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  1. L

    Yoga good

    If anybody is benefitting from Yoga at a fitness and wellbeing standpoint might want to delve a little deeper into metaphysical Yoga. A little like meditating during postures or routines, a person can "think" a lot of issues into a better state. Blood pressure, blood sugar or a lingering pain...
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    Is this low libido?

    Enzo, I re-read the post that confused you. It seems to have about half of everything missing. This is what happens to me when I write something, not bother to save it and try to re-create it later. It was far more coherent the first time. Sorry, LL
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    Are unvaccinated children a threat to PWCF?

    I believe the risk in being around non vaccinated people is the potential they may be sick. Whooping cough and all the other inoculations and vaccinations may carry over after you start immunosuppressant drugs. If my understanding is correct, immunosuppressant drugs kill off the phages or white...
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    Weight Gain

    Somewhat to my surprise, when I increased my Creon with high calorie meals, more than usual by about 20% I started gaining back weight. Just a thought. LL
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    Is this low libido?

    jshet, Thank you, thank you thank you. LL Enzo, I had several points that were mostly answered by jseht and Pat. I'll guess at one. "Don't create a problem to justify another". People have died as a direct result of embarrassment. Coked up business women and men die in the ER every day...
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    High Morning Blood Sugars

    This took a while to get answers about blood sugar numbers. A year ago my numbers stared going up and I was figuring maybe a glucose tolerance test was in order. NOT! Beginning with 130 to 150 spikes that drop to normal most times, my doctor looked at my log of serum blood sugar numbers, smiled...
  7. L

    I love my eFlow and I'm an Orangutan!

    Pretty Cool, Thanks for the post. I know this Orangutan, but never knew he was being treated!
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    Is this low libido?

    Yes. I have been trying to think of a way to explain why your questions aren't inappropriate when you are tryng to have the best health. Maybe "Lion King" and "the circle of life" is within your movie experience. If not watch it soon. From the perpective of a teen, sexual attitudes seem...
  9. L

    Kalydeco

    Kalydeco is this little Idol I bow to every morning. I am holding back on the trial because my mutation is heterozygous S1235R and I am sixty three years old. That irreversible damage has pretty well done its best and frankly I would rather see somebody else on the drug. Ever since CF’s...
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    Gross, embarrassing things that come with CF!

    Enzo, I am switching over to your post on Testosterone so look there. Megan420, My apologies, I didn't mean to derail your topic post. I will be more careful in the future. LL
  11. L

    Gross, embarrassing things that come with CF!

    CORRECTION; I made a major typo. When I was writing my post I couldn't remember if the supliment was creatinine or creatine. I corrected my post but not before it was captured in a quote. Creatine information is less reliable than I thought. Wikipedia's writeup is typical. It does jump start...
  12. L

    Gross, embarrassing things that come with CF!

    Maybe it is the other way around. You find the possibility of low T embarrassing. You have a legal guarantee of privacy. If you want absolute assurance ask to update your privacy agreement and list specific issues that can be shared with whom or visa versa. More simply tell your doctor you don't...
  13. L

    Gross, embarrassing things that come with CF!

    If you are timid about asking your doctor about testosterone likely your badly in need of some. Your doctor is just that. She/he isn't your mom or a police officer, a doctor aids you with your health management. There are probably questions out of bounds with a doctor, but not many and...
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    Gross, embarrassing things that come with CF!

    I didn't know how universal CF and rotten teeth were until somebody was describing a CF stereotype at this site and included lousy teeth along with skinny arms, hunched back etc. So yeah, me too, I got this bad hand of cards thing almost to the word when I was a kid. My dental work was...
  15. L

    what to do when i get frustrated/sad/discouraged

    I totally get it, and I think you may have read too much into my reply to your opening post. It isn't so much you, you just summed up CF in your "rinse and repeat" analog of the flat out drudgery of servicing a genetic error. I am looking at your situation and the events that are unfolding...
  16. L

    How do I ask for testosterone? Is it normal for CFers to need testosterone?

    Wait until you hit forty and look thirty! Your doctor is just that, she/he isn't your parent and doctors are there for the very questions you have. Testosterone is being made as fast as it can along with other stress hormones like cortisol and adrenaline. That is just to keep your body fighting...
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    what to do when i get frustrated/sad/discouraged

    Sad and Discouraged sounds bad. Maybe this is the time to discuss an area of health care we seemingly insist on treating ourselves. Genetic drugs and DLTs won’t cure or adequately address our mental health. This is for CFers the patients and CFers the family equally. Whatever you are doing or...
  18. L

    Kalydeco and sinus problems

    This is great news. I follow what people are saying about the effects and possible side effects of this fantastic drug. Something that tickled me was your remark about her sniffling. There are people, not CFers but with allergies and such that have no idea that they sound like a goose with a big...
  19. L

    Elvated ALT levels

    In the short term consider taking a liver detox agent. A maximum dose of milk thistle, an OTC in the vitamin section locally or a specialty store will not harm you. (Maximum dosage according to their labeling). The only obvious toxin from Kalydeco is aspartic acid. I haven't even considered...
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    Gross, embarrassing things that come with CF!

    Here is one that so many deal with but never think about it. Sweat. Whether it is spontaneous whole body sweats during a flare or my personal loathing, really sweaty hands. My hand prints are etched into countless metal and natural materials like leather or varnish. As a teen, if I borrowed the...
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