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

[King Elliott]

I have also had quite bad DR for the past 8 years of my illness. I often feel like I am living in an alternate universe to the one around me. Its truly awful. Mine was sevrerely worsened by taking an SSRI 8 years ago that caused extreme anxiety for a couple of years and severe akasthesia which I got no help for. Im amazed I am still alive quite frankly;.

I have been found to have Cpn, but haven't been tested for antibodies apart from Lupus ones as I had a mildly elevated ANA titre (speckled).The NHS are not interested in all this at all, and as I say refused me a neuro appt.

If you're interested in getting tested for neuroautoantibodies, I know a few private doctors who'll refer you for the testing on the NHS. I'll PM you if you like.

You need to have obvious neuropsychiatric symptoms that would suggest a potential role for GABA or glutamate but you have that so it shouldn't be a problem!

 

[Lolinda]

RITUXIMAB
I am now slowly and stably improving how long this trend will last i will know soon and report it here.

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.

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

 

[King Elliott]

I feel you brother ,DP and DR are horrible ,if only I knew early this was the first sign of a Neuro immune illness I could have got treatment early before the "cascade" and recovered almost back to normal now ,always the earlier the better.

my DP and DR was also highly disturbing I could be sitting in front of a friend chatting but felt like I was observing everything in a movie or tv series ,I just felt disconnected and things looked and felt distant although I knew I was clearly in reality. EBV is known to infect B cells they could have transported some of the EBV into the brain under stealth. But TBH these symptom sound a lot like anti NMDA so please do let me know your results and I would figure this out fast as believe me talking from experience if you leave it going on to long and are unlucky enough to have a T cell inflammatory response against whatever is causing your symptoms in the brain it can be the most horrible experience ever and damaging.Thats what happened to me I left my DR and autonomic dysfunction syndrome too long and had a T cell response in the CNS that's what I mean when I refer to the "cascade" so don't make my mistake and act fast and go full on to solve this which it seems your doing anyway.

Thanks mate. Yeah, I had the blood test done just this week so I should have the results back soon. I wouldn't say I'm hoping for a positive result but it would immediately explain almost everything. At least then I would have a concrete pathogenesis to work with. I've wasted most of the past 2 years going through the usual psychological/psychiatric charade until even the most staunch supporters of CBT for DPD/CFS were forced to admit that my problems seem neuropsychiatric in nature. I don't have any psychological triggers for my DP/DR. 95% of the time it changes overnight and only ever for the worse. It's been clear to me all along that something physiological is going on. Shame it took so long for the professionals to catch up.

Yeah, I've been looking at EBV-infected B-cell distribution. It seems to be found in CSF in ~10% of infections. I have no doubt EBV infection within the CNS could cause psychiatric symptoms through encephalitis but it doesn't seem to be very well studied. It's certainly a messier answer. Regardless of autoantibodies though, my blood results combined with my own testing suggests that I have an ongoing infection and systemic inflammation. Like most of us, I've got several thing to tackle at once.

Helpful posts btw. Thanks.

 

[justy]

If you're interested in getting tested for neuroautoantibodies, I know a few private doctors who'll refer you for the testing on the NHS. I'll PM you if you like.

You need to have obvious neuropsychiatric symptoms that would suggest a potential role for GABA or glutamate but you have that so it shouldn't be a problem!

Yes please do PM me the names - thanks.

 

[digital dog]

Thank you for this information.
Just a quick question: When you first got ill in October did you take any drugs or antibiotics?

 

[SK2018]

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.

www.ncbi.nlm.nih.gov/m/pubmed/23136242/ study of the short and long term safety of Rituximab usage.

 

[Jill]

Hi @Shawn

Thank you so much for writing of your experience. I find this fascinating that youve manahed to get help.
Can I confirm : . You saw a dr in China (neuro immunologist) and he gave you a treatment plan, which you have been able to take to taiwan to get implemented?
Not being able to speak english is my problem. You say the chinese dr speaks english well. Is he happy to see non residents? Are they happy to treat non residents?
You have gone to Taiwan to be treated . Similarly - are they happy to treat non residents?.
This sounds like an option for people. Does it take long to see the dr in China?
Once again , thanks so much - I was thinking they must be v advanced and have wondered for ages if we could get help there.

 

[SK2018]

Hi @Shawn

Thank you so much for writing of your experience. I find this fascinating that youve manahed to get help.
Can I confirm : . You saw a dr in China (neuro immunologist) and he gave you a treatment plan, which you have been able to take to taiwan to get implemented?
Not being able to speak english is my problem. You say the chinese dr speaks english well. Is he happy to see non residents? Are they happy to treat non residents?
You have gone to Taiwan to be treated . Similarly - are they happy to treat non residents?.
This sounds like an option for people. Does it take long to see the dr in China?
Once again , thanks so much - I was thinking they must be v advanced and have wondered for ages if we could get help there.

I would imagine he would be happy to treat non residents as they don't check expats residence status before treatment or consultations.

In Taiwan they def are happy to treat non residents.

It took me roughly 2 weeks to get an appointment initially.

 

[msf]

I actually think it´s good that @Aurator posted in Chinese, since now when Chinese people google (or baidu) ME in Chinese, this website should come up. They can then use Google translate to find out more if they are curious. It´s awful to think that the English-speaking ME community is actually probably the best informed ME community.

Aurator, I also thought it was interesting how you used much simpler language when you asked in Chinese. Either you were taking pity on us laowai (foreigners), or you are actually more fluent in English than Chinese - I will assume it was the former.

Oh, and sorry I didn´t reply earlier, @SuzieSam, I haven´t been on here for a while. KDM has to be the doctor who is mentioned the most on this website, so if you just google his name plus treatment or whatever term, you will find a far more diverse range of opinions than just mine.

 

[Aurator]

I also thought it was interesting how you used much simpler language when you asked in Chinese. Either you were taking pity on us laowai (foreigners), or you are actually more fluent in English than Chinese - I will assume it was the former.

Thanks for being generous!

I'm a native English speaker, so I'm predictably more fluent in English than Chinese. If simplicity was evident in my phrasing, that's partly because simplicity is my level, and partly because I've learned over the years that less tends to get lost in translation when you don't aim too high. There's also the matter of Chinese syntax being more paratactic than hypotactic, but at my level that point is somewhat academic.

since now when Chinese people google (or baidu) ME in Chinese, this website should come up. They can then use Google translate to find out more if they are curious.

I must admit that I do want to attract more Chinese users to PR. The language barrier, though, and China's Internet firewalls are two things that militate against greater participation from Chinese users. Perhaps even more significant is that of the millions of sufferers of ME there are likely to be in China, many of them have probably never received a diagnosis.

In fact I'm not sure whether more than the occasional person with access to the best possible medical care ever does get a diagnosis of ME/CFS in mainland China unless it is a diagnosis the patient has given themselves after searching online. As awful as it is to contemplate, whilst having ME in the west is already bad enough because of the way patients are ignored and neglected, having ME in mainland China probably takes "suffering in silence" to completely new levels.

There are potentially millions more voices that could be added to ours. The more voices can unite with ours the more loudly our message will be heard around the world and the harder it will be to ignore.

 

[SK2018]

Thought I would post an update after doing Rituximab.
Sadly I was unable to finish the full Rituximab course and had to stop at 200mg due to a profound immune reaction in the cns ,body wide rash and other undesirable effects,thus I am not able to properly evaluate its use ,the reaction however was not as severe as IVIG before I seem to not be able to tolerate antibody treatments due to having a hypersensitive immune system.

After 200mg Within a week I saw a 25% improvement in fatigue ,brain fog and PEM along with general feeling of wellness similar to the improvement I got with plasmapheresis but I assume more long lasting.

The Neuro here seems to think there is space for ME /CFS patients to have significant gains in their recovery status however she says full recovery is very rare indeed and most people get to a stable 70% of their formal self at best.When I asked her as to why this is so ,she stated past treatment experiences and the fact that many with ME CFS have a certain amount of longer term nervous system dysfunctiona that create a limit on how high the baseline can be taken,that doesn't mean there is nothing to be gained for people that are very ill getting to a "stable" 70% would be a significant gain indeed.

I will have to resort to doing a full plasmapheresis course\ once per 2 months with intermittent Steroid use.
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.

If your a person who is prone to having a hyper active immune response and sensitivity to substances chemicals ect and or Neuro immune cascades tread carefully with antibody treatments if you must try, start very low and slow.

 

[wastwater]

Another news story on anti NMDA http://www.kentonline.co.uk/canterbury/news/im-so-lucky-the-belt-30690/

 

[SK2018]

Another news story on anti NMDA http://www.kentonline.co.uk/canterbury/news/im-so-lucky-the-belt-30690/

Amazing story ,he has a more acute abrupt from than me but still a lot of similar symptoms except I didn't get mood problems or suicidal thoughts

 

[Tofer]

Hello Shawn! My wife has CFS, she's just finished two IVIGs 50 ml of 5% Octagam. The first one she’s born more or less not bad. She got about 10% worse as I could see after it. We thought it was ok. But the second one has become really terrible. She had some bad reactions during the infusion and the doctor made an antihistamines infusion with an injection of Hydrocortisone. He decided to continue the infusion. The next day she felt just terrible. The antihistamines affected her nervous system and dehydrated her so much that the skin got dried and started to crack on her hands. Now she feels completely exhausted that she hardly can speak. It’s like 50% worse than before.

