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    Fecal elastase test

    Hi all~ About to get a fecal elastase test and was wanting to compare notes on results and mutations. I'm PI (5 creon with meals and CFRD) <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks!
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    Rallying the troops.... we need to get together on this

    Hi everyone~ I have some crazy news that I think we all need to be aware of as we go forward in our agreement to take the vertex drugs. I had become increasingly concerned about CFers getting sick and experiencing more exacerbations as the vertex drugs were being discontinued after Phase II...
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    Getting a script for Kalydeco if you are not G551D

    OK to further add on to what anchorman said: I just called Vertex to speak with them about doctor's prescribing Kalydeco off-label. Here is what I learned~ Any doctor, any where can write a script RIGHT NOW for Kalydeco for any patient with CF regardless of mutation. They (vertex) do not...
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    To all the green smoothies drinkers...and anyone with pseudo!!

    Hi All! Hope you are all well. i ran across this because I have been researching purple potatoes <img src="i/expressions/face-icon-small-smile.gif" border="0"> The chemical that gives purple potato is hue is called anthocyanin...a very powerful antioxidant and polyphenol. If you google it, you...
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    To those on kalydeco---Lauren (your thoughts, please)

    Just a quick question about when you first noticed something "different" after starting the kalydeco? It intrigues me and I was wondering if you had the same experiences. For instance, when did you start moving out old junk~ Thank you :-)
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    770 approved!!!!!!!!!

    Approved for G551D. And, to make it even more exciting, it is going to work on other gating mutations...
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    Cepacia in Tylenol

    From CNN: NEW YORK (CNNMoney.com) -- The Food and Drug Administration confirmed Wednesday that the bacteria found at the Johnson & Johnson plant that produced the recalled children's medicines was Burkholderia cepacia, a bacteria often resistant to common antibiotics. The company said that...
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    Cepacia in Tylenol

    From CNN: NEW YORK (CNNMoney.com) -- The Food and Drug Administration confirmed Wednesday that the bacteria found at the Johnson & Johnson plant that produced the recalled children's medicines was Burkholderia cepacia, a bacteria often resistant to common antibiotics. The company said that...
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    Sonia's obituary

    <a target=_blank class=ftalternatingbarlinklarge href="http://www.bismarcktribune.com/lifestyles/announcements/obituaries/article_1b431796-5635-11df-8e87-001cc4c002e0.html">http://www.bismarcktribune.com...8e87-001cc4c002e0.html</a>
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    eFlow

    Hi Guys! Just wondering if anyone has access to the new eflow device that has adjustable particle size and LED screen? Really need to know if it is being used yet..
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    Started a Christian business

    Hi Guys- Hope everyone is hanging in there. I read the boards daily, but don't really post anymore. I have been really busy with a new business I design Christian Banks that teach children how to give to others. Anyway, if any of you are looking for a sweet kids gift for Christmas, birthday...
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    Started a Christian business

    Hi Guys- Hope everyone is hanging in there. I read the boards daily, but don't really post anymore. I have been really busy with a new business<img src="i/expressions/face-icon-small-smile.gif" border="0"> I design Christian Banks that teach children how to give to others. Anyway, if any of...
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    Probiotics and transplants

    Hi Guys- I know that Risa takes a probiotic and she is post transplant. Anybody else? and which probiotic do you take and did your transplant center encourage it or include it as part of your treatment? Thanks so much!! mandy
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    Panting...so hard!!

    Hi Guys- So I have been reading a lot about the diaphragm and how important it is in making the lungs work. As it has been posted a ton, breathing correctly with diaphragm is so important for us and yet we all begin to use the muscles around the lungs to help with all of the work at getting...
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    Please help me....

    Hi Guys- I have been doing a lot of research lately and I have written Dr. Richard Moss (Stanford) about testing Gamma Interferon in those with Cepacia. Of course, they would start off by testing mice and cells, but we need them to pick back up this research. Moss did a study with inhaled...
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    Glutathione...not a believer yet????

    Abstract - selected Article Figures/Tables References Purchase PDF (110 K) E-mail Article Add to my Quick Links Related Articles in ScienceDirect Acute renal failure in CF patients chronically infected... Journal of Cystic Fibrosis 252 First capsule endoscopy studies in...
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    Cepacia on same floor as non- cepacia patients

    Hi Guys- Well, I am about to be admitted to my new hospital....yikes. I finally switched clinics from Dallas to Denver bc they are much more aggressive here in Denver. anyway, I hate being admitted...I am so afraid of picking up a new germ. At this particular hospital, all cfers are on the...
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    Do you eat onions??

    Hi Guys- I just read a report released in early 2008 that scared the crap out of me about the amount of cepacia in/on onions. I know Q stayed away from them for this reason. Anyone else??? I use them all the time in cooking, but now I am rethinking my onion usage.
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    miglustat

    I know everyone is sick to death of hearing this may be it, but this is a very positive step and it is a drug already approved by the FDA to treat another orphan illness. Don't shoot the messenger!!! It is moving very quickly and is already in phase IIa trials in Spain. And, Preston Campbell...
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    Pulmozyme and bleeding....

    Basically, for those of you who have issues with Dnase, they studies are out there you just have to research. And this is a study from 1998, that apparently every cf doctor has never seen. This is an excerpt from a study on Dnase and cf... "<b>Within the first hour following rhDNase, not only...
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