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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. I


    Hi, does anyone know if there is anywhere in the UK that offers IVIG privately? I'm looking to try it out as a POTS treatment which seems to be autoimmune in my case. It seems it is only offered on the NHS for immune deficiency and, whilst I know i'm immune deficient (low white blood cells and...
  2. F

    IVIG/SCIG treatment for fatigue

    After finally finding a doctor willing to run extensive immune labs, it turned out I had low IGG levels. I was prescribed IVIG as the first substantive treatment for my fatigue. After enduring the initial side-effects, IVIG had a systemic benefit. It gave me more energy, supposedly as an...
  3. D

    Starting ivig - concerns

    Hi all, I’ve found a doctor who is willing to try immune treatments for my POTs (based on antibodies), along with other general signs and symptoms suggestive of some sort of strange immune dysfunction/autoimmunity, coupled with a strong family history of autoimmunity on my mothers side. I also...
  4. Countrygirl

    Paper by Dr Nigel Speight and Helen Brownlie: The findings of controlled trials on use of intravenous immunoglobulin (IVIG) to treat ME

    Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome https://www.mdpi.com/2227-9032/9/11/1546?fbclid=IwAR0yp17ol088Njbi7T2ppu4XS4KsCTdsHxCPpaBD_Hg7cWlOeMIZCN-A54o
  5. frozenborderline

    How do i get my doctor to pay attention to my case and be less scattered and more responsible ?

    I found an amazing immunologist and mast cell specialist. I thought "since my current me/cfs specialist is too scattered to help me well, this doctor should suffice, and maybe she can lead a bit more in treating my case rather than me having to do a lot of the steering". Well, our first visit...
  6. aurel

    lasting worsening after immunoglobulines (gammanorm)

    I started taking subcutaneous immunoglobulines (gammanorm) in spring of 2020 (prescribed by KDM). Before the treatment, I was able to work 30h per week and go for 30 minute walks daily. I did the treatment for 6 weeks (one injection per week) and felt a continuous deterioration. At first, I...
  7. crypt0cu1t

    Getting Ulcers Again From SCIG (sub-cutaneous immunoglobulin)

    So, as some of you know, I started SCIG again for my Autoimmune Encephalitis. In 2018 I did high dose IVIG and sooner after developed severe esophageal ulcers, mouth ulcers and swollen lips alongside high fevers. I'm getting ulcers again (I can feel the intense pain just as I did before) but...
  8. ChookityPop

    Anyone tried Plasma exchange as an alternative to IVIG?

    Total plasma exchange (plasmapheresis). Just discovered this. It seems to be more «affordable» also. Is there a Way to try this in a clinic somewhere or some other way? https://www.terumobct.com/Pages/Therapeutic Apheresis/neurology/Neurology-Economics.aspx A COURSE OF 5 STANDARD INFUSIONS...
  9. ChookityPop

    Case Report. Voltage gated potassium channels ANA-dysautonomia-IVIG

    Found this a while ago regarding voltage gated potassium channels ANAs. Have you guys tested for this? Here's a detailed case report from Norway on a woman with Sjogren's, dysautonomia and involuntary muscle twitches who was diagnosed with malingering/somatization for years, when she actually...
  10. ChookityPop

    Anyone cured their POTS?

    I have blood pooling and the last week I have been experiencing dizziness for the first time. Though I should note that Ive been on Mestinon for 3 days. Ive seen people reverse their pots with: Abx IVIG & Rituximab I read somewhere that doxycycline could help strengthen ligaments, could this...
  11. gbells

    What happens with IVIG therapy?

    I have some questions about IVIG therapy. My understanding is that there is an immunodeficiency where people can't make antibodies. So IVIG is infused into the blood, sticks to loose invaders and then people have an immune response. What does it feel like as this happens? What are the...