Search results

It has been said, out here, that Printer does nor suffer fools easily. Any parent who thinks that they know more than a CF Specialist, Mother or Father, is a fool. Any parent who thinks that they know more than the CF Specialist and stays with that Doctor is a bigger fool. Any parent who...

mrsRLP920: Ambry Genetics is no more the "gold standard" than several other highly qualified genetic laboratories that do FULL CYSTIC FIBROSIS SEQUENCING. Bill

I would commend you on your insight not to mention your medical knowledge. It is a rare Mom who is able to determine so clearly that this Doctor wants to order unnessecary tests. Now just because your Daughter is 16 and 5' 2" and weighs 94 pounds should be of no concern to the GI Doctor. He...

Casey: I have CF also, I'm 74. I was a lifeguard on an Atlantic Ocean Beach for five years. I played college varsity basketball (but not well). I am college educated and have been married for 51 years. This site has a ton of CF Patients over 50. Don't let anyone tell you that you will...

dtc0507: I sent you a private message. Bill

dc9381: One may conclude that being tested for 1000 mutations is "a ridiculous amount" however there are more than 1800 known mutations. 1000 is only half of the test that is needed. Maybe you had a FULL CYSTIC FIBROSIS SEQUENCING (1800-2000 mutations) if not, I would suggest that it is in...

huntersmom: Thank you for your reply. As I said, I am not an expert but in my opinion, you are doing everything correctly. The only thing that I could suggest would be getting a second opinion with a CF Specialist in another Approved CF Clinic. Bill

There is a condition that is called Bacterial Overgrowth. The symptoms that you describe could be that condition. I have suggested prior to this, that you drive up to Boston and see Steve Freedman. Sooner or later you will agree. Bill

wheezey: I was diagnosed at age 47. Nothing has happened to you other than having a name for your issues. Nothing happened when the Doctor said that you have CF that wasn't happening before. You will go to clinic and begin a program that will walk you through a very long life. Good luck...

hlyterra: If you are not happy with your clinic I would, respectfully suggest that you try Boston Children's. It is a straight run down 95. Good luck, Bill

dc9381: How is it that you know that you "don't carry the gene"? How much testing has been done on you? Bill

There are more than 1800 mutations any 2 will cause CF. 1800 X 1800 = 3,240,000 possible combinations, therefore that many strains of CF. Together with this, there have been multiple cases of identical twins each having the same mutations and the same treatments, having different symptoms of...

Ratatosk: I understand what you are saying. The PCP that I had at the time of my Dx would not accept that I had a Real Cystic Fibrosis, he would always say that I had Cystic Fibrosis Syndrome. I changed to a new PCP right after that. My comment was BE CAREFUL, for the reasons stated. Bill

Ratatosk: Your hubby is wrong, you are not paying for appointments and tests, your health insurance company is. Be careful in demanding tests that your Doctor says are not indicated. If the insurance company refuses to pay, (based upon your Doctor's notes) it will be your sole responsibility...

HOLY SH--. Your child's life expectancy is NOT minimal. I am 74. I was a lifeguard on an Atlantic Ocean beach for five years. I played varsity basketball in college (not well though). I am College educated. I have been married for 52 years. This site is full with CF Patients over 50 years...

A FULL CF SEQUENCING is obviously indicated and is the next step. Why are you opposed to this? Bill

I am not an expert but I will comment. You have not told us where he is being seen and who is doing the sweat tests. I would be interested in what level of genetic testing was done. There are more than 1800 known mutations, any two of these will cause CF. 1800 X 1800 = 3,240,000 possible...

Love: I hope that you are correct (again). Bill

Hi: I am 74 years of age. I was a lifeguard on an Atlantic Ocean Beach for five years. I am college educated. I have been married 52 years. Regretfully, I have lost two younger siblings to cancer. Best of luck to you both, Bill

Liz: I feel like I'm talking to the wall. Your child needs to be seen at an APPROVED CF CLINIC by a CF SPECIALIST. The Sweat Test given by non CF Specialists is not as thorough as that given in a CF Clinic. Good luck, Bill