A Bear of a Problem: Brain on Fire from Autoimmune Encephalopathy

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Sometimes, the immune system turns on us and attacks the healthy cells in the body.

This is called autoimmunity, and it can manifest itself in the form of many different conditions. FOr example, it can become autoimmune arthritis in the joints, autoimmune diabetes in the pancreas and autoimmune encephalopathy in the brain. The latter is also known as autoimmune encephalitis.

What Is Autoimmune Encephalopathy?
While encephalopathy means “brain disease”, encephalitis means “brain inflammation”.

Autoimmune encephalopathy is in fact a group of different conditions, rather than just one. Those affected by it can get a variety of different neurological and psychiatric symptoms, such as:

Speech problems
Issues with balance
Vision problems
Memory impairment
Cognitive impairment
Abnormal movements
Compulsive behaviors
Inappropriate sexual behaviors
An increase in aggression
Panic attacks
Loss of consciousness
The symptoms that manifest will differ from person to person as they depend on which part of the brain is affected and which part of the immune system is activated.

What Causes Autoimmune Encephalopathy?
At this time, the root cause of autoimmunity itself is not well-understood. Some theories suggest that, in fact, it is not an anomaly on the immune system’s part, but an attempt at attacking stealth viruses, such as Epstein Barr or Herpes Simplex, within the cells, and this in turn damages these cells in the process.

The cause of autoimmune encephalopathy is not fully clear, but there is evidence to show that there may be an association between the disease and antibodies present on the surface or on the inside of nerve cells. The antibodies are against certain proteins that are involved in nerve cell signaling. Since 2017, approximately 22 different antibodies have been identified as involved with autoimmune encephalopathy, including antibodies against proteins like CASPR2, AMPA, GABA, and NMDA.

Even though there is no evidence that people with autoimmune encephalopathy may inherit this condition, there may be a few cases where there have been correlations between it occurring in cancer patients. In such instances, these forms of autoimmune encephalopathy are categorized as paraneoplastic syndromes.

Paraneoplastic Syndrome vs Autoimmune Encephalopathy
Paraneoplastic syndromes are usually activated by the immune system attacking normal cells when a certain type of cancerous tumor, called a neoplasm, is present. This mostly happens in breast, ovarian, lung, and lymphatic cancers.

Even though, both paraneoplastic syndromes and autoimmune encephalopathy are pretty rare, the latter is becoming more recognizable and may be more common than previously thought. They are both severe conditions, with a mortality rate of autoimmune encephalopathy of about 6%.

Autoimmune encephalopathy can affect both men and women of all ages. However, it has been observed that more young women are affected. This is similar to other observations where young women are found to be more prone to different autoimmune conditions. Different hormonal milestones in a woman’s life, such as pregnancy, childbirth, and menopause, can trigger autoimmunity and its symptoms out more intensely. But the exact mechanism of action is still unknown.

Adrenal fatigue and dysregulation of the NeuroEndoMetabolic (NEM) Stress Response seems to also affect more women than men, though it could be that women tend to seek help from healthcare professionals more often compared to men.

Autoimmune Encephalopathy and the NEM
The NEM is your body’s global response to stress. It is composed of six circuits: Hormone, Bioenergetics, Neuroaffect, Cardionomic, Inflammation, and the Detoxification circuits.

Your adrenal glands, which are your first line of defense against stress, are part of your Hormone circuit. They are regulated by the control centers in the brain: the hypothalamus and the pituitary gland. When the hypothalamus receives the information that there is a stressor affecting your body, it signals to the pituitary gland to send stimulatory hormones to the adrenal glands so that the adrenals produce anti-stress hormones.

Cortisol is your body’s main anti-stress hormone, and when you are facing stress, its levels increase until the stress is resolved. But if the stress is chronic, your adrenals have to work overtime to keep producing more and more cortisol, and this can lead to Adrenal Fatigue Syndrome (AFS).

AFS can bring on neurological and psychiatric symptoms. This is because when your body is unable to cope with the chronic stress and your adrenals become exhausted, the rest of your NEM has to compensate and becomes vulnerable to dysregulation. When the Neuroaffect circuit dysregulates, the symptoms of autoimmune encephalopathy begin to manifest.

The Neuroaffect circuit is one of the most deeply affected, out of all the NEM circuits when you have a condition like autoimmune encephalopathy. We will therefore focus on this circuit to understand how the NEM and stress are involved in brain diseases.

The Neuroaffect Circuit
The Neuroaffect circuit is composed of your brain, your autonomic nervous system, and your microbiome – and it combines neurological and affective parts. The biological aspect of brain and mental health is responsible for autoimmune encephalopathy, rather than a neuropsychiatric one, and your well being heavily relies on the balance of neurotransmitters in your gut, brain, and the nervous system.

We have found that physical stress tends to have a bigger effect on the NEM and the adrenal glands compared to psychological stress, although the latter can make the body more susceptible to physical stressors. Some of the physical stressors include eating an unhealthy diet, an unknown viral infection, any recurring infections, taking certain types of medication, excess alcohol consumption, taking recreational drugs, and being exposed to toxins.

All such stressors can cause inflammation in the body, including autoimmune encephalopathy. If you want to tackle this kind of acute inflammation of the brain, holistically, it is vital to look at inflammation in general, particularly which affects the brain and nervous system. It is important to note that although most types of inflammation begins in the gut, it can spread to other parts of the body, when it becomes chronic.

