Category: autoimmune encephalitis

Dealing with depression after encephalitis. After many years of trials, this is my current depression regimen, just wanted to share.

Hello everyone, I just wanted to share my current depression regimen and some situation info, in case anyone has similar health issues. I have experienced many hospitalizations since 2015, including involuntary psychiatric hospitalizations. Finally in 2017 I was diagnosed with autoimmune encephalitis (brain inflammation), as well as autoimmune thyroiditis. I was treated with intravenous corticosteroids and that led to some improvement. I continue to experience health issues, but I have made several life style changes that have helped me and that I wanted to share. Again, I was diagnosed with autoimmune disease, and my neuropsychiatrist believes that the encephalitis greatly contributed to my depression. Clearly it’s not the case for everyone, so I am not stating that this should work for all. I have been doing better since these changes, I was able to complete a graduate degree, get back to painting, and started writing and playing guitar again. These were huge improvements for me as I was not able to enjoy any hobbies when I had severe depression and was not able to pursue graduate courses.

  1. I cut out all refined carbs and processed foods. There is sufficient evidence indicating that these foods contribute to inflammation. I am not doing keto or low carb, I am not trying to be very strict with myself, I enjoy all sorts of complex carbs such as baked plantains, potatoes, oatmeal, fruits, berries, etc.
  2. Switched to low glycemic foods – this related to #1, as cutting out refined simple carbs in general does leave one with complex carbs that have lower glycemic index.
  3. Foods that cause an immune reaction – this clearly does not occur for most people, but some do react to certain foods. I noticed that I feel physically and emotionally worse after eating gluten, dairy, or soy, so I had to drop these from my diet.
  4. I go to sleep earlier and stay away from my laptop/phone screen after 9pm. I used to stay up late, but now I go to bed around 11pm. After 9pm I usually dim the lights in the room a bit and I read on my Kindle. Kindle Paperwhite does not emit a high amount of blue light. I also installed blackout curtains so that I spend the night sleeping in the dark.
  5. Sleep is very important – so when I really can’t fall asleep, I do use a cannabis oil (NightNight CBN + CBD oil). But changing my diet, losing weight, and going to bed earlier, did reduce my insomnia, so I don’t need the oil every day.
  6. Significantly decreasing my caffeine intake – personally for me it did lower my anxiety and the occurrence of panic attacks, I now only have green tea in the afternoon, otherwise I drink rooibos tea, water, kefir, decaf tea.
  7. Intermittent fasting – I do fell less brain fog and more clear headed when I am not eating the whole day. I used to surf the internet at 1am eating Sweet & Salty bars. Then my mind would go into dark places and I would start reading about serial killers. Now I eat two to three meals a day between 9am and 5pm, I fast for 16-18 hours a day.
  8. Seeing a psychologist – going through CBT and DBT did help, and this related to #5. I still experience racing thoughts, anxiety, and other issues, but I can now more easily choose to not follow my thoughts. For example – I did used to read a lot about US serial killers and then I would freak myself out and I would start to think that someone could climb through the window. Now I choose more what I read – should I keep reading about mass murders? What is the point of that for me? Will that change anything for the better?
  9. Sunlight – I try to get some sunlight each morning, if I have no energy to come out, I still stick out of the window and get some sunlight on my face.
  10. Exercise – I experience certain pains due to autoimmune disease, and fatigue, so I don’t do extensive exercise, but I do yoga at home. And by exercise I don’t mean that I do a whole hour after work, I do certain yoga poses occasionally throughout the day. I think that’s still better than no exercise.
  11. Shrooms – I did several shroom trips, at home alone, after I was treated for encephalitis. I haven’t done shrooms for a while due to pregnancy and breastfeeding, but the positive antidepressant effects of the trips still remain for me.
  12. CBT, again – accepting that some days are better than others, some are worse, but also seeing the positive – in general I am doing much much better now than in 2016. I am female, hormones fluctuate, I do feel worse during the luteal phase, but I experience a lot more enjoyable moments than before my steroids treatment and this lifestyle change.

A rare type of encephalitis

Encephalitis (inflammation of the brain) is rare in general, luckily, but in this post I will write about an even more rare cause of encephalitis. Primary Amebic Meningoencephalitis, or amebic encephalitis, is infection of the brain caused by microscopic ameba, a single-celled organism. Specifically, it is caused by naegleria fowleri. This ameba is found in warm freshwater, therefore it can be in lakes, rivers, and hot springs, it can be found in the soil as well. The ameba can enter the brain through the nose, and the infection is usually fatal. There have been cases in the US of this type of encephalitis – from lake water and tap water.

I know this happens quite rarely, and hopefully we will keep it that way, but some researchers predict an increase in the number of cases due to the rising average temperatures. Therefore it’s important to rinse your nose only with previously boiled water, and check any warnings by the municipality in regards to the body of water where you want to swim.

Rare brain-eating amoebas killed Seattle woman who rinsed her sinuses with tap water. Doctor warns this could happen again.

“I think we are going to see a lot more infections that we see south (move) north, as we have a warming of our environment,” said Dr. Cynthia Maree, a Swedish infectious-disease doctor who co-authored the case study about the woman’s condition.”

A great story of recovery from Anti NMDA Receptor Encephalitis

I recently had someone contact me in regards to their relative who was in a hospital, diagnosed recently with autoimmune encephalitis. It was an ongoing situation, and therefore extremely painful for them. Probably unless you are in the neurology field, or immunology, you have never heard of autoimmune encephalitis, unless it happens to you or someone you know. Most people think of brain injury being caused by a physical accident, such as a sports injury, by stroke, or by dementia. Very few people could imagine that a young person, twenty or thirty years old, could also receive a brain injury, from the immune attack of their own body.

The person who contacted me described their relative as being young, and previously completely healthy. Going from that state, to being in a hospital, held down due to severe aggression and violence, is of course shocking. I was asked whether myself I ever recovered, whether I was able to work. The person was concerned that their relative does not love them anymore. They did say after our conversation that talking to me gave them some hope, given that I also had similar symptoms of aggression and violence, swearing, believing that my close people were making plans on how to get rid of me. Not being sure if they were actually real, whether they existed, or only in my thoughts. It’s hard to describe that experience. And then going back to a much more normal state – being able to spend time with people as usual, not constantly finding secret meanings in their words, not seeing predictive signs everywhere. I also sent that person a story of recovery that I found on YouTube, and I hope it will add more hope for them as well. The young woman in the story clearly had a very severe case of encephalitis, as she was not able to recognize her parents and some point, she ended up in a coma, and currently does not remember those several months of illness. Also she provides important information on treatment in the video – for her it was specifically a combination of two chemotherapy drugs, Cytoxan and Rituximab. I think it’s important to know, as IV steroids or IVIG may not work for all cases of encephalitis. It’s good to know about other available treatment options, which as you can see, in some cases lead to great recovery.

Anti NMDA Receptor Encephalitis – Amanda’s Rare Autoimmune Disease Story

 

Autoimmune Encephalitis and Genes

I was involuntarily hospitalized for the first time in the psych ward in October 2015, in June 2016 I was diagnosed with Hashimoto’s thyroiditis, and then in April 2017 I was diagnosed with autoimmune encephalitis (specifically Hashimoto’s encephalitis). I was diagnosed also with coeliac disease, which is a permanent autoimmune disorder. That is a lot of diagnoses, all autoimmune related, and they all came in a short period of time (it’s not surprising though, because often people with an autoimmune disease tend to have more than one – this fact points to the genetic cause of a faulty immune system).

Since then I have done a lot of research on my condition, but in 2015/2016 I was probably still in denial. I remember being certain that my depression was due to only external circumstances such as my job, not having kids, small apartment, etc. I kept thinking  – I know it’s the bachelor apartment that is making me feel claustrophobic and trapped, I have never lived in such a small space, this is not how people should live, this is causing my depressive state. I was living in a small bachelor apartment together with my boyfriend and it was not enough space for two people, you start to irritate each other, and that could have been contributing to stress. But I also know that I was not accepting that something was also biologically wrong with me, that I needed to investigate medical causes. At that point I was already seeing a correlation between eating wheat and brain fog, but then I would go again to buy a chicken wrap and when my thoughts would become less clear, I still kept repeating – it cannot be the wrap, this seems very unlikely, it must be something else – probably I am allergic to mold in the apartment. It’s also very difficult to analyze the situation when your brain is getting worse daily and you don’t realize it.

The correlation between eating wheat and brain fog, based on my observations, was very strong though, and I did finally start eating gluten-free. Then I received my test results for antibodies associated with coeliac disease and the values were right at the threshold. To me this was a clear indication of disease, since even though I had been not eating gluten for a while, the antibodies were still present and the value was right at the point of making a positive diagnosis.

What also helped me understand and accept why I was hit with a number of autoimmune disorders. Several years ago I sent my saliva to 23andme and got back results telling me that I was mostly Eastern European (obvious to me) and Balkan (was a surprise). Also that I had increased risk of developing age-related macular degeneration. I thought this was irrelevant to my symptoms and I did not open 23andme again for a while. I logged in a few months ago and the website had been updated, there was a new result – Celiac Disease.

23andme_1

From 23andme – the variant tested is a change from a C to a T in the DNA sequence of the HLA-DQA1 gene. The rs2187668 marker is a tag SNP for the HLA-DQ2.5 haplotype.

From Wiki: DQ2.5 and the linked DR3 are associated with probably the greatest frequency of autoimmune occurrence relative to any other haplotypes. The haplotype is positively associated with coeliac disease, dermatitis herpetiformis, juvenile diabetes, Lambert-Eaton myasthenic syndrome (LEMS), Sjögren’s syndrome, and autoimmune hepatitis (although significant proportion of the risk is secondary to coeliac disease). DR3 and/or DQ2.5 are linked to the following diseases: Moreen’s ulceration, “bout onset” multiple sclerosis, Grave’s disease and systemic lupus erythematosus.

I can’t say that I felt great when I read this, but I was able to say to myself – “now I understand”. I was not unlucky to have an onset of autoimmune encephalitis, a very rare disease, I am unlucky to carry this genetic mutation, but given this mutation, coeliac disease and encephalitis are not so unlikely. How to use this information? I printed out my test results and handed them to my family doctor and my neuropsychiatrist. There is a difference between a one in a lifetime occurrence of brain inflammation after some virus and being genetically predisposed to multiple autoimmune diseases. Unfortunately it is the second case for me and I want to make sure that doctors are aware of this.

Another genetic mutation listed in my 23andme results is Gene: CFH. The variant tested is a change from a T to a C in the DNA sequence of the CFH gene. It results in a version of the complement factor H protein that may not be able to regulate the immune system as well. I have read about this mutation and did not find that much information, but it does mention that it also affects immune system regulation. Perhaps it is the combination of the two mutations – in the HLA and CFH genes that for me lead to development of several autoimmune diseases. Research and time will tell us more.

Following the MIND diet for autoimmune encephalitis and depression

So there has been the MIND diet going around. Some research indicates that it can reduce the risk of developing Alzheimer’s/dementia. The MIND diet is very similar to the Mediterranean diet. As most people know, that means eating a lot of oily fish, whole grains, vegetables, nuts, and beans/legumes. The MIND diet is a bit more specific – it recommends green leafy vegetables every day, berries (especially blueberries), whole grains three! times a day, nuts every day. You can see the list below:

Capture

Dietitians provide some information on how this diet might work: “A diet that supports vascular health is certainly protective against vascular dementia, but certain foods and food components have been directly linked to improved neurological function or reduced AD biomarkers in the brain.1,8 “MIND diet foods reflect nutrients shown to slow cognitive decline, lower risk of AD, decrease amyloid in the brain or neuron loss in animal studies, or decrease oxidative stress and inflammation”.

Food for Thought: The MIND Diet — Fighting Dementia With Food

Well since my brain seems to be screwed up, anything that might fight inflammation while improving neurological function sounds good to me! It’s also a lot less restrictive than the AIP diet or ketogenic diet. Definitely much easier than intermittent fasting. I see myself being able to follow this diet long-term. I want to eat my grains, I also haven’t found much evidence that excluding grains helps with depression or inflammation. I like to eat my quail eggs and goat yougurt, so I don’t want to be excluding eggs or dairy (AIP excludes these foods). I don’t think the strict AIP diet should be followed for a long time, neither the ketogenic diet. I am not even sure whether keto diet can help with inflammation and depression, it includes tons of saturated fat. The MIND diet researchers actually recommend limiting saturated fat.

So how do you follow the MIND diet list in practice? Green leafy vegetables every day, berries, olive oil, nuts… how do you fit all of that into one day? And what if you don’t like looking or don’t have time? What if you are not one of those people who post on their vlog about avocado toast? I came up with some quick recipes, here I will post my breakfast idea. The breakfast consists of onions (vegetable √ ), kale (green leafy vegetable √ ), cooked with olive oil √, yougurt with blueberries (berries √), also you can add some toast (I don’t eat gluten, but I make gluten-free sourdough buns  – whole grain flour √), or you can easily make a lot of brown rice pudding – also whole grain √.

I want to make this simple. This is for actual practical eating, now a decorative meal. I prepare several items in the evening so that in the morning I can cook my breakfast in several minutes. I start work at 9 am and I try to wake up as late as possible, I don’t want to be cooking for even fifteen minutes in the morning.

Ingredients to buy:

  • Buy some frozen chopped onions, chopped kale, olive oil, eggs. Yougurt, frozen blueberries, nuts/seeds. Bread/sourdough bread. I don’t consume cow milk, so I buy goat/sheep yougurt, I also make soy yougurt. I also eat gluten-free, so I make sourdough buns at home. I make a lot of buns and a liter yougurt at once, so I don’t have to do this every day.
  • Why frozen vegetables? Because they are chopped and I don’t like chopping. Also they don’t go rotting in my fridge if I forget about them. Also you don’t need to wash frozen vegetables. So many benefits!

Evening preparation:

  • Get a frying pan. I hope you have one in your house. You do need at least one frying pan for this MIND diet project. If you don’t have one – go to the Dollar Store and get one please. Place the pan on your your counter. 20 seconds
  • Take out frozen kale and frozen onions out of the freezer. 10 seconds20181101_213108           20181101_213148 
  • Place some kale and onions into the frying pan. Add salt, pepper, and olive oil. 30 seconds

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  • Place the pan in the fridge. The vegetables will defrost overnight. 10 seconds

Morning cooking:

  • Take out some eggs from the fridge, take out the pan

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  • Turn on the burner, place frying pan on the burner, leave it on medium-high for about five minutes. And don’t just stand there those five minutes, go brush your teeth, or something!
  • After five minutes crack the eggs onto the pan, mix everything together with a spatula
  • Fry for another three- four minutes
  • Place in a container and take to work, if you work in an office using a computer – you can easily enjoy eating while pretending to work
  • Take a jar of yougurt with you, add frozen blueberries – another item checked off from the MIND list

20181101_214224

  • Don’t forget toast/sourdough bread – because they say whole grains three times a day. Can be gluten-free. Eating toast should be easy, not like eating a bunch of kale. Toast is good!

So there, in one breakfast – kale – green leafy vegetable √ , onion – a vegetable , good enough! √, olive oil √, toast/sourdough – whole grains √

What else did they say… nuts? just add them to yougurt √ add blueberries √ don’t add oily fish to your yougurt… Χ

Wine? Well I think you can have that any time 😉

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!

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.