Imagine feeling like you’re suddenly losing your mind. One day you’re perfectly healthy and going about your day-to-day life, and suddenly you begin losing your grip on reality – experiencing significant changes in your thoughts, behaviors, and even control over your own body.
This isn’t just some hypothetical nightmare. This is the frightening reality for people who develop an unusual and complex disorder known as autoimmune encephalitis.
Today, we’re going to explore exactly what autoimmune encephalitis is, how it can impact your brain, what causes the immune dysfunction seen in this condition, how certain environmental triggers could potentially spark the autoimmune response seen in this distinct form of encephalitis, and most importantly – review what treatment options are available for this devastating disorder.
What Is Autoimmune Encephalitis?
The term encephalitis refers to acute inflammation or swelling of the brain. Autoimmune encephalitis (AE) occurs when this inflammation and swelling of the brain is triggered by autoimmunity – or when your immune system begins mistakenly and unexpectedly attacking your own healthy brain cells. Autoimmune encephalitis can encompass a variety of different autoimmune reactions that all lead to the hallmark inflammation and swelling seen in the brain.1
Let’s take a quick look at the different types of autoimmune encephalitis that have been identified.
Types of Autoimmune Encephalitis
When your immune system goes haywire and begins erroneously attacking your own healthy cells, it may target specific proteins or receptors in the brain. Exactly which proteins or receptors your immune system targets determines the type of autoimmune encephalitis. Some of the different targets for autoimmune encephalitis include:2
- NMDA (N-methyl-D-aspartate) receptors: A class of receptors that are key for signaling between neurons.
- LGI1 (Leucine-rich glioma-inactivated 1): A neuronal protein that helps regulate the communication between neurons and the release of neurotransmitters.
- CASPR2 (Anti-contactin-associated protein-like 2): A cell adhesion molecule designed to prevent repetitive firing, maintain the resting potential of nerves, and prevent your brain from becoming hyper-excited and overfiring.
- GABAA (gamma-aminobutyric acid-A) and GABAB (gamma-aminobutyric acid-B) receptors: A major neurotransmitter that plays a principal role in reducing neuronal excitability throughout your central nervous system.
- DPPX (dipeptidyl-peptidase-like protein 6): A subunit of voltage-gated potassium channels found on neurons within your gut and brain that generate and control electrical impulses in the gut and nervous system.
- GAD65 (glutamic-acid-decarboxylase 65): A crucial enzyme involved in the production of the neurotransmitter GABA (gamma-aminobutyric acid) which helps soothe your nervous system and keep neurons from overfiring electrical impulses.
- AMPAR (alpha-amino-3-hydroxy-5-methyl-4-isoxazole-propionic acid) receptors: AMPAR are a type of glutamate receptor responsible for the transmission of the bulk of the fast, excitatory synaptic signals in the brain and are important for memory, and learning. The prolonged activation of AMPAR is highly neurotoxic and plays a key role in the generation and spreading of seizure activity.
- IgLON5 (immunoglobulin-like cell adhesion molecule 5): IgLON5 is an adhesion molecule widely expressed in your nervous system, but whose precise function is poorly understood.
- GlyR (Glycine receptors): Blocks the binding of glycine – the major inhibitory neurotransmitter in the spinal cord, brain stem, and cerebellum, that is vitally important in the control of movement, and also has sensory functions, including vision and audition.
- Hashimoto encephalopathy (HE): A rare syndrome associated with Hashimoto thyroiditis in which antibodies bind to the thyroid instead of the central nervous system.
- Seronegative autoimmune encephalitis: This is a blanket term used when all other subtypes of AE have been excluded and no identifiable pathogenic antibodies have been.
As you can see, the immune system can become confused and begin launching an attack against a wide variety of essential components of your central nervous system and trigger the onset of symptoms seen in AE. Now let’s explore exactly what these symptoms can include.
