Helminthic therapy – hello parasites!

So today is day five since I infected myself with parasites. With seven larvae of Necator americanus, a species of hookworm, to be exact. I have never heard of helminthic therapy or helminths until about a month ago, then I was sent a link to a Facebook group by a girl from adult PANDAS/PANS disease support group. Supporters of helminthic therapy have put a lot of effort and created a great wiki section with all the necessary information, you can find it here:

Introduction to helminthic therapy

The idea behind helminthic therapy is based on the same theory as probiotics for depression and autoimmune conditions. With the onset of industrialization we started living in more sanitary conditions, we stopped drinking unpasteurized milk, we no longer spend time with cattle, we don’t milk cows with our bare hands. Well all of this had many benefits – childhood mortality rates decreased dramatically, a lot of children actually used to die from infections obtained while drinking raw milk. Especially given that there were no refrigerators, often by the time the milk got to your house, it would be already somewhat spoiled. There are consequences through of this reduction of contact with bacteria. It seems that there has been depletion in the gut microbiome and decrease in its diversity. We have also lost our macro-biotics – helminths. Helminths are intestinal worms and humans have usually lived their whole life infected with them. People still do in less developed countries, but it’s rare that someone in US or Canada would have these parasites.

Helminthic therapy is experimental, there is no concrete proof that it will help, but the statistics based on user experiences show that 75% of users experienced reduction in their symptoms. Helminthic therapy is also safe because the parasite species that are sold for therapy are not able to reproduce within the human host. Therefore if you infected yourself with ten parasites, you will not end up with thirty in two weeks, then fifty, etc.You will continue to co-habit with the ten worms, if they all survive. Also from what I’ve read, it’s quite easy to get rid of the parasites if you want to, by taking anthelmintic medication.

How can helminths help?

The therapy works by inoculating yourself with larvae either by swallowing it or through skin contact, depending on the species. I chose to get infected with Necator americanus (NA), a species of hookworm, these get to the human intestines  through skin contact. Like all organisms, helminths want to feed and survive. They attach themselves to the walls of the intestines and drink human blood. NA are very tiny, about 1 cm, therefore the amount of blood that you loose given a small number of worms is insignificant. The little guys want to survive and stay in the intestine, they like it there, so they put effort into not being kicked out from the body by your immune system. The exact mechanisms of what helminths do to survive is not yet known, but possibly they excrete some molecules that train the immune system to not react to them. They tweak the immune system to be less active and this seems to be beneficial. In general users found that their immune system worked as well as before in terms of fighting dangerous viruses and bacteria, but their autoimmune symptoms lessened. That is the exactly the outcome that I wish for from any therapy for my autoimmune condition, therefore I was sold on trying this experimental therapy.

Case studies

One parasite immunologist, P’ng Loke, has observed some case studies with human patients and found beneficial results from helminthic therapy. “The results of Loke’s new case study—the most recent of only five studies that investigate helminthic therapy in people instead of animals—suggest that helminths may ease the symptoms of autoimmune diseases by increasing mucus production.

Helminths could suppress immune disorders by promoting healthy mucus production in the intestine

You can read more personal stories on helminthic therapy wiki:

Helminthic therapy personal stories

Is it scary?

Not for me. Scary is doing nothing about my depression, thinking that it will never get better. Scary was imagining that the method with charcoal grills isn’t going to fully work and that I would end but brain damaged but still alive. Experimental therapy is hope, it’s exiting. I think I have already gotten quite far by not accepting my psychiatrist’s statement that my choices were either a state of psychosis or continuing being on anti-psychotics. I experimented with the autoimmune protocol diet, I received treatment with intra-venous steroids – not a standard treatment for depression. I built an incubator and started making fermented foods. The experiments were not randomly chosen, I have read multiple articles and came to a conclusion that these were the most promising methods for reducing inflammation. It did pay off, so I am all for further experimental therapy. I have started a blog this year, I got back to playing my violin. I am less terrified of staying home alone. I have more interest in things, just as I used to – not constantly thinking “what is the point of living”, but able to do something and enjoy it. Being able to simply watch a documentary on YouTube and be interested in it is already great progress for me. So I am all for experimentation, I am against staying in the same depressed spot.

