• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. M

    Chronically high total IgM

    Thank you so much for looking back into your medical notes for me! I apologize for my delay again, I didn't get an email notification about it and I usually do. I'm in Canada so the units that IgM is measured in here are different, but if I do the conversion to mg/dL, my IgM has been in the...
  2. M

    Chronically high total IgM

    Thanks so much for this info! I don't think I would agree to do a biopsy anyway, good to know it really isn't necessary to rule that out.
  3. M

    Chronically high total IgM

    Thank you so much for sharing this, I really appreciate it. My sincere apologies for my delay, some serious things came up in life. If it is easy to check which tests were run, that would be so helpful, but if it is difficult, no worries. Thank you! I was really hoping to qualify for IVIG but...
  4. M

    Chronically high total IgM

    Thanks so much for sharing this. I'm taking a good amount of vitamin D and will keep at it. Of all the possibilities for causes of high IgM, I think chronic infection is the most likely, but my immunologist refuses to do viral testing. I'm just DIY treating, which is so frustrating. I guess...
  5. M

    Chronically high total IgM

    Thanks so much for sharing this. That's great that your IgM went back down eventually! I'm wondering what sort of treatment for autoimmune issues you received? My immunologist told me I have autoimmunity because of high CD3 and CD8 (news to me, I really hadn't realized that's what it meant), but...
  6. M

    Chronically high total IgM

    My immunologist mentioned this and I think they have checked for it, since I have had serum protein electrophoresis tested a few times, but they are re-testing that and also testing serum light chains. Hopefully this will be ruled out. I'd prefer not to do a bone marrow biopsy and I think if I...
  7. M

    Chronically high total IgM

    I have quite high IgM levels, that shocked my internal medicine doctor. He didn't believe it was correct, and ran the test again, and it was indeed correct. My total IgM continues to be high enough that an immunologist said I should be monitored for hematologic malignancies. She said high IgM is...
  8. M

    Dr Chia finds 2% of ME/CFS cases are due to varicella zoster virus reactivation (shingles), and this form of ME/CFS is very treatable

    I just wanted to add to this conversation my own experience. I have had a high viral load for years, and did not know which virus was causing it. In 2014 I started having a little bit of pain in my upper back on the right side. Nerve pain. It hurt to have water hit my skin in the shower, and...
  9. M

    P2X7 receptor polymorphism linked to Bipolar Disorder

    @nandixon I have been looking into Glyburide for a few weeks. I made a case to my GP to prescribe it to me based on the evidence that it can inhibit the release of interleukin-1 beta and is somewhat neuroprotective, and can reduce neuroinflammation. I took my first dose 2 days ago, and had some...
  10. M

    Survey deadline today (March 1st)

    I don't think this has been posted here yet... Some of you may have seen or participated in surveys on the SEID name proposal. This survey is possibly different than the one you have seen. It is co-sponsored by MEadvocacy.org and ParadigmChange.me. Here is a page of information about it...
  11. M

    EEG with Photostimulation causing severe reaction

    Hi everyone, I haven't been able to find anything about this by searching the forum, hopefully I haven't missed it somewhere... I had an EEG done a few months ago and although it came back 'normal' (yeah right - I just don't fit into their box!), I had some really strong reactions to the...