• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

frederic83

Senior Member
Messages
296
Location
France
I did a series of small fasts afterward but unfortunately don't think it did me much good...

My first fast was only for 2 days and the improvement was great. The second one was less effective, and so on. I could not stand fasting now.
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
you guys who benefit from fasting haven't already tried a keto diet trial...
... a keto diet on the recommendation of a POTS literate Endo has made a huge difference.
Here another keto enthusiast!! :) :) I am glad to hear you managed to find a doctor literate on POTS and keto. Would be the dream for me! Had to discover myself keto, myself that I actually do have pp blood flow issues (the fifth doc was able to measure them, I praise him and the best hospital of the country!!) and test myself that I have POTS (meanwhile confirmed by doctor). I am so glad about your post: the first person with POTS and keto I know of! I really want to ask you a couple of questions. I am so curious!
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
could not stand fasting now
What happens?
I am keen to learn more about fasting issues as in me there was benefit but also issues. So I am glad you posted your experiences. You describe a decline in effectiveness of fasting. To what do you attribute it?
 
Last edited:

frederic83

Senior Member
Messages
296
Location
France
To what do you attribute it?

I think the first fast was a big improvement because I ate gluten and sugar, foods which I was intolerant at that time. So when I removed these foods by fasting, it cleared a lot of inflammation. I understood at this time that I had inflammation in my colon (left side, the connection between the small and big intestines, mainly) and my stomach. That is probably why I felt better.

But like everything with CFS, it does not last. I have the same experience with supplements that rapidly wear off with time until it is not helping anymore or even adds more inflammation. Now, I'm too sensitive and intolerant for supplementation, or other drugs.

I follow a keto-paleo diet because I'm worse when I don't follow it.
My CFS is highly correlated to my gut health. So I suppose that EBV is lying there and is wreaking havoc the intestinal track.
 

SuzieSam

Senior Member
Messages
201
Location
Israel
The hummingbirds foundation for ME who base their research on some of the leading facts in relation to the disease actually class CFS and ME as separate they describe CFS as being quote "a waste basket diagnosis" as in its a diagnosis of the undiagnosed.
Now I assume what they mean is a lot of people that have "diagnosed" CFS which nobody truly knows the cause of most likely have other undiagnosed treatable conditions that mimics most of the symptoms of CFS.This would explain why many people on PR have similar yet differing symptoms ,and treatments or supplements that help some don't help others ,moreover I highlight the fact that even in the Rituximab trial not everyone responsed ,which would imply some peoples so called CFS is autoimmune and some others may have a different mechanism at play.If I had accepted my doctors waste basket diagnosis I would never have found out the reality,and been able to improve rapidly.

"The primary diagnostic criterion for M.E. is acquired CNS change. We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET and neuropsychological testing.
CFS patients may not have any of these
findings...." Dr Byron Hyde, Hummingbird Foundation.

I wonder if there are any CFS/ME patients who've managed to get ANY of these tests done? Would a finding of "acquired CNS change" make you stop seeking underlying causes?

How does he help patients? He suspects a viral cause for this "ME" he defines, even tbough in that video it rubbishes the notion! WTF?

Their list of possible symptoms is huge - and almost identical to whats put down to CFS and Fibromyalgia anyway! Kudos to them for going for legitimacy by finding scans that show physical proof, and to Dr Hyde for hunting deeper for underlying medical complaints in patients.

But the name change wouldn't change much for most of us. We need to hunt, push, and invest in testing for ourselves. After 9 years of listening to mainstream doctor crap, your story @Shawn has spurred me to action!

I hope it all works out for you, and you enjoy bring home and looked after. :thumbsup:
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @Lolinda

No, sorry, not aware of anyone doing these sorts of tests in the UK outside of academic research.

Again unfortunately not something that seems to be done over here. I did had low positive ANA but it was ignored. I am almost certain I have celiac disease but it wasn't confirmed before I went on exclusion diet. There is autoimmunity in each generation of my family - celiac, hashimotos, RA & probably sjogrens.

  • Did your POTS go away or improve on keto in terms of BPM?
  • What exactly were and what are currently the postprandial symptoms you mentioned?
There is a lot of crossover in symptoms, which is why I never realised I had the hypo problem.

Typically now I see my POTS as primarily increased heart rate, palpitation, adrenaline overload, sweats, dizziness & early morning waking, which remain largely unchanged in keto.

What has gone with keto is frequent migraine, hunger, cold chills, blurred vision, sleepiness/cognitive crash, numbness/weakness, night-time waking & insomnia, general fatigue.

Your thread on antibodies is in my bookmarks, I'd like to get the tests done at some point. But for now the focus is on MCAS and hypermobility :)
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
But like everything with CFS, it does not last. I have the same experience with supplements that rapidly wear off with time until it is not helping anymore or even adds more inflammation. Now, I'm too sensitive and intolerant for supplementation, or other drugs.

I had the same. So I was completely against supplements, from all such useless or outright damaging experiences. But then one thing changed everything: take supplements transdermally. Since then, I mostly really profit. In particular, one thing, transdermal choline changed my life much to the better. Many things improved, even my bifascicular block is gone (measured before&after!).

My CFS is highly correlated to my gut health. So I suppose that EBV is lying there and is wreaking havoc the intestinal track.

www.redlabs.be tests viruses in tissue samples. I got tested. All you need is to convince a gastro to do the biopsy samples. I :)killed:) several gastros, till one was ready to do it. Thankfully!!

physiological and neuropsychological changes: SPECT, xenon SPECT, PET and neuropsychological testing.

I had a brain spectroscopy. Is that what they mean? Did you find any published research by them on these topics? While I already resolved my ME, I am more than interested in finding possible remaining damage.

Typically now I see my POTS as primarily increased heart rate, palpitation, adrenaline overload, sweats, dizziness & early morning waking, which remain largely unchanged in keto.

same here: unchanged on keto, more exactly, continuously worsening before and since. had a few improvements by ALA and choline, though

What has gone with keto is frequent migraine, hunger, cold chills, blurred vision, sleepiness/cognitive crash, numbness/weakness, night-time waking & insomnia, general fatigue.

similar here: though I never had migraine, I had lots of sinusitis - largely gone. chills - largely gone, though still returning if I try to kill bad intestinal bugs. Sleepiness, fatigue, cognitive issues - gone.
➞ Happy as a bird ✌✌✌ ➞ All energy now into resolving autoimmunity❗
 
Last edited:

frederic83

Senior Member
Messages
296
Location
France
I had the same. So I was completely against supplements, from all such useless or outright damaging experiences. But then one thing changed everything: take supplements transdermally. Since then, I mostly really profit. In particular, one thing, transdermal choline changed my life much to the better. Many things improved, even my bifascicular block is gone (measured before&after!).

I took some supplements transdermally, it is much more tolerable, but not helping in my case. I tried it sublingually too, a few minutes in my mouth, without swallowing. But no much surprise here again. I have not tried choline. I have to experiment one supplement, one molecule at a time, to discern what can help or is worsening my state. It requires a lot of time and a lot of money which I don't have.

www.redlabs.be tests viruses in tissue samples. I got tested. All you need is to convince a gastro to do the biopsy samples. I killed several gastros, till one was ready to do it. Thankfully!!

I did most of my tests serologically, some with RedLabs. I have positive IgM and IgG for EBV. Enterovirus or other herpes virus are negative.
 

vision blue

Senior Member
Messages
1,877
One of my concerns is that plasmarphoresis and/or rituxin will cause my recurrent herpes virus (hsv1) to return, and that's what launched my nuero symptoms in the first place. feels like i'm in a catch 22.

am looking into neural panels now in the US. A neurologist is on board with ordering testing. I know about NMDA, since its so talked about now, but also want to find ones implicated in CFS, like andrenergic receptors and some subunits of acetlycholine receptors. I know Mayo has a bunch of neuro autoantibody tests, but not of their panels exactly fit. .

Comments/suggestions welcome.
 

SK2018

SK
Messages
239
Location
Asia wide + UK
One of my concerns is that plasmarphoresis and/or rituxin will cause my recurrent herpes virus (hsv1) to return, and that's what launched my nuero symptoms in the first place. feels like i'm in a catch 22.

am looking into neural panels now in the US. A neurologist is on board with ordering testing. I know about NMDA, since its so talked about now, but also want to find ones implicated in CFS, like andrenergic receptors and some subunits of acetlycholine receptors. I know Mayo has a bunch of neuro autoantibody tests, but not of their panels exactly fit. .

Comments/suggestions welcome.
Cellular immunity (t cells) and others are more important for viral control not the humoral immune system (antibodies).

I can confirm after 2 full courses of plasmapheresis I did not have even a glimpse of HSV reactivation,the only things that did bring on a reactivation was steroids ,as they knock down T cells more. For plasmapheresis I would not worry.For RTX it is possible but less likely than steroids as it leaves your T cells alone.
 

vision blue

Senior Member
Messages
1,877
Thanks Shawn. T cells are supposed to fight it off, been there have been plenty of cases with rituxin causing rememrgence of CMV and some other herpes viruses. Perhaps those folk were also t csell deficient would be a possiblity.

Incidentally, comment for all; i now have a new development that at first glance will seem irrelevent - but is not. I have glaucoma. Will know soon, but i think its normal pressure glaucoma, which basically is another neurologgical disease. Something is stressing the optic nerve and nearly nerve cells. There's a few glaucoma reserachers who have found that autoantibodies are involved in causing normal pressure glaucoma.

any comments on the encephilitis panel and Mayo?
 

