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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. Shawn

    Shawn Senior Member

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    Hey everyone I'm new here ,before I was the picture of perfect health I almost never got sick ,had a great social life and was in the best year of my life and then BOOM it all changed.

    I contracted a HSV 2 infection on October 4 2015 something at the time I thought was not a big deal I mean who cares about a few bumps a few times per year right? But 2 weeks after this infection things started to go wrong. It all started on October 18 when I woke up and suddenly had a strange low level headache and found Myself in derealization every single day ,soon after that periods of anxiety attacks ,tingling ,fatigue and clumsiness started to set in as well as nightmares and brain fog
    And weird fatigue.

    I had no idea what was wrong ,I kept going for all these tests and things kept coming back normal,finally I was told by a specialist that I have ME/CFS,still since there was no sign of HSV antibodies or DNA or other infections in my CSF via spinal tap i became convinced that What I have is an autoimmune condition,I believe many people diagnosed to have ME despite sharing similar symptoms and a similar clinical course are divided into different subsets caused by different things,however I hold my belief that most forms of CFS are immune mediated.

    With this belief and a newly inflamed brain and myself deteriorating rapidly with worse memory and brain fog I set out to get treatment ,flew back to the UK (I'm a Brit living in asia) got abused and pushed aside by the NHS as all their "standard"tests came back normal ,after 6 months of suffering more damage I finally went back to China and a smart neuro immune specialist tested me for lots of different neuronal antibodies via immune fluorescent staining ,the blood staining test came back strong for anti NMDA antibodies and they were found in my CSF,my CSF syndrome sharing nearly all your symptoms was caused by A persistent mild form of anti NMDA antibodies attacking receptors through out my nervous system,China being
    Cheap and willing with experimental health care allowed me access to all forms of immune modulation treatments.

    Here is the results.

    STEROIDS
    minimal relief

    PLASMAPHERESIS-
    A very noticeable improvement of all my CFS symptoms fatigue ,nervous system symptoms but only temporary as the antibodies are getting reproduced fast.


    RITUXIMAB
    I am now slowly and stably improving how long this trend will last i will know soon and report it here.


    IVIG
    A disaster,gave me an immunonallergic reaction in the CNS and dropped my baseline down 30% never been the same since,i suspect the reaction was caused by an influx of 25 bottles of human albumin protein and a large number of foreign antibodies from countless different people.

    Quality and cost of treatment in Shanghai is very fair,for 5 sessions of plasmapheresis it was 30000rmb roughly 3000 pound.

    Rituximab cost me only 1400 pounds for a one time
    500mg infusion
    (which is enough to get rid of all B cells)

    Steroids -well cheap as chips here literally.

    RECCOMMENDED HOSPITALS
    For plasmapheresis-Shanghai Rui Jin
    For neuroimmune -Hua Shan Hoapital


    MY POINT
    Nobody knows exactly what causes CFS let alone their own CFS,with so many different triggering onsets and theories it's lowly our syndrome is caused by various factors I just think instead of debating the role of herpes viruses outside of being an initial trigger it's probably more prudent to start thinking an autoimmune or
    Immune mediated disorder ,I have never gotten benefit from antivirals like I have with immune modulation,I understand the virus was the trigger of the initial incorrect immune behavior most likely through a process of "molecular mimicry"where the IS recognizes one of the viral /bacterial proteins as looking like something in the nervous system thus fires both ways.

    I would suggest getting tested for all the anti neuronal and nervous system antibodies available I'm so glad I did and now I can at least have hope to he better and above all get recognition of having a a real illness which all forms of CFS moat definitely are.Maye by doing this you will discover your from it certainly is more useful an endeavor than CBT or anti depressants.

    VIRAL TITRES
    Btw as a footnote I don't regard the high viral titres as relevant or important at all ,all that shows is good immunity to a latent infection ,I would rather have a strong control response to a latent infection rather than a poor one ,and besides before my HSV CFS autoimmune trigger I have had latent EBV and CMV since
    I was a kid and each time I tested that the IGG titre was always around 1:250-1:300 and that was in the most healthy amazing years of my life ,my titres to those same viruses are still similar now and I even had DNA tests for both of them no virus DNA could be detected in the blood ,all these titres mean are a sign of past latent infection and a good immune patrol of the pathogen.

    If you want to experiment with treatment and get access to all testing you want at good quality and a fair price I suggest coming to Shanghai China,as on the NHS forget it ,they will send you to CBT and let You rot ,and in some other countries like the USA the prices are ridiculous.

    Shawn
     

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    Last edited: Oct 17, 2016
  2. Sidereal

    Sidereal Senior Member

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    Hi, welcome to the forum. Just wondering, did you have any of the classic symptoms of anti-NMDA receptor encephalitis such as psychosis and dysautonomia?
     
  3. Shawn

    Shawn Senior Member

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    What exists and what I had and still have is a mild persistent form of anti NMDA how severe it is depends on antibody interactions ,immune system balance and other interactions.

    I had only 2 episodes of psychosis near disease onset but my main symptoms at onset were brain fog derealization and panic attacks and autonomic nervous system errors,I I finally thought I had a panic anxiety disorder. I was surprised that HSV a simple bumps virus could trigger this but it is a neuro tropic virus ,I have had the more sophisticated CMV and EBV for almost my whole life and they have never bothered me one little bit,I also understand the fact that it is theoretically possible that during the intial sexual encounter that I contracted HSV from I might have also been exposed to some other unknown retrovirus or bacteria regardless of what the trigger was , I am treating the underlying mechanism of the disease now.
     
    Last edited: Oct 17, 2016
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  4. Vojta

    Vojta Senior Member

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    Hi, can you please give estimate how much all the neuro antibodies tests costs and what are costs for consultations?

    Do they look at gut connection? Gut dysbiosis treatment and diagnosis.

    Also I'm interested how does the system works in China? Do I go directly to the one neuro immune specialist and he will send me to other places for special tests (SPECT, PET, etc)? Does everyone in the process speaks english? if it is somehow organized to eliminate hassle to minimum I think I could do it with my extreme brainfog. I have nothing to loose.
     
  5. Shawn

    Shawn Senior Member

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    Hi Vojta

    The total costs for the anti neuronal anti body panel was roughly 1000rmb (130 GBP) a consultation in the specialist clinic is roughly 300rmb 35 GBP and can be up to 14-20 minutes.

    Yes you can go direct I highly recommend Doctor Xiang Jun Chen at Shanghai Hua shan hospital neurology department he is one of the leading neuro immune specialists in Asia ,a recommended doctor by the aealliance.org and he is friends with the doctor that discovered the NMDA antibody in the US,He speaks English perfectly.

    The system in China esp Shanghai is more flexible and is open to allowing people with hard to cure illnesses experiment as long as they fully accept the risks and understand everything clearly which they will sign a consent form for,there is no way I would get plasmapheresis or rap RUTIXIMAB in the uk but here yes you can and much much cheaper than in Norway.

    Doctor Chen is familiar and understands syndromes like post lyme ect are real so I don't think he will have any issues letting you try and solve your CFS,which is in essence a neuro immune illness ,I would be happy to PM you his email so you can arrange a consultation and state your needs in advance.

    Spect and Pet can easily be arranged by him and for those in fact ANY neurologist in Hua Shan hospital ,PET is roughly 1500rmb 160 pound ,and SPECT 1k RMB 130 pound.The hospitals here in fact have more advanced testing equipment than most in the UK.

    I'll cut a long story short ,if I had not came back to China I think I would Frankly he dead by now it was literally that bad and the NHS in Edinburgh were not helpful I was disgusted at their treatment and do plan a lawsuit later once I recover ,this is your health and life so make the move and try and regain it ,let me add I had no reactions from Rituximab as I got pre meds and the 500mg does was cautiously spread over 2 weeks.

    For plasmapheresis I would recommend Shanghai "Rui Jin" hospital cost is roughly what I stated in the original post. Far cheaper than anywhere else.
     
    Last edited: Oct 16, 2016
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  6. Shawn

    Shawn Senior Member

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    TRAVEL TIP

    one trick I use for long flights with this illness is I try to book on a Monday or Tuesday most flights to shanghai on those days have many empty seats ,I make sure I am the last person on the flight and I see where the empty rows of seats are and I sit there and make a 3-4 seater bed.
     
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  7. PDXhausted

    PDXhausted Senior Member

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    @Shawn Very interesting experience, thanks for sharing! I'm curious if you ever had an ANA done and if it was positive.
     
    Janice Hargreaves and MEMum like this.
  8. Blue

    Blue

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    Hi Shawn, great story, thanks for sharing. Could you say how long the benefits of the plasmapheresis did last? In which intervalls did you have to repeat the procedure? Thanks!
     
  9. Shawn

    Shawn Senior Member

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    Did full ANA test all negative.
     
