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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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Search results

  1. Legolas

    Fibromyalgia: transfer of patient IgG antibodies produce FM symptoms in mice

    https://www.sciencedaily.com/releases/2021/07/210701120703.htm New research has shown that many of the symptoms in fibromyalgia syndrome (FMS) are caused by antibodies that increase the activity of pain-sensing nerves throughout the body. The results show that fibromyalgia is a disease of the...
  2. Legolas

    Neuroinflammation in Long Covid

    Viral presence and immunopathology in patients with lethal COVID-19: a prospective autopsy cohort study (Schurink et al., 2020) https://www.thelancet.com/journals/lanmic/article/PIIS2666-5247(20)30144-0/fulltext Summary Background Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)...
  3. Legolas

    COVIDS-19 and MECFS Deserve Similar Respect

    Indeed. I hope this doesn't sound wrong, but this pandemic could represent an opportunity for us. Who's gonna deny corona funding, even if it's a post corona infection syndrome. Or whatever you call it. We have to surf the corona wave.
  4. Legolas

    What has helped improve your energy the most?

    @Abdallah A lot of supplements seem to work in the beginning but the positive effects tend to decrease or stop after some days/weeks. I've recently started taking agmatine and it seems to help clearly. Hopefully the effects will last.
  5. Legolas

    Is insulin resistance the cause of fibromyalgia? In a subset of fibromyalgia patients, metformin dramatically improved pain

    The results are very spectacular; in the majority of the patients the pain is completly gone or almost completly gone if metformin (500 mg, 2 a day) is combined with standard treatment (e.g gabapentine, amitryptiline,..) However, this study quoted another study saying the incidence of FM is...
  6. Legolas

    Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of CFS

    (Prof Carmine Pariante, Kings College London) This is the youtube presentation of this study. Unfortunately he doesn't mention his kynurenine or tryptophan findings in this presentation... If anyone has the article, I'd like to know the details of kynurenine / tryptophan findings.
  7. Legolas

    Electronic Devices to Revolutionise Treatment of Auto-Immune Disease?

    The Effects of Noninvasive Vagus Nerve Stimulation on Fatigue and Immune Responses in Patients With Primary Sjögren's Syndrome. Tarn J1, Legg S1, Mitchell S1, Simon B2, Ng WF1. Author information Abstract OBJECTIVES: Primary Sjögren's syndrome (pSS) sufferers have rated chronic fatigue as the...
  8. Legolas

    Mono Virus Discovery - Implications for ME/CFS?

    So, what if Borrelia is doing the same EBV seems to be doing...... Could explain chronic lyme symptoms etc.
  9. Legolas

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    Keep in mind that fast filling with iv fluids like Na Cl 0.9% causes hemodilution and gets your hematocrit more towards 30%. The optimal oxygen delivery of blood is achieved with a hematocrit of around 30%, because you have a good balance between rheology (viscosity; the lower the Hct, the...
  10. Legolas

    Meirleir treatment: avelox 400mg for overgrowth in gut

    In Belgium doctors prescribe them like candy. GPs are "advised" by pharma reps to give avelox as a first line treatment for pneumonia. Many do so. Ciproxine and tavanic are very easily prescribed for cystitis/ pyelonefritis, also by specialists.
  11. Legolas

    Lyme 'Nano technology' antigen urine test available in EU.

    BTW, OspA is a protein essential for maintenance of the spirochete within the tick environment, so its even rather suprising to be found in chronic patients since one would expect it to be down regulated by that time. So maybe the actual group of chronic patients with active Bb infection is ( a...
  12. Legolas

    Lyme 'Nano technology' antigen urine test available in EU.

    from: https://caudwelllymedotnet.files.wordpress.com/2017/08/application-of-nanotrap-technology.pdf
  13. Legolas

    Anyone tried ketamine?

    Hey, I've been using agmatine for quite a while now. I does seem to help with the fatigue without giving that wired feeling. What is it doing to you? I take 1g (2 capsules) 2 times a day. Funny thing is this seems to be the only supplement that's cheaper here in Belgium than in the USA...
  14. Legolas

    Is this the cause of ME?

    Wouldn't it just be easier to take a silicon supplement? Instead of drinking expensive water, which will probably have far less silicic acid anyway. For Exemple; JarroSil is a patent pending Activated Silicon formula supplying stabilized molecular clusters of silicic acid. Stabilized silicic...
  15. Legolas

    IrsiCaixa's new study:Researching new tools for diagnosing CFS:HELP with the fundraising campaign!

