Cystic Fibrosis Forum (EXP)

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  1. I

    Kalydeco or VX-770 off lable use?

    http://incomudroxcf.blogspot.com/2012/03/truth-about-kalydecovx-770ivacaftor.html
  2. I

    Kalydeco or VX-770 off lable use?

    http://incomudroxcf.blogspot.com/2012/03/truth-about-kalydecovx-770ivacaftor.html
  3. I

    Vitamin C / ascorbic acid and CF

    I take the EQUIVALENT 9100mg of standard Vitamin C a day. http://incomudroxcf.blogspot.com/2012/04/liposomes-used-for-potentiators.html <<<My blog about it. http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=615572&enterthread=y <<< My progress and regime currently. Other...
  4. I

    Vitamin C / ascorbic acid and CF

    I take the EQUIVALENT 9100mg of standard Vitamin C a day. http://incomudroxcf.blogspot.com/2012/04/liposomes-used-for-potentiators.html <<<My blog about it. http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=615572&enterthread=y <<< My progress and regime currently. Other...
  5. I

    Calorie Deficits with CF?

    If you're serious about getting shredded email me. Frank.x.via@gmail.com not to sound rude, but if you don't have the time, midset, and money (to an extent) to dedicate please consider all of this first) bodybuilding is like a religion.
  6. I

    Calorie Deficits with CF?

    If you're serious about getting shredded email me. Frank.x.via@gmail.com not to sound rude, but if you don't have the time, midset, and money (to an extent) to dedicate please consider all of this first) bodybuilding is like a religion.
  7. I

    How good is 104% in the blowing test?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> Its not uncommon for FEV1 scores to be over 100% but I think the amount of lung function you gained back is really remarkable. Just keep doing what you're doing and you may even be able to go higher than that.</end...
  8. I

    How good is 104% in the blowing test?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> Its not uncommon for FEV1 scores to be over 100% but I think the amount of lung function you gained back is really remarkable. Just keep doing what you're doing and you may even be able to go higher than that.</end...
  9. I

    Rash around my bottom/scrotum

    There is nothing wrong with the OP's question. I had this happen to me when I was much younger in the hospital because I didn't want "bertha" to come give me a sponge back in the hospital. I ended up asking the doctor and he laughed at me. lol. So I can see why the OP wanted to ask here rather...
  10. I

    Rash around my bottom/scrotum

    There is nothing wrong with the OP's question. I had this happen to me when I was much younger in the hospital because I didn't want "bertha" to come give me a sponge back in the hospital. I ended up asking the doctor and he laughed at me. lol. So I can see why the OP wanted to ask here rather...
  11. I

    Rash around my bottom/scrotum

    It's from not showering in the hospital. If you aren't going to shower at least wash your junk. It will continue to do this if you don't. So - in summary wash yo self.
  12. I

    Rash around my bottom/scrotum

    It's from not showering in the hospital. If you aren't going to shower at least wash your junk. It will continue to do this if you don't. So - in summary wash yo self.
  13. I

    Kalydeco or VX-770 off lable use?

    There is also a running theory that because of the auto immune response in CF once the body is making CFTR and doesn't recognize it as it's own it is attacking it which maybe why some cases there is temporary improvement or no improvement off the bat. I just entered a study on this at my hospital.
  14. I

    Kalydeco or VX-770 off lable use?

    There is also a running theory that because of the auto immune response in CF once the body is making CFTR and doesn't recognize it as it's own it is attacking it which maybe why some cases there is temporary improvement or no improvement off the bat. I just entered a study on this at my hospital.
  15. I

    Alternatives for treating Pseudo in my littlest one!

    I would rather do 3 months straight tobi and possibly kill it, than have it for the rest of my life. It took me 15 years give or take to kill mine and I'm not 100% sure its gone. I want 5 clean cultures to be sure. There are some people that are on Tobi non-stop. Some do tobi every other day...
  16. I

    Alternatives for treating Pseudo in my littlest one!

    I would rather do 3 months straight tobi and possibly kill it, than have it for the rest of my life. It took me 15 years give or take to kill mine and I'm not 100% sure its gone. I want 5 clean cultures to be sure. There are some people that are on Tobi non-stop. Some do tobi every other day...
  17. I

    PFT Goal's thread. Trying to achieve 60% FEV1.

    PFT Goal's thread. Trying to achieve 60% FEV1. NOT CULTURING MSSA OR PA! WOOT! I'll try to get you some more detailed info on it. My doc knows everything I'm doing he and the team have apparently been following my blog and my posts here as well without me knowing lol. Prior to ME knowing that I...
  18. I

    Alternatives for treating Pseudo in my littlest one!

    Please do NOT use H2O2!!! You will cause damage. That being said if you were willing to do that look at Puracyn/microcyn technology. You may also get some Haritaki to try. You can read about Haritaki on my blog. Which is in my signature. To read about puracyn see my thread in the adults section...
  19. I

    Alternatives for treating Pseudo in my littlest one!

    Please do NOT use H2O2!!! You will cause damage. That being said if you were willing to do that look at Puracyn/microcyn technology. You may also get some Haritaki to try. You can read about Haritaki on my blog. Which is in my signature. To read about puracyn see my thread in the adults section...
  20. I

    PFT Goal's thread. Trying to achieve 60% FEV1.

    PFT Goal's thread. Trying to achieve 60% FEV1. NOT CULTURING MSSA OR PA! WOOT! My doc pushed out my visits from every one month to 2 1/2 months right now. My goals are to gain a bunch more weight and increase FEV1 to 45% by next visit.
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