Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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 Professional Patient

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    The protocol is every 3 weeks. 2g/kg sounds high. I'm on what the doctor calls a "higher autoimmune dose" though there are others here on even higher doses per kg.
     
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  2. Aubry

    Aubry

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    @Shawn What do you mean exactly by inbreaks ? Herpes viruses that invade brain etc instead of giving the classical blisters? I think I have this.
     
  3. Nickster

    Nickster Senior Member

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    @Shawn We are working with 3 doctors to come up with a plan for my son. They are thinking plasmapheresis and follow it up with rituximab. I see that plasmapherisis was short term for you. What do you think if you had done the plasmapheresis and immediatly started rituximab? Or what combo do you think is best based on your treatments so far?

    I hope that you continue to improve!
     
    Last edited: Oct 30, 2017
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  4. pattismith

    pattismith Senior Member

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    @Learner1 ,

    Did you have evidences of any auto-antibodies involved in your CFS/ME before your doc considered ritux treatment for you?
    I just wonder if Ritux is sometimes prescribed to people without any significative auto-antibodies showing up at work lab...
     
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  5. pibee

    pibee

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    Gosh it seems i will just end up paying IVIG, any way I can think of, that's my only chance here.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    @pibee I don't know if this is helpful, but my IVIG is 82 grams (in a 3-day split dose) every three weeks but as of a couple cycles ago, we reduced the interval to every five weeks. My insurance auth (approval) for this ends in Dec and I am not sure if my doctor feels that I should continue with IVIG in the new year at a reduced interval (maybe every six weeks?) or stop at that point.
     
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  7. Learner1

    Learner1 Professional Patient

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    Yes, I have auto antibodies. My doctor is not yet considering Rituximab for me. He did very conscientiously test me for and find several autoimmune issues prior to my starting IVIG. I assumed it would make the case for insurance if he wanted to try Rituximab.

    However, from what I understand, you don't want to do Ritux with active infections...need to beat them back before trying it.
     
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  8. Learner1

    Learner1 Professional Patient

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    Where are you located? Have you had thorough immune system testing?
     
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  9. Aubry

    Aubry

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    How you know when you have "active" infections?
     
  10. Learner1

    Learner1 Professional Patient

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    Test for them and have someone properly interpret the results. Many of us have chronic infections deeply embedded which many doctors miss.
     
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  11. pibee

    pibee

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    Last edited: Nov 12, 2017
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  12. Learner1

    Learner1 Professional Patient

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    Perhaps you might benefit from some of the autoimmune fighting strategies that are out there. Antibodies can be suppressed, but IVIG and Rituximab are two strategies for getting rid of them, and there seem to be others as well.
     
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  13. vision blue

    vision blue

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    I finally did one Mayo panel for neural autoantibodies, but it was NOT the one with NMDA unfortunately. Also doubt the stability of the sample- drawn at a busy satellite lab, then sent to the main lab, then sent on to Mayo. They take al ong time to process the blood at the busy satellite lab, and just wonder if it was cooled appropriately etc.

    I got a bunc of symptoms with a herpes infection. still dont' know if HSV1 or zoster, but I think the former. Produces a state of constant sympatetic overdrive, peppered with more intense attacks that I think could give me a storke (think very high blood pressure, pounding head, tachycardia.). Also at night, for a lack of a better descritpion "head zaps", every time i fall asleep am awakened with what feels like electicity slamming into my head. 30 times a night. Usually a bout of those will last 6 weeks, every single night in a row. is gruesome. Always comes when i get a herpes recurrence. but the blisters don't break any more, they just fade away and sometimes don't show at all (but get the prodrome). the antivirals get me too sick to take them, but i think did help when i tried.

    incidentally, this was not i don't tink the start of my CFS. I 've had disabling fatigue for years. this was a "bonus" picked up i think from a hematologists stethescope- that was one of the sites of my first outbreak- there and forehead. exactly where she places sthethescope. I was going there for anemia- big mistake,. she was a scatterbrained kept having me come back for no reason. she had mostly cancer patients in the office, and I expect that's how i picked it up.

    my rheum is happy to give me ritixumib, but with the recurrent herpes, i think i'd get even worse. he does not take it serously and thinks recurrent herpes is nothing.

    thought about sending to that lab in germany, but theres' always so much to manage have not been able to do it.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Which panel did you do? Was it positive for any auto-antibodies?

    I am wondering, since you seem to have active infections, if your rheum would be open to you trying IVIG vs. Rituximab at this point? Have you had IVIG in the past?

    It might be helpful and informative but if you already test positive for auto-antibodies from Mayo (or other tests), it probably will not change your treatment plan.
     
  15. Fogbuster

    Fogbuster Senior Member

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    Hey, what is "thorough immune system testing"? I've had all the standard full blood tests through the NHS and nothing came back unusual.

    I get memory issues, chronic sinusitis, muscle twitching, constant tremor, GERD, constant clearing of throat, head pressure, blank mind, anxiety, lowered mood. This happens after I exercise, eat foods which people with mast cell diseases have problems with, ingest a stimulatory supplement or too much caffeine or dark spirits. Even small amounts cause dysfunction, but it varies depending on quantity consumed.

    Chronic cold exposure, cbd oil, sun 30 mins - 1hr /bright light device are all strong immune modulators which benefit me a huge amount. They all put me back in kilter and make me feel much more functional, better stress tolerance etc, just all round much more normal and feeling like my old self. Weaker immune modulators such as zinc, licorice, LLLT have a pretty significant effect too.

    Do you know where I go from here if nothing came back in tests, but I have all this conclusive info? I react to all the exact same food groups as people with mast cell disorders, their worst and best food groups are coincidentally the same as mine, but again nothing came up in tests. Odd. I also get significant effects from things which balance the immune system. I seem to be TH2 dominant.
     
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  16. Learner1

    Learner1 Professional Patient

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    I'm not familiar with what the NHS considers thorough testing, but here in the US, my doctors have tested:
    • Immunoglobulins G, A, E, M with subclasses
    • T cell, B cell, and CD57 panels
    • Cytokines
    • Infections
     

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