Cystic Fibrosis Forum (EXP)

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    is there ever goin to b a cure or atleast something that stops progression

    YES! YES! YES! Is is avail now. But not legal in the U.S. I am living proof that it works. Adult Stem Cells brought me back from the dead. and FEV1 from low teens to high twenties so far. going for my third treatment in couple of weeks. I am the third CF patient that my stem cell doc has...
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    Anyone get a copy of their PFTs at clinic visits?

    unless the law has changed, by law you are the owner of your medical records. I have always asked for a copy and they just print another copy and hand it to me. As much as I don't like Vandy, they always gave me a copy. Now I go to a doctor at the Cleveland Clinic in South Florida, and do the...
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    F508 Delta and R117H .... CFRMS or Cystic Fibrosis Related Metabolic Syndrome

    not sure what CRMS is, but if you mean being in a hyper catabolic state, that is fairly common with CF. I did not know they are now calling it a syndrome. And the aquagenic wrinkling? does that mean the fingertips getting wrinkled like a prune when in the water. I get that too. doesn't that...
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    My Next Stem Cell Treatment, Need Your Help

    I am 53 and planning to go in for my 3rd adult stem cell treatment in Sept. Should be off oxygen by Thanksgiving as a result. I know another CF Warrior going in a couple of weeks, and can't wait to hear about her results in the next few months. Can't disclose her name, because most CF docs get...
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    colloidal Silver?

    silver is a heavy metal and is poison to the human body.
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    Headaches and Muscle Cramps

    Possible Causes & Solutions Headaches and Muscle Cramps 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...
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    Bleeding Lungs

    Solution for Bleeding Lungs Every CF warrior needs to know about this whole food supplement. It is called Cyruta Plus. Made by Standard Process. It is sold by some chiropractors. Call the company at 800-848-5061 and they will give you list of resellers in or near your zip code. No negative side...
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    Stem Cell Therapy- Has anybody done it or know anyone who has?

    YES. ME. I too was concerned with scams. there are internet scams that will ship you stem cells. WHAT? from where. Some sites claim that they will treat you with stem cells from animals. SCARY. The only stem cells you want are your own and those from close genetic matches. That will...
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    Print your own medicines. !?

    love to see innovation thriving. too many naysayers that want to preserve the status quo and fear change. Most of what we have and use everyday was at one time thought of as impossible. Kudos to the innovators.
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    Be Nice

    I have quit supporting the CFF altogether because of rudeness in general toward the actual CF patients. And the realization that they really do not care about the patients. they care about the money they raise. They are a fund raising arm of the drug companies, and I have learned that reality...
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    Advice for book needed.

    Hi Ian. I want everyone (patients and anyone who cares) that there is a treatment TODAY that will reverse the damage of CF and improve health. But rather than waiting for organs, we are waiting for money. The huge benefits: NO REJECTION, no huge amounts of drugs post procedure, will reduce...
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    What to do for stay at home work?

    I am a ViSalus promoter and make commissions. This biz is not for most people, so you decide if it is for you. But here is the cool thing. You can kind of try before becoming a promoter to see if you can make money in this biz. Don't join as a promoter because that will cost you $500...
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    Coffee

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    Portraits: Adults with CF Fundraising book

    I sent you an email about other related stuff. But even if there is not connection there, I would still like to participate in your photo journal book.
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    Portraits: Adults with CF Fundraising book

    since photos is a key, what about "Watch Me Breathe"
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    Coffee

    Kim, I am not sure if low potassium is always related to CF. But I think running low on electrolytes may be related. To me it is very similar to us losing lots of salt in our sweat. Salt is one of the electrolytes our muscles need to function well. Magnesium and Potassium play a role in that...
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    Coffee

    Hi Kim. the beet on the bottle is just part of their artwork logo to reflect the whole foods that they process into the supplements. Here is a link to the Cyruta Plus info: https://www.standardprocess.com/Products/Standard-Process/Cyruta-Plus No beets in this one, although if you are craving...
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    Coffee

    Kim, I do not have a suggestion for inflammation, but i have posted before the best solution I know of for bleeding. I know it works, because I have been using for over 15 years. I do not get the massive lung bleeds anymore, but sometimes get nose bleeds. here is what I posted: Cyruta Plus for...
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    Headaches

    Another possibility causing headaches. from all the stress, low oxygenation to the muscles, my back and shoulder muscles are knotted most of the time. when it gets too bad, it pulls me out of alignment. In that case, a chiro adjustment and deep tissue massage helps to relieve the headaches.
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    Siblings - similar severity?

    thanks for the info. looks very complicated, but I get that a gene can alter the way another one is expressed and can account for the variations in the same mutations.
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