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

[J.G]

我想问你几个问题。你在中国见到的医生确实诊断出来你的症状就是慢性疲劳综合症吗？
你有没有询问，在中国的医学界认可的正规的治疗慢性疲劳综合症的方案是什么？
你说你很快就要开始Rituximab的第一个疗程。你的药用量是多少？在整个疗程中，你会接受多少次注射？最后，整个疗程时间多长？

Is this necessary? Others might also be interested in learning the answers to those questions (and understanding the questions themselves). I suggest you pose them in English.

 

[Hip]

@J.G
Never used Google translate? English translation:

I would like to ask you a few questions. Do you see the doctor in China really diagnosed your symptoms is chronic fatigue syndrome?

You have not asked, in the medical profession in China recognized the formal treatment of chronic fatigue syndrome What is the program?

You say you will soon begin Rituximab's first course of treatment. How much is your medicine? How many injections will you take during the entire session? Finally, how long does the entire course last?

 

[SK2018]

There criteria is similar to in the west ,RUTIXMAB I will get 500mg this 2nd time at one time 250mh each ,first course we took it way slower and way lower,I receive anti histamine ,Tylenol and steroids along with each infusion ,this is a hardcore drug and should be left as a last resort.

我想问你几个问题。你在中国见到的医生确实诊断出来你的症状就是慢性疲劳综合症吗？
你有没有询问，在中国的医学界认可的正规的治疗慢性疲劳综合症的方案是什么？
你说你很快就要开始Rituximab的第一个疗程。你的药用量是多少？在整个疗程中，你会接受多少次注射？最后，整个疗程时间多长？[/QUOTE

 

[SK2018]

Is this necessary? Others might also be interested in learning the answers to those questions (and understanding the questions themselves). I suggest you pose them in English.

Agreed

 

[J.G]

@J.G
Never used Google translate? English translation:

I read Mandarin. My comment was to serve our collective benefit.

 

[Aurator]

There criteria is similar to in the west ,RUTIXMAB I will get 500mg this 2nd time at one time 250mh each ,first course we took it way slower and way lower,I receive anti histamine ,Tylenol and steroids along with each infusion ,this is a hardcore drug and should be left as a last resort.

Sorry for sowing confusion and irritating people, as the case may be.

I still don't have a very clear picture of your position. Was a diagnosis of ME/CFS given to you by the Chinese doctor/s? What Chinese term did he or she use to describe ME/CFS?


Did the doctor/s themselves suggest using Rituximab to you or did you suggest it to them? How much prior experience of using Rituximab in the treatment of ME/CFS did the doctor treating you have?

I did ask how many infusions you will be having, and how long a period the treatment will extend over. Where or from whom did the doctor treating you obtain guidance on such things as dosage, dosage interval and overall treatment period?


You say "Rituximab took me about one week to start noticing slow yet stable improvements". That's an extremely rapid response time, if the results of the Phase 2 Norwegian trial are anything to go by, when the mean lag time from the first Rituximab infusion until start of clinical response was 23 weeks.

There are a lot of good things happening in China.

Could you give us some examples, specifically in the field of ME/CFS?

 

[MEMum]

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...

Hi Justy
My daughter was tested for NMDA Antibodies at Oxford via Dr Bansal. She was negative for them.
Background : She was diagnosed with high ASO (anti-streptolysin} titre by Breakspear and prescribed 6 weeks twice-weekly i/m penicillin. On this, her cognition and stamina improved significantly. She was able to study for and pass 2 AS levels. She had not been to school for over a year but this window of 3 months health enabled her to do that.
As she was by then 18 we got referral to local adult NHS clinic in Sutton. As she'd had the high ASO and also a high ANA titre I felt sure she'd be refered to Dr Bansal.
On the NHS, only std CBT/GET was available so decided to see him privately at Kingston.
He requested anti basal ganglia antibodies (ABGA) as she had ongoing strep infections.
This came back positive for antibodies to the pyruvate kinase receptors in the Basal Ganglia.
This had been tested at Oxford and on the basis of this they recommended testing for NMDA receptor Abs.

Are you still in Wales?

We are about 40 mins drive from Kingston on good M25 day. If you could get your GP to refer you to Dr B privately, maybe he could do the same for you. Contact m eif you want his email/Kingston number etc.
Maybe @jonathanedwards knows an easier/closer to you way of arranging this. Professor Angela Vincent who is connected with IiME, specialises in antibodies to receptors in the brain, i s based in Oxford and is another Medical/Research Advisor to IiME alongside Prof Edwards.

 

[Aurator]

Some information on Chen Xiang Jun can be found here:
http://www.huashan.org.cn/showprofessor/11
http://neuro.dxy.cn/specials/hssn/article/145422

Under the first heading ("Clinical specialisms") in the first link we learn he deals with:
"Peripheral Nerve diseases, motor neurone disease, neuroimmunological disorders (such as myasthenia gravis, multiple sclerosis)."

So there is no specific mention of ME/CFS or its equivalent.

If anyone wants more translating, and their demand for accuracy and correct idiom is higher than can be met by translation software, I'll produce a translation of my own, if Shawn or J. G don't oblige and beat me to it.

 

[Sushi]

Could you give us some examples, specifically in the field of ME/CFS?

This is off topic to this thread but one of my doctors just went to a conference on the role of gasotransmitters and chronic disease. She thought that it was relevant to ME/CFS.

 

[SK2018]

A diagnosis of ME was given not CFS whether there is any difference between the two is a topic for another day,and yes it was in China originally.

I originally suggested Rituximab as something worth trying and they agreed but suggest Friday I try IVIG and Plasmapheris, IVIG backfired and made me worse plasmapheresis helped greatly but only temporary.They had very few experience using Rituximab for ME if any at all,they believe it's a Neuro immune condition though as I do and since I am paying for it thought it's justified to try immune modulation treatment.

I'm not sure how long the infusions will last as they are split and it depends on how I feel after each one,if I get malaise or other negative effects we take a break but for this 2nd course should be 2-3 infusions max.

The doctor was using a dosage regimen which is recommended for autoimmune problems such as autoimmune anti NMDA encephalopthy,there was nothing about ME specific dosing.I would assume this came from pat experience and examples in the literature ?.

I had a full course of Plasmapheris prior to Rituximab so it is possible the intial slow improvement was due to that,and also everyone responds differently ,another reason could also be after plasmapheresis circulating levels of antibodies including the auto antibodies are lower so Rituximab will have a quicker effect as when the B cells are shut down there will be few new antibodies produced and you won't need to wait a lag time for the already circulating ones to be metabolized as they were previously removed via PP.

It's odd that it would take MAB 23 weeks to show improvements in Norway as the drug quickly and effectively reduced B cells and one gone it can take 3-5 months minimum for them to regenerate ,so they should have shown improvements way before that time.
One possibilitie could be since many people with CFS ME have different causes and varying processes driving the same syndrome and symptom list perhaps many of them did not have auto antibodies and if they did they are not
The anti NMDA ones which are what are driving my main issues ,thus varying responses to different auto antibodies and underlying processes should be expected both in terms of speed of response ,level of response ,side effects ect ,this also depends on the titre level of those auto antibodies and for me that had been greatly reduced by plasmapheresis prior to MAB.

Sorry for sowing confusion and irritating people, as the case may be.

I still don't have a very clear picture of your position. Was a diagnosis of ME/CFS given to you by the Chinese doctor/s? What Chinese term did he or she use to describe ME/CFS?


Did the doctor/s themselves suggest using Rituximab to you or did you suggest it to them? How much prior experience of using Rituximab in the treatment of ME/CFS did the doctor treating you have?

I did ask how many infusions you will be having, and how long a period the treatment will extend over. Where or from whom did the doctor treating you obtain guidance on such things as dosage, dosage interval and overall treatment period?

I am sorry I don't have any other examples for CFS so am unable to give any ,my goal with my treatment was to balance my immune system ,get rid of my auto antibodies and memory B cells.

My small improvements have been ,I have less headaches ,I can walk for 2 hours now instead of just below is before ,I don't get as much PEM,prior to treatment I would get flu like
Symptoms when I went pat my limit ,now even if I do break the limit a bit ill only get a mild sore throat slight pre cold feeling but nothing else,also I have less nerve twitching and fewer nightmares.