The doctor is useless. Before he told we have to trust him though we asked him a lot of questions about IVIG and were not sure about making this step, especially after reading your story. He told he is the only person in Russia who can help us, what seemed to us were actually true. He is the only doctor who at least we thought knows about CFS and tries to treat EBV, HHV-6 and 7. And we decided to rely on him. But now he is just saying usually things like that never happens with his patients and she needs to go to a psychiatrist.

So frustrating. I know you had kind of the same experience. What do you recommend to do? How long did it take for you to come through the consequences of this therapy and at least return to the condition you had before the IVIG. Do you know how long immunoglobulin lives inside the body? Sorry and which place in China did you do a Rituximab treatment?

 

[SK2018]

Y

Hello Shawn! My wife has CFS, she's just finished two IVIGs 50 ml of 5% Octagam. The first one she’s born more or less not bad. She got about 10% worse as I could see after it. We thought it was ok. But the second one has become really terrible. She had some bad reactions during the infusion and the doctor made an antihistamines infusion with an injection of Hydrocortisone. He decided to continue the infusion. The next day she felt just terrible. The antihistamines affected her nervous system and dehydrated her so much that the skin got dried and started to crack on her hands. Now she feels completely exhausted that she hardly can speak. It’s like 50% worse than before. The doctor is useless. Before he told we have to trust him though we asked him a lot of questions about IVIG and were not sure about making this step, especially after reading your story. He told he is the only person in Russia who can help us, what seemed to us were actually true. He is the only doctor who at least we thought knows about CFS and tries to treat EBV, HHV-6 and 7. And we decided to rely on him. But now he is just saying usually things like that never happens with his patients and she needs to go to a psychiatrist. So frustrating. I know you had kind of the same experience. What do you recommend to do? How long did it take for you to come through the consequences of this therapy and at least return to the condition you had before the IVIG. Do you know how long immunoglobulin lives inside the body? Sorry and which place in China did you do a Rituximab treatment?

Yes the tw*t of a doctor that gave me IVIG also said I was imagining it ,IVIG was literally the biggest mistake I made since getting ill in the first place it caused me a major relapse and frankly I have not been the same since.In general IVIG lives 3-4 months I suggest you get plasmapheresis ASAP to wash it out or it will keep causing immune mediated damage,5 sessions of PP will be enough to get rid of nearly all of it.

If your wife had such reaction to IVIG it means she has a hyper reactive Neuro immune system like I do ,which means not only does it set her body off but nervous system too,in that case Rituximab could be risky too as they are
Both "exogenous antibody treatments" that can stimulate strong reactions ,in facet a few people have died after RTX treatments although that is indeed rare.For me I had a mid sized dose and had to stop as I felt a Neuro immune cascade come on.

I suggest your wife takes a decent dose or Cortico steroids at least (100-200mg) to calm the system down and get some plasmapheresis If you want to stop her decline,it worked for me after the IVIG before and MAB reaction this time,better to be safe than sorry.

I am upset that I can't take RTX as it is the one drug that can shut the root cause of my illness down ie "memory B cells" problem is I have reactive protective T cell infiltration on my brain (CD 4 ,CD3 ,CD8) that are primed at killing anti NMDA antibodies and any other antibodies that don't belong,before I got the influx of T cells I could have took a big steroid dose took RTX had a flu for a week and shut down my disease ,sadly after the T cells decided to try and do the same things as RTX but in a far more violent damaging less efficient prolonged manner things are no longer so simple,I missed the window of opportunity.

It hurts when doctors dismiss her reaction ,can you get PP where you live?


On a final note i did not get back to being as good as I was before the IVIG it was a mistake and left residuals.

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
4prednisone

5: LDA (immune balancing)

I hope this helps and don't let that doc insult your wife again,poor woman she was suffering enough.In reply to your question about RTX location it was in Taiwan near Taipei.

 

[Tofer]

Shawn thank you a lot for your answer.

We live in Moscow and I think we can get PP here. I will talk to my wife about it.
Interesting thing that after I'd read about new experiments from Ron Davis I thought the same thing you've described in the first post. Viruses may have some proteins in their structure similar to the mitochondria's or any other cells' inside CFS/ME patients' bodies. So IS may start attacking own cells. For example HHV-6 and HHV-7 have D46 protein that lets them enter human's cell, cause cells take this protein as a something useful. It's just thoughts and I didn't find any researches about this theory(

Two last questions. Which NMDA test did you do? Was it quantitive or qualitative ones?

Did you try fasting for 3 days?

