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Hello hello! Well, I can't get in to see infectious disease doc until next week sometime, but I was VERY persistant today that we start SOMETHING NOW. So, CF doc is putting me on azithro MWF 500 mg and something else (I think it starts with an e?) three times a week. They will also add on...

Hey, ya'll. So, I'm noticing it wouldn't be a bad idea to invest in a really good treadmill (even with my gym membership) so that when I'm sick, as I have been for the past 6 months, and don't feel like driving to the gym, I can walk/jog at home. So, does anyone have any recommendations for a...

Hello! So, I was just informed today that my doc wants me on something aerosole every month as an antibiotic. Since I can't tolerate TOBI and my lung function has been a lot lower, they want to put me on the expanded access for aztreonam. Just curious how many others are on this? The nurse...

Hello, I've been on Prevacid 30 mg Rx'd twice daily now for a few years. Today, when I went to Walgreens, they substituted a generic form called "Lansoprazole" in the same dose. I was under the impression Prevacid didn't make generic (that's also why it was SOOOO expensive). Did that change...

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hello, everyone as many know, i've been having lots of issues with decrease in FEV1 lately (even 3 weeks abx i proved sensitive to in synergy did nothing for). i've always thought it wasn't an exacerbation, but maybe the MAC acting up OR the new climate we moved to (texas humidity versus vegas...

Hello, So I just started cefepime, tobra and oral levaquin and already have had some "issues". Just curious if any of ya'll have experienced anything similar to this with any of these meds: 1. TERRIBLE taste. As in, when the cefepime is running in and for hours after I have an awful taste...

Hey all... I'm so frustrated and extremely depressed right now. Remember how back in August I had to fight with my military doc to send in my culture for synergy testing? Well, she said she sent it in back on Sept. 10. Today, my bronch results came back and I have a non mucoid p.a. that is...

Hello, I've been told we'll likely start treating my MAC since its shown up in my past 3 cultures in a row and my pfts are way down. Can those who have been treated for this please share your experience with the following: 1. How did you know it was MAC causing symptoms? 2. What was the...

Hi, everyone. I have MAC and have shown it now in my past 6 cultures. I am also experiencing a severe decrease in pft numbers so we're looking at what the cause may be. My new doc at this center said they only treat MAC if I have a skin rash. Has anyone heard of this? She also said they...

Hey, everyone. Just curious how many of us have normal or abnormal DEXA scans? Just for my own curiousity. I just got the results back from mine and it was normal, but they still want me to do it every year (fine with me). Just wondering what others' experiences with this have been and how...

My doc has suggested a GI consult to see what is going on with my GERD/reflux that isn't responding to meds. She mentioned they may take a tube and put it down my throat to "look around" OR they may do an upper GI endoscopy. She said for the latter, they sedate you, but for the other one, they...

Hey, everyone. So, with our move a couple months ago, my FEV1 dropped about 5%. I also had my first true hemoptysis. My new docs think its all related to the dust and inflammation kicked up by unpacking, stress, etc. Yesterday, I saw the lowest FEV1 ever. It had lowered another 3% and it...

Hey, maybe kinda a stupid question, but I'm keeping a close eye on my temp lately (possible infection) and am laying on a heating pad for a bum back. so, does anyone know if heating pads can raise your body temp and give an inaccurate reading? i hope not, cause it feels OOOOO soo good! thanks,

Hello, I've noticed that when I don't do my treatments immediately in the morning when I get up, I often cough a lot and a lot MORE stuff up until I do them. Then, when I vest and do H.S., pulmo, xoepenex, etc. I cough a little but not quite as much. Nor do I feel as much "rumbling" in my...

Hey, everyone. Today, after a particularly intense workout at the gym (not harder per se, but harder for me... felt lightheaded and crappy most of the time and HR went way up), I felt like blood was rushing to my head and like I'd pass out. I thought it was due to overexertion or too much...

Hey, Just had our ducts cleaned and they tried to sell us a UV light "filter" that hooks to our AC unit and apparently kills all sorts of bacteria and/or mold spores, dust, etc. Has anyone gotten this and if so, what do you think of it? Aside from HEPA filters around the house, I'm kinda...

Hey, Does anyone know if this is still on a nationwide backorder? I remember in June, they wanted to use this for me, but its been on backorder in the US from a home infusion company since like November... The only way I could get it was being inpatient for the entire treatment. Just...

Hello. Just got off phone with clinic and was told my p.a. that I'm growing (two strains as usual) are "moderate" and are "intermediate" to pretty much every medication they'd use. I am having a bit of an issue with this. They've used intermediate meds in the past on me just blindly...