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

[SK2018]

@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.

That theory sounds solid I have not been tested for Lyme I will ask to have it done although I heard tests are not so reliable for it ?ibtracrlkuar bacteria at low levels esp in the nervous system could elicit constant immune responses that's for sure ,yet one would imagine the CSF via spinal tap would show some markers ?mine was normal except for the anti NMDA ,I did a course of 13 day IV macrolides aziromycin or something which acts against intracelluar bacs disnt see any improvement,I did see it after plasmapheresis though.A lot of people believe chronic Lyme is in fact residual autoimmune even though the bacteria has been cleared.

 

[justy]

Good luck Shawn - its great to hear what is happening in other parts of the world. I hope it goes well for you.
@Gingergrrl - have you read this thread?

 

[SK2018]

My pleasure to share ,I'm meeting another Pheonix Rising member here tomorrow who will be getting anti NMDA testing ect ,so we will grab a quick coffee and update.
I'm
Currently staying at the Chang Gung Memorial Hospital outside Taipei

[/QUOTE]="justy, post: 781249, member: 1132"]Good luck Shawn - its great to hear what is happening in other parts of the world. I hope it goes well for you.
@Gingergrrl - have you read this thread?[/QUOTE]

 

[ash0787]

Your resourcefulness is really impressive, especially considering you only had the illness for a year,
my version of CFS presents in a very different way though so I am not sure the same tests would help,
its primarily physical in my case with the onset marked by inability to stand up and walk properly with a weird feeling in the legs, general weakness and slight fever plus OI and increased heartrate.

Neurological symptoms have always been associated with significant overexertion and they tend to be short lived with some exceptions.

Autoimmunity of various types is my preferred theory for CFS in general at the moment though.

 

[Daffodil]

That theory sounds solid I have not been tested for Lyme I will ask to have it done although I heard tests are not so reliable for it ?ibtracrlkuar bacteria at low levels esp in the nervous system could elicit constant immune responses that's for sure ,yet one would imagine the CSF via spinal tap would show some markers ?mine was normal except for the anti NMDA ,I did a course of 13 day IV macrolides aziromycin or something which acts against intracelluar bacs disnt see any improvement,I did see it after plasmapheresis though.A lot of people believe chronic Lyme is in fact residual autoimmune even though the bacteria has been cleared.

agree.

the test to get is the LTT ELISPOT

13 day course of IV azith ....I also didn't feel much with the Azithro but I think you have to use it in combination with others.

I don't know. all I know is, I got mono, got sick, was sick for decades, tried all kinds of stuff, then finally got some relief with antibiotics. God only knows why

 

[jaybee00]

Hi Shawn,

A couple of questions. I thought in your first post you mentioned that you had already tried 500 mg Rituximab? Is the cost for plasmapheresis 2000 or 20000 pounds for 5 treatments? You listed both. Also I think it might make more sense to do the rituximab first, wait for it to wipe out B Cells and then do the plasma because you wont be making much antibodies then, and it might be more likely to work? Also why did you do the plasma in Taiwan rather than in mainland china?

Thanks,

JB

 

[msf]

Hi Shawn,

We have had similar experiences up to a point. I lived in China (mostly in Shanghai) for 4 years, but I fell ill in Vietnam and then came back to the UK for treatment on the NHS...3 years later I still don´t have a diagnosis from them. So after 4 months I went to see KDM in Belgium, where I found the trigger for my illness: a Yersinia infection. I briefly thought about going back to China, but the lack of regulation and the hustle and bustle of evey day life put me off.

Btw, have you ever been tested for Chlamydia? Cpn has been linked to ME, whilst Ctr is an STD and causes ReA, like Yersinia.

Oh, and where did you live/are you living in Shanghai? I am an ex-Huaihai Lu and Hongqiao Lu-er. I studied at Fudan and Jiaotong and also taught English at a school near Zhongshan Gongyuan.

 

[msf]

Oh, and I think if you don´t speak Chinese then the trip would be very taxing - a guide/translator would be a good investment, and probably not too expensive.

