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Gamma globulin for patients with severe muscle pain and weakness

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by RYO, Jun 8, 2014.

  1. RYO

    RYO Senior Member

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    Has anyone with severe leg weakness and pain tried immuno globulin? I have read SCIG has less side effects? What dose did you try? Long lasting response?
     
  2. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    I have done monthly shots of gamma globulin for CVID. It has raised my IGG subclass levels back to normal range and has enabled me to be around people again in a limited capacity without fear of risking infection. I did not notice any changes in pain levels however. The best source of relief in that area I would attribute to acupuncture. It's important you find the right acupuncturist who is knowledgable about CFS/Fibro/HPA access dysfunction. Best of luck!
     
  3. Ema

    Ema Senior Member

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    I think it depends on what is causing the muscle weakness.

    Something like myasthenia gravis, an autoimmune disease, might be positively affected by IVIG. But I think you would need to have an idea of the underlying cause to know if IVIG might be useful.

    I do subQ replacement weekly. I find it vastly easier and with fewer side effects than traditional IVIG. But there are always exceptions.
     
  4. RYO

    RYO Senior Member

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    My initial viral illness caused severe muscle pain and weakness (predominantly lower extremity proximal muscles). I did not have rhabdomyolysis. Autoimmune testing, EMG, and muscle biopsy all normal. Currently, presumed diagnosis is viral myopathy. My Coxsackie subtype 4 was elevated and my stomach biopsy +3 positive for VP1 enteroviral protein. I use to run, bike, kayak, rip stick and golf before my illness. Now I can barely walk around the block with my dog. Any activity leads to severe burning aching sensation especially at night. I also have random muscle fasciculations all night long.

    As with most CFS sufferers, I have PEM, sleep disturbance, and periodic brain fog. Luckily, my autonomic dysfunction got better after 8-10 months.
     
    NK17 likes this.
  5. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    Do you mind if I ask who ordered the stomach biopsy? Was that through a gastro doc or another kind?
     
  6. RYO

    RYO Senior Member

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    Gastro performed stomach biopsy and I asked pathology lab to send specimen to EVMED (Dr. Chia). I spoke with virologist in Nebraska who specializes in Coxsackie. He questioned validity of stomach biopsies. I haven't found any studies to confirm or refute Dr. Chia's research.

    I tried acupuncture last year several times with minimal relief. I found new acupuncturist who is using electroacupunture. So far so good. Desperate for pain relief without turning to narcotics.
     
    NK17 likes this.

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