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Cystic Fibrosis Forum (EXP)

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For those struggling with m abscesses

occupyjapan

New member
I was in a CF group on Facebook that started calling cysteamine a wonder drug for CF because they saw some research on it; a bunch of them got scripts for Cystagon (cysteamine bitartrate; not the same formula as Lynovex, which is the CF preparation under investigation); many of those ended up in the hospital with severe exacerbations.

I'm probably farting into the wind by urging caution on a forum where members regularly talk about nebbing everything from colloidial silver to dilute hydrogen peroxide, but please be careful if you decide to take this drug.
 

Aboveallislove

Super Moderator
I've actually heard the opposite with several having positive results from off label use, but with following dosing under investigation. Personally I wouldn't pursue unless other things aren't working.
 
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