 

[Daffodil]

@Shawn LUMBAR PUNCTURE 60 pounds?????????????

 

[Daffodil]

@msf did treating the Yersnia help you? if so, how much?
thanks

 

[msf]

Hi Daffodil,

The biggest change I saw was from adopting a FODMAP diet (like some ReA patients do), but the treatment may have helped too. I think treating the gut, rather than Yersinia itself, definitely helped. I still haven´t got rid of the Yersinia infection though, so that might be why the treatment for Yersinia didn´t have an obvious effect.

 

[SK2018]

Hi Shawn,

We have had similar experiences up to a point. I lived in China (mostly in Shanghai) for 4 years, but I fell ill in Vietnam and then came back to the UK for treatment on the NHS...3 years later I still don´t have a diagnosis from them. So after 4 months I went to see KDM in Belgium, where I found the trigger for my illness: a Yersinia infection. I briefly thought about going back to China, but the lack of regulation and the hustle and bustle of evey day life put me off.

Btw, have you ever been tested for Chlamydia? Cpn has been linked to ME, whilst Ctr is an STD and causes ReA, like Yersinia.

Oh, and where did you live/are you living in Shanghai? I am an ex-Huaihai Lu and Hongqiao Lu-er. I studied at Fudan and Jiaotong and also taught English at a school near Zhongshan Gongyuan.

Your story is fascinating thanks for sharing I'll do a chlamydia check and also for the otter if possible,how would the latter Yersinia be treated?
My blood tests don't show infective markers are you saying it's possible have chronic chlamydia infection without markers ?i have had 13 days of potent IV arizomycin macrolides AB before so if it was there it should have been cleared ,that was before I knew what was wrong with me ,I think I felt better a good bit after the AB as that one has immune suppressant effects also.
I was staying at Hong Kou bear the stadium but I won't be able to go back and re extend my 5 year visa which ends in Nov 30 ,so will stay in Taipei or HK

 

[SK2018]

@Shawn LUMBAR PUNCTURE 60 pounds?????????????

Yes indeed between 60-100 max

 

[SK2018]

Yes I had an initial low dose cautious course 50mg per each 3 days as the docs wanted to monitor for allergic reactions or other negative signs ,this time we are going full on.

Plasmapheresis is around 2000 pound for 5 sessions ,they use a membrane to filter out antibodies ,proteins and toxins but your cells are returned. No blood products are used it is very safe and I had zero side effects and was playing I phone games during the process..


I came to Taiwan because it's less expensive here than Shanghai ,and Warmer ,cold makes me worse.

Yes I guess that would make more sense but I was suffering badly so needed quick relief so plasmapheresis is the best quick fix.

Hi Shawn,

A couple of questions. I thought in your first post you mentioned that you had already tried 500 mg Rituximab? Is the cost for plasmapheresis 2000 or 20000 pounds for 5 treatments? You listed both. Also I think it might make more sense to do the rituximab first, wait for it to wipe out B Cells and then do the plasma because you wont be making much antibodies then, and it might be more likely to work? Also why did you do the plasma in Taiwan rather than in mainland china?

Thanks,

JB

 

[msf]

Your story is fascinating thanks for sharing I'll do a chlamydia check and also for the otter if possible,how would the latter Yersinia be treated?
My blood tests don't show infective markers are you saying it's possible have chronic chlamydia infection without markers ?i have had 13 days of potent IV arizomycin macrolides AB before so if it was there it should have been cleared ,that was before I knew what was wrong with me ,I think I felt better a good bit after the AB as that one has immune suppressant effects also.
I was staying at Hong Kou bear the stadium but I won't be able to go back and re extend my 5 year visa which ends in Nov 30 ,so will stay in Taipei or HK

Ah, the (relative) delights of line 10! I don´t think I ever got off there though. I didn´t even know there was a 5-year visa, they only ever gave me a 1-year one!

I don´t know much about Chlamydia, but if you are talking about CRP, then when mine was tested it wasn´t high yet I was positive on the Yersinia test, and also had a lot of the Yersinia symptoms. Also, it isn´t an STD, but rather a gut bug, but I´m sure it´s possible to pick up in China as well as Vietnam. Quite a few of KDM´s patients are positive for it.

I would have thought that 2 weeks of IV azithromycin early on would get rid of Chlamydia, but again I don´t really know. The problem is that Chlamydia testing isn´t as straightforward as Yersinia, so it might be a bit more open to interpretation. Either way, I would get some more infectious disease testing done if I were you, some of these things are hard to treat (like Yersinia, which requires serious courses of antibiotics) but I think it´s better to know your enemy.

 

[SuzieSam]

@msf Can you tell me a bit about KDM in Belgium, please? Why did you choose it, what did they test for, how expensive, do you recommend them for a total ME work up? Thanks!

 

[SK2018]

Ah, the (relative) delights of line 10! I don´t think I ever got off there though. I didn´t even know there was a 5-year visa, they only ever gave me a 1-year one!

I don´t know much about Chlamydia, but if you are talking about CRP, then when mine was tested it wasn´t high yet I was positive on the Yersinia test, and also had a lot of the Yersinia symptoms. Also, it isn´t an STD, but rather a gut bug, but I´m sure it´s possible to pick up in China as well as Vietnam. Quite a few of KDM´s patients are positive for it.

I would have thought that 2 weeks of IV azithromycin early on would get rid of Chlamydia, but again I don´t really know. The problem is that Chlamydia testing isn´t as straightforward as Yersinia, so it might be a bit more open to interpretation. Either way, I would get some more infectious disease testing done if I were you, some of these things are hard to treat (like Yersinia, which requires serious courses of antibiotics) but I think it´s better to know your enemy.

I'll get it tested doubt I have any active infections it possible it could have been a trigger for the Neuro immune illness as could they as they believed caused mine "HSV 2" also can be ,any virus that uses our nervous systems for residency is bad news IMO.

As far as bacterial infections go mvcoplasma ,legionella species ,chlamydia ect are all well known triggers of auto or neuro autoimmunity in suspectible people or at suspectible intervals where normal IS functioning is down. myacoplasma which can hide intercellulary can be a real bugger to get rid of.

I have shown slow improvement since my immune treatment started so i am pretty sure the diagnosis of immune an mediated cause was correct

 

[King Elliott]

I was able to get an NMDAr-ab and GABAa-ab test on the NHS recently by fortunately stumbling across a very open-minded, forward-thinking and thorough neurologist. Haven't got the results yet but my story is very similar to yours: viral infection -> DP/DR as strong symptoms -> gradual worsening.

The poor girl (I think she was my age!) had no clue what the blood test form was indicating and pronounced "GABA" by spelling out the letters. I guess they don't do many of these tests on the NHS!

To the person who mentioned psychosis: with a low (but still clinically significant) level of NMDAr autoimmune attack, one would typically expect to observe depersonalisation and derealisation long before psychosis (as shown through dose-dependent response to NMDAr antagonists like ketamine). It's possible that, if left uncontrolled, even a low level of NMDAr antibodies would eventually cause chronic psychosis though.

 

[SK2018]

I was able to get an NMDAr-ab and GABAa-ab test on the NHS recently by fortunately stumbling across a very open-minded, forward-thinking and thorough neurologist. Haven't got the results yet but my story is very similar to yours: viral infection -> DP/DR as strong symptoms -> gradual worsening.

The poor girl (I think she was my age!) had no clue what the blood test form was indicating and pronounced "GABA" by spelling out the letters. I guess they don't do many of these tests on the NHS!

To the person who mentioned psychosis: with a low (but still clinically significant) level of NMDAr autoimmune attack, one would typically expect to observe depersonalisation and derealisation long before psychosis (as shown through dose-dependent response to NMDAr antagonists like ketamine). It's possible that, if left uncontrolled, even a low level of NMDAr antibodies would eventually cause chronic psychosis though.

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

 

[Aurator]

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

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？