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.

Depression, inflammation, and what you could do

I am not a doctor, but I have been to many, so I am going to write out here the information that I have collected over the few years. The first step, if you are feeling depressed, would be going to a doctor. In Canada you can visit your family doctor if you have one, or you can go to ER. In October 2015 I was waiting for a subway train in the station and I thought of jumping under it. The thought was not spontaneous, I have been getting more and more depressed over a period of time. I told my boyfriend about my thoughts of jumping and he convinced me to go to the ER. I was terrified when the doctor who examined me said that I would be involuntarily hospitalized in the psychiatric unit. The first thing that came to mind was probably a scene from One Flew Over the Cuckoo’s Nest. Given that I was in a psychotic state, I imagined that my boyfriend and the doctors conspired to lock me up for an indefinite amount of time. Well, none of this happened. The law is that you can be involuntarily hospitalized for three days, and then your case has to be reviewed. Two opinions of physicians are required to maintain the detention.

Involuntary hospital admission – Canada

Actually I should say I got lucky that when I went to the ER I got seen by several psychiatrists and got to be examined for three days. At the moment there are not enough beds and not enough psychiatrists in Ontario, often people needing help are placed on six to nine months wait lists. Going to ER is therefore a good option because it’s more likely that there will be a psychiatrist available right away (yes, you might sit in the waiting room for five hours, but that’s not six months). Also blood tests would be performed to determine whether any health conditions could be causing your psychiatric symptoms. Tests performed could include the following:

  • TSH level to check for hypo/hyperthyroidism
  • Blood glucose level to check for diabetes
  • Iron/ferritin levels to check for anemia
  • Renal function (for chronic kidney disease)

In my experience doctors did not check for autoimmune diseases as part of the lab work, but if you are experiencing physical symptoms as well, you could ask your doctor to check this. Autoimmune testing:

  • Thyroid antibody levels (Anti-Tg and Anti-TPO antibodies) – high levels can indicate Hashimoto’s thyroiditis, also Hashimoto’s Encephalopathy (but this is quite rare)
  • C-reactive protein – marker of inflammation
  • Antinuclear antibodies (ANA) – checking for lupus
  • Rheumatoid factor – associated with rheumatoid arthritis
  • Anti-NMDAR antibodies – anti-NMDA receptor encephalitis (rare occurrence)
  • Celiac disease testing (it is also an autoimmune disorder)

Gastrointestinal disorders are also associated with depression. Individuals with gastritis are more likely to suffer from anxiety, panic attacks and depression. Depression and anxiety is also more often present in people with irritable bowel syndrome. If you experience any gastrointestinal/abdominal pains and discomfort, it’s important to visit a gastroenterologist. You can be tested for celiac disease. New research also indicates that many people who considered themselves having a gluten sensitivity actually had issues with high FODMAP foods. These are fermentable oligo di mono-saccharides and polyols, short chain carbohydrates and sugar alcohols. Personally I was diagnosed with chronic gastritis a few years ago, even before I got to the psychiatrist. The gastroenterologist who diagnosed me did not have any suggestions for me. A year ago I visited a different gastroenterologist, and she advised me to try a low FODMAP diet. I have been following it for a while, even after I stopped the AIP diet, and it definitely reduced my abdominal pains. Hopefully it is affecting my mood positively as well.

Gastritis linked to mood and anxiety disorders

Is gluten causing your depression

Once you talk to your family doctor or your psychiatrist about depression, if you do get diagnosed with depression, usually anti-depressants are prescribed. If you experience psychosis, anti-psychotics can be prescribed (on their own or along with anti-depressants). I am not a doctor, so it’s not for me to tell you which medication to take, but I just want to bring to your attention recent research on the link between depression and inflammation. I think no matter whether you do or don’t take psychiatric medication, it might be worthwhile to analyze your lifestyle and to think whether there are unhealthy aspects of it that you could change.