    I can't use this to transfer money from Belgium. There is someting missing in the BIC. It should be 8 to 11 letters. (http://en.wikipedia.org/wiki/ISO_9362) For example: http://swift-code.bankslookup.com/BIC/Spain/MADRID/BANCO%20SANTANDER%20S.A.
  16. Legolas

    Borrelia: Sexual transmission

    I'm positive for the LTT and negative for another test, but don't know wether it is western blot or antibodies, should look it up. DML starts wich antibiotics untill you have some degree of functioning (like part time working), then he continuous with samento/ banderol ( + biofilm defense ). My...
  17. Legolas

    Borrelia: Sexual transmission

    I'm in treatment with DML and I'm positive for Borrelia (LTT) and Bartonella. I' don't have fluctuating symptoms, they do not migrate through my body, i don't have artritis or any kind of pain, I never had a ECM of Bartonella stripes. In other words I'm not what you would call a typical lyme...
  18. Legolas

    Borrelia

    I have Bartonella and Lyme and I've been taking Clarithromycin 500 1/d for about 2 months now. In the beginning i had a mild herx raction; some headache and some joint pain, wich i usually don't have. Those symptoms faded away after couple of weeks. I am, however, improving smal step by step. I...
  19. Legolas

    How much melatonin do you all take?

    3 mg, one hour before bedtime. Now brand (iherb).
  20. Legolas

    KDM abx protocol for borrelia

    It's also KDM who's treating me. It's indeed Kirkman Biofilm Defense he prescribed. PQQ is a vitamin like substance which supports the mitochondria. http://www.iherb.com/Kirkman-Labs-Biofilm-Defense-60-Capsules/38176
  21. Legolas

    KDM abx protocol for borrelia

    Hi Filfla, Did he prescribe any biofilm destroying things for you? I intitially tested negative for Borrelia and positive for Bartonella, about 1.5 year ago. This month i tested positive for Borrelia on LTT. (now i gonna start on clarithromycine 500mg, biofilm defense, PQQ, and berberine)
  22. Legolas

    KDM abx protocol for borrelia

    I recently tested positive for Borrelia by kdm. I was allready diagnosed with Bartonella about a year ago. I haven't got his letter here with me, and i'm still ordering things (Biofim defense was out of stock at iherb...), so i should read again what doses to take in what amounts, but this is...
  23. Legolas

    Belgian prescription - UK Pharmacy?

    Another tip: If the injection hurts, even with xylo, warm the hydroxo up to bodytemperature. I just put it in a cup of hot water for 10 min. (wouldn't recommand microwave ;-) ) Makes a lot of difference to me. If there would be any doubt; the hydroxo 10 mg is twice a week for ... well kinda...
  24. Legolas

    FROM MOOD DISORDERS TO MCS: A NEUROINFLAMMATORY MODEL

    I also avoid MSG (monosodium glutamate) like the plague. This means eating home cooked unprocessed foods for the most part. Manufacturers use a ton of different names to hide it, and even "natural flavors" must be considered suspect. There's an article on pubmed about MSG and fibro...
  25. Legolas

    Brussels info anyone...?

    I take the train to Brussels Nord and then the train to Vilvoorde (direction Antwerp). Then you have to take bus 47 indeed. When you leave the station of Vilvoorde bus 47 is on your left, it's a different bus (MIVB, orange and grey ) then the others (De Lijn, jellow and white). You stop at...
  26. Legolas

    Llewellyn King interviews Dr. Kenny De Meirleir: ME/CFS Alert, Episode 42

    No, I've allready been diagnosed with Bartonella by dr.DML and I'm on rifampicin and lymecyclin currently.
  27. Legolas

    Llewellyn King interviews Dr. Kenny De Meirleir: ME/CFS Alert, Episode 42

    I'd go for intracellular. Because; -it's more logical; it's harder for the immune system to get them, making them chronic more easily -lately he's really getting into Bartonella, which is intracellular -if it was 'just' intercellular, i don't think he would emphasize it that much Anyway, i see...
  28. Legolas

    Important Discovery Exposes Autoimmune Nature of ME/CFS - HERVs Implicated

    I've put below a link of an article about a specific HERV and MS, some lines from the article and an image expressing the general hypothesis. Since MS is kind of put forward as a possible model for ME, this could be relevant. Anyway, i think it's interesting...
  29. Legolas

    Important Discovery Exposes Autoimmune Nature of ME/CFS - HERVs Implicated

    I gonna quote from the article; So the antibodies that you make to attack HERV proteins also (accidently) attack other cells/parts in the body. At least, this is how is see it.
  30. Legolas

    ME/CFS B-Cell Study/Rituximab Implications

    have fun