Industrialization, autoimmune diseases, and depression

I used to think that I was in control of my own mind, but it’s clearly not the case. I don’t choose how to feel and how to emotionally respond to situations, just as I don’t choose when to feel hungry. I don’t choose my thoughts as well. I don’t know which thought is going to come next, it’s just going to pop up in my conscious mind and I will observe it, I will react to it. Someone recently told me that all the choice that we have in life is the direction of our view. We don’t choose our emotions, we don’t choose our thoughts, we don’t choose the environment around us, we can only turn our head and change the view, and observe.

That’s why doctors prescribe antidepressants – people don’t choose to be depressed and they can’t just “think their way out of it”. And sometimes antidepressants help, maybe for some people depression is just a lack of serotonin and SSRIs fix that imbalance. The chemical imbalance theory is not 100% confirmed, some scientists debate whether this is a cause of depression at all, perhaps antidepressants help some people not by increasing serotonin, but by decreasing inflammation. Autoimmune diseases are what can cause chronic inflammation.  This is when “the immune system prompts white blood cells to attack nearby healthy tissues and organs, setting up a chronic inflammatory process”. Turns out the brain can be affected by this process as well. “People who had been treated for a severe infection were 62% more likely to have developed a mood disorder than those who never had one. An autoimmune disease increased the risk by 45%. Multiple infections or the combination of severe infection and an autoimmune disease boosted the odds of developing depression, bipolar disorder, or another mood disorder even further.”

Infection, autoimmune disease linked to depression

Next I am going to speculate and talk about the possible causes of rising incidence of autoimmune disease. I am going to mention the idea that the lifestyle that we obtained through industrialization turned out to be pro-inflammatory. I am not proposing to go back to living in a village, but I want to propose making practical lifestyle changes that can help reduce chronic inflammation and in turn depression.

We are participating in less physical activity and are gaining higher body weight

One result of industrialization is we are eating more sugar, moving less, and weighting more. “How could carrying extra weight and sofa-sitting be connected to higher levels of inflammatory chemicals in the body and the development of diabetes?

Researchers discovered that excess body fat, especially in the abdomen, causes continuous (chronic), low levels of abnormal inflammation that alters insulin’s action and contributes to the disease.

The body becomes less sensitive to insulin and the resulting insulin resistance also leads to inflammation. A vicious cycle can result, with more inflammation causing more insulin resistance and vice versa. Blood sugar levels creep higher and higher, eventually resulting in type 2 diabetes.

Are Diabetes and Inflammation Connected?

We are eating high glycemic foods

We are eating more processed and high glycemic foods. The bread that people used to eat when they lived in villages was usually not the white bread from refined flour, it was sourdough, which has more nutrients, and a low glycemic index. I doubt anyone used to eat pasta, pizza, or fries often, if at all. I know that in peasant Russia there was fermented cabbage, sourdough rye bread, barley, and broth, sometimes meat and fish. Also fermented milk products. None of those foods have a high glycemic index.

According to Harvard researchers, healthy, middle-aged women who ate the meals with the lowest glycemic load had the lowest levels of C-reactive protein, a marker of inflammation in the body.

In overweight women who had greater levels of C-reactive protein to begin with, eating higher amounts of low glycemic index foods had an even greater impact on their inflammatory markers.

