surgery or even close to past ct's

6. I did flovent low does for 6 months, Flovent high does for 4 months. I did advair low does for 2 months and then Ive been doing the high does since march and still no improvement. I got my symbicort today so Im hoping it goes well.

7. So what should your heart rate range? I know that when I was walking the other day my O2 was 96 and my heart rate was 117. (my last heart rate taken today while chilling in bed was 75).... Is that good enough? So it stayed at 117 for 15 minutes.

8. I haven't gotten a second opinion on it b/c my insurance will only pay for me to go hear (and the clinic in new orleans is 5 hours away). But all the docs agree, and she said IF I culture it again we will start treatment. She also knows my plans for wanting to nurse and if we start treatment I will have to stop nursing so we are working around that as well.

9. Humm I hate the acapella. It tends to induce migraines on me(Im full of issues). But I think that when my button heals Ill try adding another vest session.


I'd love to know what your thoughts are on nutrition/bmi and cf health???

Also I get debilitating headaches -I'm assuming from meds -any ideas on something besides tylenol???

 

[jbrandonAW]

1. I didn't get a chance to see the doc today -but I will ask tuesday (I'm having surgery tomorrow -so Ill try and remember but no promises)

2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.

3. I will ask about this tuesday as well.

4.I've been on pretty much everything. (I've had several sinus surgeries and its always been my down fall.) Since being on rhinocort I haven't needed sinus surgery and I just had a CT and the doc said they "look bad" but nothing needing surgery or even close to past ct's

6. I did flovent low does for 6 months, Flovent high does for 4 months. I did advair low does for 2 months and then Ive been doing the high does since march and still no improvement. I got my symbicort today so Im hoping it goes well.

7. So what should your heart rate range? I know that when I was walking the other day my O2 was 96 and my heart rate was 117. (my last heart rate taken today while chilling in bed was 75).... Is that good enough? So it stayed at 117 for 15 minutes.

8. I haven't gotten a second opinion on it b/c my insurance will only pay for me to go hear (and the clinic in new orleans is 5 hours away). But all the docs agree, and she said IF I culture it again we will start treatment. She also knows my plans for wanting to nurse and if we start treatment I will have to stop nursing so we are working around that as well.

9. Humm I hate the acapella. It tends to induce migraines on me(Im full of issues). But I think that when my button heals Ill try adding another vest session.


I'd love to know what your thoughts are on nutrition/bmi and cf health???

Also I get debilitating headaches -I'm assuming from meds -any ideas on something besides tylenol???

 

[jbrandonAW]

1. I didn't get a chance to see the doc today -but I will ask tuesday (I'm having surgery tomorrow -so Ill try and remember but no promises)

2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.

3. I will ask about this tuesday as well.

4.I've been on pretty much everything. (I've had several sinus surgeries and its always been my down fall.) Since being on rhinocort I haven't needed sinus surgery and I just had a CT and the doc said they "look bad" but nothing needing surgery or even close to past ct's

6. I did flovent low does for 6 months, Flovent high does for 4 months. I did advair low does for 2 months and then Ive been doing the high does since march and still no improvement. I got my symbicort today so Im hoping it goes well.

7. So what should your heart rate range? I know that when I was walking the other day my O2 was 96 and my heart rate was 117. (my last heart rate taken today while chilling in bed was 75).... Is that good enough? So it stayed at 117 for 15 minutes.

8. I haven't gotten a second opinion on it b/c my insurance will only pay for me to go hear (and the clinic in new orleans is 5 hours away). But all the docs agree, and she said IF I culture it again we will start treatment. She also knows my plans for wanting to nurse and if we start treatment I will have to stop nursing so we are working around that as well.

9. Humm I hate the acapella. It tends to induce migraines on me(Im full of issues). But I think that when my button heals Ill try adding another vest session.


I'd love to know what your thoughts are on nutrition/bmi and cf health???

Also I get debilitating headaches -I'm assuming from meds -any ideas on something besides tylenol???

