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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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Search results

  1. A

    Worsening cognitive impairment (and Rickettsial dx)

    Hello all, I have been diagnosed with ME 4 years ago. Since then, I have quit my job and became a stay at home mom. Recently, I'd say in the passed three weeks, my memory loss has become worrisome. I forget things I just did, things I have said, I cannot find my words, and I also replace words...
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    Antibiotics

    Hi all, I started an antibiotic (Septra 800mg 2x/day) for an ear infection 4 days ago. I have been having PEM-like symptoms ever since starting them, and I hadn't had PEM since August (I am being extremely careful.) Is the antibiotic causing this? (Of course, it probably is.) Can I stop the...
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    Active EBV?

    Really? How long have you been on Valcyte now? Was it for chronic EBV? Thank you so much for replying!
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    Active EBV?

    Thank you SO much for your knowledge! It sounds like we're in the exact same boat.
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    Active EBV?

    Thank you so much for the reply. I will look into the links you supplied! I know, Canadian lab results are qualitative instead of quantitative, which is very frustrating (amongst other things). Thanks again!
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    Active EBV?

    Hello! I have posted here before but I am mostly lurking in the shadows. I do have a question for you. I had mono in 2010 (lasted about one year) which left me with PEM after intense actibvities and in need of a nap or so a week but that's about it. In January 2017, I became bed bound for about...
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    Dog breeds that can be housebound only?

    I have an old Basset Hound (rescued). They are perfect for families (always on the top ten list). They are not rocket scientists and they do shed, but they will snuggle the heck out of you. I am not sure about the peepee pad, but my dog likes to use the one little carpet if I forget to let her...
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    Dr. Hyde

    @Jesse2233 I will make a list of questions to ask him for the next apt, I'll add this one to it! @Dechi Yes!!! I had watched all his interviews on Youtube prior to meeting him and I was kinda starstruck when he first called me. Ha! He's an amazing fellow!
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    Dr. Hyde

    @JaimeS @Sing @Dechi @lakesarecool @Kati @Little Bluestem @halcyon @Sushi @JohnM @ScottTriGuy Hi guys! I had my first Skype appointment with Dr. Hyde this morning. I tagged some of you in case you're still interested in knowing how it went. If not, my apologies. First off, I'll tell you...
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    Dr. Hyde

    Hello @lakesarecool! My first Skype meeting is on the 24th! I will come back and share how it went as well as how I got in with Dr. Hyde if anyone's interested. :)
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    Dr. Hyde

    @Dechi Thank you so much! I'm happy to find another patient de Dr. Hyde's! He does seem like a real detective. I'm so happy to hear that, thanks again! :)
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    Dr. Hyde

    @Sing I can start a thread if anyone is interested or keep you posted personally, if you'd like. :)
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    Dr. Hyde

    @JaimeS Thank you! This is what I heard as well! I watched his videos on Youtube and was amazed at his knowledge.
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    Dr. Hyde

    Hello all! I have my first Skype appointment with Dr. Hyde coming up soon. Can anyone give me reviews of their appointments with him? They seem to be mixed and now I'm a bit nervous. I am not looking for a cure, as I feel right now a diagnosis and a ruling out of other potential disease is...
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    Ontario, Canada

    I have been off sick from work since January 17, 2017. I live in Ontario, Canada. My EI illness is coming to an end on May 13 and I don't think I'll be able to go back to work, even part-time, due to the fatigue. I was wondering what my options are for income when EI illness runs out? The...
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    EBV results and interpretation

    @Kati Thank you for the info! I guess I should say I have never been diagnosed with CFS yet but have had PEM, brain fogand moderate fatigue ever since I had EBV in 2010. I'm having alot of anxiety, which is not helping my case right now. I have been off work for about 6 weeks now and only seem...
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    EBV results and interpretation

    @lakesarecool That's very true. Stressing will never change the outcome. Thanks! Everything came back within normal limit. The doctor didn't order a thyroid panel as my TSH was fine but I'll push for it. Any other recommendations would be appreciated! (I'll get my hands on my lab results soon...
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    EBV results and interpretation

    @Knockknock Thank you for recommending these! I will definitely get tested on my next visit!
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    EBV results and interpretation

    @edawg81 Thank you so much for the reply. I didn't see my lab results. The nurse just told me over the phone which ones were positives or negatives. Would a regular EBV screen have numbers as well? (I often see people refer to the titers/antibodies with numbers.) Would a subclinical...
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    EBV results and interpretation

    I have received my EBV results, as follows: VCA IgM: Negative VCA IgG: Positive EA-D IgG: Negative EBNA IgG: Negative I have had EBV in 2010. I was getting tested because I have the exact symptoms I have had back then. Questions: -Shouldn't the EBNA IgG also be positive? -If I am having a...