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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Andielyn

    Candida Krusei vs. Albicans

    My daughter's was post liver transplant surgery and colonized in her internal liver ducts. She was treated with all sorts of things, including amphotericin B, by IV. This was in 1998 though. They finally made the decision to strop treating as the colony was localized and controlled. She has...
  2. Andielyn

    Candida Krusei vs. Albicans

    I'm sorry to hear that. What did the doctor, other than its rare and hard to treat? How was it detected? Where is it and what are your symptoms? My daughter had a Candida kruscei infection once so that's why I originally asked. Let me know if you have any questions about my daughter's case...
  3. Andielyn

    ME/CFS people working full-time (or close to)? What is life like for you?

    I didn't properly reply @u&iraok . I went on vacation in Florida and really never got a chance to rest up. It's been downhill since even though I have been improving I ran out of time. When I felt good I still spent my evenings and weekends resting up just to make it through the next week...
  4. Andielyn

    ME/CFS people working full-time (or close to)? What is life like for you?

    I know just what you mean. I lost my battle with trying to work today....I lost my job.
  5. Andielyn

    Probably Sjögren's Syndrome all along.....

    Been thinking about this. I also feel like I have the flu...body aches, chills, brain fog, used to get a sore throat but not so much now after being on antivirals for several months.
  6. Andielyn

    Vitamin C and Vitamin D

    I think this is a critical point...in my personal experience, people metabolize all drugs differently. Rarely do we know how our body actually metabolizes anything. Some people metabolize very slowly and others metabolize very quickly, and then there is the whole absorption issue which affects...
  7. Andielyn

    Probably Sjögren's Syndrome all along.....

    @Amaya2014 My PEM "crashes" are similar to yours except the emotional piece usually comes as I'm coming out of it or am out of it. During the crash I am too exhausted to even exude that much emotion. I am almost always blindsided by my crashes.
  8. Andielyn

    Probably Sjögren's Syndrome all along.....

    Interesting question. I can no longer seem to regulate my temperature especially during a crash. I am either chilling or sweating profusely. So for me it is both. Not diagnosed with SS, only EBV induced CFS/ME. I am also interested to know your experience @Megan17 ~Andielyn
  9. Andielyn

    Probably Sjögren's Syndrome all along.....

    Again, thanks for the education. I went to my opthalmologist for eye pain and sudden onset of blurry vision and was diagnosed with dry eye syndrome but without this test. I have been using drops and a personal humidifier. I also have hyertopia, which is new and a rapid onset. I suspected...
  10. Andielyn

    Probably Sjögren's Syndrome all along.....

    Thank you for the information @charles shepherd
  11. Andielyn

    Probably Sjögren's Syndrome all along.....

    @Megan17 Interesting and glad you have a diagnosis which seems to fit. It is interesting that I have many of the symptoms of Sjögren’s syndrome. I have high levels of EBV, have in the last few months been diagnosed with dry eyes and have other dryness symptoms. @Jonathan Edwards I have PEM...
  12. Andielyn

    Vitamin C and Vitamin D

    Interesting research @ScottTriGuy I am always leery about taking excessive doses of any of the fat soluble vitamins that are stored, not excreted (A,D,E,K) It always surprises me the dosages that are available in OTC vitamins. I'd be afraid to take large amounts without careful monitoring...
  13. Andielyn

    The Real ME: A Stock Photography Resource for the Media

    ME eyes...know exactly what you mean. Have them today. Just took a selfie of me at my desk. I look haggard, like I barely got myself to work (all true) but beyond the disheveled look, hair pulled back, no make-up, I have those ME eyes. Ironically my eyes were always my best feature...I got...
  14. Andielyn

    Antivirals help extreme fatigue?

    Hi @Tammy, for some reason I thought you started one of those around the time that I started. So it was a different AV you just finished 9 months of taking it? Thanks for the encouragement...I sure need it right now! I think now has been one of the roughest emotionally/psychologically in...
  15. Andielyn

    Antivirals help extreme fatigue?

    me again @Tammy....they have both on Amazon...ordered! Thanks, friend! :hug:
  16. Andielyn

    Antivirals help extreme fatigue?

