Yes, I am using this self-made incubator instead of Zoloft to treat depression

Here is my self-made incubator. It was constructed at home from several cheap and available components – a nice big Styrofoam cooler, a light bulb, a light bulb socket, a temperature controller, and some tape. That’s all, very simple. The cooler I got from Canadian Tire for about $14, light bulb, socket, and tape also from Canadian Tire. The temperature controller I purchased on Amazon for $35. What does the incubator do? The light bulb goes inside the cooler, so does the sensor from the controller. You close the lid and choose the desired temperature. The controller keeps the light bulb on until the chosen temperature is reached, then it turns it off. If the temperature drops, the light bulb is turned back on.

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How is any of this relevant to depression treatment? Well turns out that it is, and this incubator has been helping me a lot more than my previous trials of anti-depressants. I use the incubator to make fermented foods and research shows that eating probiotic foods can reduce chronic inflammation in the body and this in turn can reduce symptoms of depression. I have been making goat kefir, goat yougurt, sourdough, fermented fruits. I have also ordered a tempeh starter – spores of a specific mold, Rhizopus, that is used to ferment soy beans. I have also been buying natto (another type of fermented soy beans) in a Japanese store and eating it for breakfast.

It has been a bit more than a month since I started all this fermented food consumption and I think it has definitely improved my brain function in many ways. Correlation doesn’t mean causation, but I have noticed improvement in the way I think, the way I react to stressful events, my ability to sit down and spend time on meditation. I have rediscovered my interest in violin playing and my interest in the opposite sex. Last week I found my headphones because I wanted to listen to David Guetta in the subway on my way to work. Maybe that doesn’t sound like much, but if you’ve experienced severe depression and if you’ve seriously considered suicide, I think you would understand that this means progress. If you have experienced a state of mind in which your only desire was finding a way to end your life, then you know that going to a state where you have a desire for something else, anything else, is definitely an improvement.

I think therefore that constructing this incubator was the best decision this year so far. Last year the best decision that I made was pursuing immunosuppressant with intravenous steroids. I was treated with IV Solu-Medrol for five days in December and after that I saw my mind opening up. No, my depression did not vanish, but I started to have ideas, to be more proactive. Participating. I through of sharing my experience with autoimmune encephalitis, so I started a blog. I took the psychiatrist’s advice to do aerobic exercise in order to reduce brain inflammation. I researched further anti-inflammatory treatments and decided to build an incubator. I also became interested in helminthic therapy, so I learned how to use bitcoin and purchased some helminth larvae in order to infect myself. I don’t think this is all a coincidence, I think the steroids treatment did reduce inflammation that was there in my brain and some neural pathways opened up, more ideas started coming in. My tunnel vision became broader, the world became less black and white.

You can read my previous post about fermented foods and depression treatment here:

Bacteria, yeast, stinky tofu, desire?

My case of severe depression and improvement after immunotherapy is another piece of evidence supporting the idea that depression and suicidal thoughts are not always just caused by imbalance of serotonin, but inflammation can also play an important role.

Recently researchers at the University of Manchester conducted a study measuring level of inflammation in the brains of patients with clinical depression. “Dr. Talbot and colleagues measured the levels of translocator protein (TSPO) in the brains of people diagnosed with major depressive disorder. TSPO generally plays a role in the immune response system and cell death.

In the brain, elevated TSPO levels activate the microglia, which are immune cells specific to this organ. Microglial activation indicates brain inflammation, so this is what the scientists targeted.

People with depression who were experiencing suicidal thoughts were found to exhibit significantly higher levels of TSPO, associated with microglial activation and indicating inflammation of the brain.

Depression: Is brain inflammation tied to suicidal thoughts?

I was suffering from treatment resistant depression, but now I believe that it is not resistant, the treatment was just incorrect. I was put on mirtazapine, bupropion, risperidone, sertraline, multiple combinations of antidepressants and antipsychotics were tried. Well none of those combinations worked, but today I am still alive. I cannot thank my psychiatrist who continued to treat me with the same medications just in different doses and mixes, but I am thankful to all the researchers, journalists, and bloggers, who have written on the topic of the link between inflammation, suicidality, and depression. I am very thankful for Susannah Cahalan for her book “Brain on Fire: My Month of Madness” about her terrifying experience with anti-NMDA receptor encephalitis. I think, maybe not in the average psychiatrist’s office, but in general there has been progress in understanding the impact of our diet, lifestyle, and chronic inflammatory conditions, on mental health. Diet matters, exercising matters, so does our gut microbiome, blood glucose levels, inflammatory markers. All of this cannot be fixed by just taking Zoloft or Prozac and I believe that is why many people don’t get better on antidepressants. They are not treatment resistant, the right treatment is available, it just hasn’t been applied.

Cases of depression treatment with immunotherapy

I am such a case and I want to present other cases found in literature where depression/psychosis was ameliorated with immunotherapy treatment. Dr. Joseph Dalmau is one researcher who has written extensively about psychosis resulting from autoimmune encephalitis and I am very thankful to him for his work. The paper below is a good overview of 100 anti-NMDA receptor encephalitis cases. It’s interesting to note that 91 out of 100 patients were female. This is consistent with the general finding that that autoimmune diseases affect more woman than men. Also not all patients suffered seizures, it was 76 out of 100, therefore seizures are not a necessary symptom of anti-NMDAR encephalitis. I personally was diagnosed not with anti-NMDAR encephalitis, but with Hashimoto’s encephalitis. I had about two seizure-like episodes, but it’s hard to say if they were actual seizures. Given the patient stories from the Hashimoto’s encephalitis Facebook support group, I would say definitely not everyone experiences seizures with autoimmune encephalitis. My neurologist and psychiatrist stated that encephalitis can present itself as ongoing mild chronic inflammation. This can result in severe depression, black and white thinking, experiences of extreme fear, but present no severe physical symptoms. Anti-NMDAR encephalitis is usually not mild, but severe inflammation of the brain. The authors of the paper state that 25 out of the 100 patients were left with severe deficits or died even after receiving treatment.

Of 100 patients with anti-NMDA-receptor encephalitis, a disorder that associates with antibodies against the NR1 subunit of the receptor, many were initially seen by psychiatrists or admitted to psychiatric centres but subsequently developed seizures, decline of consciousness, and complex symptoms requiring multidisciplinary care. While poorly responsive or in a catatonic-like state, 93 patients developed hypoventilation, autonomic imbalance, or abnormal movements, all overlapping in 52 patients. 59% of patients had a tumour, most commonly ovarian teratoma. Despite the severity of the disorder, 75 patients recovered and 25 had severe deficits or died.

Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies

Below is another good case study of a patient who had ongoing depression for many years. The person was not able to work due to his psychiatric state, and his condition did not improve with psychotherapy or psychiatric medications. “At age 29, the patient found himself easily fatigued despite excessive sleep. His energy was persistently low. His capacity to be productive at work was drastically reduced. He was psychiatrically hospitalized for a major depressive episode and was treated aggressively with a combination of psychotherapy and pharmacotherapy…  By age 35, the patient could not sustain work because of persistent mood symptoms and cognitive dysfunction.” Unfortunately the patient got to a neurologist at the age of 39, after clearly suffering for many years, but better late than never. It was found that neurological testing returned some abnormal results, presence of brain inflammation was then confirmed and it was decided to treat the patient with intravenous immunoglobulin (IVIG) therapy. This treatment was quite successful in reducing the patient’s depressive symptoms.

Ten months after initiation of IVIG, a repeat SPECT scan showed complete normalization of frontal hypoperfusion. Of note, the psychotropic regimen remained essentially constant over this 10-month period. At the time of a neuropsychiatric reevaluation 13 months after starting IVIG, the patient reported significant improvement in his mood and much better control of his anxiety. His wife reported a positive personality change in her husband. He was much more active in general and more appropriately engaged with his family. He was more interested in socializing, and he became an active participant in raising his child.  In fact, he was excited to report that he and his wife were expecting a second child.

Brain Biopsy Findings Link Major Depressive Disorder to Neuroinflammation, Oxidative Stress, and Neurovascular Dysfunction

Here is another brief description of a 74 -year-old woman presenting with severe depressive symptoms, not responding to antidepressants, and then being successfully treated with prednisolone: “We report on a 74-year-old female patient with a severe depressive episode who showed no treatment response to citalopram 40 mg/day and venlafaxine 150 mg/day. Diagnostic examination revealed an abnormal EEG, elevated thyroid peroxidase antibodies (TPO-Ab), and older postinflammatory changes in thyroidal sonography. We diagnosed a depression in HE and began treatment with prednisolone 70 mg/day with stepwise dose reduction, continuing treatment with venlafaxine 150 mg/day. Within 4 weeks of treatment, the severe depressive episode disappeared as well as abnormal EEG. In addition, serum values of TPO-Ab decreased.

Depression in Hashimoto’s encephalopathy. Successful treatment of a severe depressive episode with a glucocorticoid as an add-on therapy

The following article describes the case of a 50-year-old patient who presented with depressive symptoms and cognitive impairment and was then diagnosed with Hashimoto’s encephalitis, after not responding to regular antidepressant medication.

“In 2011, after experiencing a noticeable loss of energy and feelings of exhaustion, the patient presented for evaluation of classic depressive symptoms, including melancholic mood, impaired concentration, and psychomotor retardation.

The patient had no prior medical history of psychiatric disorders, and had no family history of psychiatric, neurological, or autoimmune disorders. Physicians diagnosed the patient with major depression, and prescribed 112.5 mg venlafaxine and 25 mg agomelatine in conjunction with cognitive behavioral therapy (CBT).

After 2 years of CBT, the patient showed little to no improvement, with persistent memory loss, depressed mood, and reduced energy level.

This case sounds very similar to mine, as I did not have very pronounced physical symptoms such as multiple seizures. I complained to the doctors about constant fatigue and abdominal pain, and then I had to be involuntarily hospitalized due to severe depression and suicidal thoughts. I did not improve after treatment with mirtazapine, bupropion, risperidone, olanzapine, duloxetine, etc. I have also attended CBT sessions for more than half a year. This patient, like me, was finally diagnosed with Hashimoto’s encephalitis, and treated with immunosuppressant medication, after which the patient improved.

The patient was treated with high-dose methylprednisolone (1000 mg intravenously administered over 3 days; 500 mg over 2 days), which was well-tolerated. Methylprednisolone was then transitioned to oral dosing initiated at 40 mg and then tapered until discontinuation by halving the dose every fifth day. Venlafaxine, agomelatine, and T4 treatment continued unchanged.

The patient reported reduced cognitive impairment and improved alertness after steroid treatment, confirmed by neuropsychological testing. Basal alertness and processing speed were both improved, but remained below average. After 5 weeks, the patient’s mood and energy levels normalized and cognitive impairment had disappeared.”

An Uncommon Presentation of Hashimoto’s Encelophathy

Depression is an awful experience, it literally makes you not want to be alive. I’ve been there. Researchers are starting to have a better understanding of causes of depression and therefore there is hope. If you are suffering from depression resistant to standard antidepressant treatments, consider getting investigated for autoimmune disease/inflammation. I am very thankful to all the researchers who put this information out there and we are able to access it online for free. Learning about the link between depression and inflammation has definitely been helping me climb out from a very dark place.

Probiotics, biome restoration, could it helps with psychiatric issues?

Of course I am hoping that it could. As I have written in my previous posts, I went through a lot of conventional psychiatric treatments with no success. Mirtazapine, Olanzapine, Wellbutrin, Latuda, Cymbalta, Sertraline… you name an antidepressant or an antipsychotic, and I probably tried it. Also benzodiazapines – Lorazepam and Clonazepam. Dangerous little pills, doctors themselves say that you should not be taking benzos for longer than two weeks. Later on, after being diagnosed with Hashimoto’s Encephalitis, I was treated with IV Solu-Medrol and oral prednisone – glucocorticoids for suppressing the immune system. This was in December and I think I am better now, but I cannot say that I have no unwanted or obsessive thoughts. Since the treatment, and selecting that I eat very carefully, my physical symptoms did reduce, these thoughts are the main thing that tortures me. I could not stay on prednisone as it can itself cause psychosis and I experienced violent mood swings, migraines, and severe insomnia. For this reason I continue to look for ways to improve my brain. Or is it my stomach? I am more inclined to think that my main brain is in my stomach, given how sensitive my mood is to ingredients that I eat.

I have experimented a lot with probiotics, but did not find benefits from capsules. Maybe they don’t contain enough organisms or not many of them end up alive in the gut? My gastroenterologist recommended Align brand,  but the capsules contain casein from cow’s milk. I did try it for a while, but did not notice any improvements. After feeling somewhat better since receiving the steroid treatment, I decided to let go of the strict AIP diet and to introduce some foods. I had a craving for black tea with milk and yogurt, so I thought that maybe dairy is what I need. In fact I found it quite difficult to get enough calcium on AIP diet, probably I was lacking some. AIP followers do advise that you can obtain calcium from fish bones and kale, but you would really need to eat large amounts of very salty canned salmon or a whole salad bowl of steamed kale. I found it to be not feasible in practice. Also I have not tried goat milk before so there was no evidence that I would have an adverse reaction to it. I did not find that I do after consuming it. I have been adding goat milk to black tea and I actually found that this way the tea was smoother and felt less acidic, drinking black tea on its own often caused me gastric pain. I have started buying goat and sheep yogurt, turns out it’s now available in plain form at many stores in Toronto. In general, since adding the milk and the yogurt, I have experienced less frequent gastric problems. I have only experienced gastric pain when I ate a lot of bacon (maybe that was too much saturated fat at once?), and when I took naproxen. Gastric/stomach discomfort is a common side effect of naproxen, but unfortunately taking it during my period is unavoidable for me.

I have found several studies indicating positive benefits of goat milk, which also adds a benefit for me when drinking it, even if only a placebo effect.

Anxiety behavior is reduced, and physical growth is improved in the progeny of rat dams that consumed lipids from goat milk

Anti-inflammatory and anti-allergic properties of donkey’s and goat’s milk

I have been reading on the idea that human gut biome depletion could be causing many diseases, included neuropsychiatric ones. With the invention of clean water, sewage systems, hygiene practices, the rate of infections has been greatly reduced in developed countries, but it also led to lower diversity of bacteria and parasites in our intestines. The theory states that we evolved to co-live with these organisms and part of the rise in the number of autoimmune diseases in developed world could be caused by this gut biome depletion. In terms of restoring the biome, fermented milk and vegetable products are advised. There is also an experimental helminthic therapy, but I will post about that later. Kefir is said to be a fermented product that contains a great diversity of bacteria, more than yogurt.

What’s the difference between yogurt and kefir?

About three weeks ago I purchased live kefir grains on Kijiji for $5 and this was a great investment. Making kefir is even easier than buying kefir, it really doesn’t require much action. Place kefir grains into a clean glass jar. Pour milk over the grains, leave one inch at the top. Cover the jar with a coffee filter and tighten with an elastic. Leave it at room temperature for 24 hours and there you go, you’ve got kefir. Then you strain out the grains and drink the resulting liquid, repeat the process.

“The evidence for probiotics alleviating depressive symptoms is compelling but additional double-blind randomized control trials in clinical populations are warranted to further assess efficacy.”

The effects of probiotics on depressive symptoms in humans: a systematic review

How do I feel after three weeks? I think I am calmer. I am hoping this is more than a temporary placebo effect and that there are actually material changes. A few days ago I had a sudden desire to pick up my violin again, which I haven’t touched in years. At the most acute stages of encephalitis I could not stand hearing any music, it all would cause me a feeling of unbearable nostalgia and grief. Since the steroids treatment I have gotten back to creating playlists for workouts and now I even wanted to play music again. That feels like waking up from the dead. I vividly remember a day in the fall of 2015. At that point I had already quit my PhD and I was trying to apply for jobs, sitting in Starbucks. I tried to focus on sending out my resume, but I became overwhelmed with a feeling of grief. It was as if all sounds coming out from the speakers in the corner were trying to cause me pain on purpose, they were reminding me of someone who died, each note was screaming at me. I couldn’t stand it, I packed my laptop and left home. That was when I started to think that I really wanted to die.

I am at Starbucks now again, two and a half years later. I am typing this on my laptop and music is playing from the speakers, as usual. Right now I don’t have a sudden urge to run out, the sounds are not unbearable. I think my brain is healing, knowing that healing is possible gives me a lot of hope.

Auditory Hallucinations Simulation

I hope technology will help us to simulate others’ experiences. This is especially needed in psychiatry. I often found myself lacking appropriate words to describe what I felt. My previous psychiatrist misdiagnosed me with schizophrenia. There is currently no lab test to verify whether someone does have schizophrenia, my diagnosis was based on a verbal consultation. I don’t know what people with schizophrenia experience so I can’t know whether my experiences were actually similar or not. Did we all feel this extreme fear in the same way or was ‘fear’ just a common word that we used but our experiences were actually different? I’m sure many people out there, like me, dream of a machine that would allow us to project our feelings onto someone else. We don’t have such an invention at the moment, but the first step is through the use of audio and video. I discovered an interesting representation of auditory hallucinations on YouTube, link below. I know that it doesn’t convey the emotions that a person could be experiencing along with the hallucinations, but it is a start in explaining how schizophrenia/psychosis can affect a person.

Auditory hallucinations – representation

It’s better to listen to this audio in headphones in order to get a better simulation of the surrounding sound. Put on your headphones and try to go through the whole length of the audio. It’s quite unpleasant. It’s nice to know that any second you can pause the video. With real psychosis unfortunately you don’t know when it’s going to end. Psychosis also is usually not just hearing voices that aren’t there, it’s thoughts and emotions – panic, fear, distrust. How can someone know that they are having a psychotic episode versus rational thoughts that are unpleasant? The line is not clear. Recently I had an episode at work during which I kind of heard my boyfriend’s voice inside my head saying that what I did was a ‘low level job’, ‘it was pointless’, that he wouldn’t do such a job, that I was wasting my life. Was that a psychotic episode caused by my immune system acting up or does everyone experience such moments? I would say it was closer to psychosis as it was similar to the audio representation – the voice was not part of my thoughts, it was inside my head, but I could not control it. This seems similar to what people with schizophrenia describe about auditory hallucinations, but then many people without schizophrenia also complain about inside negative ‘voices’. Perhaps by ‘inside voice’ in general people really mean thoughts, and these are more under their control, unlike the hallucinations.

Below is another video of schizophrenia simulation. As one comment states, “This is KINDA accurate but you can’t really recreate the feeling of panic and doubt and paranoia. During an episode you’re possessed by so many emotions that a video just can’t convey.”

Schizophrenia Simulation

What I experienced in the most acute stages of encephalitis also could not be portrayed well with just audio or video. What I experienced was primal fear. Imagine maybe being in an airplane, a long trans-Atlantic flight. You are going 900 kilometers per hour, ten thousand meters above the ocean. Suddenly there is severe turbulence. You’ve experienced turbulence before, but not of this magnitude. You hope it will cease soon, because the pilots know what they are doing, right? But it doesn’t, there is another fall through the air, you can feel it. Perhaps before the turbulence started you were reading a book, do you think you will be able to continue? Or you were talking to the person you are flying with about housing prices, will you be able to hold the conversation, or will you be overwhelmed with the primal fear? The fear that we experience when we are suddenly reminded of our mortality with an added rush of adrenaline. And not just our mortality, but also the mortality of people who for us make our world. That’s what acute encephalitis episodes were like for me. It was like constantly being in that passenger plane above the ocean in severe turbulence. And if that goes on for long enough, when the fear is constantly present, you may then actually start to wish for the situation to resolve in any way, as long as it resolves quickly. I mean that you may wish for the plane to just fall quickly, you no longer believe in safe arrival, but you just want to already escape the fear and the anticipation of pain.

Autoimmune Encephalitis vs. Schizophrenia

I don’t have schizophrenia so I can’t say that I experienced it, but I was misdiagnosed with it, therefore it’s possible that some of my experiences are similar to those of people with schizophrenia. Unfortunately autoimmune encephalitis is often  misdiagnosed as a psychiatric disorder. I spent a lot of time in the Understanding Hashimoto’s Encephalopathy Facebook group and after talking to the women there, the commont story that emerged was that most of them were initially referred to a psychiatrist and treated with antipsychotics/antidepressants/benzodiazepines. I say women because the group members are mostly female, probably over 90%. Autoimmune diseases affect women more often than men and this seems to hold true for autoimmune encephalitis. Schizophrenia on the other hand is more common among males.

I am not a schizophrenia expert, but since my psychiatrist assumed that I had it and I was treated for it, from experience I can say that schizophrenia is usually treated with antipsychotics such as risperidone and olanzapine. Psychotherapy can also be recommended but in addition to the antipsychotics, it would not be enough on its own usually. Autoimmune encephalitis does not improve with antipsychotics. AE is inflammation of the brain that is caused by the immune system and it required immune suppression such as IV steroids, IVIG or plasmapheresis. Many patients have to stay on oral immune suppressants such as prednisone or Cellcept. Some get regular Rituxan infusions. Some patients do take antidepressants or antipsychotics in addition to the immunosuppressant treatment, but the first step should really be suppressing the immune system.

Autoimmune encephalitis often does cause psychiatric symptoms such as intense fear, panic, paranoia, delusional thoughts and depression. All these symptoms could be present in patients with schizophrenia. Schizophrenia is also much more common than autoimmune encephalitis, it affects about 1% of population. Since psychosis due to autoimmune reaction is quite rare, it’s reasonable for a psychiatrist to assume schizophrenia, schizoaffective disorder, or psychotic depression. I do think though that if the psychosis is present along with physical symptoms, a blood test for autoimmune conditions should be performed as well. I don’t think schizophrenia is associated with facial swelling, lightheadedness, brain fog, extreme fatigue, etc. Autoimmune encephalitis on the other hand does cause all these physical symptoms and more severe ones as well such as seizures and going into a coma. Also I think that if a patient has tried different antipsychotics for several months and has not responded to them, it’s probably time to consider that there might be a different cause and perform further testing. My psychiatrist for some reason did not consider this. I was not aware of existence of autoimmune diseases, it was my mom who suggested specific blood tests.

BBC – Some psychosis cases an immune disorder

Further on, once I started reading more about causes of panic, anxiety, and mood swings, I bought a glucometer and decided to check my blood glucose. My fasting blood sugar was checked previously at the hospital and it was fine, but after performing my own measures, I noticed a problem. After specific meals that contained high glycemic index foods, my blood sugar could stay at higher than 11 mmol/L two hours after eating. Diabetes UK states that blood glucose over 8 mmol / L two hours after a meal is of concern. Later on I spoke about these results to a doctor and she said I may have hyperglycemia. I also noticed feeling psychologically worse when my blood sugar was high. My point here is that if you are not responding to antipsychotics, there are further things to investigate. There is autoimmune testing – high levels of thyroid antibodies could indicate Hashimoto’s encephalitis, there are also other types of autoimmune encephalitis with different antibodies (NMDA receptor encephalitis, for example). TSH, free T3, and free T4 is a standard test to check the thyroid function, hypo/hyper thyroidism can also cause psychosis. Diabetes/hyperglycemia can affect your mood. Usually fating blood sugar is checked, but I would also verify blood glucose levels two hours after a meal with high glycemic carboydrates.

Diabetes UK – Diabetes and Hyperglycemia

 

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, quail 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!