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

Cohen2

Senior Member
Messages
119
Location
New Zealand
Unless I read wrong you said you had a poor immune response to EBV and despite having the virus were unable to get detectable IGG or IGM readings,this really made me take notice as this is EXACTLY what happened and is happening with my HSV 2 infection and what I found out was the reason for this was my body did not produce the Correct antibodies for HSV 2 and instead produced a cross reactive auto antibody that hits the virus and my own tissue as well thus making me sick,this sounds exactly what is happening with you ,my HSV type 2 continues to be negative despite Previously having the virus confirmed by a DNA lesion Swab,before at best I get an equivocal result but never positive,it's amazing how doctors in there cruel ignorance never take notice of these subtle yet extremely important markers.

I would focus on this finding if I was you.

believe me before I got this shit figured out I was abused and ridiculed by doctors ,it hurt me deeply and made me resent and hate anyone in a white coat despite my immense suffering I was cast away like an unwanted menace ,a once proud Photographer with a large following ,a respectful job beautiful girlfriend and a bottle full of dreams,I wiahed to have AIDS or cancer as sad as that sounds so that I could be treated with empathy and respect ,I found out what was wrong with me because I never gave up and went through literal hell and back to get to this point and I never once let the hurtful dismissals those narrow minded devils gave me to force me to lay down and accept an "existence" over a life.

Now about your raised CMV stuff this is also what I am experiencing ,no antibodies to HSV 2 for the reasons I mentioned previously yet elevated CMV and HSV 1 and EBV antibodies at 1:340 and 1:400 here is the theory the Neuro immune specialist here thinks that explains this.

Just say an average person has the common level of IGG titre for a latent virus of say 1:20 a titre of 1:380 would be a 18-19 fold increase (which many with CFS have ) now the cut off mark for auto and Normal antibodies to become clinically relevant is around 1:4 ect ,so let's say we had an autoantibody in our system that was below the clinical threshold marker at 1:1 after a triggering infection and humoral B cell dominant dysfunction this titre as with all the other titres would increase 18 fold also,which would bring it up to around 1:20 or in some 1:30 1:40 which is way past the threshold for auto antibodies to produce clinical symptoms,during times of infection and high stress these auto antibody titres could rise even more.So the auto antibodies which many people carry below positive testing thresholds were only able to produce clinical disease sue to a massive runaway up regulation of the humoral side of the immune system in short : uncontrolled antibody production and B cell dis regulation.

This theory is solid and is in fact commonly found in people with strange diseases like ours.

As for me ,I want my immune system reset and wiped out with cycophlasphamide ( I posted a John Hopkins video about this earlier in the thread) so it can re generate from scratch,this dysfunction won't fix itself without intervention and auto antibodies making us sick is just a marker sign of an underlining serious immune dysfunction.

My immune system is totally out of whack but insertingly I don't have over productions of antibodies for bacteria infections,I wonder if with you it's also this way? So it's the humoral viral side of my immune system that deals with viruses that has went AWOL.


Below I have attached a copy of my viral reports ect infectious stuff ,notice my HSV 2 is still not positive,this blood test was done after 3 plasmapheresis sessions before the PP my CMV titre was 1:340 and HSV 1 1:327 and EBV 1:352 now it's down to 1:30 which is still above most normal people's titre "despite" being after 3 PP sessions.Now I had quite high titres before my triggering infection (not this high though) so it could be a sign of a predisposition for an immune system which will easily go out of whack in future with the right trigger.Also take note of the "negative" viral DNA tests which means despite what many people on PR worry about its most likely bornthe virus causing such titres it's simply an out of whack humoral immune system which can make people very sick indeed.

It's a pity I can't tolerate Rituximab as my immune system ( most likely T cells) attack and consumes it as it is after all a foreign protein with murine elements included,I probably could have got away with suffering that kind of immune response before my immune cells for some reason moved into my brain because now any systemic reaction also causes an inflammatory reaction within my nervous systems which obviously includes the CNS and I don't need to explain just how much that could drop my baseline down.
Sad indeed...I'll have to go down the chemical route abeit carefully,I think RTX out of all immune modulators is the most safe as it leaves other elements of your system alone except B cells and it's not very toxic.

