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

Sidny

Sidny

Senior Member
Messages
176
crypt0cu1t said:
Right!!! Im hoping he got better and is living life to the fullest now!
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Thanks for bringing this thread back. I hope he’s recovered too! I think this thread highlights the role of hsv in cfs and its potential destructiveness. It’s hard to believe and tragic really that more resources haven’t gone into virology and microbiology as I believe if these microbes/viruses could be eliminated from the body we wouldn’t have so many of the downstream effects ie chronic brain dysfunction, Alzheimer’s cancers etc
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
Shawn said:
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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I just saw brain on fire on Netflix and I remembered this thread.
I am sorry you have this. But I am really courious, what Symptoms did you have.
In the movie it was so extreme! That I was very confused how is that confused with Cfs. I am just genuinely interested not this, becuase I feel something is not quit right on my brain. But I do have PEM obvious, did you? Like fit all classic symptoms?
 
SK2018

SK2018

SK
Messages
239
Location
Asia wide + UK
lnester7 said:
I just saw brain on fire on Netflix and I remembered this thread.
I am sorry you have this. But I am really courious, what Symptoms did you have.
In the movie it was so extreme! That I was very confused how is that confused with Cfs. I am just genuinely interested not this, becuase I feel something is not quit right on my brain. But I do have PEM obvious, did you? Like fit all classic symptoms?
Click to expand...
Not at all brain on fire is actually a bit A typical it was more sub acute in me
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Shawn said:
Anyone know how to change name here ? Can't see in settings ,need privacy or its making me aprehensive to post updates as snooping eyes of insurers ect can track my stuff.
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Hi @Shawn, I got your PM and apologize that I am about a week behind on PM's now but will definitely reply. As far as changing your avatar name, you need to ask a moderator and cannot do it yourself. I'll tag @Sushi for you so she can advise you.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
pibee said:
I never heard anyone charging IVIG,, or any drug, by "days", but thanks! :D
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I actually have b/c when my IVIG was a 3-day cycle, I paid for three days at the infusion center (although I assume the dose of the IVIG was also a factor). But if I could have tolerated it in two days vs. three, it would have been much cheaper.
 
crypt0cu1t

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Gingergrrl said:
I actually have b/c when my IVIG was a 3-day cycle, I paid for three days at the infusion center (although I assume the dose of the IVIG was also a factor). But if I could have tolerated it in two days vs. three, it would have been much cheaper.
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Exactly how many antibodies did you test positive for before deciding your case was strictly autoimmune?
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
crypt0cu1t said:
Exactly how many antibodies did you test positive for before deciding your case was strictly autoimmune?
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I don't know if my case is strictly autoimmune (b/c my illness was greatly impacted by viral and mold triggers plus other factors) but I tested positive for eleven autoantibodies at the point we decided that IVIG was the only logical next step.
 
crypt0cu1t

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Gingergrrl said:
I don't know if my case is strictly autoimmune (b/c my illness was greatly impacted by viral and mold triggers plus other factors) but I tested positive for eleven autoantibodies at the point we decided that IVIG was the only logical next step.
Click to expand...
I feel like I have already asked you that question for some reason... lol brain fog
 
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