You say "Rituximab took me about one week to start noticing slow yet stable improvements". That's an extremely rapid response time, if the results of the Phase 2 Norwegian trial are anything to go by, when the mean lag time from the first Rituximab infusion until start of clinical response was 23 weeks.


Could you give us some examples, specifically in the field of ME/CFS?

 

[SK2018]

I would like to point out that lately I have been in touch with John Spencer who is the CEO of aealliance.org he informed me of a new drug coming out soon which will be able to specifically target ONLY the rouge B cells and memory B cells and will as he put it "change the level of care for people with AE " Neuro immune disease or autoimmune diseases in general,I would look at Rituximab as like walking in a bar with a cluster bomb and blowing the place up ,sure you'll kill the bad guys but everyone else too ,whereas this new drug is more like a sniper that takes out the bad and leaves the good guys intact ,thus no relevant immune suppression risk.

And let's be honest the risk of PML (a brain eating viral infection of the brain) after Rituximab use though rare is def a scary possibility as it's usually fatal thus this drug needs the utmost respect and caution ,testing for JC virus positivity before using it would be prudent.

 

[SK2018]

Yes he specializes in Neuro immune diseases and believed I had just that,he did not diagnosis me with CFS/ME that was done previously before I met CXJ but i wanted to solve my syndrome and find out what was driving the underlying process which I believed to be autoimmune ,and talking to him was the best thing to do.He wrote up my treatment plan which I then took to Taiwan(where I am now) and having it implemented.He is widely respected throughout asia and his treatment protocols will rarely be questioned.
Please find his treatment plan well at least most of it attached below.
Actually when it states he deals with "Neuro immune disorders" to many and me that includes ME

Some information on Chen Xiang Jun can be found here:
http://www.huashan.org.cn/showprofessor/11
http://neuro.dxy.cn/specials/hssn/article/145422

Under the first heading ("Clinical specialisms") in the first link we learn he deals with:
"Peripheral Nerve diseases, motor neurone disease, neuroimmunological disorders (such as myasthenia gravis, multiple sclerosis)."

So there is no specific mention of ME/CFS or its equivalent.

If anyone wants more translating, and their demand for accuracy and correct idiom is higher than can be met by translation software, I'll produce a translation of my own, if Shawn or J. G don't oblige and beat me to it.

 

[King Elliott]

Thanks for sharing ,how long did your DP DR last ? Was it suddenly onset or gradual?

And finally did you know which virus was the initial trigger ?

Thanks

Hi Shawn,

I still have DP/DR. It's been gradually getting worse ever since the initial EBV infection a couple of years ago. Still looking for answers to stop the deterioriation because, frankly, it's by far my most troubling symptom and will surely result in my suicide if I can't resolve it.

The onset was very gradual. I couldn't even point to a specific month and say "yeah, that's definitely when things went wrong". My glandular fever was insidious and long-lasting. I believe the EBV is still active now to some extent so I recently put myself on valaciclovir.

I haven't been tested for co-infections simply for lack of a doctor willing to do it.

Wish me luck!

 

[Daffodil]

i didn't even know there were "neuroimmune" doctors!

 

[Daffodil]

@SuzieSam ....i know you asked msf but I very very strongly recommend KDM. but you must stick with the treatment long term if you have been sick long term
xo

 

[SK2018]

Here are my latest lumbar puncture results just in case it's of interest for anyone,I always highly recommend doing an LP to evaluate the CSF as you never know what will be found in there ,although I hate getting them esp as they punched my sciatic nerve in this one ,I think I moved ;( my bad.

 

[SK2018]

Hi Shawn,

I still have DP/DR. It's been gradually getting worse ever since the initial EBV infection a couple of years ago. Still looking for answers to stop the deterioriation because, frankly, it's by far my most troubling symptom and will surely result in my suicide if I can't resolve it.

The onset was very gradual. I couldn't even point to a specific month and say "yeah, that's definitely when things went wrong". My glandular fever was insidious and long-lasting. I believe the EBV is still active now to some extent so I recently put myself on valaciclovir.

I haven't been tested for co-infections simply for lack of a doctor willing to do it.

