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  1. Replies
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    I’ve been on Symdeko for almost 4 weeks now. I’ve...

    I’ve been on Symdeko for almost 4 weeks now. I’ve had no side effects from it. All is well on it. Previous to that I was on Kalydeco for about 9 months. I’ve not seen any notable difference after...
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    I have been using Cassia, cinnamon and oregano. I...

    I have been using Cassia, cinnamon and oregano. I rotate between them, using two of the oils every night. Just a drop or two on the bottom of my feet. I believe this has really helped. My cf doctor...
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    Also, I did see a rheumatologist and immunologist...

    Also, I did see a rheumatologist and immunologist during that time period. They ruled a lot of stuff out.....
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    I have cultured MAC. About a year and a half ago...

    I have cultured MAC. About a year and a half ago I was having similar issues, low grade fevers up to 101 or so, and swelling of joints, etc...very painful. It was an arthritic response throughout my...
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    I also experienced similar symptoms in the past...

    I also experienced similar symptoms in the past year or so. I had a nasty rash all over my body which was probably due to an allergic reaction I was having to my MAC antibiotics. I would start the...
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    Just FYI. I had a colonoscopy today. Have some...

    Just FYI. I had a colonoscopy today. Have some small internal hemorrhoids that were responsible for the bleeding. Everything else was ok. Thanks for the responses.
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    Bleeding - Rifampin???

    I am currently on Rifampin, ethambutol and Azithromycin to treat MAC. Over the last two weeks I have had blood in my stool 3 times, bright red. Rifampin is known to cause bleeding as a side effect....
  8. Thread: Mac

    by 4hats
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    1,939

    Mep, I want to give you my experience with MAC. I...

    Mep, I want to give you my experience with MAC. I am currently on my second round of MAC treatments. My first treatment of Rifampin, Ethambutol and Azithromycin lasted for 12 months. Prior to my...
  9. I treated MAC for 12 months starting in June...

    I treated MAC for 12 months starting in June 2013. I had negative cultures for 10 months and then I had a positive one while I was still on the treatment (rifampin, ethambutol, azithromycin). We...
  10. I see that you have cultured MAC before. Have you...

    I see that you have cultured MAC before. Have you ever tried to treat the MAC, or are they just taking a wait and see approach? MAC can make you feel very sluggish, tired, like you don't want to get...
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    Ceftriaxone allergic reaction

    I was on IV Ceftriaxone for two weeks. The first week I was doing ok. The second week I had a very bad reaction to it: fever over 102, chills, leg pains, body rash, etc....I would feel this way about...
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    I had my first PICC line in January. They put it...

    I had my first PICC line in January. They put it in while I was in the hospital for 5 days. I had it in for two weeks and then had it removed once I finished my IV course. I did not know what to...
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    My doctor said that exercising is the best...

    My doctor said that exercising is the best medicine she could give me. Of course, I take all my meds and I am totally compliant with my treatments, but I would say that exercising is my key to...
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    I am so very sorry for the loss of your very dear...

    I am so very sorry for the loss of your very dear friend. Please pass on our condolences to the family.
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    Jessica, you can find out more information on...

    Jessica, you can find out more information on different types of mutations on the following website http://www.cftr2.org/browse.php
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    Jessica, GoryLori brings out very good points...

    Jessica, GoryLori brings out very good points related to L206w. I have that mutation along with DF508, which is the most common mutation. I was diagnosed at 41 years old. I am 44 years old now. I...
  17. Thread: blood

    by 4hats
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    I was treated for MAC for one year after I had...

    I was treated for MAC for one year after I had been dealing with it for more than 6 months. The year or so prior to the start of treatments, I had 3 very bad bouts of hemoptysis. Once I started the...
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    I think those on this thread would find this...

    I think those on this thread would find this article very interesting. http://www.nationaljewish.org/about/mediacenter/pressreleases/2010/older-cf?feed=3a1c70d4-03ba-44e3-b0cf-acfb03e1d48a
  19. I've worked in a professional office environment...

    I've worked in a professional office environment for the last 23+ years, so I can appreciate your concerns. I often get the comment, " are you ok?", " do you want a cough drop?", etc....sometimes I...
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    As soon as I started my treatments, the cultures...

    As soon as I started my treatments, the cultures turned up negative. However, 10 months into it I got back positive MAC cultures. I stopped treatment 2 months later, so I did a total of 12 months. I...
  21. Thread: L206w

    by 4hats
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    Yes, I am pancreatic sufficient. My other...

    Yes, I am pancreatic sufficient. My other mutation is DF508
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    Awesome video! Very inspiring!

    Awesome video! Very inspiring!
  23. Thread: L206w

    by 4hats
    Replies
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    Thank you GoryLori, rheamc and rtorres25 for...

    Thank you GoryLori, rheamc and rtorres25 for responding. I've sent you all a Private Message on this forum. Check your inbox.
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    I've bled numerous times. Mostly when it was...

    I've bled numerous times. Mostly when it was totally unexpected. However, this last winter I did start bleeding after I was shoveling heavy snow for an hour or so. I went inside after I was done,...
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    My last PFT was 87. I got diagnosed 2 1/2 years...

    My last PFT was 87. I got diagnosed 2 1/2 years ago after spewing green gunk for about a decade or so. When I first was diagnosed my PFT was 74. I got it as high as 91. These high numbers were after...
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