Late Onset Autism and Anti-NMDA Receptor Encephalitis Part 2
By Teresa Conrick
In Part 1 of our examination of Anti-NMDA Receptor Encephalitis, I presented a late-onset case of autism. Similar cases have been shown to be caused by antibodies against NR1–NR2 heteromers of the NMDA receptor. There was really very little about the precipitating event that explained why the 9 year-old boy became a victim of such an extreme medical and behavioral illness. Because of its acute psychiatric manifestation, Anti-NMDA Receptor Encephalitis is often misdiagnosed as a psychiatric issue rather than a neurological-medical disease. Its apparent increase in cases has been debated as -- a true increase or just better diagnosing? I have to say it -- we, in the autism community, really dislike that phrase as it has become a mantra of ignorance in the face of truth.
Some further investigating brought me to another case of Anti-NMDA Receptor Encephalitis that presents with some more tangible facts. Here is the Pubmed excerpt:
J.Neurol 2011 Mar;258(3):500-1. Epub 2010 Sep 30. Anti-NMDA receptor encephalitis after TdaP-IPV booster vaccination: cause or coincidence? Hofmann C, Baur MO, Schroten H.
And that's it. There was no abstract but after some searching, I did find a link:
Anti-NMDA receptor encephalitis after TdaP–IPV booster vaccination .
LETTER TO THE EDITORS
Anti-NMDA receptor encephalitis after TdaP–IPV booster vaccination: cause or coincidence?
Caroline Hofmann • Marc-Oliver Baur • Horst Schroten
Received: 5 September 2010 / Accepted: 13 September 2010 / Published online: 30 September 2010
Springer-Verlag 2010
Dear Sirs,
Anti-NMDA receptor encephalitis is a recently described autoimmune disorder mediated by antibodies to the NR1 subunit of the N-methyl-D-aspartate receptor. It was first
recognized as a paraneoplastic syndrome in young women with ovarian teratoma [1]. Further studies have shown that about 40% of the patients with anti-NMDA receptor
encephalitis do not have a clinically detectable tumor, and men and children are also affected [2]. The mechanisms triggering the disorder, especially in patients without an
associated neoplasm are unknown. The high incidence of prodromal viral-like symptoms suggests a possible infection triggering the autoimmune response [3]. We report about a 15-year-old female patient who was diagnosed with anti-NMDA receptor encephalitis after receiving a booster vaccination against tetanus/diphtheria/pertussis and polio (TdaP-IPV). Within the first 24 h after the injection she developed a low-grade fever and general fatigue. During the following weeks, her family observed an unusual need for sleep. Psychiatric symptoms became apparent 5 weeks after the immunization and included disorganized thinking and hallucinations. Within a few days she became increasingly agitated with orofacial dyskinesia, opistotonic posturing, and choreic movements of the upper extremity. She grew unresponsive to verbal commands and required intensive care treatment due to autonomic instability. The unique pattern of clinical symptoms led to the consideration of anti-NMDA receptor encephalitis, which was confirmed by the detection of anti-NMDAR antibodies in plasma and cerebrospinal fluid. Other possible causes of encephalopathy including intoxication,infectious and metabolic diseases were ruled out; repetitive brain scans showed no abnormalities. After confirming the diagnosis, an extensive tumor search was performed without any proof of malignancy; biopsy of a prominent ovarian cyst revealed no teratoma. The onset of prodromal symptoms shortly after the immunization is intriguing and suggests the vaccination as a possible trigger of anti-NMDA receptor encephalitis. Neurological adverse events including autoimmune disorders have been discussed in literature for many years; a definite causal association between vaccination and disease was seldom established. For example, the 1976 swine influenza vaccine was associated with an increased frequency of Guillain-Barre Syndrome (GBS) [4]. A recent study about the safety of TdaP vaccination in adolescents revealed no increased risk of neurological adverse events [5], even though rare cases of GBS have been reported. To our knowledge, this is the first possible case of vaccination associated anti-NMDA receptor encephalitis. Therefore, not only infectious agents and tumor antigens but also vaccines should be considered as a possible trigger of immune response in this recently described disorder.
Conflict of interest None.
