6
65rosessamurai
Guest
That won't be a problem if you live in Gaylord, CA!! (The garlic capital of the world!!)
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I'm Out Of Ideas...
- Thread starter tara
- Start date
6
65rosessamurai
Guest
That won't be a problem if you live in Gaylord, CA!! (The garlic capital of the world!!)
6
65rosessamurai
Guest
That won't be a problem if you live in Gaylord, CA!! (The garlic capital of the world!!)
6
65rosessamurai
Guest
That won't be a problem if you live in Gaylord, CA!! (The garlic capital of the world!!)
6
65rosessamurai
Guest
That won't be a problem if you live in Gaylord, CA!! (The garlic capital of the world!!)
NYCLawGirl
New member
Hey Tara,
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
NYCLawGirl
New member
Hey Tara,
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
NYCLawGirl
New member
Hey Tara,
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
NYCLawGirl
New member
Hey Tara,
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
NYCLawGirl
New member
Hey Tara,
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
Your post described my own symptoms almost perfectly, so I know exactly what you're going through. The worst part is the sense of being constantly on the brink of infection - that inevitable combo of tiredness and coughing that starts up within weeks of finishing the IVs. Believe me, I've been there and I totally admire you for pushing through it, having the courage to keep your head up, and working to try and find a solution. I don't think CFers get enough credit sometimes for how hard we work just to manage this disease and keep on living life. So my first comment is: good work and go you!
That said, after having a year of ups and downs with PA (during which I was tested for all the normal allergies and other things people have already suggested), my doctor and I finally agreed to an extended course of prednisone - 30 days (40 mg for 5 days, 30 for 5 days, 20mg for 10 and 10 mg for 10). It's not an easy drug to handle, and it's for inflammation, so it doesn't "treat" the PA infection per se, but it has really been a life changer for me. Apparently the constant infections were causing my lungs to be inflamed all the time, and that lead to more and more infection in a sort of circular roller coaster. As soon as I got on the prednisone my cough started to stabalize, my weight came back up after a year of being down due to ravaging infections, and my energy began returning since I could finally breathe deeper. With the increased weight I am much stronger and better able to fight infections, and the prednisone gave my lungs the "break" they needed to regain some stability. I started exercising again, and the future looks much brighter overall. My lung function didn't really improve too much, because like I said the prednisone won't treat the bacteria, but it certainly did get infections under control. While not quite the miracle treatment that we're all searching for, it really did make a noticable difference both in my pysical health and my mental outlook. There is something to be said for just going a couple of months without a flare up...it makes the whole thing easier to face.
The other plus side: if you're like me and have difficulty maintaining your weight, the prednisone has the added boost of giving your appetite a jump start. I have gained a MUCH needed 10 pounds since November (thank you, Ensure Plus). I also tolerated the drug remarkably well, although I did experience difficulty sleeping. Definitely have a frank discussion with your doc about the side effects though, particularly if you have low bone density or are worried about CFRD.
Good luck fighting this thing. You sound like such a strong individual, just like so many others on this forum who inspire me with their stories.
Thank you once again, all who have responded with your stories and suggestions. I don't feel so alone anymore!
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
Thank you once again, all who have responded with your stories and suggestions. I don't feel so alone anymore!
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
Thank you once again, all who have responded with your stories and suggestions. I don't feel so alone anymore!
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
Thank you once again, all who have responded with your stories and suggestions. I don't feel so alone anymore!
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
Thank you once again, all who have responded with your stories and suggestions. I don't feel so alone anymore!
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.
As for my current state, I feel I'm on the upswing. On Friday night I started 20mg of prednisone per day for 5 days. It has hijacked my blood sugars to the heavens. I am diabetic at the time being, but not on insulin. I am controlling my sugars with my diet. It seems to be going well, only testing out of range when I wake up (not two hours post meals) If I can get through the next two days ok, I don't really see a need to go on insulin. I think when I discontinue the prednisone, my sugars will return to normal. (I hope)
I went back to inhaling Aztreonam Friday night. I was off it for two weeks while on TOBI. I'm going to stay on it for 14 days, then cycle 14 days with Fortaz inhaled. I hope it brings down my infection this way. I would like to stay off IVs for awhile longer.
I also started inhaling GSH. i think this is the supplement that has made the biggest difference. I am inhaling 200mg of GSH (mixing one capsule of the Thera Naturals with 3mL of sterile water). It smells kinda rotten, almost like an old fart, so I'm not thrilled about that. And tastes a little funny too. But I feel like my capacity has increased since Friday. I've been on a prednisone "burst" like this once before, with no increase in FEV1. So I feel that adding the GSH may have been the ticket out of my slump, but we'll see. I have my PFTs here shortly. (I'm in clinic as I type, yay for free wifi)
I added garlic to my regimen as well. I'm taking 2000 mg (I think I read that right) three times a day. It's a pill and it's "odorless" so my breath and pores don't smell like garlic. Either that or my husband is not telling me something.
That's about it for now. I'll know how well I'm doing in about a week. I feel like I'm kinda on a "prednisone high" at the moment, feeling so "normal" and pain free. It's amazing how bad I can feel and not know it, until the pain is lifted. I'm sure you can all relate.
Oh, one last thing. Vesting. I do vest twice a day, sometimes three. It's a very productive session ever since I figured out what frequencies work for me. For the first year i had my vest I followed my clinic protocol to vest with mid range pressures and frequencies. This did nothing and I thought the vest "didn't work" on me. UNTIL I ready Amy's blog about Warwick's methods. I use his recommendations (detailed in one of my old blog posts) and it gives me a great 30 minute work out. I don't feel the need to supplement any more airway clearance at this time. Every CFer is different and once I found what worked for me, I just stuck with it.