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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. Q

    Mike D's link blog??

    Anyone has the link to Mike Dessein's article posted on Pheonix Rising a few years ago, when he was at very ill, a photograph showing Mike lying down, loss of weight, very ill, discussing unexplained symptoms? That was prior to recover, many thanks.
  2. Q

    Qi Gong/Chi Kung thread?

    Good to hear there is improvement, and hope it continues for you. No worries about the link, brain fog and confusion, here.. Keep us posted with Qi Gong. :)
  3. Q

    Qi Gong/Chi Kung thread?

    Thanks Akrasia, I will check it out.
  4. Q

    Qi Gong/Chi Kung thread?

  5. Q

    raised liver enzymes?

    Yes, sorry you are going through this too. Tired of looking explainations for whats and why is happening to us. Had a few good weeks before onslaught of disabling symptoms, which for the most part nobody can explain...SIGH.
  6. Q

    raised liver enzymes?

    Yes, that's why I prefer to source foods (allergies permitting)...Besides, anything synthetic even when sourced from foods, is not working in synergy with thousands other nutrients we don't know about. I read the other day, that we don't even know all the nutrients in an apple..
  7. Q

    Autonomic or ...weird symptom

    Pre syncope simply means before fainting...What is OI???
  8. Q

    raised liver enzymes?

    I agree about NOT having the gallbladder removed. I refused the surgery. There are herbs such as oregon grape root, alfalfa (for liver), dandelion (for liver), fenugreek, etc..and varioius gallstones and liver flush. Unfortunately, I can't do these, but I can take seabuckthorn oil and juice...
  9. Q

    raised liver enzymes?

    I have raised liver enzymes for many years now, caused by a medication many years ago. I also have gallstones, which may or may not contribute depending if the bile flow is obstructed. Liver enzymes often go up if on meds. I take none for over ten years. Some Vits such as Bs, can also cause...
  10. Q

    Autonomic or ...weird symptom

    Hi -- waves come and go, does not last long, but the uncomfortable feeling of feeling unwell can last sometimes an hour. The waves comes on for a few minutes.
  11. Q

    Autonomic or ...weird symptom

    Thanks, I will look up OI and EVEN. I didn't do the TTT, too ill for this. Do you at times feel as if you are passing out, hot and sweaty, and weak?
  12. Q

    Autonomic or ...weird symptom

    Very hard to explain. Its a wave of what feels as dysfunctional ion channels or cellular, feels horrible, in the whole body, unable to stand, turn pale, unable to do anythying whilst it lasts. Its not as if you are fainting, uncomfortable sensation in the body, not muscle, not bones, not...
  13. Q

    High load of free radicals and

    Yes, I thought about this too. My GP refuses to test. In anycase, they treat with steroids which I would not take. I belong to a forum, and none improve, some worsen. The bottom line, is that, I feel, I need to address the digestive system, some repair is needed, before methylation etc.. I...
  14. Q

    High load of free radicals and

    Hi Alex: Relieved that there are some people at that level of severity and improved!! The only veggies I can tolerate at the mo are: celery, savoy cabbage, carrots (raw, not cooked), or boiled in water, but not eaten, baby courgettes (zuchini), tried okra (for glutathione, on/off reactions)...
  15. Q

    High load of free radicals and

    Wondering if there is anyone else as seriously toxic. MCS, multiple food and other allergies, inability to digest and metabolize most compounds in foods (and environment), even bowel movement induces rashes, feeling of being poisoned, triggers faint like episode, tachycardia, and autonomic...
  16. Q

    Who has developed a bloodhound sense of smell since getting CFS?