 

[jbrandonAW]

1. I didn't get a chance to see the doc today -but I will ask tuesday (I'm having surgery tomorrow -so Ill try and remember but no promises)
<br />
<br />2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.
<br />
<br />3. I will ask about this tuesday as well.
<br />
<br />4.I've been on pretty much everything. (I've had several sinus surgeries and its always been my down fall.) Since being on rhinocort I haven't needed sinus surgery and I just had a CT and the doc said they "look bad" but nothing needing surgery or even close to past ct's
<br />
<br />6. I did flovent low does for 6 months, Flovent high does for 4 months. I did advair low does for 2 months and then Ive been doing the high does since march and still no improvement. I got my symbicort today so Im hoping it goes well.
<br />
<br />7. So what should your heart rate range? I know that when I was walking the other day my O2 was 96 and my heart rate was 117. (my last heart rate taken today while chilling in bed was 75).... Is that good enough? So it stayed at 117 for 15 minutes.
<br />
<br />8. I haven't gotten a second opinion on it b/c my insurance will only pay for me to go hear (and the clinic in new orleans is 5 hours away). But all the docs agree, and she said IF I culture it again we will start treatment. She also knows my plans for wanting to nurse and if we start treatment I will have to stop nursing so we are working around that as well.
<br />
<br />9. Humm I hate the acapella. It tends to induce migraines on me(Im full of issues). But I think that when my button heals Ill try adding another vest session.
<br />
<br />
<br />I'd love to know what your thoughts are on nutrition/bmi and cf health???
<br />
<br />Also I get debilitating headaches -I'm assuming from meds -any ideas on something besides tylenol???

 

[saveferris2009]

Hey there - I don't think 117 for 15 minutes is enough. You need to be at 160 for 30 minutes if your doc agrees that 160 is your max heart rate.

Your resting heart rate sounds good, so your heart is probably pretty good / O2 sats are great.

But yes, 150-160 for 30 straight minutes 3+ times a week will be amazing.

I have 0 experience with nutrition / bmi. I've always had a good BMI and I've never had vitamin absorption issues (but i'm PI). So I'm 0 help there... sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">

Headaches - Mine went away when I properly treated my allergies. Sleeping in dust mites for 8+ hours a night was not making my sinuses happy. Once I took care of that, my headaches took care of themselves.

All the best on your surgery tomorrow. And congrats on being proactive! I'm very excited for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

Hey there - I don't think 117 for 15 minutes is enough. You need to be at 160 for 30 minutes if your doc agrees that 160 is your max heart rate.

Your resting heart rate sounds good, so your heart is probably pretty good / O2 sats are great.

But yes, 150-160 for 30 straight minutes 3+ times a week will be amazing.

I have 0 experience with nutrition / bmi. I've always had a good BMI and I've never had vitamin absorption issues (but i'm PI). So I'm 0 help there... sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">

Headaches - Mine went away when I properly treated my allergies. Sleeping in dust mites for 8+ hours a night was not making my sinuses happy. Once I took care of that, my headaches took care of themselves.

All the best on your surgery tomorrow. And congrats on being proactive! I'm very excited for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

Hey there - I don't think 117 for 15 minutes is enough. You need to be at 160 for 30 minutes if your doc agrees that 160 is your max heart rate.

Your resting heart rate sounds good, so your heart is probably pretty good / O2 sats are great.

But yes, 150-160 for 30 straight minutes 3+ times a week will be amazing.

I have 0 experience with nutrition / bmi. I've always had a good BMI and I've never had vitamin absorption issues (but i'm PI). So I'm 0 help there... sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">

Headaches - Mine went away when I properly treated my allergies. Sleeping in dust mites for 8+ hours a night was not making my sinuses happy. Once I took care of that, my headaches took care of themselves.

All the best on your surgery tomorrow. And congrats on being proactive! I'm very excited for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

Hey there - I don't think 117 for 15 minutes is enough. You need to be at 160 for 30 minutes if your doc agrees that 160 is your max heart rate.

Your resting heart rate sounds good, so your heart is probably pretty good / O2 sats are great.