Inflammation and the Neuroaffect Circuit
It may have been a surprise to see that one of the components of the Neuroaffect circuit is the gut’s microbiome, which is involved in inflammation and in the balance of neurotransmitters, it is in fact astounding to note that two thirds of immune system cells reside in the gut-associated lymphoid tissue (GALT). Also, the gut produces a large amount of your neurotransmitters in the body. For example, it has been estimated that 90% of your serotonin is produced in your gut.

Dysbiosis and Inflammation
Dysbiosis (or imbalance in the flora) of your microbiome can lead to a leaky gut, where the tight junctions in the lining begin to loosen up and allow toxins and pathogens into your bloodstream. As soon as your immune system is alerted to this, it mounts an attack, creating inflammation in the area.

If this issue is not addressed, it can become a cycle, where the immune response is triggered constantly, leading to chronic inflammation that begins in the gut but can spread elsewhere. Inflammation that spreads to the brain and nervous system like autoimmune encephalopathy can cause mental health issues as well as neurological symptoms. 


Dysbiosis and inflammation in the gut can also affect the gut’s ability to produce the neurotransmitters needed for the brain to communicate with the rest of the body, and vice versa. And, of course, a systemic imbalance in neurotransmitters will bring about mental health and neurological symptoms as well.

For example, GABA is an inhibitory neurotransmitter that inhibits the parasympathetic nervous system slowing down the body’s processes. This helps the body to wind down and relax. It is especially important after there has been some type of acute stress and now your body needs to rest and repair. If this neurotransmitter is lacking, you may not be able to escape the “wired and tired” state that sometimes comes after a lot of stress.

All of these issues must be taken into consideration while coming up with a recovery plan for autoimmune encephalopathy. Otherwise the approach is not complete and the condition may put too much of a burden on the adrenal glands, the Neuroaffect circuit, and the NEM at large.

Dealing with Inflammation
To deal with inflammation, you must figure out what is the root cause of it. Inflammation due to dysbiosis is often caused by inflammatory diets, and because you may not even be aware of the fact that you are eating foods that inflame your gut, you keep doing it and making things worse.

Incorporating an elimination diet might help you to figure out which foods are causing this inflammation. Gluten, for example, has been found to be neurotoxic for many people, and they may not exhibit the typical gastrointestinal symptoms of gluten sensitivity. Other inflammatory foods that you can eliminate include processed sugar, alcohol, dairy, eggs, and any foods that have pesticides or artificial additives.

The adrenal fatigue diet is anti-inflammatory and also very good at helping the adrenal glands get stronger so they can help fight stress and inflammation.

Other Recovery Considerations for Autoimmune Encephalopathy
Dealing with inflammation and AFS should be part of the recovery, whatever other types of treatments your doctors may suggest. And depending on the type and cause of autoimmune encephalopathy, you may end up with a mix of different approaches.

Surgical Approach
If the autoimmune response was triggered by a tumor, then your doctors may suggest the removal of that tumor. If the encephalitis was triggered by exposure to bacteria and viruses, most commonly streptococcus, Herpes simplex, and mycoplasma pneumonia, then your doctors may come up with a plan to deal with these infections as well.

Serum Antibodies
Serum antibodies that are involved in the autoimmunity can be removed through plasma exchange, and the use of intravenous immunoglobulin can help inhibit the binding of such antibodies and reduce their inflammatory response.

Immunosuppressant Drugs
In some cases, you may be prescribed immunosuppressant drugs in order to reduce the number or activity of the immune cells that are involved in the autoimmune and inflammation responses.

Aside from these treatments, your doctors might give different suggestions for symptom relief. For example, if you are struggling with psychiatric symptoms, you may be referred to a psychiatrist and psychologist.

Psychotropic Medications
If you are having severe psychiatric symptoms, such as psychosis, you might be put on medication. Agitation, aggression, and anxiety may be a little trickier, as many doctors prescribe benzodiazepines for them. Benzodiazepines are notorious for creating addiction and sometimes have very challenging side-effects. Do make sure you do your research and talk with your doctors before deciding on this course of action.

Stress Management
Lastly, you want to give your body and mind as much support as they need while you recover. Other than eating a healthy diet, try your best to manage your stress levels, rest and sleep as much as you need, and do gentle forms of exercise.

Certain supplements can help as well, but you will need to be extra careful with those as some may be contraindicated and end up causing you paradoxical reactions, especially if your AFS is more advanced.

Another thing to keep in mind when considering supplements, herbs, or any other natural medicine is that they are medicinal in nature, and can interfere with medications your doctors prescribed. Some supplements may stimulate the immune system, which in turn can counteract the effects of immunosuppressant drugs, or just make your immune system more active. Either way it would worsen your autoimmunity like autoimmune encephalopathy.

This is why it is very important to follow the guidance of a skilled health professional who is experienced not only in autoimmune encephalopathy, but also understands how inflammation and stress play a role in your overall health and wellbeing.

Please also consider joining support groups, which can really help you learn different coping skills. Additionally, you will have support from a community that understands what you are going through. Although autoimmune encephalopathy can be scary and challenging, people can adapt and recover. It just takes some patience, the right kind of support, and a holistic mindset.