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

SK2018

SK
Messages
239
Location
Asia wide + UK
Thanks for posting these! I would be interested to get tested myself. Could you give me the name / phone number of the lab that does the antibody testing? I guess these should be written on your lab results. Did you get tested for other neuronal antibodies as well? Or do you have their testing menu / requisition form? Thanks a lot in advance!!
(In order to get information, I do not want to go over my doctor, convince her to contact Angela Vincent, etc, that would take ages or I may fail to convince. Pretending to be a doctor and asking them questions worked for me best so far. Fast accurate information.)

I emailed Angela Vincent a few weeks ago by myself ,she replied and sadly she has now retired.
 

frederic83

Senior Member
Messages
296
Location
France
Drugs or treatments I have tried that gave me no immune reactions and benefitswhich could be safe for your wife whom obviously has a hyper sensitive system.Inaviid anti histamines they are generally not good for our already crapped out nervous systems and make me super faint and drowsy.


1:.dexamethasone (a steroid)
2: cycophlasphamide (low dose)
3: plasmapheresis
4:pprednisone

5: LDA (immune balancing)

Hello Shawn, I don't post in this thread but I'm following it :D

Is the list above in your preference order?
 
Messages
12
Shawn thank you!

She hasn't tried fasting, cause she is under-wieght. It's really hard for her to gain some weight, especially now. But in theory it sounds interesting. Your body just start eating what it needs the less and IS cells as well.
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
@Shawn Apart from NMDAr AB, were there any other antibodies that you were tested for, in CSF or in blood? I think of a DDX list. Thanks!
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
would you mind posting the list of tests? even if all were negative in you, they could help other people (and me :) ) looking for differential diagnoses....

Also you wrote that Angela Vincent retired. Did she imply that the lab which did the NMDA tests for her also ceased? (I have difficulties to imagine that as so many doctors from so many countries sent her their pateint's samples for testing...)
 

SK2018

SK
Messages
239
Location
Asia wide + UK
would you mind posting the list of tests? even if all were negative in you, they could help other people (and me :) ) looking for differential diagnoses....

Also you wrote that Angela Vincent retired. Did she imply that the lab which did the NMDA tests for her also ceased? (I have difficulties to imagine that as so many doctors from so many countries sent her their pateint's samples for testing...)

I have no idea about her lab i would imagine it's taken over by someone equally as capable.The panel they did was almost the same as the" mayo clinic auto immune encepalopthy panel" so try searching that it's pretty much identical.
 
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Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
" mayo clinic auto immune encepalopthy panel"
Found!
http://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/61510
http://www.mayomedicallaboratories.com/test-catalog/Overview/61509

What I found interesting, that they emphasize so much a paraneoplastic situation as a typical indication for these autoantibody tests. This makes a lot of sense: when the body fights some cancer, it must develop means to destroy cancerous tissue. So here it is not implausible that autoantibodies arise and studies have shown exactly that. Unfortunately for me, I just realized that I have some worrysome results in this regard: my fasting amino acid profiles in blood are almost identical to the gastric (GC) and colorectal cancer (CRC) profiles in this study, see Fig 2 (the image below. blue colour means deficiency, red excess). I eat fully enough protein. Have no malabsorption or other digestive issues. Have eaten 87.8g protein that day, which is more than fully enough. Had the amino acid profile in the next morning, fasting. -> There is no normal explanation for deficiencies.

IMG_20161122_075912.jpg


Legend: blue = deficiency, white = normal, red = excess, GC = gastric cancer, CRC = colorectal cancer

In sum:
  • Cancer is a reason for neuronal autoantibodies. (I have high alpha1 adrenergic receptor AB. NMDAr AB is a possibility. A neurologist recently diagnosed autoimmune polyneuropathy in me)
  • Amino acid profiles are an ingenious and scientific way for an early diagnosis of cancer, when one can still do sthg and when other means of diagnosis do not yet show much.
I hope for you that in case you take the test, you wont have anything resembling the pictured situations... I discovered all this today, after last week doctors looked baffled at my lacking amino acids that did absolutely not fit my abundant protein intake... Certainly, they did have no clue how that is possible...

Thanks to @Shawn for pointing me to the Mayo panel!! Without that hint, I would not have found the starting point for all this. Could be that you saved my life... further tests will show...
 
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kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
What I found interesting, that they emphasize so much a paraneoplastic situation as a typical indication for these autoantibody tests.
While a high emphasis is placed on paraneoplastic syndromes, this is the rarest outcome to have for those with a positive antibody titer and from memory, I think it mostly only occurs in those with grossly elevated antibody results.
 

