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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    If you can’t lower the dose if you’re not making your own LDN, are you able to take it every three or four days until you get used to it?
  2. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    Are you taking it at night or in the morning?
  3. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    Sorry to hear this. I really hope you are back to your normal baseline. It’s likely you started at too higher dose. Do you have PoTS and MCAS? We often have to start lower at 0.1mg. I always think that’s better just in case.
  4. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    There are lots of people who improve at 0.1mg and below, and once they and see improvements can then increase to 0.5mg and beyond. No it is not true that below 0.1mg doesn’t blocks endorphins where did that information come from? No one can know what their sweet spot is until you start very...
  5. Heart Face

    My Recovery From CFS (1): First Thing First

    I love threads like this. Thank you so much for sharing.
  6. Heart Face

    Cause of herx from grapefruit seed extract spray?

    Just wondering how you know it’s a herx and not an MCAS/Histamine reaction? I often wonder this when people suggest they are herxing.
  7. Heart Face

    Article Dr. Nina Muirhead: ME Patient and Advocate in the UK

    She doesn’t Invest in ME Research. Details of RESTORE ME or the work happening at Quadram, which will house the centre of excellence where research has already started. Links at the bottom of the PDF here -Executive Summary for MP’s
  8. Heart Face

    (Just crashed) Could LDN have nullified immunomodulatory effects of probiotics?

    LDN isn‘t a course, it is something you need to take continually for it to work and should be started very low and titrated to individual optimal dose, and a very clean formula (avoid microcrystalline and excipients in liquid LDN) so to avoid any increase in symptoms or side effects. If you went...
  9. Heart Face

    Atlas Profilax treatment

    Hello Wayne. Thank you for your detailed update! I found this thread recently as I have been interested in atlas for a long time and wondered how you are too?
  10. Heart Face

    Atlas Profilax treatment

    Hello, just revisiting this. I was wondering if this treatment held for you? That is a crazy adjustment! Given what we know now about CCI…
  11. Heart Face

    Low dose Naltrexone

    Naltrexone HCl (Generic for ReVia) Naltrexone HCl Tablet • 50mg • 30 count $16.20 https://costplusdrugs.com/medications/NaltrexoneHCl-50mg-Tablet/?fbclid=IwAR3ZVgWHwGeYNY3r18ny-ADyjzz7veIXOyomgx9vPJf2_6mnOTzRF8L7puA Mark Cuban Has Taken On Pharmacy Benefit Managers And Forever Disrupted...
  12. Heart Face

    Low dose Naltrexone

    I think most of us are on too high a dose too. People think more is better and are in a rush to increase to 4.5mg when this isn’t the target dose (Jarred Younger says doses are individual) and take more than once a day, but many do well on the lower doses. There are some who do much better on...
  13. Heart Face

    Low dose Naltrexone

    Sorry to hear of your experience. Some of us really have a hard time getting used to it. 0.5mg can still be too high for some people. Some start on very low or ultra low doses and slowly titrate up (Or in the first two/three weeks let your body get used to LDN and don’t increase at all) Also...
  14. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    Perhaps try Dicksons and Sublingual at a Very Low Dose? They Ship internationally, This bypasses the gut so may eliminate any gastric issues. A very low dose means you can titrate really slowly. https://dicksonchemist.co.uk/new/ldn-page/
  15. Heart Face

    Poll: When do you brutally honestly think there will be a cure for ME?

    I’m not expecting a cure. What diseases have ever been cured?
  16. Heart Face

    Poll: When do you brutally honestly think there will be a cure for ME?

    There isn’t a cure for HIV and millions and decades have been pumped into that.
  17. Heart Face

    Poll: When do you brutally honestly think there will be a cure for ME?

    I don’t think recovery can be judged until at least a year of no symptoms, so is this recovery or is this improvement at the moment? I have had many of those.
  18. Heart Face

    Poll: When do you brutally honestly think there will be a cure for ME?

    Do you mean a cure or a treatment?
  19. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    This is not true. Stick to your dose.
  20. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    No, not that I am aware of. In all the issues with digestive problems that I have known, its the filler and switching it to a better filler like ginger or sucrose, taking sublingual and taking with food solves the problem. Sorry to hear you have such bad stomach issues. Good luck.
  21. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    Sublingual medications do not affect your digestion.
  22. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    Use a 1ml syringe, that way you won’t be risk taking in any cellulose with a capsule. Also less fiddly and more accurate.
  23. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    By what mechanism does LDN increase stomach acid? Sublingual bypasses the gut, it is straight into the bloodstream. As with LDN Trust‘s research, most issues are eliminated by sorting the filler issues and increasing very slowing. Problems are rarely LDN.
  24. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    Sorry to hear that. What is in your capsules? Since it is such a small dose you could put the solution under your tongue so you are avoiding the digestive tract and dosing straight into your blood stream?
  25. Heart Face

    Low-dose naltrexone (LDN) - how's it working for you?

    Some learnings from Low Dose Nalrexone (LDN)- Learnings from people who take LDN seem to be start low at 0.5mg and increase by that every two weeks. Some people seem to be sensitive to starting at that low a dose so start at 1mg or use VLDN (very low dose dose naltrexone or ultra low dose...
  26. Heart Face

    H3 (histamine) antagonist?

    Soooo.. did anyone try it?
  27. Heart Face

    Top 3 Investigatory CFS/ME specialists in the UK?

    Hi, Interested to know how you’ve got on?
  28. Heart Face

    Im outta here. Thank you for everything.

    Blooming 'ek, you're good :)
  29. Heart Face

    Plastic can harm your health - Breakspear Fatigue panel showing that there were plastic particles pr

    Anyone any thoughts on this? BREAKSPEAR MEDICAL BULLETIN, SS 2017 N0:42 https://breakspearmedical.com/wp-content/uploads/2017/06/Issue42SpringSummer2017.pdf Page Case study:ME/CFS patient’s health restored This is a condensed version of Dr Daud Mohamed’s case study of a patient whose health...
  30. Heart Face

    History, influence & implications of the IiME conference

    Any idea who Ashley is and where they are posting on FB? Thanks.