I can't know for sure whether I had a poor immune response to Ebv because I didn't get a Pcr at the time. So I can't know for sure I even had Ebv. The reason I think it's probable is that I had one positive Paul bunell (monospot) after being unwell for two months but all prior and subsequent Ebv antibody testing and Paul Bunell were negative for the next year and they tested a lot of times. Combined with having swollen glands in neck, extreme fatigue, fevers on and off, pharyngitis, anxiety. Had to take 4 months of school.


So there is a possibility the Paul Bonnel (monospot) was a false positive. Which can be caused by a range of other illnesses. But from what I've read isn't that common.

What do you make of that?

The theory on high viral titres in people with M E you've talked about seems sensible. I think I will still get PCR for Cmv and Ebv just to rule out those being a factor.

I'm not sure if I have overproduction of bacterial anti bodies. I've had a quick look through my medical notes and it looks not. But I'm going to go through more thoroughly at some point.

this illness takes away everything good in life. Good on you for persevering to find answers and treatment. Better late than never for me. Shame that Rituximab hasn't worked out. keep us updated on what your trying. Cheers
 

ash0787

Senior Member
Messages
308
" CFS diagnostic criteria is defined by unexplained "

So before he figured out what it was he did have CFS by definition and is now cured of it,
can you see why this is a really bad definition ?

If Shaun had post extertional malaise I'd accept that he had a form of CFS ( not sure if he said that or not ), if not he still had a similar sort of experience if not worse and as such I wouldn't want to try and exclude him from the community somehow.
 
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SK2018

SK
Messages
239
Location
Asia wide + UK
" CFS diagnostic criteria is defined by unexplained "

So before he figured out what it was he did have CFS by definition and is now cured of it,
can you see why this is a really bad definition ?

If Shaun had post extertional malaise I'd accept that he had a form of CFS ( not sure if he said that or not ), if not he still had a similar sort of experience if not worse and as such I wouldn't want to try and exclude him from the community somehow.

interesting comment.
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.

For the record I do get sick after doing too much but it's more like immune activation and flu ish type feelings with feeling spaced out and have swollen lymph nodes and a sore throat ect which was probably caused by chronic immune activation causing a lack of energy,so I think all this made my doc confident of the diagnosis.

I encourage anyone on PR to dig deep and find out if there is a treatable cause to be found.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
CFS diagnostic criteria is defined by unexplained "

So before he figured out what it was he did have CFS by definition and is now cured of it,
can you see why this is a really bad definition ?

Yes so it only exists as long as we don't know what it is. It can only be mysterious or psychogenic. As soon as clear evidence of cause exists you don't strictly speaking have CFS anymore. They can cure everyone of CFS simply by doing the appropriate tests, no treatment necessary ;) of course this wouldn't make us well!

However, @Shawn seems to get quite classic viral symptom PEM so he was a good fit for what is currently known as ME/CFS.

Good luck with your treatment today @Shawn!
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Luckily with a confirmed auto antibody diagnosis I should be able to get proper care via the dreaded NHS now should I return to the uk.

I wonder if all we need from another country is the testing then? Or possibly first dose of a treatment to evidence it works for us.

I find it difficult to leave the city I live in, travelling effects me badly. can't imagine getting to China for weeks of tests and treatment.
 

SK2018

SK
Messages
239
Location
Asia wide + UK
I wonder if all we need from another country is the testing then? Or possibly first dose of a treatment to evidence it works for us.
I find it difficult to leave the city I live in, travelling effects me badly. can't imagine getting to China for weeks of tests and treatment.

Thank you for the encouragement Jenny,the problem with auto immune antibody testing is that there are soooo many auto antibodies not yet discovered and thus not testable,so bare this is mind before starting.
The doctors here inTaiwan have been great they work with me as a team and talk with me not "at" me ,doctors in the UK should learn fron this attitude here in east Asia.

My heart goes out to those that get ignored ,had to hold back tears when I watched a video on You Tube of a girl called Lynn Gilderbale (excuse spelling) who was left in bed with brain malfunction and multiple organ failures due to ME and yet because of the lack of a testable marker she was left to rot and ultimately passed away.

If my striving and efforts can even help to change things a tiny amount then it's worth doing IMO.

I am going back to the UK soon ,flight prices are cheap now and I feel lonely here it's easier to suffer and recover around loved ones ,and I miss my mother a lot,I am sure I will be taken care of in London and I feel safer doing a normal course of cycophlasphamide there ,my immune system is so buggered up that it literally needs a reboot risky as it may be.Amazing how a "cold sore" virus can trigger this ,..isn't it ?seems most people here had a viral trigger also.

The viral symptoms I get esp after pushing things are caused by the fact that my immune system ie "the good part" = T cells (CD4 CD3 CD8 NK) are fighting as in hunting down and killing the bad B cells and auto antibodies ,and guess who gets caught in the crossfire ? Problem is they can't kill all of them and they don't hit the factory ie "memory" B cells that are the key to auto immune illnesses.
 
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ash0787

Senior Member
Messages
308
interesting comment.
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

But then if you look at the recent metabolomics studies they seem to show a uniform signature.

I tried to write about all this in a thread but I guess I didn't articulate it very well as it didn't become popular.

For me the PEM tends to cause temperature changes ( feeling really hot all of a sudden but not sweating ),
restlessness / anxiety ( unable to enter the parasympathetic state thing ), increased heartrate / strength,
general drop in motivation / ability to do things mentally / generate emotions, sometimes POTS especially if its a proper crash, in which case there is sometimes a stomach effect where I lose appetite completely and go into starvation mode for days, and more recently increased photosensitivity to where I start trying to darken things.

The reason I dont think I have a mistakable alternative explanation is because it originally came on within the space of about 48 hours, whereas I imagine the typical chronic disease takes monthes or years to start to develop.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
But then if you look at the recent metabolomics studies they seem to show a uniform signature.
In the Naviaux study IIRC 25% was in common between pwme and distinct from controls but 75% of the difference between pwme and controls was individual variation. This points to a general picture of a measurable condition which requires personalised treatment (not sure how the NHS will respond to that!). It also could explain how we have generally similar experience but with a lot of symptom variation between us. I suspect over time our personal specific metabolic issues may be changeable too. I feel like I've collected symptoms over time.
 

ebethc

Senior Member
Messages
1,901
Evidence of brain inflammation and activation of cns immune cells in ME via PET scan.

http://phoenixrising.me/archives/24936

selfhacked.com has a lot of info on microglia activation... LDN, lutolin, rutin all quell microglia activation... to what degree, I'm not sure b/c I've had so many issues that it's hard to parse... You might be interested in INI, too, if brain fog is a problem... http://www.healthrising.org/forums/threads/the-benefits-of-intranasal-insulin.4820/
 

SK2018

SK
Messages
239
Location
Asia wide + UK
selfhacked.com has a lot of info on microglia activation... LDN, lutolin, rutin all quell microglia activation... to what degree, I'm not sure b/c I've had so many issues that it's hard to parse... You might be interested in INI, too, if brain fog is a problem... http://www.healthrising.org/forums/threads/the-benefits-of-intranasal-insulin.4820/
If microglia are activated,they are activated for a reason either against an infective agent or rouge auto immunity,thus shutting off that response could be even more risky.
 
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SK2018

SK
Messages
239
Location
Asia wide + UK
I think this first video is esp good as it shows tests that can be performed that show true physical abnormalities for ME and once one has a physical marker it's far easier to be taken seriously.

Video 2:
What Causes ME and why it differs from CFS.
 
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sb4

Senior Member
Messages
1,659
Location
United Kingdom
Nice that it works! Please keep us posted on progress!

