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    Should Cystic Fibrosis be declared a disability?

    Oh, so it's not considered a disability in the States? In Spain it's been so for many years, and my mom has fought that people would consider us "less valuable" (dis-abled). It carries a special status but we don't get any financial aids by it, just some very minor tax discounts and free public...
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    Anyone get a copy of their PFTs at clinic visits?

    Of course you have the right to get a copy of your records! My Mallorca doctor always gave me a printout, my Madrid doctors some times did, and my Swedish doctors don´t print them out but I have full access to see and make notes of the computer screen - and can of course get a printout. Claim...
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    Great idea! I have a bunch of that in my Spanish blog, Keep up the good mood! It improves the immune system. :)
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    Surprising Results with Essential Oils! Give it a Go!

    Awesome information! My experience with oils is that my totally resistant pseudomonas, after doing vapors (plain boiling 1 liter water and adding a few drops of oil, breathing under a towel) with lavender oil, the pseudomonas became sensitive to 2-3 antibiotics. :) I will try the combination...
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    Where do you keep all your medical equipment and medicines? And where do you do them?

    I don't have a vest but all the meds take a lot of space. Some I keep over the chest of drawers, I also have 2 drawers devoted to medication and one shelf in a closet. If you designed a cabinet I'd be happy to see how it looks like! :)
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    Traveling with all of our meds/eqp :(

    I've traveled all my life, even attended college abroad (in the States - I'm from Spain) so I'm used to carrying meds. With the old nebulizers it was really heavy, hence I adore the eFlow!! :) I use a neti pot with plain salt, for sinus rinses. You could ask at the hotel to get boiled water to...
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    It is hard but really necessary. Try going with a friend, listening to music so you can focus on something else (rather than the exhaustion you are feeling), try biking in the gym rather than running - it's easier... Hang in there!
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    essential oils

    Lavender oil (boiling water, pouring a few drops of pure oil, breathing in the steam under a towel) made my pseudomonas sensitized again, when they were resistant to everything. I love oils and use them a lot. I have medical studies I can share, feel free to email me at :o
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    Gluten free? Anybody know anything?

    YES! I realized I was gluten intolerant 2 years ago. A couple weeks ago I attended a fantastic seminary by Dr. Tom O'Bryan, who was touring Sweden. It turns out that current hospital tests only diagnose 1% of the population (those who have total atrophy of the gut lining) while 40-60% of the...
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    Advice / Suggestions please - Chronic GI Symptoms - Docs don't know what's going on

    I see this post comes up again in a time when I have new information. From my own experience I would ask you what enzymes you are taking. With the old Pancrease (pancrelipase) I was doing fine, but the new Creon (pancreatine) caused havoc on my digestion. I have recently purchased Pertzye (out...
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    A miraculous home remedy !!!!!

    What percentage of salt are you talking about? NaCl, right? Purified sea water is a known remedy, I have not seen much improvement from it though.
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    HELP - Major drop in fev1

    I dropped from 80% to 36% in a little over a year. It turned out I had become gluten intolerant. Nearly no doctors ever care about that, but fact is that most people have inflammatory issues with wheat and don't even know it. Since dropping gluten my lung capacity was able to recover to around...
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    Hi Enzo, I guess the wrong or right issue depends on the point of view. I did research it quite a bit. Whearas most religions consider it "wrong" mainly because it may lead to thinking more about sex and to avoid a real relationship (which I do not consider to be the case), most psychologists...
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    does anyone take oil of oregano every day

    I often smear it on my footsoles. How do you use oregano oil? Lavender helped my pseudomonas become sensitive to antibiotics again!
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    It was happening to me over the past 2-3 years at a growing rate. Turned out I had developed gluten intolerance. I quit gluten, and boom, flat belly all day long. If you are already pretty sure you're on the right dosage of enzymes (which is another reason for big belly), you can give it a try...
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    Friends announcing pregnancy

    I can relate, too. I'm also 33, and have always thought of having 1 child (at times I've thought of more but I'm not so sure about that). Yesterday I was talking to the nurse in the CF clinic here in Sweden (I moved 1 month ago) and she said they have many couples where the woman has CF and they...
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    New website on CF nutrition and natural health care

    Yay for like-minded people! I´m 33 and I´ve created a Spanish-speaking facebook group about natural treatments (emphasis on essential oils, herbs, etc) for CF. Also covered in my Spanish-speaking blog on treatments I´ve found around the world. Thanks for your time! Greetings from Sweden! (I just...
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    Is there such a thing as too many enzymes?

    What I was taught to do, when first treated in Sweden as a child, was to check the stool consistency. Too loose (diarrhea) meant I had taken too few enzymes. Too hard meant I had taken too many. I've always followed this rule. It worked fine with Pancrease, not so well with Kreon but that's a...
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    Has anyone had any experience with using public Steam Rooms and Saunas

    I've used them, in particular dry ones. The humid ones are a pretty dangerous breeding ground for all kinds of bugs and I feel they're a bit nasty when you think of it. I've never had a problem with dry saunas, even though my lung therapist is quite against anything that resembles a spa. I'd...
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    Help, please!

    Hi Sarah! I'm sorry you're having this trouble. Obviously one of the biggest enemies of disease is the patient himself, if he doesn't want to do anything about it! Perhaps some "hope" might help? Reading stories of other people who are living and thriving (while taking meds too!). I'm 32 and...