Symptoms of Autoimmune Encephalitis
One of the hallmarks of autoimmune encephalitis is a rather rapid development of symptoms that continue to progress over time. Symptoms may appear over a period of days or weeks and may fluctuate – appearing, disappearing, and reappearing. These symptoms may include:3,4,5
- Abnormal and involuntary movements of the face or limbs
- An exaggerated startle response
- Anxiety and/or panic attacks
- Compulsive behaviors
- Difficulty with balance and coordination
- Flu-like symptoms, such as headache, fever, nausea, and muscle pain (these are typically seen in early phases of AE)
- Impaired memory, cognition, understanding, and ability to process new information
- Impaired speech and/or vision
- Inappropriate and/or altered sexual behaviors
- Insomnia and difficulty sleeping
- Loss of consciousness or coma
- Loss of inhibition
- Paranoid thoughts and/or hallucinations
- Seizures
- Severe anxiety or panic attacks
- Significant changes in behavior (like aggression, agitation, fear, or euphoria)
- Stiff-person syndrome (stiff spasming muscles throughout the body)
- Weakness or numbness
And what’s worse, if left unaddressed, autoimmune encephalitis can cause progressive neurologic decline and even death. So what on earth can trigger your immune system to become so confused that it begins attacking your own brain cells and causes this conglomeration of frightening symptoms?
What Causes Autoimmune Encephalitis?
Determining the exact underlying causes of autoimmune encephalitis can be tricky. Sometimes it can be attributed to a genetic predisposition that wires your immune system to be more likely to go haywire. Sometimes it can be traced back to certain cancers.
But more and more research is finding that one of the primary culprits of autoimmune encephalitis might just be exposure to harmful compounds lurking within our everyday environment such as:6,7
- Viral infections: Specific viruses like herpes simplex virus (HSV), cytomegalovirus, and varicella-zoster virus to name a few
- Lyme disease: Infection with Borrelia burgdorferi, the parasite that causes Lyme disease
- Underlying infections: Certain microbes can remain dormant within your body – slowly wreaking havoc without causing a full-blown infection
- Toxic mold: Exposure to mold and the toxic metabolites it produces known as mycotoxins
Let’s zoom in on how these seemingly unrelated triggers can essentially derail your immune system, spark the development of autoimmunity, and potentially lead to this complex and frightening condition.
How Triggers Like Toxic Mold, Lyme Disease, and Other Infections Can Cause Autoimmune Encephalitis?
So how is it that an invading pathogen or toxin can possibly throw our immune system so out of whack that it leads to the development of a devastating condition like autoimmune encephalitis? It all comes down to immune system overwhelm and burn-out in a process that goes something like this:8,9,10,11,12
- Invader latency and toxin overload: After initially invading your system, certain microbes (like those that cause Lyme disease and a variety of viral or bacterial infections) can stay dormant in your body – essentially hiding out and evading your immune system. Similarly, harmful mold spores and other toxins can sneak their way into your body and begin exceeding your body's ability to properly detox – allowing these poisonous compounds to begin accumulating.
- Immune activation and inflammation: Your immune system is able to sense the presence of a veiled invader as well as a building level of toxins within your body. In response, your immune system deploys its troops and activates the inflammatory response in an attempt to neutralize the threat.
- Chronic secretion of immune mediators: When your immune system is unable to successfully eliminate the foreign invader and/or the build-up of toxic substances, it continues to produce the signaling molecules and mediators that promote inflammation. Your immune system isn’t designed to remain “on” and activated for long periods of time, so your immune system slowly becomes depleted and becomes more and more likely to become unstable.
- Immune suppression and disruption: As your immune system and its network of immune cells work around the clock to try to neutralize the invading threat, resources begin to dwindle and your cells become overworked, exhausted, and disoriented. This inevitably suppresses your immune system's ability to function properly and can disrupt the delicate balance it's designed to maintain.
- Immune system confusion and autoimmunity: This confusion, depletion, and burn-out creates a vicious cycle – allowing the foreign microbes to continue wreaking havoc and/or toxins to continue accumulating. And at some point, this cycle can cause your immune system to snap – sending it into a tailspin that causes your body to begin waging a war against itself.
So how can we treat such a complex, multi-layered condition if autoimmune encephalitis is indeed caused by an invading pathogen or toxin?
Autoimmune Encephalitis Treatment
Initial treatment of acute symptoms of autoimmune encephalitis is aimed at treating the immediate inflammation of the brain and may include:
- Steroid medications
- Intravenous immune globulin
- Plasma exchange
- As well as medications to manage symptoms of AE like:
- Medications to reduce or prevent seizures
- Medications to decrease uncontrolled movements
- Medications to treat anxiety or depression
- Antipsychotic medications for patients who hallucinate
- Medications that improve attention
- And/or medications that help with sleep
But truly addressing autoimmune encephalitis requires addressing the problem at the source by treating whatever is triggering autoimmunity in the first place. This long-term, root-cause approach is what can be tricky and is why it can be immensely helpful to partner with an Integrative and Functional Medicine Practitioner once autoimmune encephalitis is stabilized and it’s safe to begin identifying and addressing underlying factors.
