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

[Sancar]

I logged on to this thread because i got email yesterday about sadly the OP not making it- but now whilst on here I cannot find that post. Am I somehow on the wrong page? looks like this is the latest, but no posts after jan 2019.

!? Yes ‘vision blue’ WHERE is the thred to this information posted ~ Yet another sorrow for all of us ~
An informative synopsis would be ‘Greatly’ appreciated..... As long as it does not offend family or close friends...

 

[Learner1]

@Sancar You will want to look here. We are all sad...

https://forums.phoenixrising.me/threads/in-memory-of-shawn-kregan-sk2018.75738/

 

[Mel9]

Very sad

 

[Everydayimsuffering]

There are lots of drugs that target specific parts of the immune system. Can you PM me? I'd be happy to share some info with you.

Hey man, im new to the site. Do you suffer from the same issues shawn did?

 

[crypt0cu1t]

Hey man, im new to the site. Do you suffer from the same issues shawn did?

Yeah, I have the same symptoms that he had.

 

[Everydayimsuffering]

I add you on ig but I have no clue how to use it

 

[crypt0cu1t]

I add you on ig but I have no clue how to use it

Lol I'll DM you

 

[crypt0cu1t]

I add you on ig but I have no clue how to use it

Check your Instagram messages

 

[Wanja]

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.

Hey Vision Blue, did you get any testing done by now? Any more information about the NDMA Situation? I have really similiar symptoms to yours!

 

[Learner1]

Hey Vision Blue, did you get any testing done by now? Any more information about the NDMA Situation? I have really similiar symptoms to yours!

Have you gotten testing for infections that can be triggering autoummunity it antibodies causing the symptoms? Attached as a list of antibodies that you can test for, depending upon your symptoms. Any doctor can order them, they just need to be willing to do so.

 

[max_yazhbin]

@SK2018 if you haven't already checked out Steven Fowkes regarding the HSV 2, he talks about how BHT is a useful treatment for such lipid-enclosed viruses, https://projectwellbeing.com/steve/

 

[Jennifer J]

Have you gotten testing for infections that can be triggering autoummunity it antibodies causing the symptoms? Attached as a list of antibodies that you can test for, depending upon your symptoms. Any doctor can order them, they just need to be willing to do so.

Thanks for this @Learner1.

This may be covered in this thread or elsewhere and I'm just not remembering or read about it, are there treatments for these antibodies that can be tested for if one is positive?

 

[Learner1]

Thanks for this @Learner1.

This may be covered in this thread or elsewhere and I'm just not remembering or read about it, are there treatments for these antibodies that can be tested for if one is positive?

Yes, there are several. IVIG, or intravenous immunoglobulins is a first step for most patients, while any infections that might be triggering autoimmunity are dealt with, and then treatments like plasmaphareses, Rituximab, bortezumab, and other monoclonal antibodies can be used. And then there are immunosuppressants, but as a cancer survivor at high risk for future cancer, I would not use the mainstream immunosuppressants.

 

[vision blue]

Hey Vision Blue, did you get any testing done by now? Any more information about the NDMA Situation? I have really similiar symptoms to yours!

@Wanja Funny you should ask that now. I just now finished a message yet again on this same topic. No, i haven't gotten any testing. with coivd making me a hermit (so far have not risked vaccination, i'ts all on standstill. i posted again becasue i'm getting new symptoms on top of the ones i posted about before here, and starting to think about pursuing testing yet again. title of my post is something like What are the symptoms of autoimmune enchepahalitis?

Do you have a link to your story? Am interested in the similar symtpoms.

 

[vision blue]

@max_yazhbin
Is it these two documents on the link you mentioned that you think are relevent?
The latest edition of The BHT Book: BHTbook-StevenWmFowkes-200302.
Using BHT (or nutrients) to treat chronic viral diseases.
Herpes, shingles, CMV, influenza, EBV, hepatitis C, HIV, SARS, corona, ebola and more.


The latest edition of Natural Anti-Viral Self Defense:
Natural Anti-Viral Self-Defense-StevenWmFowkes-210130-B&W
How to enhance innate immunity and manage redox stresses caused by acute viral infections.
This book is being written on Patreon.com (search for swfowkes). It is 2021, version 5.