Wish me luck!

I feel you brother ,DP and DR are horrible ,if only I knew early this was the first sign of a Neuro immune illness I could have got treatment early before the "cascade" and recovered almost back to normal now ,always the earlier the better.

my DP and DR was also highly disturbing I could be sitting in front of a friend chatting but felt like I was observing everything in a movie or tv series ,I just felt disconnected and things looked and felt distant although I knew I was clearly in reality. EBV is known to infect B cells they could have transported some of the EBV into the brain under stealth. But TBH these symptom sound a lot like anti NMDA so please do let me know your results and I would figure this out fast as believe me talking from experience if you leave it going on to long and are unlucky enough to have a T cell inflammatory response against whatever is causing your symptoms in the brain it can be the most horrible experience ever and damaging.Thats what happened to me I left my DR and autonomic dysfunction syndrome too long and had a T cell response in the CNS that's what I mean when I refer to the "cascade" so don't make my mistake and act fast and go full on to solve this which it seems your doing anyway.

 

[justy]

I feel you brother ,DP and DR are horrible ,if only I knew early this was the first sign of a Neuro immune illness I could have got treatment early before the "cascade" and recovered almost back to normal now ,always the earlier the better.

my DP and DR was also highly disturbing I could be sitting in front of a friend chatting but felt like I was observing everything in a movie or tv series ,I just felt disconnected and things looked and felt distant although I knew I was clearly in reality. EBV is known to infect B cells they could have transported some of the EBV into the brain under stealth. But TBH these symptom sound a lot like anti NMDA so please do let me know your results and I would figure this out fast as believe me talking from experience if you leave it going on to long and are unlucky enough to have a T cell inflammatory response against whatever is causing your symptoms in the brain it can be the most horrible experience ever and damaging.Thats what happened to me I left my DR and autonomic dysfunction syndrome too long and had a T cell response in the CNS that's what I mean when I refer to the "cascade" so don't make my mistake and act fast and go full on to solve this which it seems your doing anyway.

I have also had quite bad DR for the past 8 years of my illness. I often feel like I am living in an alternate universe to the one around me. Its truly awful. Mine was sevrerely worsened by taking an SSRI 8 years ago that caused extreme anxiety for a couple of years and severe akasthesia which I got no help for. Im amazed I am still alive quite frankly;.

I have been found to have Cpn, but haven't been tested for antibodies apart from Lupus ones as I had a mildly elevated ANA titre (speckled).The NHS are not interested in all this at all, and as I say refused me a neuro appt.

 

[SK2018]

Sorry you suffer form DR DP so much,it truly sucks and is scary as you feel like it may never lift and it's a true life ruiner,usually DR or DP is usually a result of either toxins ,mild hypoperfusion in the cns or Anti neuronal antibodies in most cases it's rarely Viral,when I refer to toxins I would be meaning either endotoxins or Neuro toxins released by some bacteria ,Lyme ,legionella ,mycoplasma to name a few.
I just find it incredible despite having these symptoms you have not had a lumbar puncture ,there is clearly an encephalitic process going on if that's not reason enough I don't know what is surely the NHS can't be that unreasonable ,mind you it would not surprise me.

My DR DP lifted after my T cell cascade 2 months after it started,I still get it occasionally but very mild and only transient before it was almost always there.

Is there any way you could have more comprehensive auto antibody panels done privately either in the UK or nearby EU?if cost is not an issue ,I really think you deserve to get to the bottom of this and have a fair chance to end your suffering.

I have also had quite bad DR for the past 8 years of my illness. I often feel like I am living in an alternate universe to the one around me. Its truly awful. Mine was sevrerely worsened by taking an SSRI 8 years ago that caused extreme anxiety for a couple of years and severe akasthesia which I got no help for. Im amazed I am still alive quite frankly;.

I have been found to have Cpn, but haven't been tested for antibodies apart from Lupus ones as I had a mildly elevated ANA titre (speckled).The NHS are not interested in all this at all, and as I say refused me a neuro appt.

 

[MEMum]

@justy
My daughter saw an Immunologist privately Cost c £100. Presumably any Immunologist could send blood for ABGA or NMDA antibodies to the Oxford Labs.