So, Does That Mean Autoimmune Conditions Like Autoimmune Encephalitis Can Be Cured?
The answer is – it’s complicated. You see, there’s not necessarily a “cure” for autoimmune diseases. But there are a ton of strategies and lifestyle adjustments that halt the progression and sometimes reverse the root underlying cause of autoimmunity. When you partner with an Integrative and Functional Medicine Practitioner, they will help you come up with a comprehensive plan that will more than likely encompass things like:
- First and foremost – identifying and addressing any potential underlying infections while finding ways to decrease your overall toxic burden
- Healing your gut and prioritizing the health of your gut
- Helping you find ways to manage stress levels while prioritizing plenty of high-quality sleep
- Eating a well-rounded, healthy, anti-inflammatory diet
- Incorporating immune-boosting supplements
- Integrating alternative health-supporting therapies – like PEMF therapy, infrared saunas, and/or IV vitamin therapy
The path to healing from autoimmune encephalitis or any other autoimmune-related condition will be entirely unique to each and every individual, but will certainly incorporate many of these foundational strategies that help your immune system restore balance.
Have You Experienced Autoimmune Encephalitis or Any Other Autoimmune Disorder?
Autoimmune encephalitis can be frightening and downright devastating. But what’s particularly concerning, is the fact that autoimmune disorders of all kinds are on the rise – especially in modern-day industrialized countries like the United States. Thanks to our increasingly toxic world, stress-filled lifestyles, and less-than-ideal dietary norms, our fragile immune systems are collectively being overwhelmed and burnt out.
But the good news is, whether you’ve been diagnosed with an autoimmune disease, are battling unexplained symptoms, or are simply looking for ways to optimize your well-being, we are not at the mercy of our environment. Fortunately, there are a ton of factors within our control that can help ward off the development of autoimmunity and other chronic diseases and help you create vibrant health from the inside out.
Dr. Jill Health® – MCAS Bundle MCAS treatment involves identifying and avoiding triggers that exacerbate symptoms and here is what I recommend to help support and stabilize mast cells to manage symptoms.
If you’re ready to arm yourself with science-backed, easy-to-understand, and easy-to-implement strategies to protect and promote your health, I encourage you to browse through my blog, my YouTube Channel, and exclusive email newsletter (all you have to do is enter your name and email in the form below to subscribe). And because true health requires a mind-body-soul approach, I also encourage you to pick up a copy of my book Unexpected: Finding Resilience Through Functional Medicine, Science, and Faith to help inspire you to tap into the power of faith, love, and resilience to create a life that’s extraordinary beyond your wildest dreams.
Resources:
- Autoimmune encephalitis – About the Disease – Genetic and Rare Diseases Information Center (nih.gov)
- Types of Autoimmune EncephaIitis – Autoimmune Encephalitis Alliance (aealliance.org)
- The Diagnosis and Treatment of Autoimmune Encephalitis (nih.gov)
- Autoimmune Encephalitis | OHSU
- Autoimmune Encephalitis Symptoms | AE Alliance
- The Diagnosis and Treatment of Autoimmune Encephalitis (nih.gov)
- Autoimmune Encephalitis – Autoimmune Encephalitis (autoimmune-encephalitis.org)
- Body Burden – an overview | ScienceDirect Topics
- The Capacity of Toxic Agents to Compromise the Immune System (Biologic Markers of Immunosuppression) – Biologic Markers in Immunotoxicology – NCBI Bookshelf (nih.gov)
- Chronic viral infections in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) | Journal of Translational Medicine | Full Text (biomedcentral.com)
- Possible Causes | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC
- Mast Cell: A Multi-Functional Master Cell (nih.gov)
* These statements have not been evaluated by the Food and Drug Administration. The product mentioned in this article are not intended to diagnose, treat, cure, or prevent any disease. The information in this article is not intended to replace any recommendations or relationship with your physician. Please review references sited at end of article for scientific support of any claims made.
