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  1. R

    Vanderbilt Pulmonary clinic in Tennesse anyone use them

    I am thinking seriously about switching clinics. I can never get my drs to call back or communicate with me after I leave their office.It will be a 5 hr drive though so I need it to be worth it.
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    Orkambi drug interactions that were not listed

    Anyone have a interaction with Orkambi that a was not listed in their interactions list. If so what is it?
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    Anyone else have DILD from Ceftaz or bactrim

    I have some type of inflammation type reaction and wheezy breathing, coughing up blood after a few days of being on the drug( ceftaz and bactrim). I rarely cough up any blood, unless I have had a cold and that's most likely from my throat being raw. The Ceftaz is the only drug that can treat...
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    Anyone else have trouble with RT's while in hospital

    The last time I was in for a bowel obstruction I had trouble with the respiratory therapist treating me like I was a child. I was nauseated the whole time I was in. It is really hard to do treatments on their schedule when you're puking. She got really hateful with me if I hadn't been so sick at...
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    What do you take with you when admitted!

    I want to take my coffee pot( a one cup) . All they have in there is coffee with caffeine. It makes me crazy, cant sleep at all. I have decaf & I am taking my coffee pot. It will make my stay a lot easier. That is if the meds don't make me have chills and fever like last time. What does everyone...
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    Didnt culture MRSA this time why do my lungs feel worse

    I've cultured MRSA since 2010 I could tell it was there , but my last culture it didnt show up. I have been on oil of oregano on a month off a month for 3 months . I have Cepacia too . Ive had it a long time. I feel worse than before. Do the bacterias fight each other? Did the cepacia win and...
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    does anyone take oil of oregano every day

    I have been told by the guy at the health food store not to take oil of oregano all the time , but I don't think he quite understands my circumstances. Does anybody take it full time. It helps with the inflammation a lot and my sinuses.
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    Questions about PharmaNAC regarding CFRD

    I have been on pharmanac for about a 6 weeks now and Ive been having trouble with low blood sugars every time I use insulin now. Is it possible the pharmanac is helping my pancreas.
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    can I take pharmanac with levaquin and doxycycline

    I just got put on levaquin and doxycycline today .I am on oil of oregano and pharmanac. I have had a cold and those 2 got me thru till now without a hospital stay. But can I take those with the antibiotics . And if I get more anxiety from the levaquin will anything help with it like xanax. I am...
  10. R

    pharmanac is awesome!

    I started the pharmanac Friday and it is helping tremendously with inflammation and I'm coughing the nasty stuff out easier. I can actually take a deep breath and dont have a stopping point that feels like my lungs wont expand. But the stuff is hard to get a hold of the 32 count has been on back...
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    Pharmanac causing sinus drainage !

    I started Pharmanac Friday and today woke up with sinus drainage . Could it be causing it maybe cleaning out my stuff in there
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    Does anyone experience low blood pressure

    I have been feeling really dizzy all day long today and couldnt figure out why . I have always had a slightly low blood pressure due to hypothyroidism, but I checked it and it was 81/40 isnt that pretty low . Usually it gets pretty low when I'm on Vanc but im not on it.
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    I need a alternative to trazadone for sleep

    I need to get off trazadone , The pharmacists said it is most likely what is giving me the rapid heartbeat. I am on paxil too , he said those together could cause it. I got off the azithromycin because of the ringing in my ears. The paxil is working for my anxiety. When I get up in the morning I...
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    Anyone use symbicort inhaler

    I have been using this inhaler with the chamber on the end. I have noticed my throat is sore a lot especially when I do treatments. The hypersal feels like it is burning more than usual. Anyone else have this problem ? I rinse my mouth too.
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    What is the white foamy mucus a sign of!

    I am hoping it means less infection ,but that would be too easy. Is it a sign of inflammation? I have never had this before it is always green or yellow. I've had ever since the bad reaction to the bactrim ( severe inflammation in the lung)
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    What else can I take to help with inflammation.

    I am currently on azithromycin, symbicort inhaler, albuterol , hypersal, pulmozyme. I mix my hypersal with regular saline if I have inflammation, it seems to help to keep it from getting worse with the hypersal. I ordered some Pharmnac , but hasnt came yet. Its going to get expensive if i take...
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    Could someone smarter than me look up ceftaz and see if it has any sulfa drug in it

    I just have a feeling it has a sulfa drug somewhere in it. There are a lot of smart people on here about CF and meds , I am learning but don't understand the big words in the makeup of abx.
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    Kepp coughing up blood perodically

    I have been coughing up some blood in my mucus for about 2 weeks now. It was the worst when I got off the ceftaz, because I had a lot of inflammation while on it and after. I'm still mixing my hyper-sal with regular saline to dilute it some. Without it i wouldn't get anything up. Could it be the...
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    Medicare will not cover kalydeco where I live !

    I just talked to the cf services pharmacy and was told that medicare will not cover kalydeco as of now because it is so new
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    Acid reflux worse after IV meds !

    I just got done with 2 weeks worth of meropenum and vanc, then 1 week of ceftazadime and vanc and levaquin. And also just finished a 5 day course of prednisone 20mg. And I started the azithromycin MWF . I am already on protonix 2x a day . Now my reflux is a lot worse. I cant even drink water. My...