    Thanks @Tammy I will try those and see if it makes a difference. So glad to hear you are doing better! Were you taking acyclovir or valacyclovir?
  17. Andielyn

    Antivirals help extreme fatigue?

    @Tammy, oh wow, what great news!! Thanks for the update! I am 7 months in with antivirals. At times I think I'm improving...the PEM episodes seems shorter and my bad days are fewer, but then a week like last week comes along and it kicked my butt. I did manage to make it through the whole...
  18. Andielyn

    Misdiagnosed Multiple Sclerosis (MS) as ME/CFS?

    This is not true. Nearly all insurance plans have in-network physicians/hospitals. Some will pay a small percentage for out-of-network care, and it varies wildly. Having said that, I live in a location where one of the very best hospitals--on par with the Mayo--is in-network and my experience...
  19. Andielyn

    ME/CFS people working full-time (or close to)? What is life like for you?

    This is super advice @geraldt52 . I can see how those efforts would work against one, but not sure I'd have realized it. Thanks.
  20. Andielyn

    ME/CFS people working full-time (or close to)? What is life like for you?

    Most days I skip my lunch to shorten my day. I work in a position that I have some flexibility, and I shifted my start time to 10 a.m., because mornings are so hard. Sometimes I can make it by 9. One night recently was so bad insomnia wise, I just finally gave up, and went in at 5 a.m. and...
  21. Andielyn

    ME/CFS people working full-time (or close to)? What is life like for you?

    That's what I try hard to do, too. Thanks for the reminder, @BurnA
  22. Andielyn

    ME/CFS people working full-time (or close to)? What is life like for you?

    I made it through a full week of work this week, sort of. Monday I missed a half day and my supervisor let me make it up. I came home tonight, made dinner...luckily it was planned and I had everything ready to go, took care of the dogs, and now in bed. I can't imagine trying to do this for 15...
  23. Andielyn

    HIV EBV STORY--Please GIve Me Your Thoughts

    Yes it does. Thanks!
  24. Andielyn

    ME/CFS people working full-time (or close to)? What is life like for you?

    Hi all: It is now 6:05 am, I'm at work and I have read through every single post. Like I said, I know this is a very old thread started back almost a year ago, and maybe each of you are in a different place now--hopefully a better place--but this thread has been one of the most enlightening...
  25. Andielyn

    ME/CFS people working full-time (or close to)? What is life like for you?

    @leokitten Okay I know this thread is old, but it's 2:30 am, I work full-time, and as @lnester7 said, hell. I will share more soon. It is comforting to know I am not alone. I only made it through the first page but everything resonates with me. Hugs to you all. ~Andielyn
  26. Andielyn

    HIV EBV STORY--Please GIve Me Your Thoughts

    @Hip I am fascinated by this information. I have been diagnosed with CFS/ME due to chronic EBV, and my main treatment is acyclovir. Some of the things that caught my attention is that I had a chronic sore throat for over 2 years, which seemed to start everything. Another thing that stood out...
  27. Andielyn

    Candida Krusei vs. Albicans

    Hi all, For those of you who have tested positive for candida, I'm curious if you have been told or know what strain of candida? Albicans is the most common and what one normally thinks of, but has anyone been diagnosed with the krusei strain? ~Andielyn
  28. Andielyn

    Comment by 'Andielyn' in 'Remission: completed 1st university semester with minimal struggle and top grades'

    Wow, congratulations! I am newly diagnosed and this is so good to hear! Good luck with your studies and continued good health!
    • Andielyn
    • Blog entry comment
  29. Andielyn

    Comment by 'Andielyn' in 'Please, I need some kind supportive words from those who understand.'

    I was recently diagnosed and still relatively functional and after going to a battery of "specialists" at one of the nation's best hospitals, I am being treated by my local primary care doctor who said yesterday, yes, this IS REAL. I feel for you and my heart goes out to you. Sending you hugs...
    • Andielyn
    • Blog entry comment
  30. Andielyn

    Insomnia after PEM crash?

    LOL, too funny! You're right, it could be worse! :thumbsup: