Autoimmune Encephalitis and Diet

This post will be mostly based on anecdotal evidence , but I believe this information is still useful and there is not much harm in the suggested diets. In the worst case, the diet won’t help with autoimmune symptoms,  and you’ll just end up eating more vegetables. I don’t think that’s a terrible outcome.

The most popular diet for autoimmune diseases is the Autoimmune Protocol Diet (AIP). Most popular doesn’t mean it has the most evidence to back it up, but for whatever reason, it got around the internet. The AIP diet excludes many foods that are considered to be inflammatory and claims to reduce levels of thyroid antibodies. I cannot claim that his mechanism is true as there are almost no scientific papers on this, only anecdotal evidence. On the other hand, this diet is not unhealthy, so I doubt someone would be worse off by trying it. Usually bloggers/naturopaths recommending the diet suggest to try it for at least thirty days. Food groups that are excluded are gluten, all grains, pseudo-grains, dairy, legumes, beans, nuts, seeds, nightshades, eggs, vegetable oils, processed foods, and sugar. I might be forgetting something because there are so many items that get excluded, but if you are interested, you can read about the diet below.

Autoimmune Protocol Diet

What evidence is there? Well when I googled “AIP diet evidence”, I found one paper. You can try the same Google search. This particular study found that following the AIP diet, 6 weeks elimination phase and 5 weeks maintenance phase, improved endoscopic inflammation in patients with IBD (irritable bowel disease). Only 18 patients were enrolled in the study, so that is a very small sample size. Also such a study does not tell us whether it was necessary for all these food groups to be eliminated, maybe the results would be the same if only gluten and processed foods were eliminated. So it is some evidence that the diet helps but it is only one study and it doesn’t tell us about the mechanism of action of this dietary intervention.

Efficacy of the Autoimmune Protocol Diet for Inflammatory Bowel Disease

Personally I did follow the AIP diet for about a year. When I found out in June 2016 that I had high levels of thyroid antibodies, I finally started to have some hope that maybe I have an autoimmune disease that can be treated instead of treatment resistant schizophrenia and psychotic depression. My mom googled a lot at that time, I didn’t have the energy or motivation to do it, and she convinced me to start trying dietary changes. I started by excluding gluten and dairy and later on went on the AIP diet and stayed on it until December 2017. In June 2016 my Anti-Tg antibodies were over 1000, Anti-TPO was 40 something. Comparing to spring/summer 2016, I did improve by fall 2017, and my Anti-Tg antibodies reduced to about 500. Anti-TPO stayed the same. Was this improvement directly related to the AIP diet and was it necessary for me to eliminate all the food groups? I don’t know the answer to that question. I did go to a gastroenterologist who diagnosed me with chronic gastrointestinal inflammation and advised me to go on a low FODMAP diet. AIP diet overlaps with low FODMAP diet, therefore it could be that it was the elimination of high FODMAP foods that helped me.

The low FODMAP diet is based on the idea that certain foods contain compounds that contribute to gastrointestinal disorders such as IBS. FODMAPS are short chain carbohydrates and sugar alcohols, such as fructose, fructans, galacto-oligosaccharides, lactose, and polyols. Research indicates that some people might not be able to digest these compounds well and this could lead to inflammation in the intestines and gas produced by bacteria as they break down undigested carbohydrates.

Below is a list of high and low FODMAP foods (for those that are FODMAP intolerant it is advised to avoid high FODMAP foods, this can be discussed with a gastrointerologist).

High and Low FODMAP Foods

Could a bad diet cause brain inflammation and psychotic depression? Could a change in diet reduce symptoms if there is inflammation? I don’t think at this point we have a concrete answer, there have been studies though which indicate that a specific diet could improve your mood and physical health. Autoimmune encephalitis is quite rare and I haven’t seen studies on AE patients and diet changes, but I still encourage you to consider whether you are eating healthy and to consider making changes. In general, from what I’ve read, many doctors consider the Mediterranean Diet. This diet includes whole grains, a lot of vegetables,  yogurt , nuts and seeds, and more fish instead of meat (increasing Omega 3 content). There has been a study with positive results, indicating that Mediterranean diet can help patients with depression.

Mediterranean Diet Depression Article

So which diet is best, should you try a specific diet, which one? There is no medical test for this at the moment, only trial and error. As I mentioned, I was on the Autoimmune Protocol Diet for about a year and I did see an improvement in symptoms and reduction in Anti-Tg antibodies . My gastroenterologist also advised me to stick to a low FODMAP diet due to my abdominal issues and I have been following this advice. After I received the IV steroids treatment in December 2017, I relaxed my AIP dietary restrictions and tested several items. I stick to eating gluten-free free and cow dairy free, also I felt that I had skin/abdominal issues become aggravated by potatoes, peanuts, and hot peppers. I avoid processed foods and vegetable oils.

It sounds restrictive but I found this diet to be working for me and I feel that I have enough variety. I eat a lot of goat/sheep/buffalo plain yogurt with nuts and seeds, tea with goat milk, qual eggs, poultry , seafood. In terms of vegetables – zucchini, carrots, squash, plantains, sweet potatoes, kale, spinach, bell peppers, etc. Grains – black rice,  quinoa, buckwheat, oatmeal. For bread I eat sourdough version and sometimes I make cassava flour tortillas. I don’t eat beans and legumes much because they are high FODMAP, sometimes I add canned chickpeas or sprouted mung beans. For cooking I use olive, avocado , and coconut oils.

My story at Autoimmune Encephalitis Alliance Org.

Hi everyone, I am very happy that my story got posted in AE Alliance blog. I hope it will help some readers to receive a proper diagnosis. I cannot say that I recovered 100%, but there is improvement after IV steroids, and at least now I know the specific diagnosis. I’m sure that for many being told by doctors multiple diagnoses is a horrible experience. Going from one doctor to next, being told it’s schizophrenia, major depression, schizoaffective disorder… More doctors need to be aware of HE!
 

Hashimoto’s Encephalitis – Diagnosis and Treatment

Hashimoto’s Encephalitis (HE) is a diagnosis that is made through exclusions of other causes. There is no one specific test to diagnose HE, but usually the tests that are performed are thyroid antibodies (Anti-Tg and Anti-TPO) blood test, MRI, EEG, and spinal tap. HE is a quite rare disease, therefore it is definitely not something that would be tested for right away. Many healthy people have elevated thyroid antibodies, these antibodies can also be an indicator of Hashimoto’s thyroiditis, which is not the same as Hashimoto’s Encephalitis. After I continued to not respond well to anti-depressants and anti-psychotics, I consulted with an endocrinologist to discuss whether I had any thyroid issues. My thyroid hormone levels were normal but elevated Anti-Tg and Anti-TPO antibody levels were discovered. At that point the endocrinologist diagnosed me with Hashimoto’s thyroiditis and stated that the thyroid antibodies were not something to worry about at the current moment as they were just an indicator that I might develop thyroid disease twenty years from now on. There is still no exact proof that it is these thyroid antibodies that caused my symptoms, but my condition did improve after intra-venous treatment with Solu-Medrol (anti-inflammatory glucocorticoid), and my antibody levels decreased as well. I will not claim causation, but there is correlation here, and my neurologist agrees that I have improved since the steroids treatment.

I am not sure whether the numbers are meaningful, it had been stated that specific values are not correlated with the severity of HE symptoms, but initially in June 2016 my Anti-Tg levels were over 1,000 and my Anti-TPO levels were above 40. This was during the period of time when I lost my job and was on Latuda and Sertraline. I was finding it physically difficult to wake-up, to move, and to talk. My speech was becoming slower and everything was also followed by intense emotional pain. It was sort of a state of grief without cause. As I mentioned in my previous posts, I did go on AIP (autoimmune protocol diet) diet after discovering that I potentially had autoimmune disease, and my symptoms did improve. I was able to go back to full-time work in November 2016 and after awhile tests showed that my Anti-Tg levels decreased to around 500, Anti-TPO levels stayed about the same. Again, this is anecdotal evidence, and I cannot claim that it is specifically the AIP diet that helped me. A gastrointerologist did advise me to try a low-FODMAP diet and AIP overlaps with low-FODMAP. Also I did have a ‘maybe’ result for celiac testing and I went gluten-free. I also stopped taking anti-psychotics and a new diagnosis of Hashimoto’s thyroiditis (at that time), instead of schizophrenia (diagnosis that I received previously), provided me with psychological benefits. Therefore it is not possible to untangle all the changes that I made during the summer and we don’t know which factor improved my condition. Some conditions improve and relapse in cycles as well, therefore changes in symptoms could be not due to the actions of the individual.

Autoimmune Encephalitis Story (part 3)

Part 1:

Autoimmune Encephalitis Story (part 1)

Part 2:

Autoimmune Encephalitis Story (part 2)

In June 2016 I actually started to have some hope. No, I didn’t throw away my charcoal grills, but at least now there was something to research, testing to be done. Previously my psychiatrist told me that I had a choice between psychosis and antipsychotics and I don’t think that should ever be said to a patient. If the antipsychotics are not working and the psychosis is emotionally unbearable, what message are you sending your patient? Well you are giving them another reason to commit suicide – why live if the only choices you have are being non-functional and psychotic or being on olanzapine. Anytipsychotics do help some people and therefore they are a good choice for them but for me they were not working at all, so the right thing to say would be that more investigations would be done. As you see from the story, it was not the psychiatrist who ended up investigating, but my mom. So I got lucky, but it should not be this way. Access to proper treatment should not be based on luck and having someone googling your symptoms for you, this is the doctor’s job.

So in June 2016 I went off Trazadone, Latuda, Mirtazapine, Lorazepam. I only continued with Sertraline until October 2016. I started taking Cytomel (man-made version of thyroid hormone T3) and I got tested for celiac disease. The results were a ‘maybe’, inconclusive, but  I still decided to try going gluten free and dairy free as some people with autoimmune disease do report improvement after eliminating those foods. Yes, some will say it is only anecdotal evidence, but when the way you feel on a daily basis makes you purchase hibachi grills, anecdotal evidence is good enough. Especially when the doctors have no suggestions or solutions for you. I was told that Hashimoto’s thyroiditis was not something to be too concerned about because it could affect the thyroid in the long run but at the moment my thyroid hormone levels were normal. I was told that I had nothing to worry about for the next twenty years. But then why were there old women, whom no one else notices, asking me to help them die? Why was I afraid of passing by Starbucks because hearing music from the speaker caused a feeling of grief? At that point I have not yet heard about autoimmune encephalitis, which is brain inflammation, so I had no answers to these questions.

I was now off the antipsychotics and at first I eliminated just dairy and gluten. It was quite difficult for me and I made a mistake of substituting everything with gluten-free labeled products, which actually contain a lot of refined carbs. Still, this change in diet, or coming off the neuroleptics, or feeling some hope after reading overly positive reviews on AIP diet promoters’ blogs, but I started to feel a sort of feeling of waking up.

Autoimmune Encephalitis Story (part 2)

First part of the story:

Autoimmune Encephalitis Story (part 1)

Confusing summer continued

The confusing summer continued and it did not get better. I was allowed by the university to rewrite the exam that I failed and I had about two months to prepare for it. I continued working as a research assistant for a professor and I was supposed to be doing my own research since I was a graduate student but this task I found extremely difficult. I felt that a part of my mind which was responsible for creativity evaporated and I could not come up with any ideas myself, I could only follow clearly outlined instructions. I also became very indecisive and for anything that I was going to do, I required a confirmation from another person. Some part of my brain clearly started to malfunction because previously I was able to write academic papers, organize camping trips, participate in a band. Now I could not write even a paragraph about my research, I would just sit and stare at the screen, not able to extract any continuous thoughts from my mind. I was very uncertain of what I should be doing everyday and I would refer to my boyfriend for any decision – ‘what should I do in the evening?’, ‘should I continue with the graduate program?’, ‘should I call my friend to make plans?’.

My boyfriend and my parents could see that I was quite stressed about not having any ideas for research and not being able to decide whether to continue with grad school. Me and my boyfriend took some trips to national parks during the summer in order for me to de-stress, and usually I would really enjoy camping and hiking, but these times it was different. Trips became for me too emotionally overwhelming. A view of a lake from a lookout point would bring me to tears as I would think how meaningless the beauty of this was. We were just pieces of organic tissue clumped together, soon we would cease to exist and none of our experiences mattered. What was the point of having a camping experience if once you no longer exist you will have no memory of it? During the hike several times I had this dissociative experience where I would feel that the event is not happening right now but it was happened already in the past. As if you would watch an old video of your family or someone you know and maybe who was no longer alive. I could not enjoy the moment because I did not feel that I was in the current moment, I felt sadness and nostalgia for a time that had already passed.

All these psychological experiences were on top of the physical symptoms. Since I did not have courses during the summer I did not have to wake up early and there were many days where I could not get out of bed until 2 PM. I experienced extreme fatigue and muscle aches, my body felt very heavy and it was difficult to move around, I often had shortness of breath. My eyelids were swollen and I felt pressure at the top of my head, it was often difficult to look up or look straight. There were also frequent migraines and brain fog. It was as if I was getting detached from my body and my brain – I having difficulty controlling the movements of the body and processing thoughts. My consciousness was clouded and I could not get out of the fog.

I ended up leaving the graduate program as I could not see myself continuing with more courses, exams and a thesis. At the moment when I left I was not very upset about that because in my mind I had an explanation that my symptoms were sort of there as a message that I was not going the right way with my life. I guess my mind was looking for an easy solution or it was trying to make sense of the situation. It’s very difficult for a broken brain to realize its own sickness, especially if its the first time. After I already got diagnosed and connected with many other autoimmune encephalitis patients, I noticed that those who were diagnosed at an older age were more proactive about their health. Before the onset of the symptoms in my early twenties, I have probably visited a doctor only three times since I came to Canada. I saw a dermatologist once about my acne and later on I saw my family doctor twice when I needed some antibiotics. That was really it. I had no knowledge about existence of any diseases except most known ones such as cancer and heart disease, as well as some rare ones like leprosy and plague. The latter ones get mentioned in novels or movies a lot, that’s how I had any information about them. I had no idea that there was such a thing as autoimmune disease, and I had a lot of misconceptions such as thinking that only overweight people could have diabetes.

One evening in October, after I already left my graduate program, I was coming back home from downtown by subway. I was waiting for the train when I sensed oncoming fear. There were other people around me at the station, engaged in conversation, but no one was noticing my existence. I felt that I was not a full person and it became apparent to me that my life was very lonely and meaningless. I had no accomplishments, I failed to complete grad school, I didn’t have any children. It seemed to me that all the others around me could see at that moment that I was not a full individual, and in fact they were thinking that I should not exist at all. I heard the rumbling noise of the oncoming train and I had a sudden urge to jump onto the rails. I managed to get home and called my boyfriend. We agreed to go to ER the next day and to request psychiatric investigation.

Fun with psychiatry starts

Here is the fun part of the story where I tell you about all the psychotropic medications that I tried. You name one and I probably tried it.

The next day after my incident at the subway station I arrived at the ER. When the nurse at the intake asked me what was wrong I said that I was not sure and started crying. I tried to describe that I thought I was depressed and also my life was meaningless. I did not want to live because we were all going to die anyways and I was afraid that people that I knew were going to die before me. Also I described how I often felt dizzy, fatigued, had difficulty having my eyes open, and no one was helping me. All this time I continued crying and when a psychiatrist arrived to evaluate me he decided that I had to be involuntarily hospitalized.

I was given some antipsychotics, Abilify and Seroquel, in an effort to calm me down. The medication did not work as I had a severe panic attack after my boyfriend left. My cellphone was taken away by the nurses and I was sure that I would never be let out from the hospital. I started to think that my boyfriend placed me there on purpose in order to get rid of me, I was certain that he would never come back to get me and I was being institutionalized for life. These ideas do seem amusing now, after having more experience with the Canadian health care system. There are actually not enough beds now and many people are not able to obtain a hospital stay that they need. There are also not enough psychiatrists. Usually the maximum that they keep you if you are suicidal is three days. Well at that time my mind was in a state of total fear. I was placed in a room with another person who I thought was a man and probably a serial killer. Later on I realized it was an older woman who was very quiet and slept most of the time.

My predictions about institutionalization for life did not come true and I was released after two nights with a referral to a psychiatrist. Opposite to my fears at that time, I now consider myself pretty lucky that I was actually given a hospital stay and a quick referral. I’ve read that many patients in Ontario wait six or nine months for a psychiatrist, which is a very upsetting statistic.

Below I will describe my experiences with the psychiatric treatment, but remember that this is an experience of just one person. Antidepressants and antipsychotics did not work for me personally, but it does not mean that they don’t work for some other people. As I mentioned initially – I was later on diagnosed with Hashimoto’s Encephalitis and also Borderline Personality Disorder. Antidepressants and antipsychotics usually don’t work for these conditions but these diseases are different from depression and schizophrenia. I advise for thorough medical investigation in order to understand the causes of your psychiatric symptoms!

Mirtazapine

After the first visit, the psychiatrist diagnosed me with major depression and prescribed mirtazapine. My opinion is that she really overlooked all the physical symptoms for some reason and only focused on depression. At that time all that was known was that my TSH levels were normal, my fasting blood glucose levels were within range, and the regular blood test results were OK. As I mentioned, I was also previously diagnosed with chronic gastritis and IBS. No testing for autoimmune conditions was performed, free T3 and T4 levels were not checked, vitamin D levels were also not checked (later on it turned out that they were quite low). As I said, I had very little knowledge of medicine or disease, so I was not aware of medical tests that existed. When my psychiatrist told me that everything health related was verified and that nothing abnormal was found, I believed that they literally checked ‘everything’. Of course now I know that’s not possible because there are hundreds of tests and no doctor will order all of them for you because that is just economically implausible.

I started taking the medication daily and I think I had high hopes for it. I was expecting all my issues to be resolved. I did feel a bit better in the first few weeks and actually the brain fog cleared up a bit, my eyelids became less swollen. I am not a doctor but I think this could be related to the fact that mirtazapine is a strong antihistamine. In a few weeks though I was back at the psychiatrist’s office and Wellbutrin was added to the regimen. The day after I started this drug will be quite memorable for me. It was sort of like going to hell and coming back.

Pleading faces

On the second day of starting Wellbutrin I was a bit more energetic at work in the morning. I tried to do my job but by lunch anxiety started to creep in. This time it felt even more severe than before. Coworkers around me conversing with each other. How could they be smiling, easily speaking about some irrelevant topics such as reporting, when we were all going to die. Probably not at the given moment, but in general, it was going to happen, and how then could anything else matter? I also felt extreme fear of isolation – everyone was connected to each other but me. I could not engage in conversation, I had nothing to add, and my speech was paralyzed by anxiety. I couldn’t sit still, I felt agitated. I went down to the food court and that’s when I saw them. The old women. The food court area was filled with them. They were slowly dragging their bodies in uncertain directions, they had no where to go. I don’t know how for they had been there, but it could have been months. I know why they didn’t want to go home – at home, in the silence, it was ultimate loneliness. They came out, looking for humans, for someone to at least acknowledge their existence, but no one was noticing. They were looking at me with pleading gazes – ‘please, help us die’ – was their cry for help. They did not speak these words out loud, but I knew that is what they were asking for. I felt extreme emotional pain, I couldn’t stand looking at them. Why were people walking past them and not noticing them? They were being forced to exist here, in this underground concrete place, with no sunlight and no way out. I had to run back upstairs, I could not tolerate watching these women. It was better at my computer desk, the screen was familiar, there were windows around the floor. The fear lessened but still something was wrong. Awfully wrong. Why were all those women there, why had I never seen them before? Where was this emotional pain coming from?

I have since been back to that food court several times, since it is close to my new work location. I can tell you that it’s quite rare to see an older person there because the food court is located under the office buildings in the financial districts. It’s mostly bank employees there. But that is what our mind is capable of, painting such horrifying images.

Schizophrenia

I called my psychiatrist after the food court event and was told to stop Wellbutrin. I also scheduled an appointment with her and during my visit I told her in more details about the day with the old women. The old women that were in the food court, in dozens, silently asking me to help them die. On the way back from work that say day I also found apartment buildings with no balconies terrifying. Those apartments must have also had old women trapped in them. They could see the world and life pass them by only through the window. There were no balconies there on purpose, it was so that they could not jump. The society was forcing them to exist, not live but exist, in this abandoned state, they were being mentally tortured.

At this point the psychiatrist saw that this was not just major depression but a psychotic episode. I heard the words schizophrenia, schizoaffective disorder. She said it is common to have an onset in your early twenties. I was exhibiting paranoid symptoms, delusional thoughts. All the symptoms matched. There is no medical test do diagnose schizophrenia though, the diagnosis is based on a psychiatric evaluation. I was taken off Wellbutrin and risperidone, which is an antipsychotic, was added to mirtazapine. I do forgive the psychiatrist for this misdiagnosis, but more investigation should have been done after it had become clear that I did not improve on antipsychotics. I also mentioned multiple times my physical symptoms which I have already described – brain fog, eye inflammation, migraines, fatigue, abdominal pain, etc. All these physical symptoms were regarded as separate by the psychiatrist, and not related to the psychiatric symptoms.

Unfortunately a misdiagnosis of schizophrenia or psychotic disorder is a common one for patients with autoimmune encephalitis. I hope me telling this story will bring more awareness of this disease and that autoimmune testing will be considered for psychiatric patients.

As I said, I did not improve with risperidone. Risperidone was then switched to olanzapine and trazadone was added for insomnia. I was still on mirtazapine, now on increased dose. Lorazepam was added for anxiety. Four psychotropic medications in total but I was not doing better. I continued to have panic attacks, mostly they would occur if my boyfriend or my parents did not pick up the phone. Even if it was for five minutes, I would feel completely abandoned and the instant thought was that they are in danger or already dead. There were many times when I arrived at my boyfriend’s office looking for him, making up excuses to the security guards about a relative in the hospital. I would blame him for torturing me and causing me these emotions by not picking up his cell phone and I would become violent. Many times 911 had to be called.

My brain was in constant fear mode and I would say that from reading about and speaking to other people with autoimmune encephalitis, fear is one of the key symptoms. I also continued to have what my psychiatrist called ‘ideas of reference’ – anything that I saw or heard was somehow related to my being, my current life or my future. Hearing some one mentioned their cousin would bring me great emotional pain as I was instantly reminded that my cousin lived in Russia and we were separated by an ocean. The word ‘cousin’ itself would be emotionally painful. A picture of a family on a poster ad would seem to be laughing at me and telling me that I did not deserve to be with other people, I was bound to be alone. There was emotional pain in everything that I saw and heard. I could no longer go into Starbucks because they always had music on and I could not tolerate the sounds. One evening for distraction I tried to watch a movie, ‘A Streetcar Named Desire’, but I had to stop because the story of Blanche making me more paranoid. I became certain that the movie was about me and there was a message in it specifically for me – the message was that I was not willing to accept that I had gone insane but everyone else around me already knew it and soon I would be locked up in a mental institution.

I continued to work full-time but it was becoming extremely difficult. I was having a hard time waking up. My body felt heavy and my eyelids swollen, I felt that the eyelids were being pushed down and I had to put effort into keeping my eyes open. I would often be overcome with panic at my work desk. My hands would become sweaty and breath uneven. I would have an urge to run out to the stairwell as I believed that everyone was observing and judging my emotional state. Olanzapine had also made my thoughts slower and I was not able to code, which was required for my job. It would take me twenty minutes to write a simple loop because I could not retrieve the necessary thinking process. I knew that this task was something that I had done before many times but  a link was missing between my memory and actual implementation. I started missing a lot of work because some nights I did not sleep at all or because I was left too exhausted after  a panic attack. I had no sick days since I was on a contract, therefore had no benefits, and soon I was let go. The psychiatrist still insisted on further antipsychotic treatment even though I was only getting worse and olanzapine was replaced with latuda.

At that point I saw in front of me only a dark narrowing tunnel and non-existence started to seem more and more appealing. I contacted the euthanasia clinic in Switzerland, Dignitas, and I started to research suicide methods. I ended up buying hibachi grills and a bag of charcoal as from my understanding that is a reliable and practical method, frequently used in Asia. I did once go out in my car in the evening with this equipment and sat for a while in an empty dark parking lot beside a park. My parents and my boyfriend called the police and I was again involuntarily hospitalized. The hospital stay was not very useful as  I ended up being there only for one night and all they did was prescribe me clonazepam and told me to see my psychiatrist. The next time I went my mom came with me. With all the antipsychotics and my symptoms worsening I was not very active during my visits, I also did not have any ideas of what I could ask for. My mom on the other hand was much more proactive (makes sense, considering that I was trying to commit suicide), and she demanded MRI tests. She was also frustrated with continuous antipsychotic treatment since I was only becoming more suicidal, and started to do her own research online. By research I mean googling. We are lucky that we can do that nowadays. As an efficient googler and being a mother, so having more interest in my well-being than my psychiatrist, she put all my symptoms together into a more coherent picture. I had weight gain, fatigue and bad skin – those could be symptoms of thyroid disease. I also had abdominal pain and bloating – celiac disease and gluten intolerance came up a lot for those symptoms in google search. My thyroid hormone levels were normal though, we already knew that. Something else came up though – hypothyroid mom website, where many women told their stories of having normal thyroid hormone levels and yet felling awful and depressed. All these women wrote that they had elevated thyroid antibodies, Anti-Tg and Anti-TPO, and were given a diagnosis of autoimmune disease.

I now probably read at least one article on autoimmune disease a day but in 2016 I had no idea that such a condition existed. I thought there was cancer, heart attacks, diabetes and dementia. Well also schizophrenia and depression. Of course also tropical diseases but I was in Canada, so those were irrelevant. I had never heard of a disease where your own immune system produced antibodies that attacked your organs. From what the psychiatrist whom I saw seeing told me – you either had low serotonin levels and were depressed or you have hyperactive dopamine signalling and you have schizophrenia. In her opinion I had both and that’s why I was on antidepressants and antipsychotics. She did say though that there is a 30-30-30 rule in regards to antidepressants – about 30% of patients get out of the depression with medication, 30% improve and then relapse, another 30% don’t notice any positive effects. (Actually it should be 30.3333% for each, should add up to 100, to be exact).

The dopamine hypothesis has not actually been proven – how do we know that everyone who was diagnosed with schizophrenia has too much dopamine? Do we measure it? No. Schizophrenia is diagnosed by a psychiatrist based on a verbal  consultation with the patient about their symptoms. Some researchers thing that schizophrenia is actually a number of disease, just the symptoms are similar. There is also a hypothesis that a significant percentage of patients with schizophrenia are cases of autoimmune disease.

Autoimmune attack behind some cases of schizophrenia

So in June 2016 I went for a blood test and results came back positive. I had high levels of Anti-Tg and Anti-TPO antibodies. I had now a diagnosis of autoimmune disease, Hashimoto’s thyroiditis at that point, and was undiagnosed with schizophrenia. Yes, that can happen, you can be undiagnosed. My psychiatrist said that autoimmune diagnosis changes everything and I was taken off most of the medications, I only kept Sertraline, until October. I also had an appointment with an endocrinologist and he prescribed me Cytomel, which is the manmade version of the thyroid hormone T3. It was prescribed not because I had issues with thyroid hormone levels, my hormones were normal, but it was added in hope to help with fatigue and depression.

