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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. EMilo

    BPC-157

    I've been staring at my bottle of oral BPC-157 for a while. I have to start it now. My bowel symptoms are horrific. I'm wondering if anyone has opened a capsule to just start with a drop? That's what I have to do with all medications.
  2. EMilo

    How I found the underlying cause of my CFS--anti NMDA antibodies

    @Learner1 Wait, you're in the PNW? I'm in Seattle. Maybe we know each other on Facebook?
  3. EMilo

    How I found the underlying cause of my CFS--anti NMDA antibodies

    @Learner1 , ah, I'm so happy to know you. It puts my mind at ease just having a comparison. Thanks for responding. I was diagnosed with CVID and have been on 10 grams a week subcutaneous for the last 8 months (it's the equivalent of 0.9g/kg every 4 weeks). I was half that dose for two years...
  4. EMilo

    help with Cell Trend results from CFS/POTS panel

    @Gingergrrl are you planning to come off of infusions for a while before you retest ?
  5. EMilo

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Hi @Gingergrrl , one of these days I really want to chat with you (I'm one of the 3-4 PMs, I guess ;)). I've been doing SCIG for 2.5 years st CVID doses and now Dr. Kaufman wants me to do high-dose IVIG. I don't have positive tests for any autoantibodies that I know of except one Cell Trend...
  6. EMilo

    Poll: Mestinon Trial

    I just started at about 7mg. It feels like I was hit by an acid freight train. Not a fun one. It's scary.
  7. EMilo

    OMI - Kaufman and Chheda departure

    I was just going to post something about this. They didn't contact patients who don't have current appts, although it sounds like Dr. Kaufman is planning on it, according to @Gingergrrl . I only found out because I called to make an appt and then they didn't offer any info -- I had to ask: Is...
  8. EMilo

    Nystatin timing - before or after food?

    The tablets in the US are standarised at 500,000iu, but if you're taking a similar powder formula to the one Dr. Myhill's page describes, 1/16th of a tsp is the same as one 500,000iu tablet that you can get here in America (http://drmyhill.co.uk/wiki/Nystatin_-_how_to_take_it). I'm pointing this...
  9. EMilo

    In memory of Justin Noble - Justin30 on PR

    My sister was in downtown Seattle for the first Millions Missing protest. She wound up talking to Justin's mother, they discussed how my immunoglobulin infusions were the first thing to help my symptoms even marginally. My sister called me afterwards and said, "It made such a difference talking...
  10. EMilo

    GH Deficiency and Correct Testing

    @xks201, What was your experience with the ITT? I'd very much appreciate any advice.
  11. EMilo

    Adrenal Insufficiency Testing?

    @Ema, Can you tell me your thoughts on why the ITT is dangerous? I've been putting it off for a year, but I have to do it before the end of the year for insurance to cover it...
  12. EMilo

    My CFS/ME was GHD

    @xks201, Did you have the insulin tolerance test done? I've very nervous about it and have been putting it off for a year... Would love to know your experience.
  13. EMilo

    23andme & Chronic insomnia and family history of psychiatric/CNS disorders

    @xptriado Did you ever get the insulin tolerance test? I would love to know your experience.
  14. EMilo

    Are my cortisol levels bad? And how does this relate to methylation?

    @JaimeS , can you please tell me more info about your ITT experience? I have been putting it off for a year because I'm so nervous. I've asked for experiences in many groups and nobody with ME/CFS or any similar illness seems to have had it. My fear is an adverse reaction -- a DANGEROUS reaction...
  15. EMilo

    Drs/ studies in or around Seattle area?

    @jsfm How did it go with Dr. Iller? I've been seeing her for a while now...
  16. EMilo

    What are your experiences with HBOT?

    I saw my doctor the other day, told her I had chickened out and cancelled all my HBOT appts. She said worse case scenario, I'll get uncomfortable ear popping. So I'm going to try it, I'm just nervous to rock the boat when I've been finally making improvements this past 8 months.
  17. EMilo

    Pix/reports from the #Missing Millions protests today

    Oh, and she found my shoes:
  18. EMilo

    Pix/reports from the #Missing Millions protests today

    @dannybex thanks for tagging me. I'll just upload the photos my sister took now in case people don't want to deal with Facebook. These are from the Seattle demonstration. @Justin30 my sister talked to your Mom, she was telling her how immunoglobulin infusions have helped me feel a bit better...
  19. EMilo

    What are your experiences with HBOT?

    @Down-but-not-out , How did the HBOT study go??
  20. EMilo

    In Belgium to see Dr de Meirleir

    @Daffodil Can I ask how low the low dose SCIG is? I'm on 5 grams, but have no one to compare to since it's SUCH a low dose. Also wondering if you did B12 injections?
  21. EMilo

    Ubiquinol: Any experiences?

    @ahmo This year, one of my worst symptoms has been brain tiring... But like nothing I've ever experienced. Brain fog is like a pebble compared to the mountainous brain problems this year. I actually think it's gotten better with immunoglobulin infusions, though. Or maybe it's the new Ubiquinol I...
  22. EMilo

    Ubiquinol: Any experiences?

    @whodathunkit , I've taken COQ10 and Ubiquinol for years and never increased past 100mg! wow. Maybe it's time.
  23. EMilo

    Ubiquinol: Any experiences?

    I signed up for that study, too, but I'm not going to take the MitoQ until later in the year. How are you doing with it, @ahmo ?
  24. EMilo

    What's your CD4/CD8 ratio?

    Thank you, @halcyon . Chronic viral infection sounds about right. I'm high out-of-range for so many things.
  25. EMilo

    Ubiquinol --good past exp date? And is Pure Encapsulations price worth it?

    I've been buying the $69.50 Pure Encapsulations Ubiquinol thinking it must have some added benefits to the Jarrow CoQ10 I took for ages (and felt nothing). I've been alternating them every day so make the money stretch further. I am being offered the PE Ubiquinol at half price because it expires...
  26. EMilo

    What's your CD4/CD8 ratio?

    @halcyon I just discovered these test results from Dr. Chia from a year and a half ago. My CD was elevated and my ratio was low out of range like yours. Most people here seem to have an elevated ratio. Do you know what low indicates?
  27. EMilo

    Autopsy Options

    Thanks, @SOC ! I will look through my notes and see if I have anything about the NIH brain bank. My research got stalled when I went down too many rabbit holes.
  28. EMilo

    Autopsy Options

    @SOC Thank you! Please let me know if she has any insight.
  29. EMilo

    Autopsy Options

    I emailed the Solve ME/CFS Initiative to ask about body donations and also requested a paper consent form for their tissue biobank. I didn't even know this existed! Thank you, @SpecialK82 I'm going to fill one out for me and my (healthy) husband and mother...
  30. EMilo

    Magnesium Oxide for severe Constipation?

    I'm still in severe constipation hell. I was having terrible reactions to magnesium sometimes, but not always. I tried different kinds. I tried Miralax, nothing, gentian, wormwood, aloe, high-dose vitamin C, digestive enzymes, probiotics, fish oil... Nothing! A glycerine suppository gave me an...