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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. Z

    Vitamin D sensitivity

    Also have problems with D. Feel horrible and every time i take it and my levels are very low below range so doesn't add up. Still trying to understand why but my theory is that it causes more calcium absorption and retention which in turn causes mitochondrial problems, apoptosis, and...
  2. Z

    Immuno Globulin IV

    Mr. Edwards the "risk/benefit assessment" in those with Nero diseases is not the only differentiating factor that make IVIG more routinely used as a treatment when compared to those with ME. It is also the fact that there are seroligical markers and antibodies for these patients, which is not...
  3. Z

    Immuno Globulin IV

    I am not saying do not get IVIG if you have evidence of an immune deficiency or autoimmune. If you have either of these and weigh the risks with your doctor, than IVIG may be helpful. However your doc is likely going to be submitting for your IVIG under "immune deficiency" or an autoimmune, not...
  4. Z

    Immuno Globulin IV

    It's puzzling to you why I would simply remind people their are serious risks of IVIG and discourage its use for conditions it is not indicated for? Wow! Again, I'm giving people an opinion based on my experience and research. At the end of the day people need to decide what is best for them...
  5. Z

    Immuno Globulin IV

    This is exactly my point. That is what I am saying.... It's only used for a certain set of conditions, mainly neuromuscular diseases and for people with immune deficiencies. It's not used for ME and it's quite risky so unless you have a condition it is used for, I would not be looking to do it...
  6. Z

    Fungal infection in cerebrospinal fluid from some patients with multiple sclerosis.

    Thanks for sharing. This is interesting findings. I am a big believer that Fungal Infections are severely under-diagnosed and are one of the leading causes of MS, autoimmune diseases and even cancer. The testing and diagnostic capabilities available are horrible, and for the testing that is...
  7. Z

    Immuno Globulin IV

    Not coming here to fear monger, i am simply giving people here something to consider before doing IVIG. There are some serious side effects. I am not saying it doesn't help some people, but it shouldn't taken lightly and i personally don't think it should be used for ME. If you suspect you...
  8. Z

    Immuno Globulin IV

    I do not recommend IVIG unless you have a neuromuscular disorder or have tested positive for neurological antibodies and even then i would be reluctant to advise doing it. There can be some real bad side effects inlcluding aseptic meningitis which i have had several times from IVIG. You don;t...