  10. Shawn

    Shawn Senior Member

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    The benefits are short lived ,I believe the immediate benefits are Because of rapid removal of the offending antibody lowering the titre and removal of circulating cytokine complexes. For me I had 5 sessions ,each course was 3 hours using a double filtration membrane to remove IGG ,one venous Catherer was in my right leg ,no side effects at all or reactions.It works yes but temporary some people get a benefit for months some weeks in my case it was around a week :( as my memory B cells are shooting out antibodies like a AK47 so the RUTIXMAB is to temporary shut down that process and let new naive B cells replace the bad ones
     
    Last edited: Oct 17, 2016
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  11. Shawn

    Shawn Senior Member

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  12. BurnA

    BurnA Senior Member

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    Thanks for all the info.
    Can you tell more about the 5 sessions - what was the frequency ?
    Also, was the benefit a return to normal or what level of improvement would you say ?

    How long did it take for a response from Ritux and again what level of response would you say you got compared to plasmapheresis.
    Thanks.
     
    rosie26 likes this.
  13. Shawn

    Shawn Senior Member

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    After 3 sessions of PP I felt 70% normal again the biggest difference was the lack of brain fog ability to think clearly and less dizziness when upright ,the frequency of I haven't misunderstood your question was 1 3 hour filter session per 2 days ,the treatment worked but only temporary ,it reduced my good titres from example EBV 1:240 to 1:10 but after a week they were up to 1:190 again so obviously the speed of production would be mimicked by the bad antibodies also thus only temporary relief.

    RUTIXMAB took me about one week o start noticing slow yet stable improvements and I am still improving on it ,it's a double edged sword as it stops production of good antibodies also which leaves you more suspectible to EBV CMV reactivations although I still have T cells and no cells ect ,reactivations of these at least in me would be near impossible with the strong
    Immunity I had before ,it's a pity indeed that a drug to specially target only
    The bad antibodies leaving
    The good intact is not available yet as that indeed would be wonderful.
    A lot of people with CFS my own version included often complain of
    Intermittent inflammatory reponses in
    The cns (ups and downs) according to the specialist here in my case it's caused by resident protective CD4 CD8 T cells within the cns constantly having to neutralize incoming anti NMDA antibodies,this one those are removed the "protective" yet damaging reponses shoul subside.i may add there was another patient treated in this hospital for CFS with A PP and Rituximab combo who achieved a 70% remission which has lasted now 7 months later.
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    @Gingergrrl may be interested in this information on plasmapheresis, rituximab and anti neuronal and nervous system antibodies. Thanks for posting this. There are a lot of good things happening in China.
     
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  15. Shawn

    Shawn Senior Member

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    Yes indeed ,I am frankly very surprised that few people ever thought to test for auto immune nervous system antibodies since many of CFS symptoms are somewhat related to such ,esp cns dysfunction ect ,certainly more relevant than testing for viral IGG titres IMO
     
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  16. NL93

    NL93 Senior Member

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    Thanks for sharing @Shawn . I have also wondered if I have anti mnda antibodies.
    Did/do you also have post exertional malaise?
     
  17. Hip

    Hip Senior Member

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    That is very interesting. Did this specialist say which particular neuronal antibodies he tested you for? Did you get a list of them on your test results? Just curious to know what your specialist considers important to test for.



    That certainly seems pretty good value for a single infusion.

    I was told that Stavanger Hospital in Norway charges 2800 + 2800 pounds for the first two rituximab infusions, and then 1500 pounds for any further infusions after that.



    That's very interesting, I had not heard of that approach; how may individual rituximab doses did you get given over the two weeks? Was each individual dose an intravenous infusion by drip bag (I think you can also get rituximab by subcutaneous injection these days)?



    Thanks very much for posting your story. Look forward to hearing your updates on your rituximab treatment. I hope you continue to get better with this treatment.
     
  18. Shawn

    Shawn Senior Member

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    Yes I did ,after excercise I would have increased brain fog ,and swollen lymph nodes and feel drained.
     
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  19. Shawn

    Shawn Senior Member

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    He tested for most of the paroneoplastic ones such as anti yo,hu,ma ,also voltage gate channel ones and a lot more ,he tested all he had on the computer system that could be tested for.


    If I remember correctly as my memory was indeed very foggy during that time I received 3 100mg doses during the first week and 2 during the 2nd ,because of my previous allergic immune CNS reaction to IVIG which dropped my baseline so they were taking
    It very cautious with RTX,I was pre medicated with 100mg of steroids ,anti histamine and Tylenol,luckily so far so good.



     
    Last edited by a moderator: Oct 17, 2016
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  20. Hip

    Hip Senior Member

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    @Shawn, presumably you speak a bit of Chinese, and I guess you probably know Shanghai reasonably well.

    But for someone who does not speak any Chinese, how easy do you think it would be for a patient to jump on a plane, book into a hotel somewhere in major city in China for a few weeks, and then approach a doctor or hospital for rituximab treatment?

    Of course these sort of things are difficult with brain fog and PEM, but the language barrier is an additional issue. Or do quite a few doctors in China have reasonable English?
     

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