But yes, 150-160 for 30 straight minutes 3+ times a week will be amazing.

I have 0 experience with nutrition / bmi. I've always had a good BMI and I've never had vitamin absorption issues (but i'm PI). So I'm 0 help there... sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">

Headaches - Mine went away when I properly treated my allergies. Sleeping in dust mites for 8+ hours a night was not making my sinuses happy. Once I took care of that, my headaches took care of themselves.

All the best on your surgery tomorrow. And congrats on being proactive! I'm very excited for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

Hey there - I don't think 117 for 15 minutes is enough. You need to be at 160 for 30 minutes if your doc agrees that 160 is your max heart rate.
<br />
<br />Your resting heart rate sounds good, so your heart is probably pretty good / O2 sats are great.
<br />
<br />But yes, 150-160 for 30 straight minutes 3+ times a week will be amazing.
<br />
<br />I have 0 experience with nutrition / bmi. I've always had a good BMI and I've never had vitamin absorption issues (but i'm PI). So I'm 0 help there... sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Headaches - Mine went away when I properly treated my allergies. Sleeping in dust mites for 8+ hours a night was not making my sinuses happy. Once I took care of that, my headaches took care of themselves.
<br />
<br />All the best on your surgery tomorrow. And congrats on being proactive! I'm very excited for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

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


2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.
</end quote></div>



I'm not trying to talk you into anything, but allegra is the only anti-histamine on the market that has 0 anti-cholinergic effects.

So absolutely 0 sputum drying effects according to the FDA.

If you were to create a spectrum, going from most drying, or "anti-cholinergic" to least drying, you'd have diphenhydramine (benadryl) on the most drying side, followed by zyrtec and claritin in the middle, and finally allegra at the far other side of 0 drying effects.

Take care <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

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


2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.
</end quote></div>



I'm not trying to talk you into anything, but allegra is the only anti-histamine on the market that has 0 anti-cholinergic effects.

So absolutely 0 sputum drying effects according to the FDA.

If you were to create a spectrum, going from most drying, or "anti-cholinergic" to least drying, you'd have diphenhydramine (benadryl) on the most drying side, followed by zyrtec and claritin in the middle, and finally allegra at the far other side of 0 drying effects.

Take care <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

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


2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.
</end quote></div>



I'm not trying to talk you into anything, but allegra is the only anti-histamine on the market that has 0 anti-cholinergic effects.

So absolutely 0 sputum drying effects according to the FDA.

If you were to create a spectrum, going from most drying, or "anti-cholinergic" to least drying, you'd have diphenhydramine (benadryl) on the most drying side, followed by zyrtec and claritin in the middle, and finally allegra at the far other side of 0 drying effects.

Take care <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

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


2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.
</end quote>



I'm not trying to talk you into anything, but allegra is the only anti-histamine on the market that has 0 anti-cholinergic effects.

So absolutely 0 sputum drying effects according to the FDA.

If you were to create a spectrum, going from most drying, or "anti-cholinergic" to least drying, you'd have diphenhydramine (benadryl) on the most drying side, followed by zyrtec and claritin in the middle, and finally allegra at the far other side of 0 drying effects.

Take care <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jbrandonAW</b></i>
<br />
<br />
<br />2. I checked I can't take anything like allegra while nursing b/c in the same way it dry sputum it drys up milk. However as soon as Im done nursing I will def work on adding it to my meds.
<br /></end quote>
<br />
<br />
<br />
<br />I'm not trying to talk you into anything, but allegra is the only anti-histamine on the market that has 0 anti-cholinergic effects.
<br />
<br />So absolutely 0 sputum drying effects according to the FDA.
<br />
<br />If you were to create a spectrum, going from most drying, or "anti-cholinergic" to least drying, you'd have diphenhydramine (benadryl) on the most drying side, followed by zyrtec and claritin in the middle, and finally allegra at the far other side of 0 drying effects.
<br />
<br />Take care <img src="i/expressions/face-icon-small-smile.gif" border="0">