Cystic Fibrosis Forum (EXP)

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    Manuka Honey treatment for Psuedomonas

    I am desperate for something to treat my heavy psuedomonas infection. Cipro, none of the conventional antibiotics work anymore because it's grown resistance against it so I'm constantly getting chronic infections. I did some research and read Manuka Honey is supposed to help battle infections. I...
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    What do you Call this type of test?

    My dr. believes my O2 is dropping at night-so he is ordering a pulse ox study. But, the office wants me to 'research' where to go. I've called local hospitals and durable medical equipment suppliers and nobody has a clue as to what this is. Someone please advise as to where I can get this done...
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    My recent Experience at a New Primary Care Dr's Office...

    We moved here to another state and I need to start over with drs. I needed a new Primary care dr. I saw her the other day and it was a awful experience <img title="Frown" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-frown.gif" alt="Frown" border="0" />.. I brought...
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    Medicare not paying for Respiratory stuff..

    What does anyone do with Medicare? It doesn't pay for ANYTHING lung related!! I need a new nebulizer, they don't cover. My drs. are considering Oxygen at night (because I drop into the 80's) but it is literally 1 number above what Medicare considers paying for..How do people survive financially...
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    Picc Line

    <br>I have a Picc line, I had gotten pneumonia and with my pseudomonas it's become resisitant to pretty much everything-I am limited to IV antibiotics.  I just noticed a little open sore about half the size of my pinky nail next to the picc line under the tape. I'm not being dramatic-but a...
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    The Vest

    How often do you use it and for how many minutes.<br>
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    Social Security Question

    <br>Is anyone on SS? I'm not on SSI but straight medical. I participate on a website geared towards moms where they send you free products, last month it was Ovaltine and they gave me a coupon for Ovaltine, I had to take a picture of my son drinking it for the site and how we both enjoyed it...
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    Neon green Mucus

    I had to go to the ER this afternoon, I had extreme SOB and wheezing and neon green mucus so I'm on prednisone and Cipro, the Vest I've been doing and the nebulizer. Does anyone else have this?<br>
  9. A

    Headaches!!

    <br>Do you get headaches often? I just saw my doctor last week and told her about my chronic headaches lately. I have to go back on an antibiotic. Basically it feels like I am hungover every morning (I don't drink).
  10. A

    Chronic back pain

    <br>I do not have CF, but I don't know if this is normal to experience with lung disease? I can't stand myself. It's chronic aching in my spinal cord and it's concentrated on the right side moreso then the left.  Anyone else experiencing this?
  11. A

    What is your FEV1 Score?

    <br>I'm curious, would you mind posting?
  12. A

    Little sharp pains feels like it's in my heart..

    anyone else experience this? I am under a tremendous amount of stress lately, so thinking it could be anxiety, but when it happens (the pain) it freezes me up for half a second because of the intensity of the pain.
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    Everytime I stand for a long time I get chronic aches in the bad lung..

    I don't have CF, but I was hoping someone could help me. I have pseudomonas and chronic infections and I get run down very, very easily. I have found lately that i can't stand long because I get these horrible aches in my right lung (main source of infection) I'm really trying not to sound...
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    Chronic Ear and sinus infections?

    I have chronic ongoing ear infections as well as sinus buildup. It's very uncomfortable, I can't hear and I had sinus surg. in 2004 and it was totally useless. Does anyone else have chronic ear infections? What do you for it?
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    TOBI not working?

    I have been on TOBI for about 2 weeks now, first time I have ever been on it and I feel it's not working for me. I realize I haven't been on it that long, but I am very, very rundown and I feel like I'm drowning if that makes any sense between my lungs, ears & sinuses. I need advice, my doctor...
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    Has anyone tried to use Coconut Oil?

    I heard this has great health benefits. Has anyone tried it?
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    Epson Salt in bath?

    My boyfriend mentioned taking a bath with Epson salt to fight the infection in my chest. I have pseudomonas chronic infection and I take Cipro every month but lately I have been feeling worse and more rundown. Has anyone else tried this?
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    Does anyone go to Pulmonary Rehab or the Gym, etc.?

    I just finished pulmonary rehab a little while ago through my insurance. My respiratory therapist encouraged me to continue going to the hospital gym, it's $24.00 a month but the Y has babysitting/nursery provided (I have a 2 year old). I found that doing the treadmill helps to keep my o2 up...
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    For those who use the Flutter Valve,do you also use the Vest?

    My doctor wants me to get a Flutter Valve, I've never used one before but I keep seeing online that it should be used *after* using the vest so the mucous is already loosened up. Does anyone else know if this is true?
  20. A

    Pseudomonas affecting oral hygeine??

    I generally have always had good teeth, no problems a cavity here or there, but my teeth have been awful lately and I brush constantly because of coughing 24/7. I have pseudomonas and am currently taking Cipro 2 weeks out of each month for 12 months. My boyfriend thought it might be my neb meds...
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