 

[vision blue]

I

Think some of my major symptoms are actually coming from vestibular system because when all this started I've got neuritis in my left ear (and numbness in whole left side of face). Right ear was intact. Then recently from thyme oil I had some changes in right ear, like it unplugged (it wasnt even plugged to begin with "), and many of my cogntive problems (spatial) improved. I began reading on vestibular system and it's amazing how many cognitive and psychiatric symptoms it can cause, from personality changes to spatial awareness, visual and motor skills.
Seems like neuropsyhiatric problems can be caused by unequal processing from left and right ear.

!

Interesting. I always assumned the the neuropsych symptoms of vertigo were from the consequences of the dreadful symptom- so you've got vertigo and youre screaming because it's so bad, and others who can see no reason for your scremaing think you are crazy (there's some story in great book on this, who's name i'm forgetting).

I've been a big sufferer of vertigo intermittantly for very long time; major bouts of it. Since i have herpes on the brain, i remember reading a bunch of its connection, and some cases of meniers are from it and even bells palsy. will read more of your posts- only have passing remembrance of thyme oil.

 

[max_yazhbin]

@max_yazhbin
Is it these two documents on the link you mentioned that you think are relevent?
The latest edition of The BHT Book: BHTbook-StevenWmFowkes-200302.
Using BHT (or nutrients) to treat chronic viral diseases.
Herpes, shingles, CMV, influenza, EBV, hepatitis C, HIV, SARS, corona, ebola and more.


The latest edition of Natural Anti-Viral Self Defense:
Natural Anti-Viral Self-Defense-StevenWmFowkes-210130-B&W
How to enhance innate immunity and manage redox stresses caused by acute viral infections.
This book is being written on Patreon.com (search for swfowkes). It is 2021, version 5.

yes!!! those books are so good, I found out about ebselen from the second one and Stevens political stance is very similar to mine, he understands incentives!

 

[Muddy]

Interesting. I always assumned the the neuropsych symptoms of vertigo were from the consequences of the dreadful symptom- so you've got vertigo and youre screaming because it's so bad, and others who can see no reason for your scremaing think you are crazy (there's some story in great book on this, who's name i'm forgetting).

I've been a big sufferer of vertigo intermittantly for very long time; major bouts of it. Since i have herpes on the brain, i remember reading a bunch of its connection, and some cases of meniers are from it and even bells palsy. will read more of your posts- only have passing remembrance of thyme oil.

The primary area of concern is the liver and gallbladder. When infections establish latency in these organs they produce low grade inflammation which messes up digestion , detoxification , hormone balance and T cell function .

when histamine goes high it makes the sensory issues much worse . When histamine is high emf/rf sensitivity gets much worse .

when your liver and gallbladder function resume all of your food and histamine reactions will stop. Your digestion will become perfect, your body will detox, your hormones will balance , your nervous system will calm and you will get acutely sick . At this time all neurological symptoms will flare and then go into remission.

 

[Muddy]

Light , goal oriented exercise is part of keeping a person functional . There are many bodily processes that are dependent on this exercise. If I were to lay in bed for a week I would develop extreme sensory neurological issues which would trigger flight or fight response from the slightest stimuli .

Putting yourself in a low stress work environment it’s amazing for your hormones and your immune system.

being alone too much and thinking about health issues or reading about them is terrible for your hormones.

I was literally in the process of being diagnosed with ALS. I had muscle fasiculations everywhere even my tongue , they got worse with emf and rf exposure . I had extreme weakness to the point where walking or pushing the pedals on a car was very challenging.

 

[Muddy]

I’m telling you what worked for me. I was bedbound with severe neurological problems and almost died multiple times. I was having a lot of trouble swallowing food, slurring my words, losing use of my motor function in arms and legs , severe GI issues , tremors in arms and hands, healing voices at night , extreme spasticity in legs , muscle twitching everywhere, muscle cramping , extreme fatigue , feeling of pressure and squeezing in the back of my head and in my liver and gallbladder and pancreas , double vision , blurred vision etc etc etc

today I’m working full time , I have a girlfriend , I just bought tickets to see Guns N’ Roses at Fenway park in Boston . All those symptoms I was dealing with are pretty much gone . If I get rundown or really stressed out they flare up a bit.