Myself, I am fearing side effects, so I think of trying water fasting = "rituximab naturally": during 3 days of water fasting, the body starts using up immune cells as fuel. When food arrives again, it reproduces them. This is just what rituximab does: it destroys immune cells, thus forcing the body to produce new ones. Research on water fasting renewing immune cells: easy read version and real science version
  • The advantage with fasting is: side effects = being hungry :). Cost = you save money :) And one more thing: the research says it preferentially consumes damaged immune cells.
  • Disadvantage: underweight people need to take care. For me this was a problem for quite a while, it was a very long way ... Then, not so long ago, I found out. Anyone interested, feel free to ask for details (the biggest effect was from B5. Now I am able to eat 3000 kcal per day w/o effort, so I can afford an occasional 3 days fast)
I am a fanatic of harmless treatments one can do at home :) (or an unfortunate sick person usually failing all medical treatments because of side effects... :( ). I did a collection of harmless things against autoimmunity on this thread. If anyone interested, feel free to ask me: for all these things I can provide some research to support effect against some types of autoimmunity :
waterfasting of at least 3 days, autoimmune paleo; magnesium or vitamin D or B2 in doses much higher than rdv, molybdenum, resistant starch, butyrate, LDN, etc.


:thumbsup::thumbsup:
I did a water fast for 30 days, and dry for 7 of those. My symptoms of dysautonomia definitely reduced however came right back when eating in full force. Not sure if mechanism was immune or just not having to deal with postprandial symptoms...
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
did a water fast for 30 days, and dry for 7 of those. My symptoms of dysautonomia definitely reduced however came right back when eating in full force. Not sure if mechanism was immune or just not having to deal with postprandial symptoms...

@sb4 I am impressed you managed a 30 days fast!

I just completed a water fast of 3 days. During those days, I felt just great and was more productive than ever. And ability to stand after a meal (my POTS affects me mostly postprandially) improved somewhat and stayed improved in the few days since. The effect is I think too fast to be from any immunological cause such as using up damaged immune cells or such, because then the antibodies would stay for a while, I guess. I rather think that the effect would likely stem from increased cortisol & noradrenaline during fast. And, stupidly, I caught a huge flu, so this keeps my adrenals working since. If there is any real treatment effect? Measurements of antibodies will show. If there is benefit I would anticipate it to be moderate and repeated fast (in more skilled ways!! :) ) needed for noticeable benefit.

@sb4 did you do anything during the fast to stay healthy? for example, taking vitamins? Any other suggestions? I havent educated me in any way about fasting, did it now the first time in my life... all info more than welcome!
 
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frederic83

Senior Member
Messages
296
Location
France
I experimented with fasting 7 years ago, and I felt so well after the first fast, my belly was so flat ! It lasted one month, then I slowly came back at the starting point. The following fasts did not work so well. Now, 7 years later, I have to constantly eat small meals to feel better, every 2 hours.
 

sb4

Senior Member
Messages
1,659
Location
United Kingdom
@Lolinda I was kinda stupid in doing the dry fast, got my body seriously malfunctioning day 7. I did not take anything during the 30 days except small amounts of water however I was persuaded to go to hospital where I was treated for dehydration so I definitely did something wrong...

I attribute the wellness I felt to my body not having to deal with the stress of postprandial symptoms however your norepinephrine theory is interesting.

The good feeling leaves after around 4-5 days and the rest, atleast for me, was torture. Constantly felt ill, weak, scared, time crawled by, mouth and breathe rank, retracing, no sleep, etc.

I was hoping for my tongue to clear and detox to be complete but it never happened.

Interestingly my stomach was flat for the first time since I got ill, however when I would drink my 1 cup of water/day my stomach would bulge, I felt the familiar heavy fullness, heart would begin pounding,etc. This misled me for years into thinking my problems where gastrointestinal and not autonomic.

I did a series of small fasts afterward but unfortunately don't think it did me much good...
 

ryan31337

Senior Member
Messages
664
Location
South East, England
I'm sounding a bit like a broken record with this, I appreciate it won't fit everyone but if you guys who benefit from fasting haven't already tried a keto diet trial for reactive hypoglycemia you should.

I spent a year assuming post-prandial issues were 'just' blood distribution issues due to POTS and that there wasn't much you could do. Unbeknown to me the problem was far more about not maintaining stable blood glucose, so a keto diet on the recommendation of a POTS literate Endo has made a huge difference. Haven't seen it mentioned often on here and I never saw it in the literature, but the specialists were luckily aware...
 
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