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How I found the underlying cause of my CFS--anti NMDA antibodies

Discussion in 'General ME/CFS Discussion' started by Shawn, Oct 16, 2016.

  1. Learner1

    Learner1 Forum Support Assistant

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    Many people will tell you elevated IgG says you've been exposed to it and that its evidence of a past infection.

    However, very high IgG levels can indicate s chronic, recurrent infection, rather than an acute infection, which can make you very ill.

    Your titers are high but not extremely high, so its hard to tell. You could try an antiviral and see if it helps the viruses.

    But you might also see if you have other herpes family infections - cytomegalovirus, Epstein Barr, and HHV6, which may be affecting you. Also, you weren't tested for chlamydia pneumoniae which can be a problem, too. Mycoplasma and chlamydia would require antibiotics to kill.
     
  2. pattismith

    pattismith Senior Member

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    If your problem is Herpes simplex 1, (frequent cold sores), it can be fixed with Lysine. I didn't have any flare since I started this supplement.
     
    Aubry likes this.
  3. Aubry

    Aubry Senior Member

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    I never have cold sores :/ weird
     
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  4. pibee

    pibee Senior Member

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    Does anyone know what's the price of IVIG in China, I didnt find that info in the thread? @Shawn ?
     
  5. Nickster

    Nickster Senior Member

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    @Shawn How are you doing this far with your treatments and progress?
    My son's doctors want to give him plasmapheresis and ritux and it is very invasive and a bit scary.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Nickster, Shawn hasn't posted an update in a while but I am also very curious to hear how he is doing! And best of luck with your son as always.
     
    Nickster likes this.
  7. Nickster

    Nickster Senior Member

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    @pibee The doctors are in the process of coming up with an exact plan. They want to do the plasmapheresis based on his severe symptoms.
     
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  8. Shawn

    Shawn SK

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    Rituximab is well tolerated in the CSF and Brain ,some people have had CSF infusions of 10mg RTX, thus I would not worry about any seeping through the dura.

    But surely a CSF test is indicated I mean you got HSV 2 then developed chronic brain issues ,if that's not a good indication I don't know what is
     
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  9. Shawn

    Shawn SK

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    Some people instead of getting "outbreaks" get "inbreaks" the latter being more concerning
     
  10. Shawn

    Shawn SK

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    About 30k RMB (Chinese Yuan)
     
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  11. Shawn

    Shawn SK

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    It might be worth looking up "Photopheresis" it's a safer more effective long lasting form of plasmapheresis.
     
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  12. Shawn

    Shawn SK

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    I would not fear PLEX it was so benign for me, also now I don't react as than RTX ,well of course I am better than the past at least.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @Shawn How are you doing now?! When you have time, can you update us re: your current treatments and symptoms and if you are still getting Rituximab?
     
  14. Learner1

    Learner1 Forum Support Assistant

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    Shawn's quote looked to be about $4500 US. My insurance is paying about $5300 for a home infusion service to come to my home in the US. I think this is a highly negotiated discounted rate.
     
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  15. pibee

    pibee Senior Member

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    thanks. that is for how many grams?

    Price doesn't mean much if i dont know is it 5 g, or 20 g... or .. :)


    @Learner1 , what dose ? :)
     
  16. Jesse2233

    Jesse2233 Senior Member

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    ;)
     
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  17. Nickster

    Nickster Senior Member

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    Interesting about photopheresis. Have you heard if anyone has had a good response with this treatment?

    It looks less invasive than the plasmapheresis which requires surgically inserting a piece in the chest.
     
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  18. Learner1

    Learner1 Forum Support Assistant

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    I'm getting 55g, which is a middling dose around here.

    A good chunk of the cost is labor...10 hours of time with the nurse.
     
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  19. pibee

    pibee Senior Member

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    ummm best price in EU for 55 g, I've found, is 2450 EUR, without the administration of course. you get it monthly? is the goal dose 2g/kg ? I think I read you did CellTrend and was positive for many?
     
  20. pibee

    pibee Senior Member

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    @Aubry - from vaglanciclovir study: (since you have low IgG3 subclass, your high titres might mean higher than they look, than in someone with normal/high IgG values)

    Furthermore, some patients with reactivated virus may have borderline
    hypogammaglobulinemia. In these patients, a low viral
    IgG may actually represent a significant relative pro-
    portion of total IgG. Conversely, patients with notably
    strong immune systems may have more robust serolog-
    ical responses.
     
    Learner1 likes this.

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