9 Comments
How would one be diagnosed for this? I asked my doctor about the Hashimotos encephalopathy as I had a severe health crisis 6 months ago and am still recovering and dealing with the ramifications. Many of the symptoms you listed and I begged for testing of all kinds and they didn’t check anything like you listed above, just basics and then sent me to a psychiatrist. Do you have any suggestions for obtaining the required tests to rule these types of things out ? Thank you!
All three of the following criteria must be met:
1) Subacute onset (rapid progression of <3 months) of working memory deficits (short-term memory loss), altered mental status*, or psychiatric symptoms
2) At least one of the following:
- New focal CNS findings
- Seizures not explained by a previously known seizure disorder
- CSF pleocytosis (>5 white blood cells per mm
3) MRI features suggestive of encephalitis
Reasonable exclusion of alternative causes (EEG to exclude seizures, CSF examination should be performed and should include cell count, protein, and glucose; inflammatory markers (IgG index, oligoclonal bands); paraneoplastic and autoimmune encephalitis antibody panel testing; broad viral studies including herpes simplex virus (HSV) 1/2 and varicella zoster virus (VZV) polymerase chain reaction (PCR), and bacterial and fungal cultures when appropriate)
I also typically order autoimmune encephalitis panel on blood work to look for the autoantibodies mentioned in article in the serum.
yes! It took a dear (FM-trained MD) friend who, by the grace of God + her absolute brilliance who noticed I was suddenly in a very sympathetic state one day – talking very fast, very agitated and unfocused. I also had not been sleeping and was waking up with apnea-like symptoms all night. (I was unaware of all these symptoms as they had crept up slowly). She helped me confirm I was dealing with a toxic stachybotrus situation in my house that was literally killing me. She helped me find professionals to test and remediate my house, but most importantly get out of the house immediately (not an easy thing to do!). I will forever be grateful to my dear friend Meg for saving my life.
So glad to hear you had this brilliant beautiful friend by your side
I have many of the symptoms described and had my first grand mal seizure last year. I have had Lyme Disease and have thyroid issues as well. I am on anti seizure medication, and take thyroid meds,
but continue to have weird brain issues and achy muscles.
I have a 69 y.o. friend who has been diagnosed with early dementia from findings of a brain MRI. She has recently had multiple falls due to balance issues. She is having more and more memory lapses. Forgetting names of family and friends. She was a dental hygienist 42 years and has been in good health until 1 1/2 years ago when she broke her lower leg. And had to be put on blood thinners for a blood clot. She also was diagnosed with low thyroid a few years ago and takes Synthroid but no other meds. She did get the Co-vid jab and I am wondering if she may be having symptoms from the spike protein effects. She also complains of alot of foods tasting bad that once was good to her. When I read your article, I began to wonder if she could have something like this going on. Also, wonder if she should have heavy metal testing due to working in the dental industry. She has never been one to take good supplements or eat really healthy, but she is now taking 5,000 IU of vitamin D3, a methylated B complex, a multivitamin, a probiotic, an omega 3 fish oil, a brain supplement that includes bacopa, and a grapeseed supplement. She also has insomnia and a history of staying up late playing games on her ipad but would just sleep late to compensate. The only thing that has helped her insomnia is Tylenol pm. I am sure poor sleep habits could have contributed to her compromised brain health but as her friend and someone who is in the healthcare industry, I am looking for more answers because her doctors here are not offering much help or testing to seek out the ROOT cause. Thanks for any input or suggestions you can provide.
Hi Becky, you might look for a Bredesen trained provider with RECODE for your friend. I do suspect inflammation, perhaps reactivated infections and perhaps microvascular issues created compromised blood flow. I also see many in the dental profession dealing with accumulation of mercury toxicity. She could start with detailed brain MRI and Neuroquant and baseline neuropsych testing to determine the extent of her memory and executive function compromise.
Best to you
Dr Jill
Poor sleep is caused by chronic, systemic Bartonella infections. In this case Bartonella brain infection is causing serious damage to the gray matter, the disease is called NeuroBartonellosis. The brain fog is caused by severe neuroinflammation and intensive neuro damage, destruction of healthy neurons, causing brain ischemia and gradual cognitive decline. Bartonella henselae, Bartonella vinsonii and Bartonella quintana are the main culprits. Have to treat the patient with bactericidal intracellular gram-negative antibiotics, to stop the cellular brain damage asap. Minocycline is very good antibiotic, Doxy plus Rifampin is effective combination, Fluoroquinolones are bactericidal, intracellular abx, can penetrate deeply into the brain.
Share: