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

[SK2018]

I am a long term resident
Here so yes I speak the language.

For the flights I would book on Monday or Tuesday when there is always many free seats ,I make sure I am the last to get on so I can see where the empty rows are and I sit there and bed myself a 3-4 seater bed seat. This trick Really helps with PEM.

Hotel prices are very good I recommend Genting Star at hong Kou area about 25 pound per night ,or motel 168 or the Jinjiang inn chain,all similar prices.

I would consult Doctor Chen in advance
(PM me for his email) he was the person that made my treatment plan despite the fact I got it done in another hospital,he is well known in asia and most will follow and adhere to his advice.

If you want to book a private prioritized consultation with him since he is very busy you may have to ask for his private outcall rates as they most likely will be higher but nowhere near as pricey as the US.His English is fantastic.You should have prior evidence of a CFS ME or post Lyme diagnosis or other auto immune evidence to make things easier although without those it should still be possible just would be more slow and more evaluation would be made.

 

[J.G]

Thank you for sharing your experiences, Shawn; it's extremely informative! I'm seeing the contours of a testing and treatment roadmap in your story that might one day - once ME/CFS is firmly established as a neuro-immune disease - become standardised. I admire your courage and perseverance for following the trail all the way down to Rituximab. I hope you continue to find improvement!

 

[SK2018]

n

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?

Thank you for sharing your experiences, Shawn; it's extremely informative! I'm seeing the contours of a testing and treatment roadmap in your story that might one day - once ME/CFS is firmly established as a neuro-immune disease - become standardised. I admire your courage and perseverance for following the trail all the way down to Rituximab. I hope you continue to find improvement!

Thank you it was getting so bad that I had frankly nothing to lose ,so I made the decision to commit.I am a big believer that people with chronic illness when some evidence exists that some treatments can help and when the illness is at the point they are unable to have a normal life they should be allowed to experiment and try treatments as long as they understand the risks fully and sign a waiver.one thing I am sure about it is it's all a lot more useful than CBT which insults us claiming our debilitating illness is a mood disorder.

 

[kangaSue]

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.

Was the NMDA receptor Ab the only abnormal finding you had?

The tests run for you look similar to the Mayo PAVAL (Paraneoplastic) panel except Mayo only does NMDA receptor Ab test in the Reflex series if there is a positive finding in the Profile tests however, the NMDA receptor Ab test is standard in the ENCES (Encephalopathy) panel which covers pretty similar territory.
http://www.mayomedicallaboratories.com/test-catalog/Overview/83380
http://www.mayomedicallaboratories.com/test-catalog/Overview/61510

 

[SK2018]

Will be starting Rituximab in a few days will update on the progress ,reactions effects ect ,fingers crossed.

 

[justy]

Im wondering if it would be possible to get this kind of testing done by a private UK neurologist? Im much too sick to travel to somewhere like China and have the added issue of MCAS making travel very hard to arrange -as I need control over my environment.

Your onset sounds similar to mine. I have been thinking fo antibodies to various things for a long time- no idea where to go in Europe or who to ask...seems that some like you and @Gingergrrl who really push for answers are finding the autoantibodies. I do have clinical dx of Lyme, ME and MCAS. I had a lot of panic attacks and borderline psychosis early on in the illness. Low titre ANA, but tests for Lupus and Sjogrens all normal...

 

[J.G]

@Shawn Good luck! Do keep us posted!

@justy Oxford University Hospitals offer immunological testing, including for NMDA and acetylcholine receptor autoantibodies as well as calcium channel and potassium channel autoantibodies. Have a look here at their diagnostic test list.

 

[justy]

@Shawn Good luck! Do keep us posted!

@justy Oxford University Hospitals offer immunological testing, including for NMDA and acetylcholine receptor autoantibodies as well as calcium channel and potassium channel autoantibodies. Have a look here at their diagnostic test list.

thanks - but this is an NHS Hospital so wouldn't take private patients. never in a million years would I get an NHS referral to go there and then they wouldn't take me seriously. I need the name of a private neurologist who would run these tests. If anyone knows...

 

[Sidereal]

thanks - but this is an NHS Hospital so wouldn't take private patients. never in a million years would I get an NHS referral to go there and then they wouldn't take me seriously. I need the name of a private neurologist who would run these tests. If anyone knows...

Recently a family member came down with neurological signs/symptoms and our GP in Ireland was able to order antibody testing from that hospital in Oxford. You do not have to be a private patient there. (We're not even in the same country.)

 

[Daffodil]

@Shawn I looked up anti-nmda encephalitis but it looks like its a more acute syndrome and can lead to seizures and even death?

but then it also says it can happen in the presence of autoimmune conditions such as lupus if the person shows psychiatric conditions.

a large percentage of female patients who have it also have ovarian tumor

I wonder if others with CFS would test positive to this and what it even means. could it just be a common feature of CFS?

I am skeptical that this is the underlying cause of your condition, though....but I am glad you can get good treatment in China...I had no idea China was the place to go!
xo

 

[SK2018]

Your findings are correct however anti NMDA antibodies esp if they are at lower titer levels and if a person has T cell resistance (where one part of the immune system attacks the rouge party) the disease can be more mild and long lasting,the exact cause of CFS has never been found ,the neurologists I talk to here believe ME /CFS it is either autoimmune or caused my low level entero viral infection of the brain stem,most of us here have neurological symptoms and systemic dysfunctions despite very few markers and usually no markers of infections ,it thus seems most likely our illness is caused by some sort of Neuro immune dysfunction ,auto antibodies and anti neuronal antibodies specifically cause such dysfunctions,so it's a sound starting ground.

It's not entirely impossible that I have a low level viral infection within my cns ,but my MRI and Spinal Tap were normal for all findings and Viral and Bacterial DNA cultures except for presence of Anti NMDA.

The largest evidence I had was I responses to plasmapheresis well as did one more person I knew in Shanghai with CFS "abeit temporary".

Rituximab is a potent drug with some serious side effects and not something I take on easily in fact I had refused it for 1 week prior to this day but I no I can't go on living normally with these symptoms so I have to take the dive.


My main symptoms are autonomic dysfunctions ,flu like feelings after excercise ,sore throats ,headaches ,fatigue and brain fog.Also anytime my immune system is challenged I get inflammatory cascades in my cns followed by weeks of worsening symptoms.

Treatment here in China is more flexible however the doctors I see Will only treat ME CFS if.they believe the particular case they are dealing with is immune mediated,so it's not garunteed.

However after finding the anti NMDA antibodies I get respect and recognition that I deserved before,it seems that somehow verified my CFS ,sad but true.

 

[SK2018]

Recently a family member came down with neurological signs/symptoms and our GP in Ireland was able to order antibody testing from that hospital in Oxford. You do not have to be a private patient there. (We're not even in the same country.)

Correct their are quite willing to consult and help,have had a few emails with back and forth useful communication

 

[SK2018]

Im curious since you have many Neuro dysfunction symptoms did you ever get an MRI ,SPECT ,or esp a spinal tap to check for basic markers? This is more easily available and accessible than auto antibody testing ,but I would strongly advise you test for anti NMDA AbS and other anti neuronal antibodies,but bare in mind there are thousands of unknown antibodies yet to be discovered that could be involved ,anti NMDA however is one of the most common ,my body did not produce HSV 2 antibodies it produced cross reactive anti NMDA ones ,kind of sad That a cold sore virus 80% of people have screwed me over this way.

thanks - but this is an NHS Hospital so wouldn't take private patients. never in a million years would I get an NHS referral to go there and then they wouldn't take me seriously. I need the name of a private neurologist who would run these tests. If anyone knows...

 

[vision blue]

I feel like this is pretty applicalbe to me - if only i can get hooked into the right place for testing. I too have autonomic symptoms and they started with a herpes virus on chest and head. iknow its apparetnly not hsv2, and most likely hsv1, though herpes zoster is possible. its just impossible to get docs to believe a word I say, and i have plenty of credentials when i walk in the door. if they can't see the encephalitis from the other side of the room, theyre not buying it.

nmda has indeed been linked to herpes viruses (and of course acetylcholine and some andernergic autoanitbodies in CFS). But when i asked an expert at neuro complicatiosn of herpes (he's a reseacher), he had never even heard of the nmda link- i sent him a paper. He was unaware of even any antibody testing going on for brain involvement in herpes neuro complications.

anywya, i'm in the states. I know someone above listed the Mayo panel for encephiliitis , but at the moment don't have a doc that would order that. my rheum has humored me in the past, but the last test i begged for (a cytokine panel from ARUP) turned up as all normal and he put a stop to my ordering. my internist would be happy to if i had a good reason, which ialways do, - but he retired. Have a quite smart neurologist (more than many i've been too) , but he's very by the book and suffers from "I am God" syndrome.

i also have had an AI rheumatic disease for decades, so everythign blamed on that. But this autonommic stuff started with a herpes virus. Also gives me vertigo.

so frustrating because i can watch the damage and at some point willl all be irreversable.
In addition recent amino acid testing shows oxidative stress to the max, plus i was able to reconstruct their might be some attack on myelin. Recent testing also shows elevated epinerphine, nor epineprhine, dopamine, and glutimate (oddly serotonin and GABA also not too far beyond). other tests includ igg subclasses which shows very low end of normal ig3 (not uncommon in both CFS and especially for herpes viruss) , and ratio of igg1 to igg2 different than normal suggesting higher relative igg2) . Syptom wise, brain "zaps", feeling head is flying away every time i try to sleep (dozens of times in first 2 hours of night), migraine type headaches, dizziness, bouts of very high blood pressure, bouts of tachy cardi (140+ bpm, some of it positionally dependent, but not alays), night sweats, can never be compformatble temp wise- burning up or freezing, chest zaps (feels nerve related), sound senstivie, feel overstimulated, vertigo, pain along bridge of nose.

rheum is willing to do rituxin, and i might be able to make a case for ivig _ but i would only do sub g which hi harder - i don't think rituxin a great idea in my case because of possbily revurring herpes virus (Not to mention possible chronic sinutistis)

anyway, feeling stuck. I understand alot more than many, but it does not seem to do me much good. Cannot get to china. i'm lucky if i can drive 5 miles in a really good day.

 

[SK2018]

I feel like this is pretty applicalbe to me - if only i can get hooked into the right place for testing. I too have autonomic symptoms and they started with a herpes virus on chest and head. iknow its apparetnly not hsv2, and most likely hsv1, though herpes zoster is possible. its just impossible to get docs to believe a word I say, and i have plenty of credentials when i walk in the door. if they can't see the encephalitis from the other side of the room, theyre not buying it.

nmda has indeed been linked to herpes viruses (and of course acetylcholine and some andernergic autoanitbodies in CFS). But when i asked an expert at neuro complicatiosn of herpes (he's a reseacher), he had never even heard of the nmda link- i sent him a paper. He was unaware of even any antibody testing going on for brain involvement in herpes neuro complications.

anywya, i'm in the states. I know someone above listed the Mayo panel for encephiliitis , but at the moment don't have a doc that would order that. my rheum has humored me in the past, but the last test i begged for (a cytokine panel from ARUP) turned up as all normal and he put a stop to my ordering. my internist would be happy to if i had a good reason, which ialways do, - but he retired. Have a quite smart neurologist (more than many i've been too) , but he's very by the book and suffers from "I am God" syndrome.

i also have had an AI rheumatic disease for decades, so everythign blamed on that. But this autonommic stuff started with a herpes virus. Also gives me vertigo.

so frustrating because i can watch the damage and at some point willl all be irreversable.
In addition recent amino acid testing shows oxidative stress to the max, plus i was able to reconstruct their might be some attack on myelin. Recent testing also shows elevated epinerphine, nor epineprhine, dopamine, and glutimate (oddly serotonin and GABA also not too far beyond). other tests includ igg subclasses which shows very low end of normal ig3 (not uncommon in both CFS and especially for herpes viruss) , and ratio of igg1 to igg2 different than normal suggesting higher relative igg2) . Syptom wise, brain "zaps", feeling head is flying away every time i try to sleep (dozens of times in first 2 hours of night), migraine type headaches, dizziness, bouts of very high blood pressure, bouts of tachy cardi (140+ bpm, some of it positionally dependent, but not alays), night sweats, can never be compformatble temp wise- burning up or freezing, chest zaps (feels nerve related), sound senstivie, feel overstimulated, vertigo, pain along bridge of nose.

rheum is willing to do rituxin, and i might be able to make a case for ivig _ but i would only do sub g which hi harder - i don't think rituxin a great idea in my case because of possbily revurring herpes virus (Not to mention possible chronic sinutistis)

anyway, feeling stuck. I understand alot more than many, but it does not seem to do me much good. Cannot get to china. i'm lucky if i can drive 5 miles in a really good day.

I feel you totally ,btw we get diagnosis and treatment long term or heaven forbid permanent damage has been done and then we get blamed for being on disability ...well if they had listened early we could have avoided that.

Herpes viruses are nasty esp HSV 1 ,2 and varicella and virus that lives in Yue nervous system is bad news I'll take a blood borne cell dwelling virus like EBV or CMV anyway of the week ,had them since I was a kid was the picture of perfect health ie non issue.
What many doctors miss is Neuro probels after HSV 1 or 2 or zoster are rarely the virus directly and usually due to incorrect immune reactions.

I would be VERY careful of IVIG it caused me acute encephalitis and a cns inmuno allergic cascade ,25 bottles of blood derived albumin and half a million antibodies from 20000 different people is asking for it.
I would try plasmapheresis first it's quite benign and gave me NO side effects followed by a course of steroids for a few months and see how it goes.

Rituximab use it as a last resort it's expensive and risky ,think "PML" and heart attack as a rare but listed side effect.

if you want treated I suggest Taiwan ,it's. Very Cheap here with quality neurological care plasmapheresis is only 2000 pound for 5 sessions here the same in the us would Cost over 10k,I am now in Tawain receiving treatment actually as we speak was referred here by my specialists in Shanghai. I would not waste time and risk more brain damage IMHO.

About MAB and recurring herpes don't worry too much ,MAB removed memory B cells and stops more antibodies being made your bad ones will be absorbed and you'll keep your existing ones at least for 3 months ,T cells are more important for latent virus control and you don't lose them ,once your B cells are out boost your T cells to the max with supplements and take anti viral herbs licorice root ginger and garlic to compensate ,you'll need be careful of bacteria though so wear a mask in busy places it's what I do now also.

 

[justy]

Im curious since you have many Neuro dysfunction symptoms did you ever get an MRI ,SPECT ,or esp a spinal tap to check for basic markers? This is more easily available and accessible than auto antibody testing ,but I would strongly advise you test for anti NMDA AbS and other anti neuronal antibodies,but bare in mind there are thousands of unknown antibodies yet to be discovered that could be involved ,anti NMDA however is one of the most common ,my body did not produce HSV 2 antibodies it produced cross reactive anti NMDA ones ,kind of sad That a cold sore virus 80% of people have screwed me over this way.

Unfortunately I have been refused a neurologist referral so have had none of the above. One Gp remarked that my arm flinging movement and tics and seizures weren't normal and suggested I see a neurologist. Next time I went to ask them they said I had 'seen enough consultants'.

 

[Daffodil]

@justy they wont even give you a referral?? dang. that's awful.

you probably aren't missing much..i have seen a few and they seem to be the least sympathetic to our condition for some reason

 

[Daffodil]

@Shawn I have the same symptoms for almost 23 yrs. the illness has taken my whole life.

I am wondering if you have been tested for lyme

there are many docs out there who believe autoimmune illnesses have intracellular bacteria as the cause or part of the cause.

 

[kangaSue]

thanks - but this is an NHS Hospital so wouldn't take private patients. never in a million years would I get an NHS referral to go there and then they wouldn't take me seriously. I need the name of a private neurologist who would run these tests. If anyone knows...

I agree with Sidereal and Shawn, you can have a sample drawn to be analysed by Oxford University Hospital. I had bloods drawn here in Australia and sent to Oxford to be tested for a3-acetylcholine receptor autoantibodies which is implicated in autoimmune GI dysfunction and Paraneoplastic Syndromes.

 

[SK2018]

Unfortunately I have been refused a neurologist referral so have had none of the above. One Gp remarked that my arm flinging movement and tics and seizures weren't normal and suggested I see a neurologist. Next time I went to ask them they said I had 'seen enough consultants'.

My God ,how fortunate I am to live in "communist" China where they seem to ironically have more compassion on sufferers,I realize it's hard for you to travel but if there was some way you could make it in the long term it could be worth it ,it's incredible despite your symptoms you didn't get any of these tests it can at least show legitimate issues to prove an organic cause of your ME.Its Amazing how the NHS cab get away with such malpractice ,no wonder people pay annually for Bupa.

If you do wanna investigate the easiest way would be Taipei taiwan ,cheap and high quality private hospitals here ,airport in the middle of the city so your off the plane and 10 min later in a hospital ,book a weekday ,Monday or Tuesday make sure our the last on the plane and grab a row of 3 seats and sleep for the 9 hours.

MRI cots around 150 pound
Lumbar puncture around 60
Auto antibody panel 100
Plasmapheresis 20000 pound for 5 sessions full course.

I'm only giving ideas here not garuntees,that's up to the doctors,but these are the things that helped me, I hate to see people suffer and be ignored you need a proper investigation.