References
1. Dalmau J, Gleichmann AJ et al (2008) Anti-NMDA-receptor encephalitis: case series and analysis of the effect of antibodies. Lancet Neurol 7(12):1091–1098 C. Hofmann (&)
University Children’s Hospital Heidelberg, Heidelberg, Germany e-mail: [email protected] M.-O. Baur H. Schroten Department of Pediatrics, University Hospital Mannheim, Mannheim, Germany 123 J Neurol (2011) 258:500–501 DOI 10.1007/s00415-010-5757-3
2. Vincent A, Bien CG (2008) Anti-NMDA-receptor encephalitis: a cause of psychiatric, seizure, and movement disorders in young adults. Lancet Neurol 7(12):1074–1075
3. Florance NR, Davis RL et al (2009) Anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis in children and adolescents. Ann Neurol 66(1):11–18
4. Toplak N, Avcin T (2009) Influenza and autoimmunity. Contemporary challenges
Cause or Coincidence? Again, for many of us who have seen an increase in not only autism, but corresponding autoimmune disorders, it is not a difficult question to answer but it is a hot topic for researchers to present, so I applaud these researchers for putting the facts out there, including vaccines as a source of causation. They do mention that Anti-NMDA Receptor Encephalitis is "recently described." Another sign of it's new and increasing occurrence - "Anti-NMDAR encephalitis are associated with tumours (commonly teratomas) in about 60% cases 3. Recent studies have however shown that this disorder can occur even in the absence of teratomas and is increasingly recognized in adolescents and children 4." http://icnapedia.org/content/wiki/index.php/Anti_NMDAR_encephalitis
And here: "Anti-NMDAR encephalitis is increasingly recognized in children, comprising 40% of all cases. Younger patients are less likely to have tumors. Behavioral and speech problems, seizures, and abnormal movements are common early symptoms." http://www.ncbi.nlm.nih.gov/pmc/arti...5/?tool=pubmed
"Behavioral and speech problems, seizures, and abnormal movements", sounds much like the world most of us live in with our children who have an autism diagnosis. There are also others. In looking for more answers, I saw that these cases of vaccine injury also resulted in Anti-NMDA Receptor Encephalitis - for example:
Cevarix vaccine and anti--NMDA Receptor Encephalitis
Gardasil vaccination and Anti-NMDA Receptor Encephalitis
I was able to correspond with the mother of a teen girl injured by Cervarix, who now has a diagnosis of Anti-NMDA-Receptor Encephalitis. This family has been through hell trying to get proper care after finally getting the correct diagnosis. I big thank you to them for allowing me to share the horrors of their daughter's descent into Anti-NMDA-Receptor Encephalitis. This is a short synopsis of their initial 3 month nightmare, post-vaccine:
"..her first HPV vaccination on 15/11/08 .....After approximately one week --- become very emotional. After the third injection on 16/05/09 ,,,,,was very agitated all night...the next day .. she said that she hadn’t had any sleep and felt exhausted. When I arrived home --- was sobbing her heart out saying that this headache was driving her mad...she was having a full blown seizure and at one point she stopped breathing. The paramedics had put an oxygen mask on and took her downstairs to the ambulance. The paramedics took us to the Hospital --- started to have what I described as vacant episodes, I was soon to learn that these were partial seizures. At approximately 5.30am --- had a seizure and wet herself. She had a high temperature , a cannular was fitted and iv anti viral drugs were started. --- had gone missing off the ward twice during the night ... I had a voicemail message at 4am asking us if we could get back to the hospital because they couldn’t control her ...temperature was still high. Partial seizures were still continuing .... She then asked for a knife because she wanted to kill everyone...remained very agitated and very disorientated ...
