Cystic Fibrosis Forum (EXP)

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  1. M

    WWYD

    this is where you have to be a parent and tell your child what is best for her. she will be sad if she can't take lessons, but in the end, YOU have to live with the consequences. i would not put my child at risk if it was me. there are plenty of other activities and classes or teachers who...
  2. M

    WWYD

    this is where you have to be a parent and tell your child what is best for her. she will be sad if she can't take lessons, but in the end, YOU have to live with the consequences. i would not put my child at risk if it was me. there are plenty of other activities and classes or teachers who...
  3. M

    how were you genotyped

    that's a good question! i wonder if they genotyped everyone who participatedbefore the trials started.......
  4. M

    how were you genotyped

    that's a good question! i wonder if they genotyped everyone who participatedbefore the trials started.......
  5. M

    how were you genotyped

    after reading this post from Angie <a href="http://runsickboyrun.blogspot.com/2012/04/start-of-my-kalydeco-journey.html">http://runsickboyrun.blogspot.com/2012/04/start-of-my-kalydeco-journey.html</a> i wonder how many people have been incorrectly genotyped back when they were doing throat swabs...
  6. M

    how were you genotyped

    after reading this post from Angie <a href="http://runsickboyrun.blogspot.com/2012/04/start-of-my-kalydeco-journey.html">http://runsickboyrun.blogspot.com/2012/04/start-of-my-kalydeco-journey.html</a> i wonder how many people have been incorrectly genotyped back when they were doing throat swabs...
  7. M

    resistant to Itaconzole

    what is your ige level? this is the second time i have ever taken vorconizole (sp?) and my dr never mentioned anything about becoming resistant. their concern is safety. its very toxic i believe. why do feel like you should be on it constantly?
  8. M

    resistant to Itaconzole

    what is your ige level? this is the second time i have ever taken vorconizole (sp?) and my dr never mentioned anything about becoming resistant. their concern is safety. its very toxic i believe. why do feel like you should be on it constantly?
  9. M

    Anyone Fly recently?

    I flew in Feb. i put all the vials in a ziploc, wripped off the 'label/sticker' of the box that has my name and dosage and put it in the carry on. they will search it. tell 'em to put on CLEAN GLOVES!
  10. M

    Anyone Fly recently?

    I flew in Feb. i put all the vials in a ziploc, wripped off the 'label/sticker' of the box that has my name and dosage and put it in the carry on. they will search it. tell 'em to put on CLEAN GLOVES!
  11. M

    Long Term Antibiotics

    incomudrox---i am starting vfend and steroids. i had never heard of taking a liver supporting supplement before so I bought some today. have you taken the liver supplement at the same time you were being treated with anbx or antifungals? I was wondering if the liver supplement would in any way...
  12. M

    Long Term Antibiotics

    incomudrox---i am starting vfend and steroids. i had never heard of taking a liver supporting supplement before so I bought some today. have you taken the liver supplement at the same time you were being treated with anbx or antifungals? I was wondering if the liver supplement would in any way...
  13. M

    fungal infection - treatment?

    ABPA should be diagnosed in part by bloodwork, not just an xray i am currently being treated for ABPA and i am starting prednisone and vfend if you go on vfend beware it makes you VERY sun sensitive even with spf. need to wear protective clothing. i have only been treated for ABPA once before...
  14. M

    fungal infection - treatment?

    ABPA should be diagnosed in part by bloodwork, not just an xray i am currently being treated for ABPA and i am starting prednisone and vfend if you go on vfend beware it makes you VERY sun sensitive even with spf. need to wear protective clothing. i have only been treated for ABPA once before...
  15. M

    two weeks on kalydeco!

    false. it does work on other mutations. do the research. not effective on double deltas though.
  16. M

    two weeks on kalydeco!

    false. it does work on other mutations. do the research. not effective on double deltas though.
  17. M

    g551d mutations on Kalydeco

    what is yourbeginning fev1 (before starting Kalydeco) and current fev1? thanks for sharing!
  18. M

    g551d mutations on Kalydeco

    what is yourbeginning fev1 (before starting Kalydeco) and current fev1? thanks for sharing!
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