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

Gingergrrl

Senior Member
Messages
16,171
Wear a mask but infection risk is only slightly raised without B cells no big deal. I suggest you read this article life without B cells.

@Shawn Thank you for the article and I just read the abstract and bookmarked it to read the rest later. My doctor (and a few other docs & nurses that I asked) said it was not necessary to me to take anti-virals or wear a mask. If I do have to go into a hospital or am near someone sick, I might wear a mask temporarily out of caution (after I have done Ritux, not this week). I'm glad you are doing so well post treatment, that is really good news!
 

SK2018

SK
Messages
239
Location
Asia wide + UK
@Shawn, how do you feel in general? Do you think you are better now, I mean cured? Do you still feel tired, ME tired? Would you say are you back to your normal self before the infection?

No I am not back to my normal but better than before for sure I aim to reach 80%,anyway less fatigue now less twitching ,less weird neuro stuff and less confusion bouts.
 
Messages
33
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.
...
 

boolybooly

Senior Member
Messages
161
Location
Northants UK
Interesting Shawn. Sounds a lot like what happened to me back in 1986. I caught HSV2 and had a rash, thought it was over then it came back in monthly-ish cycles and my brain started to get weird, as you describe and more and its stayed that way ever since. Its been a hell of a job just to stay sane. I was undiagnosed for ten years.

Autoimmune responses make a lot of sense, but clarity regarding cause and effect eludes me, in that autoimmune causes for brain problems are a fit but I dont know if that would explain the chronic immune failure, recurring viruses of several different types piggy backing on the problem and TH2 shift symptoms of very severe allergies which I also experience. Its a bit of a conundrum.

But I will return to read more and think about it and am very interested to know how you get on.

Good luck :)
 

Fogbuster

Senior Member
Messages
269

Thankyou so much for this @Shawn. Very inciteful! I might drop you a PM sometime soon to ask a couple of questions, would that be ok?
 

boolybooly

Senior Member
Messages
161
Location
Northants UK
One thought I just had was whether NMDA might also be involved in neuroimmune processes. If that was the case then an antibody could cause both neurological and immunological disruption at the same time. Just thinking out loud.
 

Fogbuster

Senior Member
Messages
269
One thought I just had was whether NMDA might also be involved in neuroimmune processes. If that was the case then an antibody could cause both neurological and immunological disruption at the same time. Just thinking out loud.

Personally, I think we should have a section on this forum devoted to Neuro-immune discussions. Seems a lot of us have symptoms with this combination.
 

SK2018

SK
Messages
239
Location
Asia wide + UK
Did you get tested for anti NMDA antibodies or a rat brain Assay to detect novel antibodies ?

Also was HSV 2 ever detected in your CSF?

Interesting Shawn. Sounds a lot like what happened to me back in 1986. I caught HSV2 and had a rash, thought it was over then it came back in monthly-ish cycles and my brain started to get weird, as you describe and more and its stayed that way ever since. Its been a hell of a job just to stay sane. I was undiagnosed for ten years.

Autoimmune responses make a lot of sense, but clarity regarding cause and effect eludes me, in that autoimmune causes for brain problems are a fit but I dont know if that would explain the chronic immune failure, recurring viruses of several different types piggy backing on the problem and TH2 shift symptoms of very severe allergies which I also experience. Its a bit of a conundrum.

But I will return to read more and think about it and am very interested to know how you get on.

Good luck :)
 

rodgergrummidge

Senior Member
Messages
124
Shawn[/QUOTE]
Did you get tested for anti NMDA antibodies or a rat brain Assay to detect novel antibodies ?

Also was HSV 2 ever detected in your CSF?

Very interesting @Shawn , I hadnt considered anti-NMDA antibodies have a possible roll in some CFS. You and others in this thread (@Jesse2233 @boolybooly @Fogbuster @abc123 ) may be interested in a recent case study publication where D-cycloserin was successfully used to treat a patient with auto-NMDA receptor antibodies who was suffering from anti-NMDAR encephalitis. The authors point out that while immunotherapy can successfully treat patients suffering the consequences of NMDA autoimmunity (Such as in your case @Shawn ), D-cycloserin may also be a potential therapy in more difficult cases.

Are they the same research team that treated you in China @Shawn ?

I have pasted the front page below. The full article is available free online.

Rodger
upload_2017-9-22_16-27-10.png
 

boolybooly

Senior Member
Messages
161
Location
Northants UK
Did you get tested for anti NMDA antibodies or a rat brain Assay to detect novel antibodies ?

Also was HSV 2 ever detected in your CSF?

No and no. I am averse to disturbing the dura membrane while in this situation I have with recurring viruses so I have had no CSF tests. This also makes me cautious wrt rituximab.
 

Aubry

Senior Member
Messages
189
I have very high Herpes IGG titers. What could this mean and what should I do about it? Taking longterm antivirals?
 

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