had a panic attack on the way back to the hospital. For the rest of the week --- was up and down. She had become obsessed with the man in the next room and kept trying to get into his room. She said that he was always talking about her and telling her to do things. She started pulling her hair out... --- attacked me. The nurses pulled her off me...security had been called because --- was very aggressive... increased her medication. Tuesday 28th July: one of the blood results had come back and it was showing that something was still attacking her, something to do with the autoimmune system. ... this took 6 weeks to come back. Dr XXX came to see us at 2.30pm. He thinks that there is a link to the injection. The aggression that --- had was what the encephalitis left her with but Dr XXX was adamant that it was a psychiatric problem despite Dr XXX telling him that it wasn’t. We have spent the last six weeks fighting for the correct treatment. Her EEG’s were showing signs of activity in her brain but all the other tests came back negative except the one which showed that she had got anti- NMDA receptor encephalitis. Dr. XXX is convinced that the vaccine had something to do with --- becoming ill. Dr XXX also believes that there is a link to ---'s illness from the vaccines. "
Difficult to read as the amount of suffering is just so painful. What this shows is that Anti-NMDA-Receptor Encephalitis is not only an autoimmune disease associated with females and cancer, but an increasingly diagnosed autoimmune disease in males and females, children and adults. Vaccines are now being seen as a potential fuse to the explosion of symptoms. Does the apparent increase in diagnoses of Anti-NMDA-Receptor Encephalitis have anything to do with increases in the vaccine schedule or marketing of them? How many cases are being misdiagnosed and victims not getting the proper medical treatment? Is there a government agency investigating this?
Some compelling facts:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1936221/
1.Most autoimmune encephalitides cause psychiatric symptoms and CSF inflammatory abnormalities.
2.Antibodies to NR2 subunits of the NMDAR have been reported in several other disorders...The major antigen is NR1/NR2B, which is predominantly expressed in the hippocampus and forebrain.
http://www.nature.com/mp/journal/v9/n9/full/4001529a.html
3.NR1 and NR2b glutamate receptor immunoreactivity patterns are abnormal in the hippocampi of thimerosal treated SJL mice
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2009.03542.x/full
4.Preceding infectious illness -often: Sore throat then "strange behaviour", Cognitive deterioration, mutism
5.Brain imaging was normal and EEG showed a diffuse and generalized slowing.... evidence of an inflammatory process was often documented
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1936221/
6.Seizures - Partial complex or generalized seizures
7.Autonomic instability - Hyperthermia (sometimes alternating with hypothermia), hypoventilation, fluctuations of blood pressure, tachycardia, bradycardia, constipation, ileus
http://www.mendeley.com/research/growing-recognition-immunotherapyresponsive-seizure-disorders-autoantibodies-specific-neuronal-proteins-5/
8.The concept of epilepsy and seizure disorders caused by autoantibodies to specific neuronal membrane proteins has developed significantly during the past few years.
9.There are a growing number of specific antibodies associated with new onset epilepsy. These patients are likely to have an immune-mediated disorder that may benefit from immunotherapies. Many of these patients do not show a good response to conventional antiepileptic drugs.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2607118/
10.In anti-NMDA-receptor encephalitis the high prevalence of prodromal viral-like symptoms is intriguing. Direct viral pathogenesis is unlikely because extensive studies of CSF samples, brain biopsies, and autopsies were negative for viruses (data not shown). Whether the prodromal symptoms form part of an early immune activation, or result from a non-specific infection that facilitates crossing of the blood–brain barrier by the immune response is unknown.
There are some potent similarities with autism and I hope these researchers involved will continue to explore all roads that can lead to Anti-NMDA-Receptor Encephalitis, including vaccines. Thirty years ago, some were looking at regression into autism as medical. We need that now more than ever:
Arch. Neurology 1981 Mar;38(3):191-4.
Acquired reversible autistic syndrome in acute encephalopathic illness in children.
Delong GR, Bean SC, Brown FR 3rd.
Abstract
In seeking the neurologic substrate of the autistic syndrome of childhood, previous studies have implicated the medial temporal lobe or the ring of mesolimbic cortex located in the mesial frontal and temporal lobes. During an acute encephalopathic illness, a clinical picture developed in three children that was consistent with infantile autism. This development was reversible................
Teresa Conrick is Contributing Editor to Age of Autism.
http://www.sciencedaily.com/releases/2010/08/100819141913.htm
This article does not specifically speak of the NMDA, but shows synapse regrowth.
Hope this helps. Might be able to link a few more things that are out there.
Jackie
Our poor kids.
Posted by: Jackie | June 04, 2012 at 06:18 PM
Hi...I hope you receive this. Please look into IV ketamine. It has been tested for treatment in severe depression and works on the NMDA receptors. Mice studies have shown regrowth of synapses. I will try to find a link for you.
