Search results

  1. R

    Keep getting sick

    Yeah it sucks. It is the rebound effect. What is not killed comes back with a vengeance. I find that I cut out sugar and dairy that helps. Once I finish IV anti biotics from day one I work hard on the vest and breather etc. Sometimes you are in a cycle that is hard to break. Happens to me too.
  2. R

    Back from Denver National Jewish.....(Kalydeco trial)

    What is a good test to check for liver function, bile issues, enzyme function etc. Any ideas what is a good way to thin out the bile issue. What is the reference to peanut butter poop, the color or the float issue. Lighter color poop means a bile issue? Thanks
  3. R

    How many CFers are 55 and older??What is your age if you do not mind telling us? :))

    Interesting about the celiac issue. I am 43 but diagnosed with celiac before CF( At age 3). ONce they diagnosed CF then they disregarded the Celiac. Fast forward 33 years and Celiac diagnosis popped up.
  4. R

    Small victory -- no diabetes for me

    If I knew now what I did not know then, I then would take this as an opportunity to really understand blood sugar and CF. You have a chance to keep yourself healthy and stave off CFRD. It is just another scary thing that we do not want to deal with, trust me I've been there. Our bodies are...
  5. R

    balking at higher salt dose

    Now look at this through the CF lens. How do we differ and how do we function similarly. Just because we have CF does not give us the green light to abandon common sense. Salt ScienceWhy do many athletes need electrolyte supplementation?Hyponatremia, a medical condition marked by low blood...
  6. R

    balking at higher salt dose

    Salt is needed for CF people but in a form that is natural. Sodium Chloride ( table salt, salt pills, tv dinner salt) is the chemical ingredient(heated to 1200 degrees and is formed and crystalized and is not good for health.( that is why cardiologists tell the heart patient to watch their salt)...
  7. R

    Because I have CF, do I have an advantage when it comes to fat loss or fat gain?

    We struggle with weight from a myriad of reasons. 1. lack of enzymes that naturally digest food( especially fats) and all the accompanying secondary lack of that process. 2. Lung infections and inflammation soak up a lot of calories and you are always going to be at a deficit there. 3. Lack of...
  8. R

    How many CFers are 55 and older??What is your age if you do not mind telling us? :))

    Ok yesterday at clinic someone asked how old I was and replied 43. Not as old as you are asking about but nonetheless they said keep up the good work. Just thought I'd pass along that us 40+ are growing in numbers and now have a better shot with these new drugs coming out. Hang in there and stay...
  9. R

    23andme: Genetics Website

    Interesting. If we have DF508 could we have other mutations and would it even matter to know. Does this test list other genetic issues we might have?
  10. R

    Tobi Pod-haler! How to use Tobi pod-haler and personal experience

    Thanks waiting to get a tobi pod inhaler to try.
  11. R

    What do you really think the Vertex discoveries mean for us?

    Thanks for the boost. I am trying to get on this study but still hold out that there could be help on the way soon.
  12. R

    doctor visits feel like a fight. something always happens. what is your visits like?

    [One thing that helps is if you are a compliant patient or at least trying to be. From the docs perspective I am sure CF is a crappy disease to treat. I am sure they want better tools to treat us and it must be frustrating to only have a hammer as a tool. If we do not do our treatments then they...
  13. R

    Anyone take this? (Long-term inhaled dry powder mannitol improves lung function in CF

    Anyone take mannitol treatments? Long-term inhaled dry powder mannitol improves lung function in CFAdding inhaled dry powder mannitol to standard therapy for cystic fibrosis produced sustained improvement...
  14. R

    Manuka Honey treatment for Psuedomonas

    What have you found taking the honey. Are you consuming it or breathing it?
  15. R

    Discover article on CFF

    fingers crossed, but look how long this takes
  16. R

    Two conflicting diets, kinda confused.

    Yep conflicting diets. I think most CF's have a problem with wheat. I also have Celiac and am gluten free. It is a challenge but very easy to follow a gluten free diet. Instead of wheat bread you eat gluten free bread, like Udis or Canyon Bakery breads are the best. Instead of pasta, eat rice...
  17. R

    Weight Gain

    Love the bee products and business, keep up the good work. >http://forum.cysticfibrosis.com/thre...ainer-Smoothie , this is a great alternative and is gluten...
  18. R

    Questions about PharmaNAC regarding CFRD

    Have you noticed any difference in your congestion?
  19. R

    Weight Gain

    Snacks and junk food wont cut it, wake up and grow up about your health, today. Seriously, reading this and thinking, I use to eat this crap. This is the opposite approach of health, period. I do not know where to start but I will. You are what you eat, sounds trite and too simple but it is...
  20. R

    What kind of job do you have?

    I have a gluten free business, work from home and a small warehouse. We wholesale and retail gluten free products online. Before that I owned a real estate company, as a broker. I use to own a juice bar. I worked in marketing the years before that. One thing I should of done is to accrue enough...
Top