• 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. Grigor

    ME/CFS Comic Series

    Yes. I love them as well. I corrected the name in the following tweet! Shared it on Facebook as well!
  2. Grigor

    Reacting to literally anything I ingest

    Interesting. I have what you have but the bowel movements or rather bloating of the sigmoid colon are really big part of the horror experience.
  3. Grigor

    Tracking CCI / AAI MRI & Treatment outcomes

    Is the tracking of the outcomes from surgery still happening? I know there was a survey.
  4. Grigor

    Vitamin D messes up circadian rhythm

    I put a bit of diluted magnesium oil on my skin but I'm probably deficient in many things. Starting low is the only way possible. The issue was however already present when I did tolerate magnesium so I doubt that's the problem.
  5. Grigor

    Vitamin D messes up circadian rhythm

    It also happens with a vitamin D lamp. There are no additives there. I always have to take purest forms as I don't tolerate any additives. I tried sleeping then but I end up not sleeping in the night. It's not helping my severe ME. I sadly don't tolerate magnesium either. Lol. Without the...
  6. Grigor

    Vitamin D messes up circadian rhythm

    Sadly no.
  7. Grigor

    Vitamin D messes up circadian rhythm

    Thank you. The thing is I have zero issues falling asleep. Can barely keep my eyes open but I just wake up way too early.
  8. Grigor

    Vitamin D messes up circadian rhythm

    Hi, So I have a problem that when consuming vitamin D or even via light (vitamine D lamp) that my sleep gets messed up. I fall asleep around 18.00. Almost like I've been intoxicated. If I try to resist I manage to sleep about 4 hours in the night. If I give in I can forget about sleeping much...
  9. Grigor

    Your silence is killing M.E.

    That's very true however my post wasn't so much addressed to the patient community. I think we are doing an amazing job. It was more directed to the majority of the healthcare system, the scientific and political world. Their inaction has caused us so much damage...
  10. Grigor

    Your silence is killing M.E.

    I've always feared HIV/AIDS. I've always been inspired by ACTUP. I've always been stunned by the passivity in regards to HIV/AIDS, ME and now #LongCovid despite the immense suffering. I've therefore written this blog about activism, fighting back, love, giving a damn & revolutionizing...
  11. Grigor

    How to handle detox effects from green powders?

    Many herbs are high in either histamine and/ or salicylates.
  12. Grigor

    PEM post-exertional malaise resolved. Steps: low-carb paleo, eliminate offending foods, breathing, transdermal B3, the best: CARNITINE

    I couldn't read all your post but how did you do the transdermal. Is there a brand that offers transdermal? Did you add the vitamins to water?? I didn't get it! Thank you!
  13. Grigor

    Other ways of taking b complex and minerals

    Interesting you don't tolerate chromium either!
  14. Grigor

    My Stomach mystery

    I have problems with food and meds that start about 20 to 40 minutes. Could be because of the stomic acid. As it's histamin 2 driven. My sigmoid colon always starts cramping and producing gas around 40 minutes. Get hot flashes and stomach that burns.
  15. Grigor

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    @mariovitali Hanson does: Some more stuff on the liver by Maureen Hanson et al.: "Primary bile acids such as sulfoglycolithocholate (13) are synthesized in the liver and the major bile salts result from its conjugation with taurine (28) and glycine, forming taurochenodeoxycholate and...
  16. Grigor

    Tracking CCI / AAI MRI & Treatment outcomes

    If it is correlated then I feel it's a consequence and not the underlying cause. Indeed time will tell. Really sad to hear that your surgery didn't work out as well either. Interesting you relapsed after an infection. How long was it after the surgery that you relapsed?
  17. Grigor

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    It might be the treatment mentioned in this article: https://m.facebook.com/story.php?story_fbid=2528086370786601&id=1931542240441020
  18. Grigor

    Tracking CCI / AAI MRI & Treatment outcomes

    Dear @mattie, so sorry to hear this! Thank you for your reporting! Stay strong!
  19. Grigor

    The distant corona connection.

    My thoughts on the coronavirus pandemic. "We are in a crisis! A pandemic! The coronavirus is spreading. The uncertainty of the unknown is probably the most unsettling of the whole situation. Especially for someone with an underlying health condition." "How do you go about being stuck at home...
  20. Grigor

    High prolactin

    Also this one is important. As my histamine reactions are through the roof since the prolactin... https://www.ncbi.nlm.nih.gov/m/pubmed/6308490/
  21. Grigor

    MTHFR homozygous but can't take B supplement - help needed

    Thank you. I was more referring to the intolerance but the methylation is a thing I'll focus on from now on for sure!
  22. Grigor

    MTHFR homozygous but can't take B supplement - help needed

    Very interesting to read your story about the sensitivities to the smallest amount of supplements. It mirrors mine completely. Also when I forget to take something and eat or swallow it in the afternoon it kicks in hard and will be intolerant from then on. If you find a solution let me know please!
  23. Grigor

    What to do when you can't tolerate any medications?

    So sorry to hear this....
  24. Grigor

    What to do when you can't tolerate any medications?

    Yes to both but to no avail. I react the same to supplements or food really. My guess is that it might be due to vagus nerve or microglia hypersensitivity. My next stop is vagus nerve stimulation. 😂🚫
  25. Grigor

    What to do when you can't tolerate any medications?

    @wigglethemouse problem is I don't tolerate the smallest crumbs of medication. I tried them.... They all work. Also the POTS meds but have to stop because of the severe reactions. Ugh.
  26. Grigor

    What to do when you can't tolerate any medications?

    Any improvements yet? I'm now losing weight rapidly. Brrr
  27. Grigor

    What to do when you can't tolerate any medications?

    Interesting "levels of copper were higher among patients in 3 studies and lower in 1, levels ferritin were higher among patients in 2 studies and lower in 2, and levels of zinc were lower in 3 studies and higher in 2." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5409455/
  28. Grigor

    What to do when you can't tolerate any medications?

    I definitely will. Thank you!!!
  29. Grigor

    What to do when you can't tolerate any medications?

    That's interesting. I always feel I need to add zinc because of my prolactin yet zinc lowers copper. Anyways. Sorry to hear that your doc is useless...same here.
  30. Grigor

    Any research about ME/CFS being CAUSED by emotional trauma?

    Maybe this is interesting for her? IOM report 2015 https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness "A study suggesting a role for childhood trauma in ME/CFS used the broad empirical definition of ME/CFS, which resulted in a...