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I am sure you inspire many young people here with your story. I pray to live into my late80's or even 90. my mom is now 91. dad was 86 when he died.

I hope I can live into late 80's or 90

I would push for CF dna blood test. why? All CF is not alike. Why can't the CF clinic at your hospital order this?

Appeal that in writing immediately and send it certified mail. It absolutely does change treatment. CF means you need a CF clinic and CF specific meds like pancreatic enzymes, orkambi, specific antibiotics and nebulizer meds. PCD does not use the same meds. Accurate dx affects not only health...

I will call it like I see it: ignorant, stupid and egotistical doctor. Ditch this person and find a new doc and a better doc. I test negative on sweat tests and I have CF. Get a DNA blood test - your pediatrician/PCP can order it. Heck any doctor can order it. A GOOD doctor will fight with the...

Sorry don't have a time to read thru everything. A blood test confirmed CF. Get the blood test - demand it. Sweat test is *not* dependable!I test negative on sweat test and my DNA shows CF. Also, there is a disease similar to CF. I can't think of the name of it. Google "diseases like CF" and you...

You certainly have the symptoms. May the best result happen for you.

Cam: Hang in there and visualize yourself being well. God bless

Printer sorry to hear of your woes. I wondered where you had been thinging of you. be well.

120's are usually where I am

I like the lyrics and the rap/

If you don't need it, don't take it. These clinics want those of us with rare mutations to take things we don't need to observe the affects. I won't be guinea pig until I NEED the meds That's my two cents.

I sent you a PM

Jono: talk to a good GI doc about xifaxan. It is used to treat SIBO. your symptoms sound like what I had for two years before I ended up with full blown SIBO

sent you a PM

I agree. the week flies

For anyone taking xifaxan, it is VERY expensive. Go to www.xifaxan.com and look around for the coupon. download it and bring it in. You wll have a $0 copay

Ask about xifaxan

I had a bad bout of SIBO last month. Xifaxan is the med of choice for this condition. I will spare the details but was in the bathroom 50x a day, literally, if not more for three weeks before I was diagnosed. I now follow a SIBO diet. I feel much better. If I eat one thing I shouldn't I feel...

Thank you. size 40 is what USA size? 10?