• 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.

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Search results

  1. ScottTriGuy

    Study Finds Cannabis Compounds Prevent Infection By Covid-19 Virus

    If you needed another reason... https://www.forbes.com/sites/ajherrington/2022/01/11/study-finds-cannabis-compounds-prevent-infection-by-covid-19-virus/amp/?fbclid=IwAR2J41jbdZXYYj4PynRhcETxt2MVe0lbYatcyiNWqn_sHwp0wcDP2TghiGo "The researchers found that two cannabinoid acids commonly found in...
  2. ScottTriGuy

    McLean's article about Long COVID and ME

    McLean's is a leading Canadian news magazine. Sabrina Poirier, mentioned in the article, worked long and hard with the author to ensure she got things as right as possible (of course, the editor has final say)...
  3. ScottTriGuy

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Hey Joshua, What do you think of Ron Davis's last video update? https://forums.phoenixrising.me/threads/new-research-update-video-with-prof-ron-davis-march-29th-2021.83381/ How does it, if at all, fit with your work?
  4. ScottTriGuy

    In Memory of Patrick Johnson "PatJ"

    It was a privilege to have known you Pat. Thank you for all you did for others. See you on the other side.
  5. ScottTriGuy

    Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    https://www.frontiersin.org/articles/10.3389/fmed.2021.628029/full?utm_source=F-NTF&utm_medium=EMLX&utm_campaign=PRD_FEOPS_20170000_ARTICLE Here the hypothesis is advanced that maladaptive mechanisms that prevent recovery in some intensive care unit (ICU) patients may also underlie Myalgic...
  6. ScottTriGuy

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Yes I do. But I don't have headaches -- sound like you may fit with folks that get headaches. I'm more inclined to think that a shrunken or flattened pituitary may have impacted my hormones, since: (from Wiki) "Hormones secreted from the pituitary gland help to control growth, blood pressure...
  7. ScottTriGuy

    Thermoregulation and body temperature

    Here's a short video (4 mins) by a doctor about "5 reasons for cold intolerance"
  8. ScottTriGuy

    Thermoregulation and body temperature

    Yes -- and sometimes I've experienced rigors. https://hartfordhealthcare.org/health-wellness/health-resources/health-library/detail?id=sts14582
  9. ScottTriGuy

    From zero to hero thread

    @mariovitali
  10. ScottTriGuy

    Does anyone with CFS get back to 100% ever?

    I've had 2 complete recoveries / remissions when I got back to full on triathlon training and racing. But now it's been over 5 years. Still, it gives me hope that one day I will permanently recover.
  11. ScottTriGuy

    Small Fiber Neuropathy associated to Posterior Cingulate Cortex atrophy in HIV

    Thanks for the heads up @pattismith -- interesting study, and your convo with @Pyrrhus -- fortunately I don't have HIV neuropathy (or ME pain) -- when I first started on ARVs, AZT was part of my cocktail, and it made me feel sick in a different way to pre-ARVs, and very often an easy run or...
  12. ScottTriGuy

    Eosinophils and their role in Connective Tissue Disorders, Autonomic Dysfunction, and Mast Cell interactions.

    I don't have any info, but am eager to learn more.
  13. ScottTriGuy

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

    As I've said before and elsewhere, I often wonder if the antiretorivirals I take are why I'm 'healthier' then the majority of ME people I know.
  14. ScottTriGuy

    Thoracic Outlet Syndrome - just diagnosed

    Personally, I suspect my TOS is a result of collagen degradation that may accompany ME - fwiw, I don't have the neuropathic (painful) version of TOS. Yes, I still get PEM if I exert too much, especially my arms. My GP is at St Michael's hospital in Toronto, so I saw somebody at St Mike's...
  15. ScottTriGuy

    Thoracic Outlet Syndrome - just diagnosed

    Hi @Gingergrrl and @bread. None of the doctors seemed too concerned -- they didn't offer any treatments -- so really a non-starter in the medical system -- and I avoid using my arms for anything, especially above my shoulders.
  16. ScottTriGuy

    Podcast: Medical Error Interviews

    People of a certain age - and music buffs - will recognize Howard Bloom as instrumental in countless rock stars success - Howard's new book is "Einstein, Michael Jackson and me", but I talked to him about his life with ME...
  17. ScottTriGuy

    Dr David Tuller: A Non-COVID Post about KCL’s Rejection of My FOI Request

    "...although the University recognises the inherent public interest in accountability through the transparency of the licensing process, the effect in this case would be likely to prejudice the university’s commercial interests. There is significant public interest in the university being able...
  18. ScottTriGuy

    A study at the rise of Parkinson's

    In the book, he added, parallels are drawn “to HIV and polio, which were once incurable, debilitating diseases. In the 1980s, people with AIDS chained themselves to the front doors of pharmaceutical companies demanding better treatments, and now people no longer die of AIDS. “We need to raise...
  19. ScottTriGuy

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I was taking NAC long before I started Rapamune. Yep, it impacts many things, hard to know what its helping in the body.
  20. ScottTriGuy

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

    Awesome, thanks @Learner1 - the papers will be helpful and I'll have time this weekend to peruse and (try to) digest the dynamics.
  21. ScottTriGuy

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

    Thanks for sharing @Learner1 -- your research and results are very interesting. My 'ME' doctor just started me on phospatidyl choline a few days ago. He's very open minded and I'm thinking of asking him to prescribe Kuvan, but I need to wrap my head around it - and bring him the research. I...
  22. ScottTriGuy

    Tryptophan as an IBS gut treatment

    Any idea how SFPN causes PEM?
  23. ScottTriGuy

    ME/CFS, EDS specialist in Saskatchewan, Canada?

    You may try asking the folks on the ME Canada facebook page: https://www.facebook.com/groups/328175370869025/
  24. ScottTriGuy

    Need guidance

    hhmmm, do you know what kind of chemicals would be in a rubber factory air / environment? If you knew that, theoretically you could try to 'flush' / chelate them out of your system.
  25. ScottTriGuy

    New Research Group

    One of the things they're studying... "This team is also responsible for a very important breakthrough: amyloid – the substance that accumulates in the Alzheimer’s brain (and that of other neuroinflammatory conditions) is not actually a useless plaque, but rather a potent antimicrobial molecule...
  26. ScottTriGuy

    CDC ME/CFS Stakeholder Conference Call February 13, 2020

    Excellent questions @Gemini They deserve answers.
  27. ScottTriGuy

    CDC ME/CFS Stakeholder Conference Call February 13, 2020

    Was there no singing this time to go with their dog and pony show? If any of those CDC people had severe ME for just one day, the very next day resources and funding would start flowing. I wish severe ME upon them.
  28. ScottTriGuy

    Ammonia

    I recently interviewed Sarah Price Hancock - her (incredibly compelling) long story short is that she had very high ammonia ("my brain was marinating in it") and what helped her was a long course of antifungals (she needed for 18 months) plus nutrient support. Fwiw, she said Dr John Humiston...
  29. ScottTriGuy

    Dr. Stasha Gominak (Neurologist/Sleep Specialist) - January 2020 Interview - Illness, Microbiome, Vitamins D & B5 and Sleep

    @Alvin2
  30. ScottTriGuy

    Quantum physics experiment proves human consciousness influences the behavior of subatomic particles

    I stumbled on Robert Lanza over a decade ago (I guess when his book was published) and have been intrigued by his notion ever since. There are a couple of more videos with Lanza, and some podcasts. Iirc, he had a neglectful / abusive childhood yet as a young teenager managed to work with BF...