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AlmalynRose:
Alot of Doctors are totaly ignorant about CF. There is no question that you have Cystic Fibrosis, you do. You need to be seen by a CF Specialist at an Approved CF Center. It is important to know that there are almost 2000 CF mutations. Given that your husband was tested for the...
I understand and approve. It is just that we are infulenced (controlled) by the smallest common demonitator. Just because there is a study, we don't need to get excited.
It is good that you are keeping us informed.
Thanks,
Bill
If we removed everything from food products, that may have a negative effect on someone, we would only be drinking water. Oops wait, water is not that pure either.
Bill
There is so much going on here. First thank God that you have a PED that is knowledgeable and looking out for your childs wellbeing. Forget any prior sweat tests that were not administered in an Approved CF Clinic. Local hospitals do not do the same sweat test nor do they have CF trained...
Mariah:
I can only speak for myself. I was only able to take Cayston for 10 days before I had to stop. The first treatment and all that followed were very productive as to producing mucus. I REALLY wish that I could have continued.
My tongue felt burnt, like I had eaten pizza cheese right...
Clubbing is a sign of lung problems, not exclusively CF. As it was explained to me, because of a reduction of lung pressure upon the blood flow, oxygen doesn't get to the fingertips in the quantity that it should.
Before I was dx, a Doctor in the ER looked at my fingernails and said, oh you...
Justinsmama:
In my experience. pancreatitis is not dx by enzyme levels. My condition was ALAYS determined by a simple blood test called syrum amulase (sp). If I were you, the next time that he has "pain" take him to his CF Hospital ER and ask for that blood test.
Bill
Mysticrose:
Thanks for the CF info, I really appreciate your help. This CF thing is still very new to me. It was DUMB of me to try and tell you anything. Now, I did read your entire post but unlike you I do lack a proper education and my reading and comprehension skills leave something to...
WOW!!! HELLO!!! Your DD has CF!!! For the rest oh her life (given the lack of a cure) she will be coughing and fighting infections. Coughing is her FRIEND. Coughing brings up the mucus that if allowed to remain will cause lung damage.
I really don't know what you are asking for.
Bill
Solo:
He is the ONLY Doctor in the USA who does what he does. He is a presenter at every CF Conference. All of his time is Gastro/CF related. He only sees patients on Fridays, the rest of his time on Gastro/CF Research.
Trust me, he dosen't need your business and there is nobody on your CF...
Melissa:
My point was that your DD, coughing in gym class, can and will spread the same germs as any other kid in that class. Just because CF is not contagious, everything else that we cough can be.
Bill
Solo:
I take DOXYCYCLINE MOMO 50mg Tab. 2 tab first day then one/day for 6 days.
I gave you the name of a Doctor to see. I know that it is costly to fly to Boston but if you could come here early on a Friday am, you could see him and fly back that afternoon.
If I didn't think that it would...
Solo:
I suffer from bacterial overgrowth. Every 2-3 months, (only 4-6 times a year) for only 8 days, I take an antibiotic. My pancrease is shot and I rely on Creon to digest. I fully understand the gas problem. There was a time that I avoided crowded places. Solo, I've been there and done...
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