Recent content by justbecauseicannotseeit

Thanks for the tips guys! Haven't had any migraine symptoms yet today, so I'm not sure it's directly correlated to the higher concentrations of Ceftazidime (or maybe all the water I've been drinking has helped ;))

Dehydration is also my main cause of head aches, so I've been trying my best to stay hydrated, but it that doesn't seem to be alleviating the symptoms. Thank you for the input though! I've also heard that one of the best ways to prevent a migraine from getting bad is to drink coffee? Apparently...

I have only ever had one other migraine in my life - it was back in August, and it came seemingly out of nowhere, but I had the "warning signs" of a migraine aura, tingling/ numbness in my hand and face, before the actual headache started. I went to the ER and they gave me reglan and ibuprofen...

Just wanted to say thanks everyone for helping me out w/ this!!! I've since started IVs, b/c although my FEV1 is still very good, when we looked back over the past year it's gone down about 10%. My last culture came back positive for MAC (I knew it) and pseudomonas (wasn't expecting this one)...

Hello! This does happen to me sometimes, and sometimes it doesn't... I can't seem to figure out a pattern, except maybe it's worse during exacerbations, or if it has something to do with the weather drying out my hands or something? Sometimes it will happen consistently for a while, and then...

Just curious if anyone else experiences this and if it's a cause for any concern? I've been noticing lately that my fingernails tend to be blue/purple-ish (starting near the cuticle and extending outwards). I've always had very very mild clubbing. O2 is good, although I've been getting bouts of...

Thanks for the information, 4hats! I'm glad you're feeling better on the treatment. I have a clinic appointment tomorrow, and I think I'll ask if they think a bronch would be a good idea to find out if I definitely got rid of the MAC or not. Probably wouldn't hurt.

Hello 4hats, thanks for your comment. Yes, I did treat the MAC with a combination of rifampin, ethambutol, and clarithromycin for a little over six months. The follow up bronch came back negative for MAC, and that was about a year and a half ago. Do you know if MAC has a tendency to show up...

lsveburg, thank you for the information, that's something to keep in mind! I'm pretty sure my Hgb was normal on my last test (I get petechial rashes sometimes so they checked out my blood cell counts and everything came back normal... still not sure what causes them, but no one seems too...

Hello nmw0615, thanks for your comment! Hmm, maybe I will ask at my next clinic appt. about a sleep study... do you think it's possible to be at 98%-100% during the day and drop low enough at night to need oxygen? From what I understand it would have to drop below 90% to require supplemental...

Hi, thank you so much for your comment! I think that my enzyme dosage is good. I adjusted it less than a year ago, actually started taking less (probably b/c I lost weight) and it helped some stomach issues I was having a lot...So I'm sort of hesitant to mess with the dosage again, but maybe I...

Hello all. I don't come on these forums too often, but lately I've been struggling a bit and could really use some advice. I'm 21 w/ CF and have always been considered pretty healthy. My FEV1 is rarely below 100%, and I think the lowest it's ever been was around 90%. My resting O2 is never below...

Hello, thank you for your response! I don't remember the dosage at the moment and I don't have the bottle on me. But I did (eventually) call my doctor and he ended up prescribing Zofran to take an hour before each dose of the Minocycline. Thankfully it's been helping, I was just trying to find...

So lately I've had this particularly nasty cough, and I usually take Levaquin to treat the bacteria I have, but it hasn't been helping, so I've been trying new antibiotics to treat it. I've been taking Minocycline 5 days now and the good news is my cough has calmed down loads, but the bad news...

Hello, I hope everyone is doing well! So I just wanted to share that I found this website called RarePatientVoice (I think I may have heard about it from some one on here?) which allows people with diseases considered "rare" to take surveys and occasionally get rewards in the form of gift...