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  1. O

    HELP! Have you ever been called an AIDS INFECTED RETARD for having CF ?

    Or just do absolutely nothing since witchcraft, magic, voodoo and other silly hokum like that doesn't exist.
  2. O

    Is my doctor being aggressive enough?

    Colistin is actually VERY strong, from my understanding. I kind of pride myself on being an "antibiotics nerd". :) Things don't get resistant to it because of the way it works. Tobi and other antibiotics actually enter the bacterial cells and interfere with various parts of their reproductive...
  3. O

    Is my doctor being aggressive enough?

    That's definitely a word I'd use. Inflexible. I mean, he's capable of being aggressive, but for whatever reason, doesn't think aggressive treatment is warranted anymore. Maybe because my numbers are still "high", relatively speaking. With upper-80's FEV1 and 103 FVC, I'm not even close to...
  4. O

    Husband with CF, declining health,lungs functioning at less than 20%,what can be done

    This is all a bunch of quackery, and I'm sorry but nothing irks me more than people peddling false, goofy, faith healer "natural remedies 'THEY' don't want you to know about" hokum like this. No amount of garlic and horseradish is going to get rid of Achromobacter xylosoxidans. She needs...
  5. O

    Pseudomonas still there after erradication protocol. WWYD?

    A lot of good in this post! However, I must say, that it isn't so simple as "everything alive after 28 days is resistant". Rather, they may be intermediate resistant or simply require higher, prolonged exposure to the antibiotics in order to eradicate. Cipro and Tobi do kill PA effectively, but...
  6. O

    Pseudomonas still there after erradication protocol. WWYD?

    Depending on your doctor, it can take several attempts at eradication before your doctor feels like the PA has colonized his lungs for good. My doctor's protocol is to start eradication therapy (generally inhaled Tobi + Cipro + Azithromycin) after the first culture, repeat the culture after a...
  7. O

    Is my doctor being aggressive enough?

    His exact issue with Kalydeco/809 is two-fold: 1) I guess that in some patients that take Kalydeco, it can raise liver enzyme levels or something like that and he wants to be able to see data for an indeterminate period of time AFTER the combo goes to market to make sure it doesn't raise the...
  8. O

    Is my doctor being aggressive enough?

    Thank you (and everyone) for the well-wishes. It's not that I don't trust him. Like I said, he responded to my exacerbation exactly like I hoped he would: swiftly and aggressively with very powerful antibiotics and some orals to take home to make sure I fully kicked the flare up. It's just that...
  9. O

    HELP! Have you ever been called an AIDS INFECTED RETARD for having CF ?

    Get a restraining order or whatever the Swedish equivalent is. If she continues to contact you, she'll land herself in jail (or a psych ward if she's truly unhinged). Are you implying this person is trying to... use magic on you? Because witchcraft doesn't exist. I'm sorry, but much as I'm...
  10. O

    Is my doctor being aggressive enough?

    Ironically, I started seeing him because my last doctor wasn't aggressive enough either... he wouldn't even put me on Tobi or Pulmozyme! I have nothing but envy for those of you who have doctors awesome enough to put them on Kalydeco off-label and stuff. :(
  11. O

    Is my doctor being aggressive enough?

    Backstory: I'm a 28 year old male with homozygous delta F508. I've had extremely good lung functions (FEV1 @ 122, FVC @ 120) for years, up until a year ago when I had a massive exacerbation. Currently, my FEV1 is in the mid-upper 80's and my FVC is 103. My doctor responded aggressively to the...
  12. O

    getting fev 1 back up

    Long story short, if you honestly feel that your doctor isn't doing a good job, GET A NEW DOCTOR! Do NOT self-medicate or refuse to do treatments or whatever else.
  13. O

    getting fev 1 back up

    I don't even know where to begin with this post, but it's pretty disturbing and I'm pretty upset that you'd post stuff like this here, since all that will come of it is other desperate people either getting false hope or really upset. First, your doctor hasn't given up on you. Why in the world...
  14. O

    Breathing technique

    My doctor has talked about AD before, and says that they use it a lot in Europe and that it takes some time to master. One of these days, I'll try to see if I can learn it.
  15. O

    Breathing technique

    My doctor has talked about AD before, and says that they use it a lot in Europe and that it takes some time to master. One of these days, I'll try to see if I can learn it.
  16. O

    Breathing technique

    My doctor has talked about AD before, and says that they use it a lot in Europe and that it takes some time to master. One of these days, I'll try to see if I can learn it.
  17. O

    Breathing technique

    My doctor has talked about AD before, and says that they use it a lot in Europe and that it takes some time to master. One of these days, I'll try to see if I can learn it.
  18. O

    Breathing technique

    My doctor has talked about AD before, and says that they use it a lot in Europe and that it takes some time to master. One of these days, I'll try to see if I can learn it.
  19. O

    Breathing technique

    The best thing to do, in my opinion, would be to do this (take breaths until you literally can't hold anymore), and then exhale the air really hard and fast until you've pushed ever bit of air out. What you're basically doing here is forcing air past the secretions in your lungs and then...
  20. O

    Breathing technique

    The best thing to do, in my opinion, would be to do this (take breaths until you literally can't hold anymore), and then exhale the air really hard and fast until you've pushed ever bit of air out. What you're basically doing here is forcing air past the secretions in your lungs and then...
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