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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. Marilyn60

    Holy crap -- IgM deficiency

    Sadly we have no expertise in UK for tick borne diseases except maybe Breakspear clinic which I can't afford, the specialist I did see some years ago is very conservative in treatment and not sure he even sees Lyme patients these days. My GP persuaded a Rheumy to give me hydroxychloroquine plus...
  2. Marilyn60

    Holy crap -- IgM deficiency

    I found this as I was just looking on Google again at IgM deficiency which I found I have last year, so haven't got my results to hand here but IgA and IgG were within normal range. My ME/CFS turned out to be Lyme Disease and I have had long courses of antibiotics and made huge progress but...
  3. Marilyn60

    Blood Tests: Why Test the Blood? Dr Charles Shepherd

    Dr Shepherd the program you refer to was not very well researched and yes it is quite possible as you must know, for a person to test positive for Lyme Disease and be without symptoms, as it is with other illnesses that can remain in our bodies without causing symptoms. In order to conduct...
  4. Marilyn60

    Lyme on my mind

    I live in UK and things re Lyme Disease diagnosis are rather dire although Lyme Disease Action is making some progress with Public Health England - it will be a long time before things improve. I was diagnosed with Fibro, ME/CFS, Musculo skeletal Disease, Polymyalgia Rheumatica before a chance...