    Thanks for the info. I phoned several times, and was asked to phone back on Monday, to speak to a Dr...... I lost their website, and for some strange reason, can't find it. Oh, well, will keep trying.
  17. Q

    Heat & Tachy

    Are the adrenals stressed? As soon as the temperature rises, exhausted (more than usual), dizzy, faintlike, confused, forgetful, and tachy which can last for many hours! Is it autonomic? All I can do is cold foot baths, wet cold towels on neck, spray body with cool water to bring heart rate...
  18. Q

    Uncomfortable sensations - difficult to describe

    Interesting, but would this not show on an echocardiogram?
  19. Q

    Who has developed a bloodhound sense of smell since getting CFS?

    Do they other possible co infections such babesia, bartonella, Erchilichia (can't remember the spelling), and also, do they show all bands? I forgot everything I read years ago, when BB were find on DFM. Will the GP accepts their tests, if positive? I live in London, UK?
  20. Q

    Who has developed a bloodhound sense of smell since getting CFS?

    Thanks for the advice, will ask my GP tomorrow. I don't think he will do this, I live in London, UK. If the Elisa is negative, in general, they don't pursue!! I will phone and ask. If its lyme, is it possible to treat it so it does not become chronic? I would not take antibiotics...
  21. Q

    Uncomfortable sensations - difficult to describe

    (had those for years, went away, came back) Is anyone else with severe weakness, ME/CFS also suffering from sensations such as: During a bowel movement, feeling very ill as if the body is stressed by the motion? A feeling stemming from the abdomen, but not digestive area? Almost out of...
  22. Q

    Sun or heat makes you ill?

    I have been reading about this for about a year, joined a yahoo group. I doubt that my GP will test for this, nor will he refer me to specialists. I can't take anti histamines, and some are taking prednisone, which I would not take anyway. A researcher wrote an interesting article about he...
  23. Q

    Sun or heat makes you ill?

    Yes. I am hypothyroid, but can't take meds, made me worse and very ill. Looking into black radish and Iodine instead. The article mentioned that the sun/heat increases free radiacals in some.
  24. Q

    High Inflammatory Markers

    Thanks for the link. Absolutely spot on about dental issues. i am not able to tolerate local anesthetics, so this will have to wait. True about Vit C and Q10, am low on both. I can't take Vit C, because I need to get rid of high ferritin level, which is stroring in organs. I will take...
  25. Q

    Sun or heat makes you ill?

    Even if slightly hot, or if I go in the sun, it exacerbates all symptoms, and triggers some type of poisoned feeling, prickly sensations in the jaw, and chest, (similar to arachidodnic acid during a heart attack), circulating. It could be compared to when being injected with local anesthetic...
  26. Q

    High Inflammatory Markers

    For those who are full of free radicals, do you get odd sensation, in the jaw, chest area, of prickling sensations, sometimes feels as if being injected with something...feel ill at the time, this happens if its hot, (feel very ill then) or if I am in the gentle morning sun, and other times, if...
  27. Q

    High Inflammatory Markers

    I haven't take any meds for about ten years now..will only do so in life and death situation, taking some supps on and off depends on tolerance, and Ayurvedic compounds, also depends on tolerance, prescribed by an Ayurvdic doc and MD. They work well, slowly, gently, very effective, that is, if...
  28. Q

    Who has developed a bloodhound sense of smell since getting CFS?

    Which lab did you use for LD tests? How many years were ill with symptoms, before your LD diagnosis? Do you get elecrical vibrating jolts in the body, more so in the torso? I had an itch under the left arm in April. I thought it was a mole. I scratched it and "it" fell off, sqauahed...
  29. Q

    Who has developed a bloodhound sense of smell since getting CFS?

    Yes, I have this too, and its so acute, that I can even smell compounds in all foods, and based on how I react to the smell, I know if I will react to it or not. I read a published paper a few years ago, about, mutations leading to some type of very primitive state, whereas, people used their...
  30. Q

    High Inflammatory Markers

    Which reminds, when Sophie Mirza died (CFS/ME) her routine tests were "normal", and other tests, yet, upon an autopsy, there were clear inflammation showing in her spinal fluid. I can't remember what else, but whatever if it was, it was only found upon the autopsy... And yes, I am thinking of...