Jackie Murphy
Posted by: Jackie | June 04, 2012 at 06:13 PM
Teresa:
High CPKs in my family is a chronic condition, as is off and on and mostly on SED rates. I often wonder how doctors claim that there is nothing different in the blood of kids with autism. So, maybe this anti- nmda has a less dangerous life threatening phase,-- a more chronic phase.
And I wonder if there a relationship between Kawasakis and antiNADMA?
But thankyou I will get those hormone levels checked out. They may have when she first started all this stuff, many years ago. I never did try to get copies of her medical records. Perhaps I need to do that.
Posted by: Benedetta | July 30, 2011 at 08:55 AM
Hi Benedetta,
Maybe starting with blood hormone levels will help. Increased estrogen/estradiol would be seen if there were ovarian tumors.
Also- high CPK and psychosis/seizures are part of anti- nmda
http://www.nature.com/nrneurol/journal/v3/n5/full/ncpneuro0493.html
"elevated creatine kinase (CK), seizure"
Unfortunately, another worry, for Meg too, is lupus:
http://www.jrheum.com/subscribers/08/12/2451.html
increased levels of creatine kinase, seizures, psychosis,Erythrocyte sedimentation rate was 120 mm/h (normal 0–20);
Posted by: Teresa Conrick | July 29, 2011 at 05:40 PM
Impressie work Teresa :)
Posted by: Lisa @ TACA | July 29, 2011 at 04:48 PM
Hi Tereasa;
Tanya has had plenty of blood test- plenty, but actually hormone tests I don't think so. her blood test usually come back with high Sed rates, high CPKs (muscle breakdown proteins), anemic, low L-carnitine levels.
The hormone shot was Depovera- given many years ago - never- never- never would I allow that again. But I understand why some parents feel trapped between the shot or a pill everyday or removal of the female organs or watching their girls every minute. The horror of it all!
Tanya also when through a lot of different hormone pills most that would not stop her bleeding or almost would but not quite.
She is now on Kariva and it is about the "only one" that will stop her bleeding completely. She has been very pleased with it, and has been on it for at least 10 years, with only minor changes like different strengths, from different brand names or generic brand. Apparently different brand names makes a big differnce.
Changes in pupils is not a good sign, have you found any medical person that is the slightest interest in this? (I so hope)
Posted by: Benedetta | July 29, 2011 at 03:43 PM
Hi Heidi.
From my reading, it is blood and CSF. It seems to be a much different and bigger issue than the usual types of blood draws we have ever gone for. If I find out more, I will post. I just wonder if this would have been done as children regressed and began to lose speech, lose eye contact and change dramatically, if there were actual markers showing us ......
Posted by: Teresa Conrick | July 29, 2011 at 03:28 PM
Hi Benedetta,
Meg seems to have movement and tic (vocal/motor)with her monthly behaviors prior to the seizure. The vocal tic is extreme. There is also an extreme agitation that is completely not her. Her eyes do dilate and they seem uneven. She has trouble moving her eyes upward. There is also an issue with urination. Many accidents. Limited eating but so, so thirsty. She has a history of STREP and PANDAS.
Can you name the pill she is on as I am doing some research on different options? Do you like it or do you feel it is causing issues? Have you ever checked her blood hormone levels?
Posted by: Teresa Conrick | July 29, 2011 at 03:03 PM
Tereasa,
I would email you but I figure everyone here has a stake in what all issues.
I will keep your email in mind and you can feel free to email me too.
Yes, she had hormonal issues.
Her fourth year after starting her cycle she would not stop bleeding. First four years fine and then whamoooo. Along with it came that deep depression - although I did seem to notice anger issues, and personality stuff before all this.
She had a doctor give her a hormone shot to make her stop all for six months and I figure that brought on the real anger, since I also noticed that the Downs syndrome girls I had in my classes went through a similiar personality change when they had these same shots. Ususally the Downs are so very sweet, but not after this shot.
She has been on a hormone pill every since which is now approaching 16 years.
Are you wondering if it could be ovarian tumors? I am!
