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April 28, 2014 CF and Headaches Many CF warriors experience chronic headaches. I have not yet heard from any doctors a clear and reasonable explanation as to why we have the headaches. My suspicion is that CF is not directly the cause of the headaches, but all the stuff we do and go through...

Every CF warrior needs to know about this whole food supplement. It is called Cyruta Plus. Made by Standard Process. Sold by some chiropractors. Call the co at 800-848-5061 and they will give you list of resellers in or near your zip code. No neg side effects. It's the only I use for...

correct, I am in the face of the director of 2 CFF chapters. Palm Beach County and Broward County(Ft. Lauderdale). One has even contributed financially. They know my story and tried to run it up the ladder with HQ. CFF does not want anything to do with me. Their purpose is to raise money...

I am not a medical expert or a scientist, so reading all the technical stuff is often over my head. But after reading some about the different classes of mutations, the malfunctioning process of each class is different. And the process that Kalydeco addresses is not the same process that goes...

Seriously, did I read that right, 150. Out of the tens of thousands with CF. Happy for those 150. But I am not HOLDING MY BREATH waiting for the mainstream medical community. Going that way, I would have expired 3 years ago. And even if the med works for me, it does nothing to reverse existing...

what is a modifier gene?

do your research before doing colloidal silver. I did and have no desire to put such a toxin in my body. Through sputum culture, the doctors will find what antibiotics will control the pseudomonas A. by the way, the most common infection with CF, and probably the easiest to control. As for...

Thanks, TreasureGoddess. As I am sure, many of us have had bouts with that "expiration date". And this is just the latest. God has rescued me from a deathbed more times that I can recount. I am in the process a writing a book. But unlike several books about the CF journey, this one will be...

If we get one mutation from each parent, and both parents are non-symptomatic carriers (that is they each carry only 1 mutation), then it would stand to reason that siblings who have CF (get both mutations) will have the identical mutation pair. Further reasoning, assuming identical environment...

I am alive 3 yrs past my expected funeral date due to receiving adult stem cell treatments. Key word is "adult". As a fellow believer, I am opposed to embryonic stem cell therapies and would not participate in such, even if it guaranteed new life to me. However, my stem cell doctor has been...

male age: 53 ht: 6'1" wt: 150-155 so glad to see so many senior citizens among the CF community. I tell people the dog year analogy. I say I am 53 in CF years, that's like 160 in people years.

also when you take the shakes, don't skimp on the enzymes just because the food volume is low. I take the same amount enzymes with a shake that I take with a full meal. you want to make sure you get all the nutrition.

i have been using zenpep since then. works just as well. no aches.

by the way, I have been doing my power shakes for more than 5 years. If I do not start my day without the protein shakes, i am much weaker later in the day.

I got a better shake for less than half price of shakeology. I actually get mine free because I got 3 other people to also get the shakes. you can check it out at http://garirocks.bodybyvi.com and look for the info about 3 for FREE. even if you don't get yours free, 30 shakes a month is $49...

I know what both of my mutations are, but this is the first time I have seen them put into Classes. What are Class 3 and 4 mutations?

Angelo DiStefano 53, married 20 yrs, living in South FL BS degree from UT, Knoxville, and MBA from Vanderbilt dx at 6 months old, lost baby brother about a year younger. he died at 3 months of age and already had feeding tubes. D508 and PR1066C 6'1" and 150 to 155 pounds love to snow ski, water...

the siblings question is an important consideration. I don't think doctors and other med pro's will approach this subject for non-siblings because of liability. but as soon as I saw the question about 2 non related children, I immediately though about people in close proximity for most of...