 

[Lolinda]

Hi @Shawn

thanks so much for helping all of us with your experiences! Could you PM me with the addresses of your Taiwan and Shanghai doctors? I would be interested in those doctors or clinics who did the antibody tests for you. My idea is to send them blood samples via Fedex overnight and pay them upfront. More questions:

• Apart from NMDAr AB, which other AB did you get tested for? You mentioned a damn cheap price of 100 Pounds...
• How much is their turnaround time?
• Is there any website or pdf with their neuronal AB test list?

Thanks!!

 

[Lolinda]

if anyone interested, I have found a partial cure for sthg resembling NMDAr AB: in 2014, I switched to a very low carb paleo diet. This resolved ME in 2 weeks, and also solved the following NMDAr AB-like illness. NMDAr AB symptoms that I had and that resolved (citing from this wikipedia article) are:

• "prodromal symptoms, including headaches, flu-like illness, or symptoms similar to an upper respiratory tract infection"
  
• "agitation, ... violent behaviours". Adding to these, I also had a panic attack
• "impaired cognition, memory deficits, and speech problems". The memory deficits I still have, but they improved meanwhile somewhat upon transdermal choline.
  
• "hypoventillation" (resolved, too. still have diminished breathing force, but thats probably another thing).
• As several people on this thread mentioned DR/DP: over many months on the keto-paleo diet, DR and DP improved slowly, resolved by now. But I did also many other things for these.

Still, I am very interested in any neuronal antibody tests, because in a way the problems are still there: I can quite fast reactivate all old problems if I eat carbs or if I kill intestinal microbes (->LPS). So my logic is that the antibodies may be still high, but they do not affect my brain because I managed to cure a possible BBB (blood brain barrier) leak. The interesting thing is that NMDA r AB can be produced in the body and go from the body to the brain via a leaky blood-brain barrier

Why did it work?

• A possible mechanism for this could be that very low carb diets decrease the amounts of bacteria in the small intestine. Their food is carbs. I eat meat, olive oil, butter and coconut oil, and salads -> they have not much left to eat. -> less LPS exposure -> less BBB dysfunction -> less antibodies reach the brain. In fact, my elevated neuronal inflammatory markers, kynurenine and quinolinic acid both normalised.
• Generally, another mechanism is that this diet is ketogenic. There is a host of research how ketosis improves neuronal metabolism, in particular the mitochondria. Though, I do not see how this should help with NMDAr or any other antibodies.

 

[Lolinda]

Hi Justy
My daughter was tested for NMDA Antibodies at Oxford via Dr Bansal. She was negative for them.
....
positive for antibodies to the pyruvate kinase receptors in the Basal Ganglia.

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.)

 

[SK2018]

Shawn thank you a lot for your answer.

We live in Moscow and I think we can get PP here. I will talk to my wife about it.
Interesting thing that after I'd read about new experiments from Ron Davis I thought the same thing you've described in the first post. Viruses may have some proteins in their structure similar to the mitochondria's or any other cells' inside CFS/ME patients' bodies. So IS may start attacking own cells. For example HHV-6 and HHV-7 have D46 protein that lets them enter human's cell, cause cells take this protein as a something useful. It's just thoughts and I didn't find any researches about this theory(

Two last questions. Which NMDA test did you do? Was it quantitive or qualitative ones?

Did you try fasting for 3 days?

Yes this is called "molecular mimicry" ,I get fed up watching videos on you tube ect and websites claiming to cure auto immune diseases with organic diets ect ,now don't get me wrong,..such diets can do wonders for general health and well being but when your immune system has recognized a self protein as being an enemy because it simply looks very similar to something on a virus and starts doing what it thinks to be the right thing and pumps out antibodies relentlessly,such methods won't work for this problem ,heck you could eat an organic farm per day and it won't shut it down,thus it's a form of quackery if they claim it will.

Leaky gut can also cause molecular mimicry when food antigens start leaking into the blood stream but if its triggered by a latent or hit and run type virus such as HHV6 ect well....lets just say that's a job for some good drugs and treatments.

Oh wait ..we have "talk therapy" for ME don't we?ok great let's talk to the B cells and maybe if we ask them nicely they will stop producing cross reactive antibodies to herpes viruses ..great solved !

On a serious note I think plasmapheresis is the safest reaction free way for your wife to get temporary improvement,I would advise avoiding the local anastetic though and just grin and bare the 6 seconds of pain as the tube is inserted and 2 stitches are placed as the numbing medicine can give reactions.
The machine used should be a double line "membrane" pheresis machine to remove IGG and proteins.

my anti NMDA test was in CFS via LP and also serum via staining on HEK cells.

I have not tried fasting but was thinking about it,has your wife tried this ?.. for me i worry about weakening my protective good part of my system also ,it's like a civil war.