Cystic Fibrosis Forum (EXP)

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Recent content by RayRDT

  1. R

    Vinegar in sinus saline rinses ?!

    I have read elsewhere that some docs or ENTs have suggested to some people to put vinegar in their sinus saline rinse ... I have Pseudos. Aerug. btw. Can anyone here tell me more like for example : does it sting, does it really work, any side effects, quantity of vinegar for a 240 ml bottle, is...
  2. R

    Phage against pseudomonas staphylocoque aureus

    I would really like to speak to you. Which country are you from, maybe I could call you ? I'm seriously looking into this but just started my research ... RDT.
  3. R

    Phage against pseudomonas staphylocoque aureus

    Are there clinics in North America ??? Does is really eradicate chronic PA with biofilm ??? Where can I get more info ???
  4. R

    Tobi pod haler

    I've been on Cayston for over a year now (I don't tolerate the others very well, lots of chest tightness). The last sputum analysis showed a little resistance to Aztreonam :( How come after only 1 year on it it's already a bit resistant ?! What will I do when Cayston is no longer an option ...
  5. R

    Traveling with all of our meds/eqp :(

    Hi everyone, I will be traveling to China shortly (for business) and I am wondering if you guys have any tips on how to make traveling easier with all the stuff we need to bring (healthwise). Like for example the sinus saline rinses : I do 3 per day. That would be 16 days in China x 3 bottles...
  6. R

    Mucoid Pseudos Aeruginosa and Sudden Resistance !!! HELP !!!

    Is Cheated Magnesium like normal Magnesium ? And where can we buy it and the other thing (Haritaki) ???
  7. R

    Mucoid Pseudos Aeruginosa and Sudden Resistance !!! HELP !!!

    Thxs for your reply ! I don't tolerate TOBI and I am already using Colistin every other month. Sadly, there are not that many options from an inhalation point of vue :( Never heard of Fortaz ... I asked if we should change and he said to continue for the time being on both. I have...
  8. R

    Mucoid Pseudos Aeruginosa and Sudden Resistance !!! HELP !!!

    Hello everyone. I am panicked because I had a culture done in Jan. 2014 and my mucoid PA was sensible to all antibiotics. I just had a bronchoscopy and now it is resistant to certain antibiotics that I've never taken !!! And Cayston (Aztreonam) that I have been ONLY using for a bit over a year...
  9. R

    Pseudos exacerbation :(

    Hi, I am confused ... After an exacerbation with Pseudos and 14 days of Levaquin and Cayston, I am still spitting green mid-day ... Should it be white ? Will it get white after some time just on Cayston/Colymycin ? I feel generally better, less sputum altogether, but it is still green mid-day...
  10. R

    Raising Ferritin Levels

    I had IV Iron Therapy. Way faster than the pills. I didn't know that Pseudos thrive in Iron ... Can you give more info pls ?
  11. R

    Anyone using a hand held percusser like the Foredom or Flimm Flighter?

    I'm interested in buying a compact and as quiet as possible percusseur. Any suggestions ? RDT.
  12. R

    Voice alteration with meds

    Thank you ! I will try this :)
  13. R

    TOBI/TOBI Podhaler

    Bigstar, Thanks for taking the time to encourage us all :)
  14. R

    Voice alteration with meds

    Hi ! My voice has extremely changed (raucous) ever since TOBI and I have a bit trouble talking. I am not taking TOBI anymore (don't tolerate it) but still have that problem, I think Pulmozyme alterates the voice also, and probably all nebulized meds and cortico-steroids. Any suggestions how to...
  15. R

    Need Help (Altera + sterilize with Philips Avent)

    Thank you :)
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