Posted by: Benedetta | July 29, 2011 at 01:49 PM
Hi Benedetta,
I'm not sure what to make of this information as a final answer but it seems to me that different roads lead to it and vaccination is one. The fact that it seems to be increasing would make one wonder. The fact that NMDA receptors are involved also seems to be intriguing. Autoimmunity and seizures as well -- seems a good area to research.
I don't know if it is possible that it can be a chronic condition instead of an acute life threatening one. My daughter never had a blood draw when regressing into autism. What would it have shown?
Has your daughter had hormonal issues? You can email me if you prefer. Thanks.
[email protected]
Posted by: Teresa Conrick | July 29, 2011 at 11:21 AM
This is off-topic for this particular article (thanks again for your research, Teresa), but I wanted to post the following here as I think this warrants further investigation:
http://today.msnbc.msn.com/id/43918460
Strokes spike in pregnant women, new moms
High blood pressure, heart disease fuel 54 percent rise in dangerous brain injuries
The article blames this spike on overweight women with high blood pressure (though curiously their lead-in example has neither problem).
Is it possible this is an effect of giving pregnant women mercury-laden flu shots?
A known effect of mercury toxicity is high blood pressure:
See: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617089/
just for starters, there are several unrelated studies that show a probable link.
Mercury has been linked to some cases of idiopathic dialated cardiomyopathy:
http://www.mercuryexposure.info/science/heart/item/484-mercury-induced-idiopathic-dilated-cardiomyopathy
And idiopathic cardiac myopathy is known to be a cause of stroke:
http://www.ihacares.com/index.cfm/HealthAdvisors/CardiologyAdvisor/crs-ca-car_idiopathic.dilated.cardiomyopathy/
"Besides heart failure, the poor circulation caused by IDC can cause blood clots to form in the heart, break off, and float in the bloodstream. These clots can clog the flow of blood in an artery. This may cause a stroke."
Who will look into this further?
Posted by: Sue | July 28, 2011 at 11:30 PM
Teresa
You will tell us if you get Megan tested for this and how it turns out.
My daughter, Tanya, she is pretty sick right now again. I am worried, but then what is new about that.
I printed this off and try to get it to her doctor but I am not holding any breath here.
Posted by: Benedetta | July 28, 2011 at 10:00 PM
@Bob Moffitt:
I can't help wondering if "post-vaccination narcolepsy" is just a renaming of seizure disorder (absence seizures?), or, in infants--SIDS.
Posted by: Taximom | July 28, 2011 at 08:03 PM
Guess what's going on in my little world tonight? I am baby sitting the neighbors daughter because her 6 year old son had a seizure, after showing other neuro sypmtoms,and passed out this afternoon. And guess what? Less than two weeks ago he was at the doctors office for a "well visit."
This is a little boy who is receiving services for speech delay and has had past GI issues. WHEN IS THIS GOING TO END?
Posted by: Pamela | July 28, 2011 at 07:44 PM
Tereasa
Is it your thinking that this is an on going disease, and not one in which it is bad and then you improve somewhat?
I do not know if my daughter had Anti-NMDA Receptor Encephalitis last year, I suppose not, only because she did not have any sizures untill a few weeks after she was in the hospital for psychosis. She did have a temperature but not high, she did have some really terrible legaches thrashed them about constantly, moaning and groaning. She also had very strange dilated pupils.
In the above article the mother states "--- had gone missing off the ward twice during the night ..."
The hospital staff demanded that I stay the whole day, evening, night and the next day with my daughter just so she would be watched, constantly, and she wouldn't go missing.
I begged the doctors to consider that my daughter was having inflammation attacking her brain some how last year and they just stood there with their eyes all bugged out, dropped their heads and sent in the county psychologist who promptly told me to get out.
The county psychologist after talking to my daughter then told me to get back into the hospital room and made sure that I knew that she had made an appointment to see my daughter 30 days later. I kid you not, I could not make up this stuff!
Then one of the bugged eyed doctors returned as soon as the psychologist left and told me this was an emergency and I needed to make an appointment with my daughter's regular doctor today, right now , by cell phone, in front of him, and use his name to get that appointment as soon as we left the hospital.
When we left the hospital, the first thing I did was go to the pharma to get her antibiotics for her deep puncture wounds she had done to herseld, and asprin.
Asprin is what they gave her for Kawasaki's when she was little and that was all I could think of to do for her, because it was obvious there was no real medical help coming our way.
And I was right, it was a run around to maybe this psychologist, or this mental health place, but not this mental health place because that is not in the coutny she lives in and just because she works and pays a very high employment tax to that county does not make her eligable. Finally a psychiratrist was mentioned, and then a couple of more, but they were all loaded down, but one did have a nurse practioner and she might get her in as the last appointment on her books around six o'clock.
My daughter also had panic attacks last year. It was pitiful to see her look so fearful around, and dodge people fearfully when we went to Wal Mart. Her PDD-NOS, toruettes, epileptic brother had acompany her into these places all last year, and I had to drive her everywhere, she seemed so fragile.
I don't know what we can do to wake up the medical profession.
Is it because we live in the rural Mid West areas of the United States?
Is it any better to live on the north-east coast?
Posted by: Benedetta | July 28, 2011 at 07:07 PM
Thank you so much for this. When I see DTaP and HPV vaccines as a cause, my mind immediately goes to the combination of Aluminum adjuvants and polysorbate-80. From the poster presentation following the autopsy of one of the Gardasil girls who died, presented in 2009 to the American Neurological Association:
"Dr. Lomen-Hoerth said the features suggest a clinical diagnosis of amylotrophic lateral sclerosis (ALS), but the disease progressed more quickly than typical for young ALS patients, she said.
Postmoretem examinations revealed widespread infiltration of T lymphocytes and macrophages in the grey and white matter at all levels of the spinal cord. Additionally, there was widespread demyelination and severe loss of motor neurons.
"We were surprised that the spinal cord was so inflammatory. That is very different from what we normally see in ALS", she said.
"These pathological features support the temporal association of the clinical presentation and vaccination and provide supporting evidence that immune-mediated reactions in the central nervous system are potential risks after Gardasil vaccination."
Posted by: Garbo | July 28, 2011 at 06:59 PM
Curiously, what would be the test for this? I know that some of my kids have had testing for antibodies against their own nerve cells, as some autism recovery docs routinely do. But, I am guessing that this Anti-NMDA Receptor test is different. We need to spread this news in the autism forums so we can start asking our docs for this test. Also, we will need guidelines on how to do the test correctly, or if there is a special lab to use. It's pervasive in the autism arena, that much of the testing is unreliable, thus measures are taken to make sure the collection, transportation, etc. are correct and sometimes very few labs are considered reliable for some tests.
Posted by: Heidi N | July 28, 2011 at 06:06 PM
Thank you for all your work on this, Teresa. It just breaks my heart to think about what percentage of kids out there are only receiving behavioral intervention and psychiatric drugs for a problem which is so clearly medical.
Posted by: Donna L. | July 28, 2011 at 11:48 AM
Thanks to the authors for publishing this and for following through and figuring out what happened to this girl. Not to slight the authors, but one wonders what would have happened if the victim was 15 months old instead of 15 years old.
It is interesting that this was caused by the Tdap-IPV vaccine. This is not routinely used in the US in teenagers as it's not on the CDC schedule. Tdap alone is on the schedule for teenagers, in fact my state of California has a new Tdap mandate this year for teenagers to attend school. I fear we may see a cluster of these cases with so many teenagers simultaneously getting the Tdap for the first time.
Kent mentioned a viral cause for autism, but only IPV is viral. Tetanus, diphtheria, and pertussis are bacterial. I've long suspected that bacterial vaccines might disturb the intestinal ecosystem, similar to the negative effects of broad spectrum antibiotics. I wonder if there is some sort of cumulative effect of introducing bacterial and viral antigens together.
BTW, it is fairly routine for kids to get the DTaP vaccine (the pediatric version of Tdap) and the IPV vaccine in the same office visit, but in different shots. They line up together on the schedule at 2 mos, 4 mos, 18 mos, and 5 years. If it is some combination effect, it might occur here too.
