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  1. J

    Compressor for nebulizer

    Hi , look at this my post...hope it helps <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=9458&highlight_key=y&keyword1=eflow%20rapid">PARI eflow and other devices</a>
  2. J

    Compressor for nebulizer

    Hi , look at this my post...hope it helps <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=9458&highlight_key=y&keyword1=eflow%20rapid">PARI eflow and other devices</a>
  3. J

    Please help, which ULTRASONIC NEBULISER do you use/do you think is the best?

    Amy, lets go to the chat server, if you want to chat...But it will be great if you have a tip for me<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am as is written in my profile from Czech republic (central EUROPE - among Germany, Austria, Poland...)
  4. J

    Please help, which ULTRASONIC NEBULISER do you use/do you think is the best?

    Hi, you are right, but if the nebuliser will be free on the market, there is no problem for me(my friens in US) to order it ...
  5. J

    Please help, which ULTRASONIC NEBULISER do you use/do you think is the best?

    Hi, now I nebulise with Pari Eflow Rapid (about 20ml 7% Hypertonic saline + 10ml 0.9% saline solution in the morning, 15 ml 7% HS + 10ml 0.9 SS at the evening), I find Eflow Rapid great<img src="i/expressions/face-icon-small-smile.gif" border="0">, but only when you have to nebulise less ml...
  6. J

    Are nonsense mutations a particular class of mutation?

    Hi , this I have found on this forum and , yes its true... Here's a cheat sheet that covers some of the most common mutations. Class I mutations (e.g., G542X, 621+1G>T, and 711+1G>T) result in total deficiency or unstable/non-functional CFTR protein. * Class II mutations (e.g., delF508...
  7. J

    question for anyone who can help

    Hi, I have this bug since 1997, up to 2002 it was sensitive to many antb.. But my doc. said its not necessery to treat it, that was fault...Now its resistent to many of them, I was taking Colymicin (inhale) and Cotrimoxazol, but it made a resistence too. I have taken I.V. Fortum and netylmycin...
  8. J

    Are nonsense mutations a particular class of mutation?

    Hi, its nice to see here girl with celtic G551D mutation...these is missence, delta F508 is really deletion mutation, also I am sorry to write that PTC124 is really not for you...My second one is nonsence R553X (nonsence mutations have X at the end), but there are also clinical trials for...
  9. J

    Waking up in the morning

    Hi, I hate waking up too, but after (during) 3 hours long morning therapy is everything ok and I can go biking or playing tennis after that... I just need to cought up about 100 ml of brown and green mucus and than begins the nice day...I am little bit tired after that treatment ( 20 ml...
  10. J

    Which NEBULISER (+jet compressor, ultrasonic etc.) is the BEST

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> We paid 1600.00 for our eflow for our daughter.</end quote></div> Hi, for which one? If the US version will be for 1600 Dollars, its great! Where have you bought it? Have insurance partially covered the...
  11. J

    Which NEBULISER (+jet compressor, ultrasonic etc.) is the BEST

    Hi, the european version "Pari Eflow Rapid" <a target=_blank class=ftalternatingbarlinklarge href="http://pari.de/english/300/310/3130/index.html">european Eflow</a>is absolutely another device than US "Pari Eflow SCF" version <a target=_blank class=ftalternatingbarlinklarge...
  12. J

    Which NEBULISER (+jet compressor, ultrasonic etc.) is the BEST

    Hi, <b>The market is now full of many (new) nebulisers, jet compressors and ultrasonic nebulisers too... Which nebuliser do you find the best? What are your experiences with it? </b> <b>What for a medication can you inhale in it?</b> <b>Is the cleaning and desinfection simple?</b> <b>How...
  13. J

    Just started Hypertonic Saline...Have Q's

    Hi, right now I nebulise my morning HS...I nebulise it for 4 month and I find it very helpful for me. Before HS I was doing in the morning 15 ml saline solution (0.9%) and 10ml Amiloride (something like Albuterol, but european version...). The same I have done at the evening... plus Pulmozyme...
  14. J

    Nonsense Mutations

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> My son has a nonsense mutation and was involved in the PTC124 study in Birmingham Al- there are 4 sites in the US doing the study as well as in Israel- he finished the study in December. He has had more sinus...
  15. J

    Nonsense Mutations

    Hi, I have got one Celtic mutation (G551D) and one Germanic nonsence mutation (R553X) and I live in Slavonic central Europe (Czech republic), interesting and ironical, istnt it?. I am 25 and I have FEV1 90%, moderate lung involvement (3-4 hours daily therapy is necessary) and severe digestive...
  16. J

    Hemoptisis

    Hi, yes vitamin K is very important, also vit .E ....I have never had Hemoptysis when I was playing tennis or biking, it was always after or during my inhalation therapy and expectoration. And usually unexpectaible, just when I have thought..well I have finished my therapy and I feel fine...
  17. J

    What are yours experiences with GSH(Glutathione)... and with DHA?

    Hi, I have searched some information about GSH(Glutathione), it looks good and I want to start take it (if it will be available in Europe). I want to ask you, what experiences with taking GSH do you have. What form and amount of GSH do you take(capsules,drops,inhaled drops?). Do you have any...
  18. J

    What are yours experiences with GSH(Glutathione)... and with DHA?

    Hi, I have searched some information about GSH(Glutathione), it looks good and I want to start take it (if it will be available in Europe). I want to ask you, what experiences with taking GSH do you have. What form and amount of GSH do you take(capsules,drops,inhaled drops?). Do you have any...
  19. J

    Pari eflow

    For Uli from Germany, ist da machne Moeglichkeit, wie kann ich Ihnen kontaktieren oder E-mail schreiben, Vielen dank. Ich moechte fragen auf Ihre Erlebnise mit eFlow, Azithromycin usw. Mit freundlichen Gruessen, Hans81Hans@yahoo.de
  20. J

    The super duper supplement thread!

    Hi, really great idea Sean, thanks. So here are my meds. and supplements: MEDICAMENTS: <b>Pulmozyme</b> 1x 2.5 ml nebulised with european PARI eFlow Rapid <b>Hypertonic saline</b> 2x10ml nebulised with european PARI eFlow Rapid <b>Saline solution</b> 2x15 ml nebulised with european PARI eFlow...
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