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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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  1. S

    Anyone else have a massive improvement from Tyrosine?

    What do you recommend for testing? How do you figure out dose of Heparin? Thanks.
  2. S

    Anyone else have a massive improvement from Tyrosine?

    What about the fatigue, overall weakness, low cognitive function, and excruciating pain all over the body. Serotonin spike the cause of these symptoms also??
  3. S

    Is breast cancer related to ME/CFS?

    Thanks so much for sharing your experiences. I just had a ct scan and they found a mass on left breast. Mammogram is on Monday. Since I did not think about cysts or other anomalies I can now think in broader terms. Pain meds could have covered up any pain in my breast. My lymph nodes get sharp...
  4. S

    ABX treatment failure, nothing improving, feeling overwhelmed and powerless

    So very sorry for your present state of hopelessness. I suspect everyone in PR knows those feelings. Whatever blessing that are mine to give I send to you.
  5. S

    SBM: Chronic Fatigue Syndrome/Systemic Exertion Intolerance Disease Speculcation

    The writer's reference to a fictitious homeopathic remedy 200c C elegans caught my eye. It is the name of the nimotodes that go into a state of dauer, similar to hibernation. I did a google search for 200c C elegans and came upon a short history of C elegans research. It seems that this worm...
  6. S

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    thanks for your reply... I have related it to the dryness, major dry eyes and mouth which I experience 24/7... Hope the other eye stays free of fraying!
  7. S

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    Hmmm, I had a detached retina also... Wonder if it is a symptom?
  8. S

    Curcumin for muscoskeletal / lactate pain

    Thanks perchance,I will look into getting some Longvida to start and see what improves. Memory could sure use help!
  9. S

    Curcumin for muscoskeletal / lactate pain

    If just starting curcumin what may I expect. What dose to start with and for how long to experience any change. Also, I believe the most excruciating pain for me is the peripheral nerve pain. Possible lactic acid problem? Thanks for your help.
  10. S

    Phase III trial of antiviral + antinflammatory combo

    Could you share the name of the old anti inflammatory??? Thanks,Star
  11. S

    Dr Lenny Jason's lecture "ME/CFS, Myths versus Reality"

    My positive take from this was the impact of a survey with as few as one thousand people taking it. It challenged my perception that impact would not be achieved unless there were thousands of participants. Guess we need to keep going with more surveys and data collecting from our group. Maybe...
  12. S

    Resignation

    Sleep deprivation is a proven method of torture! So it is so important to plan for some sleep. Most of us have sleep issues and I am quite lucky to have a doc who prescribes sleep meds for me. Also I take melatonin. Taking these does get me to sleep and I find if I can sleep for fourteen to...
  13. S

    Improvement in NERVE PAIN!

    Thanks Jac for the update. I am thinking of going off the opiates and need some advice on other meds. Hope the best for you! And th paperwork is in the mail to me for an appointment with Dr. Madill. We will see how it goes.
  14. S

    Improvement in NERVE PAIN!

    Would love to hear about the Dr. G treatments you have in mind... Thanks
  15. S

    Improvement in NERVE PAIN!

    :)Hi Jacque, Been meaning to connect with you and now I am compelled by your great improvement with Subutex. I am in Northern California and appreciate the info about Dr Madill. Such good news to have a cfs literate doctor a decent drive away. I will check in with his office about insurance...
  16. S

    Take Prednisone for one day only?

    For a future one day snap out of it med, my experience has been good with a newer version of Provigil called Nuvigil. Designed primarily for narcolepsy. The PEM factor goes with it so I only take a low dose when I have to really be somewhere other than home in bed.
  17. S

    Fatigue: late night or early morning type?

    Another vote for 'fatigue' being a nonsense word when it comes to describing what most of us feel. It has a connotation and perception of being tired when tired is so lightweight a term. I don't experience tired. It is closer to a systemic failure of function. I tell my body to wake up and it...
  18. S

    The Synergy Trial: Ritalin and Micronutrients

    Hi Brian, I have a question about the pain and especially in the legs which I have in spades. You mentioned improvement in the cognitive process but not about the leg pains. Any improvements? What would you attribute any improvements to? Thanks for posting your experiences.
  19. S

    Codeine for pain - addiction worries!

    Speaking of pushback...while waiting for my prescription to be filled, one of the pharmacists came out into the aisles of the small health food/ pharmacy to find me and bluntly ask quite rudely, "Do you really take all of your pills?". I was quite shocked and gave a simple affirmative reply. I...
  20. S

    Phase III trial of antiviral + antinflammatory combo

    wow! since my pain level is so excruciating I am so happy to read a possible treatment. Thanks for posting the info and any follow ups to come. It may not be the best but at this point anything that cuts the pain is welcome.
  21. S

    Any suggestions on how to set up a fund for DRACO, a universal antiviral that could wipe out ME/CFS?

    Thanks for the update. The link above in Hip's post works just fine!
  22. S

    Any suggestions on how to set up a fund for DRACO, a universal antiviral that could wipe out ME/CFS?

    Hi Scott, I am trying to open the links to the dracofund and the browser just hangs. Could you check and see if anything is wrong. Really interested in learning more. Thanks for your dedication!
  23. S

    anyone have burning, aching legs?

    how would docs treat arthritis? do you think there are arthritis treatments to help with this burning excruciating leg pain?
  24. S

    Comment by 'Starfive' in 'The Winds of Change'

    What does "stuffed up" mean? I can pretty much guess through context yet would like to know. Thanks Alex, great blog!
  25. S

    anyone have burning, aching legs?

    Not versed in gene language, so can you explain what these results mean? Thanks!
  26. S

    What has helped you the most?

    Thanks Justy for the info, I will pass it on.
  27. S

    What has helped you the most?

    @justy Would you mind sharing what kind of magnesium and ow much helped your restless legs? I have a friend who has that nightly. Thanks.
  28. S

    What has helped you the most?

    Forgot to mention feeling more toward normal when taking a brain stimulant medication. The illusion of normalcy though disappears the next day though and the pay back for me is more severe PEM. One day able to enjoy some function :), the next back in bed sleeping for 14 hours only to awake to...
  29. S

    What has helped you the most?

    My biggest help so far is pain meds plus my heating pad, very low tech but helps for the pain in my legs. I have tried many supps and some valgancylovir for only three months and feel like I am not dosing high or low enough or long enough maybe. I do not have a good ME/CFS doctor, specialists...
  30. S

    What has helped you the most?

    @SOC How long on Valcyte if you are up to sharing details?