Posted by: Jeff C. | July 28, 2011 at 10:59 AM
Teresa:
No, it was Dr Jan Schieveld from the Lancet article. His e-mail is [email protected]
All the best,
Kent Heckenlively
Posted by: Kent Heckenlively | July 28, 2011 at 10:49 AM
Also- The fact that Gardasil,Cervarix, DTAP-IPV-ie vaccination - can cause this is showing a mechanism to injury. I can tell you that looking through VAERS under HPV showed many cases of "unknown encephalitis" or "psychosis with agitation".."seizures" etc.
Many victims are not getting proper medical treatment as too many doctors do not know about this injury and its subsequent, catastrophic medical issues. It is devastating.
Posted by: Teresa Conrick | July 28, 2011 at 10:33 AM
Hi Kent and thank you.
I think this parallels many illnesses/diseases and especially what many of us experience. With Meg having new onset seizures, and in such an unusual way, this may be pertinent in our quest for proper treatments. Was it Dr.Dalmau that you contacted? I sent him an email about Megan and have not heard back. He has done so much research and seems passionate and brilliant in helping patients.
Posted by: Teresa Conrick | July 28, 2011 at 10:19 AM
I don't know if this is what my 6 year old son has or not but I'm certain he has some form of encephalopathy from his vaccines he got at 3 years (MMR/Varicella/pneumococcal/Hib). The MMR and Varicella were his first ever of those - we had delayed them - the other two shots were boosters. He started showing signs like jumping and hand flapping within 2-3 days following the shots, and other symptoms, too. This past spring we were seeing a very highly regarded neurologist for evaluation for seizures. His EEG came back normal but I am certain he has simple and complex partial seizures. In speaking with the neuro about my belief that he has encephalopathy, I related to him how my son improved dramatically last summer after he broke his arm and was put on a regimen of ibuprofen round the clock for almost a week for the pain and swelling in his arm. I told this to the neurologist and he said - I kid you not - why don't you just give him ibuprofen all the time then?! There is no hope for my son in "modern" medicine if this is the best they have to offer.
Posted by: Bonnie | July 28, 2011 at 10:12 AM
Teresa:
I have to commend you for this wonderful series of articles. I coresponded with the doctor who published the case report and he is willing to answer questions, although he doesn't want to be quoted on a web-site.
I think this is even more evidence that what we're looking at is a viral cause for autism, and at least for my daughter all the signs are pointing towards XMRV.
All the best,
Kent Heckenlively
Posted by: Kent Heckenlively | July 28, 2011 at 10:06 AM
Hi Bob.
Very interesting and pertinent. I think you have made a good point. Yes-- NMDA is involved in narcolepsy:
We also studied mGluR-mediated actions on another cell type in LH, the hypocretin neuron. These cells send excitatory synaptic input to the MCH neurons and could be one source of the mGluR-potentiated EPSCs. The hypocretin cells play a role in enhancing cognitive arousal, and cell loss results in narcolepsy. DHPG (100 μm) dramatically depolarized the membrane potential and increased the spike frequency of GFP-expressing hypocretin neurons (from 2.9 ± 0.3 to 4.3 ± 0.5 Hz; n = 4; p http://www.jneurosci.org/content/27/43/11560.full
"Rapid Direct Excitation and Long-Lasting Enhancement of NMDA Response by Group I Metabotropic Glutamate Receptor Activation of Hypothalamic Melanin-Concentrating Hormone Neurons"
Posted by: Teresa Conrick | July 28, 2011 at 09:38 AM
Hi AnaB,
I'd like to share some more information with you. You can email me if you'd like - [email protected]
Posted by: Teresa Conrick | July 28, 2011 at 09:14 AM
Thank you so much! My son regressed into Autism at 6 months. At 4 he suffered a severe regression that is responsive to Prednisone (reduces inflammation). A tumor was recently found on his hip, possibly benign but we won't know for sure until he has a bone scan. I want to read more and possibly get him tested for this.
Posted by: AnaB | July 28, 2011 at 08:27 AM
Theresa .. would "Anti-NMDA receptor encephalitis" be considered a possible cause for widespread reports of "narcolepsy" after receiving H1N1 .. or .. more specifically .. GlaxoSmithKline's "Pandemix"?
Apparently narcolepsy has been reported in a few Scandavian countries following flu shots.
Posted by: Bob Moffitt | July 28, 2011 at 08:14 AM