SK2018

SK
Messages
239
Location
Asia wide + UK
Found!
http://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/61510
http://www.mayomedicallaboratories.com/test-catalog/Overview/61509

What I found interesting, that they emphasize so much a paraneoplastic situation as a typical indication for these autoantibody tests. This makes a lot of sense: when the body fights some cancer, it must develop means to destroy cancerous tissue. So here it is not implausible that autoantibodies arise and studies have shown exactly that. Unfortunately for me, I just realized that I have some worrysome results in this regard: my fasting amino acid profiles in blood are almost identical to the gastric (GC) and colorectal cancer (CRC) profiles in this study, see Fig 2 (the image below. blue colour means deficiency, red excess). I eat fully enough protein. Have no malabsorption or other digestive issues. Have eaten 87.8g protein that day, which is more than fully enough. Had the amino acid profile in the next morning, fasting. There is no normal explanation for deficiencies.

View attachment 18399

In sum:
  • Cancer is a reason for neuronal autoantibodies. (I have high alpha1 adrenergic receptor AB. NMDAr AB is a possibility. A neurologist recently diagnosed autoimmune polyneuropathy in me)
  • Amino acid profiles are an ingenious and scientific way for an early diagnosis of cancer, when one can still do sthg and when other means of diagnosis do not yet show much.
I hope for you that in case you take the test, you wont have anything resembling the pictured situations... I discovered all this today, after last week doctors looked baffled at my lacking amino acids that did absolutely not fit my abundant protein intake... Certainly, they did have no clue how that is possible...

Thanks to @Shawn for pointing me to the Mayo panel!! Without that hint, I would not have found the starting point for all this. Could be that you saved my life... further tests will show...
Fascinating information thanks for posting ,except for HSV there could r an underlying discreet cancer somewhere also that would make B cells so paranoid and on edge as to make this mistake to a "common" virus in the first place.Did you have a full body MRI or PET? Or a "Tumor marker" test? I know negative results don't 100% exclude cancer as the tumor could be microscopic but its presence eliciting Neuro immune dysfunction.
 

SK2018

SK
Messages
239
Location
Asia wide + UK
While a high emphasis is placed on paraneoplastic syndromes, this is the rarest outcome to have for those with a positive antibody titer and from memory, I think it mostly only occurs in those with grossly elevated antibody results.

Sometimes I read these holistic solutions to auto immune diseases,it's good advice but when he says confidently "remove the trigger of your autoimmune reaction" well that's easier said than done and sadly not possible when it's a herpes virus like HSV , HHV6 ,CMV ,EBV that started it ,as your body is making cross reactive antibodies against the virus that hits your own tissue at the same time ,but sure lets just go and "remove"those latest viruses it's easy right ?as the article says so.

It seems a lot of people with ME ,CFS get chronically sick after an initial viral infection despite usually negative readings for viral DNA or infectious maker thus it's most likely a persisting cross reactive auto immune response.

I understand leaky gut can cause auto immune issues also but seems most people with ME had a viral trigger and many of the flu like symptoms can be attributed to one part of the immune system (the good part) constantly suppressing /fighting the bad part ,such chronic immune activation can't be doing any good long term and will burn out the system way earlier than should be.
 

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Messages
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Shawn, please, I know it's not easy for you and you might have your problems. But can you provide contacts of the clinic in china, that can make autoimmune analysis, cause in Russia nobody makes it in a proper way.
 
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ebethc

Senior Member
Messages
1,901
RUTIXMAB took me about one week o start noticing slow yet stable improvements and I am still improving on it ,it's a double edged sword as it stops production of good antibodies also which leaves you more suspectible to EBV CMV reactivations although I still have T cells and no cells ect ,reactivations of these at least in me would be near impossible with the strong
Immunity I had before ,it's a pity indeed that a drug to specially target only
The bad antibodies leaving
The good intact is not available yet as that indeed would be wonderful.
A lot of people with CFS my own version included often complain of
Intermittent inflammatory reponses in
The cns (ups and downs) according to the specialist here in my case it's caused by resident protective CD4 CD8 T cells within the cns constantly having to neutralize incoming anti NMDA antibodies,this one those are removed the "protective" yet damaging reponses shoul subside.i may add there was another patient treated in this hospital for CFS with A PP and Rituximab combo who achieved a 70% remission which has lasted now 7 months later.

how many rounds of Rituximab to ppl typically do? I only have EBV - not CMV or HHV-6, so I am lucky in that regard b/c those infections seem to be much stronger than EBV from what I've read. thx.