The Link between Glycemic Index, Diabetes, Inflammation and Heart Disease

We are eating fewer fermented foods

How often do you drink kefir or yougurt, eat kimchi or sauerkraut? Do you eat natto or fermented bean curd? Tempeh? Sourdough bread? Cassava fufu? If the answer is pretty often, I would say that’s good, but many people in US and Canada rarely eat fermented foods. Maybe sometimes yougurt, but it’s questionable whether store bought yougurt has live probiotics. Previously people ate fermented foods more often. They didn’t really have much choice since refrigerators weren’t available. Milk goes bad pretty quickly, so you need to make it into kefir or yougurt. In winter you don’t have fresh vegetables, you have fermented vegetables in jars that you prepared during the summer. Same with fruits. There have been several papers recently linking fermented foods to mental health, here is what is stated in one of them: “The extent to which traditional dietary items may mitigate inflammation and oxidative stress may be controlled, at least to some degree, by microbiota. It is our contention that properly controlled fermentation may often amplify the specific nutrient and phytochemical content of foods, the ultimate value of which may associated with mental health; furthermore, we also argue that the microbes (for example, Lactobacillus and Bifidobacteriaspecies) associated with fermented foods may also influence brain health via direct and indirect pathways.

Fermented foods, microbiota, and mental health: ancient practice meets nutritional psychiatry

We have lost our “old friends”

One of recent theories is that the rise in autoimmune disorders could be due to our gut microbiome depletion. With sanitary toilets, pasteurized milk, less time with animals (urban citizens rarely hang out with farm animals, neither do they milk cows, and now few even have pets due to smaller apartment sizes), we have lost many microbes and parasites that used to inhabit our gut. Turns out this might not be a good thing. It could be that because we as species cohabited with these organisms for so long, our immune system evolved to train on these parasites, and now we are lacking this training. “Diminished exposure to immunoregulation-inducing Old Friends in the perinatal period may enhance the consequences of psychosocial stressors, which induce increased levels of inflammatory mediators, modulate the microbiota and increase the risk for developing all known psychiatric conditions. In later life, the detrimental effects of psychosocial stressors may be exaggerated when the stress occurs against a background of reduced immunoregulation, so that more inflammation (and therefore more psychiatric symptoms) result from any given level of psychosocial stress. This interaction between immunoregulatory deficits and psychosocial stressors may lead to reduced stress resilience in modern urban communities.

Microbial ‘Old Friends’, immunoregulation and stress resilience

Do we need to move back to the village? Or to a cave?

Well I’m hopeful that I won’t have to, because my job is in downtown Toronto, and it would be hard to commute there from a remote village. I hope that given the recent research, we can use this information to improve our immune system function, while still living in a city. We can cook more food at home instead of buying processed food. I rarely buy anything at the food court during the work day, I bring everything from home. I am also making fermented foods – kefir, yougurt, sourdough bread, kombucha. I also purchased some at Asian grocery stores – they have fermented bean curd, natto, fermented Chinese cabbage.

In terms of moving around, I try not to sit at my desk at work for too long. I get up to make tea, go for a walk during lunch. Walk to the subway in the morning instead of taking the streetcar. Walk home after work with a friend. Gym I personally found very boring, but I do exercise at home with an aerobic step. Doctors suggest at least 30 minutes of aerobic exercise a day, heart rate needs to go up!

In terms of bringing back “old friends” – this can partly be done by consuming probiotic and prebiotic foods to increase gut microbiome diversity. There are also soil bacteria that are considered beneficial, we can obtain them by spending time near soil and breathing in the particles. Having a dog is stated to have beneficial effects on our gut microbiome. There is also experimental helminthic therapy – infecting yourself with parasites on purpose. I am planning on trying this therapy and I will write more on this topic later on.

Bacteria, yeast, stinky tofu, desire?

It has been now about three weeks that I started experimenting with kefir and fermented foods. I’ve been drinking kefir almost every day. Fermenting it every two days in a two-liter jar. I can easily drink one liter a day. I also made yougurt, using store-bought yougurt as a starter. Kefir and yougurt both from goat milk, as I mentioned previously – I don’t tolerate cow milk. What does it mean not tolerate? Well it gives me bad thoughts. Thoughts about people dying, about the meaninglessness of life. I don’t want those thoughts. Yes, correlation doesn’t mean causation, but I have this observed this increase in the intensity of negative thoughts after consuming milk so many times that it’s definitely worth it avoiding it. Also there are studies suggesting that there is a link between casein and immune response. Immune response could mean brain inflammation, it could mean psychosis. That is what I observe.

“Multiple studies have documented immune activation in individuals with schizophrenia. One antigen capable of inducing a prolonged immune response is bovine casein derived from ingested milk products. Increased levels of casein antibodies have been found in individuals with schizophrenia after diagnosis.”

Association between bovine casein antibody and new onset schizophrenia among US military personnel

So I have been consuming homemade kefir and yougurt. Currently brewing kombucha in a jar on my kitchen counter. I have also made a jar of probiotic apples and fermented a mango with yeast. I purchased an active dried yeast supplement, saccharomyces boulardii. I am trying to include all sorts of probiotics, yeasts too, not only bacteria. Bacteria and yeast are both single-celled organisms, both have cytoplasm and a membrane surrounded by a cell wall – that is what Google says. Yeast cells have a nucleus, while bacterial cells do not. Certain types of bacteria and yeast can survive in the human gut. There has been some research, and saccharomyces boulardii is supposedly one of those yeasts. It has been found to benefit patients with gastrointestinal diseases, it might improve the gut microflora. I took it in capsules that it is provided in, as well as opened one capsule into my mango jar and let it stand for two days. The taste has come out quite strong, but I don’t think it has gone bad, I did not get any stomach ache after consuming the fermented mango. Was not great for my taste buds, I might try adding some honey next time for fermentation, but my combination of consuming yeasts and bacteria from kefir, yougurt, kombucha, and fermented foods, I think had a positive effect on my mind.

One change that occurred was after two weeks of daily kefir consumption. I suddenly had a desire to play my violin, which I haven’t touched in six years. Ever since moving to Waterloo for grad school in 2012 and later on becoming depressed, I have abandoned my violin practice. After I was already out of school and had free time after work, I just had no desire to play. All music was emotionally painful for me. Also I felt that it was pointless  – I started learning at 19 years of age, that it top late, I thought, I would never learn to play well. Therefore the violin had been abandoned and was lying silently in its case at my parents’ house.

Last week though, when the desire to play occurred,  I did not have any of these doubting thoughts such as what is the point of playing,  would I be able to learn. I just wanted to play again and that is what I did. And that is beautiful,  this experience of undoubting desire, this is something that depression completely takes away from you. Depression is not wanting things that are part of this world, not enjoying them, having no desire. Only the wish for your experience in this world yo end. So was that occurrence a coincidence? I don’t think so. I don’t think desire suddenly appears after six years of absence without any chemical changes. I think the bacteria and the yeast in kefir had something to do with it.

“It’s been known for some time that one’s gastrointestinal tract functions in essence as one’s “second brain”, lined with hundreds of millions of neurons. In fact, the gut manufactures more dopamine and serotonin, important neurotransmitters that powerfully influence mood and motivation, than does the “head” brain.”

A Gut Feeling: Probiotics and Changes in Brain Activity

On Sunday there was a second event. I have to mentioned that ever since I got severely depressed, I gradually lost desire for anything. Playing violin was one of activities that I stopped. I stopped reading for please. Stopped writing in my livejournal. Everything seemed pointless, all activities fruitless. We are all going to die anyways and become nothing. I think last time I had my own idea was in summer of 2015 – I was very frustrated with Toronto’s public transit system and I decided to make an electric longboard. I succeed and it actually still works. After that I don’t remember pursuing any interests, my days were overwhelmed with feelings of intense fear, loneliness, sadness. Probably my brain inflammation intensified at that time, that is when I first got involuntarily hospitalized in a psychiatric unit. So having something to be exited about, a longing for an activity – I find that a dramatic improvement. No desire for me means no interest in life, desire is willingness to live.

The event then was that I suddenly found someone attractive. That hasn’t happened to me in years. Depression is loss of all pleasures. A loss of pleasure in reading, in traveling, in sex – in whatever you used to do. Attraction is the opposite,  attraction is desire. So yes, for me it was a big deal. It felt like waking up from darkness.

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.

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!