Sidereal

Senior Member
Messages
4,856
One of my concerns is that plasmarphoresis and/or rituxin will cause my recurrent herpes virus (hsv1) to return, and that's what launched my nuero symptoms in the first place. feels like i'm in a catch 22.

am looking into neural panels now in the US. A neurologist is on board with ordering testing. I know about NMDA, since its so talked about now, but also want to find ones implicated in CFS, like andrenergic receptors and some subunits of acetlycholine receptors. I know Mayo has a bunch of neuro autoantibody tests, but not of their panels exactly fit. .

Comments/suggestions welcome.

Mayo autoimmune panels do not include the adrenergic and muscarinic antibodies that were found in ME/CFS and POTS. Only one lab in Germany does it but why waste money on this experimental test when there is no evidence yet that these antibodies are actually causing the disease or that they predict treatment response to RTX.
 

ivorin

Senior Member
Messages
152
Hi Shawn, Cohen linked this article to me and I find it immensely helpful. I've had a somewhat similar story, as I suppose many have had – hsv-1, onset, and now I've lived 5 years with it already without having the exact cause defined and having been treated like shit by doctors. I would really like to get in contact with the doctor you worked with but I can't figure out how to send a pm here (new on the forum).

Edit: I've sent you a msg on facebook.
 
Last edited:

ebethc

Senior Member
Messages
1,901
Cellular immunity (t cells) and others are more important for viral control not the humoral immune system (antibodies).

why is there a flu vaccine (humoral immune system, antibodies) if cellular immunity/t-cells are more important for viruses?
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
am looking into neural panels now in the US. A neurologist is on board with ordering testing. I know about NMDA, since its so talked about now, but also want to find ones implicated in CFS, like andrenergic receptors and some subunits of acetlycholine receptors. I know Mayo has a bunch of neuro autoantibody tests, but not of their panels exactly fit.
Only Celltrend in Germany does the adrenergic and muscarinic AChR Ab tests.
The Mayo ENCES panel is the best fit. The GANG test in the Profile Information list is the a3 nicotonic acetylcholine receptor Ab test.
http://www.mayomedicallaboratories.com/test-catalog/Overview/61510
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
Thanks Shawn. T cells are supposed to fight it off, been there have been plenty of cases with rituxin causing rememrgence of CMV and some other herpes viruses. Perhaps those folk were also t csell deficient would be a possiblity.

Incidentally, comment for all; i now have a new development that at first glance will seem irrelevent - but is not. I have glaucoma. Will know soon, but i think its normal pressure glaucoma, which basically is another neurologgical disease. Something is stressing the optic nerve and nearly nerve cells. There's a few glaucoma reserachers who have found that autoantibodies are involved in causing normal pressure glaucoma.

any comments on the encephilitis panel and Mayo?

I had also suspected normal pressure glaucoma for almost 10 years. It was due to thinner eye wall (real eye pressure is higher than measured and has to be calculated) and unusual shape of retina but after years without any treatment pressure is stable and there is no change to retina so I was told I don't have glaucoma after all last year because there is no pathological progression without treatment. Just to let you know if your case is any similar to mine.

I'm also interested in antibodies panels because I have plenty neurological symptoms. But I don't know if it isn't waste of money at the moment. No one will belive me anyway here even if i have positive results. Also I'm unable to organize sending sample to german lab.
 

SK2018

SK
Messages
239
Location
Asia wide + UK
why is there a flu vaccine (humoral immune system, antibodies) if cellular immunity/t-cells are more important for viruses?
To prevent "new" infections ,in general cellular immunity is more Important ,well for herpes viruses at least
 
Last edited:

ivorin

Senior Member
Messages
152
To prevent "new" infections ,in general cellular immunity is more Important ,well for herpes viruses at least
Hey Shawn, I've sent you an email, hope you have time to answer some time this week, or add me on Skype ivorin_vrkas. Cheers again :)
 

SK2018

SK
Messages
239
Location
Asia wide + UK
Hey Shawn, I've sent you an email, hope you have time to answer some time this week, or add me on Skype ivorin_vrkas. Cheers again :)
I think @Jonathan Edwards would be the best person to answer your question about the post RTX infection risk ,the case studies showed its a small increase. A tiny amount of Cases of JC virus PML have been reported and are usually fatal.
 

ivorin

Senior Member
Messages
152
I think @Jonathan Edwards would be the best person to answer your question about the post RTX infection risk ,the case studies showed its a small increase. A tiny amount of Cases of JC virus PML have been reported and are usually fatal.

I just randomly quoted this,sorry. I'd really appreciate an email response, I've sent it from orinivanvrkas@gmail.com.
I'd like to get in touch with the people helping you in Taiwan.

I'm also interested to know what you think makes the body create more or less of the faulty antibodies, what can be done in general to dissuade sympoms until immunomodulation?

Thanks again :)