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Ank, I mean no disrespect here but the way you type makes it extremely hard to read your posts.

The average lifespan for CF being 37 is for the same reason the average lifespan in the middle ages was around that number: so many people died before reaching the age of 10 or so that it skews things towards a younger median age. If you live past childhood with CF (which, sadly, many still...

For me, I can tell when I need antibiotics (which I haven't since starting Orkambi; yay!) but there's not really an "oh, I need IV's this time" thing. We do orals first. If they don't do it, I get IV's. I've only been on IV's maybe 3 times in the last decade+. When I can tell I need...

I started dating my current girlfriend nearly 4 years ago. Due to past experiences, I always bring my CF up first so that I'm not accused of "hiding something", so I told her about it literally before we even met in person (we found each other via Craigslist in our city, haha). Luckily, my...

Vancomycin is a fine anti-MRSA drug but colistin does absolutely nothing of appreciable value against gram positive microbes; it kills bacteria by essentially punching holes in the outer lipid layer that only gram negative germs have; gram positive germs only have a cell wall, no outer lipid...

I'm 31 years old, have an FEV1 around his and have had MRSA for years. Its effect on lung function is nowhere near as bad as Pseudomonas. Is it sensitive to doxycycline? Rifampin? Cipro? Levaquin? Co-trimox? Clarithromycin? Azithromycin? Clindamycin? Minocycline? There are tons of oral options...

When I was very young, I remember having an IV ball (I was on my mom's private insurance plan, which covered them). I don't recall which drugs I was on. Presumably Tobramyin and maybe Timentin (ticarcillin) though it was so long ago that I may be confusing that with AUGmentin (which I was...

QVAR is safe and effective. I was on the nasal version (Beconase) for sinus polyps when I was younger. It works great and is very effective. I take Advair now for inhaled steroids. It works great, too. Both are steroids; Advair is mixed with a long-acting bronchodilator too. Neither are really...

I've always been heavy for a CF patient. Prior to starting Orkambi, I was on a diet and pretty strict exercise regimen. Simply by adding Orkambi to my regimen - even while continuing my diet and exercise - caused me to GAIN 20 lbs, whereas I'd been losing several pounds a week previously.

My FEV1 is up 10%, FVC up 20% and small airways up nearly 30% since starting Orkambi. FEV1 and FVC (especially FVC) are well over 100% now. And the increases are compared to pre-Orkambi numbers when I had just finished up a round of oral Zyvox and nebbed Zosyn; so basically, my lungs are...

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...

"Dear buddy amikacin and tobi both r from same family" Not really relevant. Germs can have resistance to specific antibiotics within the same family. Back when I still cultured pseudomonas, it was sensitive to gentamicin and tobramycin, but intermediate to amikacin. "if u use amikacin for...

I've done the usual Tobi, Cayston, Colistin and Ceftazidime. Ceftazidime was great, but tasted like cat pee smells. Colistin makes my chest extremely tight pretty much the entire time I'm on it, but it goes away after a day or two off of it. One that I've done that no one else I know has done...

I've been on it a week as of today and my response has been GREAT. Within a few hours of taking my first dose a week ago, my chest became super wet and rattly and I started coughing like crazy. I probably coughed up something like 1/2 a cup of really nasty, older looking gunk. Since then, my...

It's the Ivacaftor (the same drug as Kalydeco) that can cause liver issues. Lumacaftor, as I understand it, does not due to being metabolized slightly different (easier to break down, I think). The dose of Ivacaftor is slightly lower in Orkambi than in Kalydeco. G551D patients aren't having that...

I'd just had a clinic visit a couple weeks prior and made sure to have them do a liver function test. Perhaps that expedited things? I dunno. I, too, am shocked at how easy it was to get. Also, I am having a very (*VERY*) positive experience with the drug, but am not going to go into details...

My doctor sent me forms to fill out and fax in on Monday the 6th. I sent them in Tuesday the 7th. The nurse called back Wednesday morning and said he'd written a prescription and sent it to my insurance. My insurance called a few hours after that and said they'd approved it. Foundation Care...

Homeopathy literally doesn't work. Literally. Objectively. This is not my subjective opinion. If you think homeopathy works, it's because you don't understand what homeopathy is. How it "works" is that supposedly water has "memory" - it doesn't, btw - and if you dilute things that cause a...

Nope. Definitely don't do this. Pre-mixed colistin has been linked to deaths. Colistin is made of two components: colistin A and colistin B. The longer it sits around mixed, the more colistin A builds up, which can damage your lungs; it's the component that is irritating your lungs and things...

How about you just post it here so that it can be critiqued instead of doing nothing but self-promoting your 800 number? This forum is for information for CF patients and their families. You have posted absolutely no information beyond saying that you talked to a veterinarian 35 years ago for 5...