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6 patients? This is hardly statistically significant. Additionally, I think the reference point of bacteria count is not really that relevant or easily counted to be accurate. I'd like to see what the FEV1 of these 6 patients were overtime. I don't think this proves much of anything.

6 patients? This is hardly statistically significant. Additionally, I think the reference point of bacteria count is not really that relevant or easily counted to be accurate. I'd like to see what the FEV1 of these 6 patients were overtime. I don't think this proves much of anything.

raises hand! I'm a proud Paraguard user. I'm very happy with it.

raises hand! I'm a proud Paraguard user. I'm very happy with it.

<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>Anomie</strong></em> Yeah, they don't want their investors to see what people are saying about the new drugs until they've verified everything and are ready to release a statement.</end quote> BINGO! And as Harriett mentioned it...

<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>Anomie</strong></em> Yeah, they don't want their investors to see what people are saying about the new drugs until they've verified everything and are ready to release a statement.</end quote> BINGO! And as Harriett mentioned it...

I think everyone when they speak of pancreatic sufficiency should not only mention if they take enzymes or not but also if they take ADEKs. I have been in the study for Kalydeco since 2008 and have not heard any researcher say definitively that anyone thinks this is drug is going to change...

I think everyone when they speak of pancreatic sufficiency should not only mention if they take enzymes or not but also if they take ADEKs. I have been in the study for Kalydeco since 2008 and have not heard any researcher say definitively that anyone thinks this is drug is going to change...

I have never heard of any FEV1 restrictions with Kalydeco and consider myself well informed on the medication. Good luck!

I have never heard of any FEV1 restrictions with Kalydeco and consider myself well informed on the medication. Good luck!

Brad cost is not based on whether someone has the gene or not. The price of a drug whether used off label or not is the same. As I recall you have G551D so how's Kalydeco going for you may we ask?

Brad cost is not based on whether someone has the gene or not. The price of a drug whether used off label or not is the same. As I recall you have G551D so how's Kalydeco going for you may we ask?

Was the sweat test done at an accredited cf center? If not, it might not be accurate. So now that you have a negative sweat does that convince your doctor to do a full genetic sequencing since the it did not conclude that she has cf? The genetic sequencing will help you 'close the book' once and...

Was the sweat test done at an accredited cf center? If not, it might not be accurate. So now that you have a negative sweat does that convince your doctor to do a full genetic sequencing since the it did not conclude that she has cf? The genetic sequencing will help you 'close the book' once and...

I didn't find your post weird at all. I think you handled the topic very tactfully. I would search the site for PGD and find some people who talked about doing it and private message them to see if they have a sample letter they wouldn't mind sharing. One user I can think of is mneville but I'm...

I also started a thread on this when it was first approved. I couldn't believe it was approved with this packaging. The peoplet that participated in the clinical trial said they never commented on it b/c they thought it was packaging just for the trial. Always speak up people!

I also started a thread on this when it was first approved. I couldn't believe it was approved with this packaging. The peoplet that participated in the clinical trial said they never commented on it b/c they thought it was packaging just for the trial. Always speak up people!

Also, Lyme's Disease should be ruled out through IgenX lab in CA. I live in CT and it is my understanding the only lab that can really affirmatively rule it out. A common efffect of LD on kids is swollen joints. Just sayin' May not be CF at all!

Also, Lyme's Disease should be ruled out through IgenX lab in CA. I live in CT and it is my understanding the only lab that can really affirmatively rule it out. A common efffect of LD on kids is swollen joints. Just sayin' May not be CF at all!

where do you live bethylove...perhaps we have someone on the forum who has experienced cf and pregnancy in your area. I was in Philadelphia and changed OBs to go to a high risk OB for pregnancy. Personally I felt the time during pregnancy and ALL THE VISITS was enough time to get to know them. I...