T3 augmentation of SSRI resistant depression

From this point on I spent many hours reading about autoimmune diseases and trying to figure out what happened to me. I continue with my story in part 3 and describe how I came to be diagnosed with autoimmune encephalitis.

Autoimmune Encephalitis Story (part 3)

Autoimmune Encephalitis Story (part 1)

“You asked me once,” said O’Brien, “what was in Room 101. I told you that you knew the answer already. Everyone knows it. The thing that is in Room 101 is the worst thing in the world.”

— George Orwell, 1984.

I have been misdiagnosed with schizophrenia and after a while diagnosed with autoimmune encephalitis (Hashimoto’s Encephalitis), in April 2017. It has been a long way for me obtaining a proper diagnosis and I would like to share my experience.

It’s hard to pinpoint a specific moment when my symptoms started because the onset was very gradual. Perhaps this type of autoimmune encephalitis is a genetic condition from birth and symptoms worsen over time? There is a lot we still don’t know about the pathogenesis of AE.

Childhood

As far as I can recall, I had low self-esteem and anxiety issues. Also I remember very clearly a few episodes from childhood where I experienced a sudden onset of dread and a sense of claustrophobia. One event was very terrifying. I was probably five or six, I was lying in bed trying to fall asleep, when suddenly the closet near the wall started to enlarge and bend in towards me. The walls of the room were shrinking, and even though my mom and my brother were just in the next room, I suddenly felt completely isolated, becoming trapped by the gigantic closet. I jumped out of bed and ran out of the room. The presence of other people in the living room and their voices calmed me down.  This episode did not repeat and I never mentioned it, until almost twenty years later.

20 years later

I used to be a pretty active person. While doing my bachelor’s degree in economics and finance, I was also learning French and started to play the violin. I often went camping, when the weather allowed, as well as hiking and downhill skiing. I never felt very good about myself and I did experience anxiety due to that, but I did have a keen interest in life. I rarely felt bored and I had many plans such as learning Mandarin, writing a book, and becoming a better violin performer.

2012

In the end of 2012 I was in the process of doing my master’s degree in economics. Due to my constrained budget, I lived in a basement at that time, an arrangement which I was not very happy about. I started to notice a swelling under my left eye and I became concerned that I was having a reaction to mold that could be hidden under the baseboard. I did go to the university walk-in clinic but the attending doctor said that she did not see any swelling or the prominent eye bag that I was talking about. I was not satisfied with the answer and in general I was becoming less satisfied with everything. The graduate program was quite stressful for me and I was also living away from my boyfriend and my parents. Few people will tell you that grad school is easy, so increasing feelings of anxiety during this time did not seem to be a reason to see a doctor.

One evening in November I stayed alone at my boyfriend’s bachelor apartment. We were both there during the day and in the evening he left to a friend’s party, to which we were both invited. I did not join him and said that I had to study. I did have a lot of course readings to do but I did not mention that the main reason was something else.  I chose not to go to the party because I sensed that I was not wanted there. My boyfriend’s ex-girlfriend was going to be present and in my mind it became evident to me that my boyfriend would be ashamed of me in front of her and other people. I imagined how everyone would be glancing at me with a look full of pity, they would not say anything to me directly, but they felt sorry for me and at the same time would be embarrassed by my presence.

These thoughts about my inferiority became quite persistent and my mood was very low. Once my boyfriend left for the party, I stayed alone in the apartment and tried to continue reading the econometrics textbook. I tried to understand the text but I started to feel lightheaded and the concept discussed in the paragraphs was slipping away from me. The room seemed too dark and I turned on a table lamp but a sense of enclosing darkness continued. And suddenly it happened – the terrifying experience that had occurred almost twenty years earlier. A sentiment of dread and claustrophobia came over me and I had an urge to run out of the apartment. It seemed that time had stopped and everything outside the room had ceased to exist. The walls were closing in and the space of existence was becoming smaller and smaller. There was also a tremendous sense of loneliness – did anyone know that I existed in this room, would I ever experience human contact again? It was a primal fear – fear of being isolated from the tribe, it was paralyzing. I didn’t know what to do except to call my boyfriend, I needed to hear a human voice, I needed a confirmation from someone that they knew I existed. The voice at the other end of the line did have a calming effect on me and the episode passed, I returned to my studies.

I did not know how to explain what happened to me and I thought that it was due to staying alone on a Saturday evening. It seemed logical that since I was used to going out on the weekend, and previously I had also lived with my parents – so I was not alone in the evenings, this event of staying alone had caused the sense of fear and isolation.  My conclusion was that the graduate program was negatively affecting my lifestyle and that I needed to go out more. This was contradictory to the facts, since I did not go out that evening in the first place due to feeling very inferior, but at the time the conclusion made sense. It’s clear to me now that these were the first symptoms of delusional thinking that would later on develop into psychosis but it would be another three years until I would see a psychiatrist for the first time.

More symptoms and no answers

As I continued with the graduate program, I started to have episodes where I would feel very overwhelmed and suddenly would experience a loss of identity. In those moments I did not have a clear understanding of who I was, what I knew, whether I knew anything at all. I would also loose a sense of having a personality and then a feeling of panic would creep in as I would become convinced that soon I would lose all human contact because having no personality meant that I would not be able to hold a conversation. I would then go in my mind through all my previous interests and that could calm me down a bit and bring me back to reality, but still these experiences of intense fear were happening more and more frequently. Also there were more episodes of feeling very dizzy, not able to concentrate, feeling lightheaded, a sensation of what is usually called ‘brain fog’. These episodes were usually occurring after meals, so I became afraid of eating. My face had also visibly swelled up and I was rapidly gaining weight. At the start of my master’s degree (2012/2013) I was underweight, as I had been my whole life, but by summer of 2014 I had gained almost 20 kilograms. I often had burning eye pain and my eyelashes and eyebrows were falling out. I had so many symptoms that it was very difficult to describe them all together in a coherent story and visits to the doctor did not result in any answers. The only diagnosis that I received at that time, after several doctor visits, was chronic gastritis, acid reflux and IBS.

More graduate school and some antibiotics

After completing my master’s degree for some reason I decided to get even more stressed and went for PhD. Looking back now, it’s clear that by that time I already had serious health issues that were progressing rapidly and I should have focused on investigating them. Maybe I did not want to accept that the problem was very serious and I was hoping it would go away on its own. Also because there were so many symptoms I didn’t even know where to start. I was already told that I had gastritis and acid reflux and was given omeprazole for that. About my swollen eye I was told that the issue does not exist. I was therefore not even sure what to do next – do I keep talking about my stomach pain and abdominal bloating? The doctor already said that was IBS and there was nothing they could do about that. The swollen eye and face symptoms did not exist according to the doctors. The dizziness ? I mentioned the symptom but it was never addressed.

The left side of my face was becoming more swollen, but I was very concerned about my course work, so I only decided to go to the doctor again when I got a shooting pain in my jaw accompanied by a rotten taste. Actually I went to a dentist, not a family doctor. The dentist ended up finding a dead nerve in a tooth and an infection. Soon after that I had a root canal and was given antibiotics for a month. The jaw pain diminished, the infection went away, and my face regained some of its original shape. At that point I really hoped that somehow that was it – the tooth infection was the problem! I wanted to convince myself that the problem was simple and that now it was gone – the dizziness, fatigue, anxiety, the swelling – this all was probably due to a prolonged exposure to tooth infection. Now after antibiotics treatment it should all clear up.

A confusing summer

It’s hard to describe what I was thinking that spring and summer following my antibiotics treatment in January, which was supposed to ‘clear everything up’. My thoughts were all over the place but I remember clearly what I was feeling at that time – anxiety and more anxiety. I was studying economics but I started to panic that I won’t be able to find a job unless I was a programmer, so in addition to my course work I started studying Python. I became convinced that actually I was meant to do computer science but somewhere I made a wrong turn, I had to catch up. This was not the worst idea that I had. More destructive was the thought that my boyfriend had plans to leave me. I did not think that he was cheating on me, it was a more bizarre idea that he had developed a plan together with another girl, whom he rarely saw, that he was going to leave me, but not yet, they were waiting. I am not sure what they were waiting for though, because the idea does not make sense and now I don’t even remember it fully. I do know that the girl was working as a software developer and therefore it was very clear to me that of course he would only want to be with some one who is in computer science. I was not and she was, therefore the girl was superior to me. One day, before one of my exams, I saw that my boyfriend received a text message from the girl. I did see that mostly they talked about some software development topics, but I started to believed that it was sort of a secret code. The message triggered a panic attack and I could not calm down even the next morning. I was supposed to drive to the university to write my exam but I physically could not do it. My boyfriend drove me and when we got there I refused to come out of the car. I was sure that once I came out he would speed away and I would never see him again. He would change the locks on the door or secretly move to another city all together, and he would do all this within the few hours that I would be away. He did finally convince me to go to my exam but it was useless because I barely understood what the questions were about and the whole time I was thinking that I needed to get out of the classroom as soon as possible. I handed in a paper with a lot of blank answers and ran to the bus station. I did end up failing that exam.

Autoimmune Encephalitis Story (part 2)