Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 Hi Torsten, I have never thank you for inviting me to this group, so here goes, thank you so much for taking the time to invite me. This group is a lot more positive than the one I came from. I am not very good with negative thoughts. Thank you to all of you that responded to my question about taking a to the Great Strides walk. There is a lot that I need to learn about CF and how to keep a as healthy as possible, by the way I did not know the 3ft rule. Also, when a was dx last may, the doctor order a sputum culture, which came back good in fact she has the good flora in them. Well, here is where I need help, How reliable are these tests? This one was not done at a cf center, but at an independant lab, insurance issues. I have read that they are not as accurate as the ones done at a cf center, any comments? Should I have her tested at the cf center? The egg gargle got my attention, can we get it? This is kind of pretentious of me, but God I would mortgage my house and go to Sweeden to get it!! Thank you everybody, mom of a 9 wcf, Venanzio wocf, Pepe 3 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 Hi , Sorry if I didn't explain the 3 ft. rule, I didn't realize how new you were to this. That rule just is that even with masks on inside, or outside with or without them CF patients should not be closer to each other than 3 feet. This cuts down dramaticly on cross infection. About the CF center vs. other for tests. The main one that is usually a problem is the sweat test. Other tests can usually be done with a fair amount of accuracy at other places. Thanks and questions... Hi Torsten, I have never thank you for inviting me to this group, so here goes, thank you so much for taking the time to invite me. This group is a lot more positive than the one I came from. I am not very good with negative thoughts. Thank you to all of you that responded to my question about taking a to the Great Strides walk. There is a lot that I need to learn about CF and how to keep a as healthy as possible, by the way I did not know the 3ft rule. Also, when a was dx last may, the doctor order a sputum culture, which came back good in fact she has the good flora in them. Well, here is where I need help, How reliable are these tests? This one was not done at a cf center, but at an independant lab, insurance issues. I have read that they are not as accurate as the ones done at a cf center, any comments? Should I have her tested at the cf center? The egg gargle got my attention, can we get it? This is kind of pretentious of me, but God I would mortgage my house and go to Sweeden to get it!! Thank you everybody, mom of a 9 wcf, Venanzio wocf, Pepe 3 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 Hi & , etc I would not agree with having sputum (or throat) cultures done at a non CF center lab. We used to have to use outside labs for insurance reasons too and they never got it right. We had to have 's CF doc write the insurance and explain that most labs don't do CF cultures and there is a special medium they need to grow in and if they aren't done at CF labs they aren't worthwhile etc. So now they do her cultures at the CF Centers lab and everything is much better. Other tests such as blood, urine are ok to be done anywhere. love, M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 In a message dated 4/9/2003 4:34:36 PM Central Daylight Time, annapalazola@... writes: > The egg gargle got my attention, can we get it? This is kind of > pretentious of me, but God I would mortgage my house and go to > Sweeden to get it!! > > Thank you everybody, > > mom of a 9 wcf, Venanzio wocf, Pepe 3 nocf > I know I would too!!!! If it works and according to our CF doctor is has worked on patients there for the last 8 YEARS!!! That's good enough statistics to me!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 i missed the egg gargle ,what's the deal with it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2003 Report Share Posted April 13, 2003 In a message dated 4/11/2003 7:28:43 PM Central Daylight Time, sandrakkm@... writes: > i missed the egg gargle ,what's the deal with it? > It is used in Sweden and it is a protective barer that helps keep psuedomonas from getting in the lungs. It is not yet FDA approved in the USA but they have been using it in Sweden for the last 8 years and have kept it out of the lungs of CFer's there. They are going to start doing studies here in the states but will probably take 2 years before it gets approved. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2003 Report Share Posted April 13, 2003 In a message dated 4/11/2003 7:28:43 PM Central Daylight Time, sandrakkm@... writes: > i missed the egg gargle ,what's the deal with it? > It is used in Sweden and it is a protective barer that helps keep psuedomonas from getting in the lungs. It is not yet FDA approved in the USA but they have been using it in Sweden for the last 8 years and have kept it out of the lungs of CFer's there. They are going to start doing studies here in the states but will probably take 2 years before it gets approved. Deb A Quote Link to comment Share on other sites More sharing options...
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