• 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. Horizon

    uBiome Receives Patent for Diagnosing ME?

    Yeah, I am skeptical but nonetheless was happy to see someone else doing something which may be of benefit.
  2. Horizon

    uBiome Receives Patent for Diagnosing ME?

    Is Ubiome introducing a new biomarker or diagnostic for ME? "The patented technology involves diagnosing an endocrine system condition such as chronic fatigue syndrome, Graves’ disease, Hashimoto’s thyroiditis, metabolic disease, obesity, and Type I and II diabetes, and generating a therapy...
  3. Horizon

    Dr. Neil Nathan's new book -- Toxic: Heal Your Body, from Mold Toxicity, Lyme Disease, MCAS and ...

    Such an amazing recap, thank you! Interestingly phosphatidylcholine from soy lecithin is one of the only things that has helped me. I thought it was for another reason and not that it opens up detox but that's really interesting!
  4. Horizon

    Metabolic Trap, wouldn't we suffer from serotonin abnormality?

    Its hard to find info on symptoms of high serotonin not serotonin Syndrome. This website says: Shivering Muscle stiffness Confusion Restlessness Agitation Rapid heart rate Sweating Loss of coordination Twitching muscles...
  5. Horizon

    Metabolic Trap, wouldn't we suffer from serotonin abnormality?

    They discuss serotonin a lot in here https://www.healthrising.org/blog/2018/10/18/the-metabolic-trap-shines-during-the-symposium-on-the-molecular-basis-of-me-cfs-at-stanford/
  6. Horizon

    Metabolic Trap, wouldn't we suffer from serotonin abnormality?

    One thing that strikes me as odd is that if the Metabolic Trap is correct shouldn't we all have Serotonin Syndrome if we are very high? We don't generally suffer most of those symptoms. On the flip if we were too low wouldn't we all be depressed? Given that 40% of the healthy population has...
  7. Horizon

    Dr. Neil Nathan's new book -- Toxic: Heal Your Body, from Mold Toxicity, Lyme Disease, MCAS and ...

    I'm particularly interested in his treatment approach. I've seen his approach in the past so I'm reluctant to buy the book but if you could share I'd appreciate it.
  8. Horizon

    Video call support group for LGBTQ People w/ ME on 9/8

    Join us for our live Support Group (via audio or video) on Saturday 9/8 at 1 p.m. EST. Register on the link for a reminder and call information. https://my.meaction.net/events/living-w-me-support-group-lgbtq-people-w-me Topic: LGBTQ People W/ ME A conversation and gathering for members of the...
  9. Horizon

    ME/CFS Weekly Phone Support Group

    I haven't posted about in almost a year, so in case you aren't aware there is a weekly phone/internet support group every Saturday 8pm EST. Here is call information: http://me-pedia.org/wiki/ME/CFS_Phone_Support_Group Here is our Facebook group: https://www.facebook.com/groups/293261061038536/...
  10. Horizon

    Abnormal CBC, but normal B12?

    https://labtestsonline.org/understanding/conditions/anemia/ Lists tests that are helpful to run outside of standard CBC.
  11. Horizon

    Long Island CFS docs

    Where on LI are you firefly? Nassau here.
  12. Horizon

    Long Island CFS docs

    Dr. Roger Mazlen in Roslyn drmazlen.com
  13. Horizon

    Chest wall pain and fatigue

    I get severe chest pain thinking im having a heart attack. Heating pads, voltaren gel help and lately I have been trying a device called the Backpod to see if it can help longterm.
  14. Horizon

    November 2: CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

    What I gathered from the call: -CDC MECFS website will have a healthcare provider section. Almost complete. -CDC MECFS site will have "patient voice" section with patient stories. -CDC having Unrest showing for officials featuring Jen Brea. -CDC request topic suggestions be emailed to...
  15. Horizon

    11/2/2017 at 3:0O pm (EST) - CDC ME/CFS Stakeholder Conference Call

    What I gathered from the call: -CDC MECFS website will have a healthcare provider section. Almost complete. -CDC MECFS site will have "patient voice" section with patient stories. -CDC having Unrest showing for officials featuring Jen Brea. -CDC request topic suggestions be emailed to...
  16. Horizon

    Is Nutramedix stevia a good brand for helping to treat Lyme?

    I don't see any reason to get it from that company. Any Stevia (whole leaf) in alcohol should do.
  17. Horizon

    Gloria Steinem Shared Unrest on her Facebook

    That is awesome that she shared it! We need to get a share campaign going by famous ppl
  18. Horizon

    Dating

    My issue is I am mostly bedbound so those activities aren't an option and too far for me but those are great if able.
  19. Horizon

    Intracellular iron regulation, infections and the effect of LPS endotoxins

    I believe i have checked them and they were OK by 23&me
  20. Horizon

    Phage Therapy - helpful/harmful?

    I came across this probiotic with "Phage Therapy" that supposedly kills pathogens. Phage are viruses, so not sure if that is a dangerous thing for us to swallow or it is harmless yet may kill pathogens that are effecting us. Thoughts...
  21. Horizon

    Dog breeds that can be housebound only?

    I love all animals but really would only want a doggy as a pet. I am not a cat fan but would be so much easier if i were. What about those little chihauha dogs? they seem like pocket book dogs maybe I can get away with getting them their exercise indoors.
  22. Horizon

    Stanford/OMF Community Symposium and ME/CFS research in the news! (Palo Alto Online)

    @Janet Dafoe (Rose49) Janet, do you think it would be worth trying to get the media to cover this outrageous statement by NIH? I wonder if their can be a campaign over this or do you think this would ultimately hurt Ron's efforts? "Trying to reduce the cost of health care is not our priority"
  23. Horizon

    Intracellular iron regulation, infections and the effect of LPS endotoxins

    Why would iron sequestration be causing blood loss?
  24. Horizon

    Dr. Rodger Murphree free webinar on Fibro & CFS 8/28

    https://yourfibrodoctor.com/chronic-fatigue-syndrome/
  25. Horizon

    Intracellular iron regulation, infections and the effect of LPS endotoxins

    Sadly it doesn't via oral pills, food. Intravenous it does for a short time till it goes to the organs. It is a mess.
  26. Horizon

    Dr. Rodger Murphree free webinar on Fibro & CFS 8/28

    Yes, I think he threw it in his book because a lot of fibro people have chronic fatigue and some M.E. but I think you are right. We can ask him questions during the webinar and so I am hoping we press him on the research and his thoughts and get him up to speed. He seems like a good doctor who...
  27. Horizon

    Dating

    Just joined this. How do you guys/girls deal with ME and trying to find someone if you are single?
  28. Horizon

    Dog breeds that can be housebound only?

    I adore dogs and would be a wonderful human companion but I really need one that doesn't go out at all. I know it sounds awful but I would do everything to make inside living fun and physical for them. I can't stand cats so thats out. I am a doggie guy through and through.
  29. Horizon

    Intracellular iron regulation, infections and the effect of LPS endotoxins

    How do you measure intracellular iron?
  30. Horizon

    Intracellular iron regulation, infections and the effect of LPS endotoxins

    This is fascinating. I have been wondering if this is partially my problem. I am always anemic, yet even with intravenous iron most of it goes to my liver and spleen and I have iron toxicity in my organs yet stay anemic. I wonder if my body is protecting me from iron as a way to fight a...