New research shows depression linked with inflammation

I know this may sound pointless – it may seem that no medication or lifestyle changes can help because it is life itself that is so meaningless, so emotionally painful, and how is that going to get changed? I used to get angry at suggestions by psychiatrists to attend therapy or my mom telling me to take fish oil. What does fish oil have to do with my life? How will it make me less lonely, how would it make life less dull and meaningless? The thought that helps me to try a suggestion is “what do I have to lose?” If I am already at the point where I no longer want to live, what will I lose by trying fish oil? Yes, it means I will agree to still be alive and try taking these stupid capsules, but I don’t have to be alive forever, it’s not possible anyways. I am not agreeing to suffer forever, I am just agreeing to stay alive for now, and to try.

Back to inflammation discussion – so for example you say “ok, fine, maybe I will try to stay alive, but so what? What is the suggestion?” Well my suggestion is in addition to discussing with your psychiatrist medication/therapy options, look into your daily diet and activities. From the article above, it is stated that the Journal of Clinical Psychiatry published a study with results indicating that increased inflammation in the body may be linked with depression. Inflammation is when there is a response from the immune system. Many different immune cells can be activated during inflammation and they produce different substances, such as antibodies (there are different types).

We need the immune system to be active to fight viruses and bacteria, but what the authors of the paper are saying, is that chronic inflammation does not help us and is damaging instead, reducing chronic inflammation may reduce depressive symptoms. PsychologyToday author in the article recommends avoiding fried foods, soda, white bread and pastries, margarine, lard, and red meat. In general highly processed foods and refined carbohydrates are considered to be linked with inflammation. White bread, white rice, pizza pops, hot dogs, salami, cookies, etc. In general a lot of doctors advise to follow a Mediterranean diet, which means reducing red meat, processed foods, refined carbohydrates and sweets. It includes eating the following:

  • whole grains/pseudograins (quinoa, brown rice, millet, oats, buckwheat, etc.); it is suggested to eat them whole and not in form of grain flour
  • poultry – turkey and chicken
  • fish, especially fatty fish like salmon
  • eggs (I suggest trying quail eggs!)
  • vegetables
  • berries
  • olive oil instead of vegetable and seed oils
  • legumes (checked whether you have issues with high FODMAP foods)
  • nuts and seeds (try finding those that weren’t roasted in vegetable/seed oils, you can eat raw nuts)
  • dairy – if you have issues with cow milk, there is goat milk; there is also goat yougurt and you can make goat kefir
  • some fruits

Mediterannean diet plan

I think no matter what you were diagnosed – depression, schizophrenia, bi-polar, etc., a healthy diet is very important. It’s very important for anyone. Our brain is just an organ like all other organs and it needs proper nutrients and can also get damaged, like other organs, by chronic inflammation. At first I was very skeptical about the correlation between diet and my thoughts, but then as I started experimenting with changes in what I eat, I noticed that it does affect what I think. Sometimes I am really tempted to buy ice-cream or something like that, but I just remind myself that for me it’s not worth it, it can take me to a very dark place. I just have to accept that as someone with diabetes has to watch their carb intake, I also have to watch what I eat because of my chronic autoimmune condition. This is just how it is, I have to accept that it’s chronic, and that I can’t just go to the food court and buy whatever I want. I mostly bring food from home or I buy from places that list all of their ingredients, so that I can make sure it doesn’t have gluten, cow’s dairy, a lot of sugar, high FODMAP items, etc.

Yes, it’s not pleasant having to worry about the ingredients each time you eat, but the benefit for me was a change in my thought process, and I find that the most valuable. Our thoughts and emotions are what matters because that is our experience of life, so that is the number one thing that I want to change myself, I want to have a positive life experience.

 

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!

Autoimmune Encephalitis Story (part 2)

First part of the story:

Autoimmune Encephalitis Story (part 1)

Confusing summer continued

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

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

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

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

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

Fun with psychiatry starts

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

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

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

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

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

Mirtazapine

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

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

Pleading faces

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

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

Schizophrenia

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

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

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

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

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

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

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

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

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

Autoimmune attack behind some cases of schizophrenia

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

T3 augmentation of SSRI resistant depression

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

Autoimmune Encephalitis Story (part 3)