Restarting probiotic foods

So I am restarting probiotic foods. I suppose I had a bad start when I went all in and started consuming everything at once – yougurt, kefir, sourdough, yeast supplements, probiotic capsules. I was also fermenting apples, vegetables, plantains, trying to make my own chickpea tempeh. Home fermentation could go wrong at some point, also I think the supplements were a bad choice. Maybe taking saccharomyces boulardii for a week could improve gut microbiome, but taking the capsules everyday for several months I think for me led to SIBO (small intestinal bacterial overgrowth, in this case there was also yeast).

I think at first when I started eating goat yougurt and drinking homemade kefir, I felt better. I remember there were several days when I was helping put up posters for a missing person – the man was my close friend’s co-worker. He was last seen at a bar on a Friday night but never made it home. I didn’t personally know the guy, but since I was putting up the posters and was part of a Facebook search group, I’ve learned a lot of details about his girl friend, his parents. A week later his body was found in lake Ontario and it really got to me. I know that this tragic ending of a search for a missing person would be painful for anyone in the search group, but with depression I think such event further triggers a cascade of negative thoughts about your own life. I didn’t know the guy, I didn’t know his parents, nor his girl-friend. It was their loss, this was not about me, but anxiety and depression always find a way to relate events to your own personal issues. I remember feeling overwhelmed with anxiety and physical pain, as if it was me who let something bad happened and now I would be punished for it. I couldn’t let go of the fear of punishment for things that were happening in the world. There was a sense that I had to fix them. Maybe when I was younger I would imagine that I have these feelings because I am a morally better person, but now I know that no, feelings of guilt and fear of punishment is depression showing through.

That weekend coincidentally was also when my first batch of goat kefir was ready. The day when I tried the first cup of kefir, I had continued sense of guilt and fear. I felt guilty for trying to feel well when such tragic things were going on in the world. I have already been through a lot of cognitive behavioural therapy by that point, so logically I understood that I was not obliged to feel unwell or be responsible for the world,  but the feeling was still there. This was more than a year ago, but I do remember feeling more calm the next day after starting goat kefir and letting go of some of the guilt. It wasn’t a complete relief, but I remember  no longer feeling overwhelmed and on the verge of tears.

Studies on probiotics and mental health are inconclusive. “A recent article in Annals of General Psychiatry reviewed the currently available medical literature on using probiotics to treat anxiety and depression. The doctors identified 10 studies that were well done (in other words blinded and placebo-controlled), and looked at each study in depth. All of these studies had relatively small numbers of patients, ranging as from as few as 42 to as many as 124. The results of these studies were mixed; some suggested that there may be mild benefits of taking probiotics if you have anxiety or depression while other studies showed no benefit. Overall, the authors concluded “the clinical effects of probiotics on mental health have yet to be studied comprehensively.” 

Can probiotics help treat depression and anxiety?

Probably just adding kefir to your diet will not cure mental issues, but I do enjoy drinking it, the sour yet creamy taste. It is also a source of calcium and protein. A glass of kefir has less sugar than a glass of milk since the bacteria and yeast from kefir grains break down the milk sugar lactose and convert it into lactic acid. “The only sugar naturally present is milk is lactose (is a sugar composed of galactose and glucose subunits). Most microorganisms lack the enzyme lactase which is required to break lactose into its two component sugars, namely, glucose and galactose. Lactic acid bacteria which do have lactase readily break down lactose and use glucose as an energy source. Lactic acid bacteria, therefore, have a competitive advantage in milk; that is, they are able to out grow other bacteria which are unable to obtain glucose from lactose. Further, some lactic acid bacteria are able to convert galactose to glucose.” Therefore when we drink kefir, the bacteria had already used up glucose and galactose for energy and therefore we don’t get glucose from the drink. When humans drink milk, it contains the sugar lactose. We have a protein named lactase that is produced in our small intestine. Lactose is then broken down by lactase into galactose and glucose, which is then absorbed into bloodstream. Therefore drinking non-fermented milk raises blood sugar more than kefir.

Is it safe to make kefir at home?

The good news is that fermentation of warm milk by lactic acid bacteria reduces milk pH to less than 4.0 and in turn makes the environment unlivable for pathogenic bacteria. Most organisms grow best at pH near physiological pH of 6.8, and not in acidic environments. I assume it would be great though for microbes from Yellowstone National Park acidic pools. these pools are usually of temperature ranging from 65 to 90 degrees Celsius and contain high sulfur contents, either as hydrogen sulfide (H2S(g)) emitted as a volcanic gas, or as elemental sulfur crystals. Who lives there – thermoacidophiles, a unique group of bacteria that are a combination of acidophiles and thermophiles. Thermoacidophiles are characterized by their exclusive ability to live in both highly acidic environments and also high temperatures. The typical conditions these thermoacidophiles live under include pH at around 2 with temperatures ranging from 80 to 90 degrees Celsius.

I am not sure if thermoacidophiles  are likely to contaminate homemade kefir, but I do sterilize my jars by pouring boiling water over them. Then I let the jar cool, place the kefir grains in, pour in milk, and cover with a coffee filter. I ferment my kefir at room temperature for 24 hours. Kefir is a versatile food as it can be drank on its own, used for smoothies, used to make tvorog (quark), syrniki (fried quark pancakes), and oladyi (fritters). Easy breakfast recipe – in the evening combine kefir, sorghum flour, ground oatmeal, egg, salt, and avocado oil in a bowl and let it stand overnight in the fridge. In the morning preheat a frying pan and then use the dough for fritters. Consume with honey and yougurt on top.

Who inhabits kefir?

The kefir grains initiating the fermentation consist of a symbiotic culture of lactic acid bacteria and yeasts embedded in a matrix of proteins, lipids, and polysaccharides. The matrix is formed by microbial activity, with color ranging from white to creamy yellow. Grains can include lactic acid bacteria, acetic acid bacteria, and yeasts. During fermentation, changes in the composition of ingredients occur. Lactose, the sugar present in milk, is broken down mostly to lactic acid (25%) by the lactic acid bacteria, which results in acidification of the product. Propionibacteria further break down some of the lactic acid into propionic acid. Other substances that contribute to the flavor of kefir are pyruvic acid, acetic acid, diacetyl and acetoin (both of which contribute a “buttery” flavor), citric acid, acetaldehyde, and amino acids resulting from protein breakdown. The slow-acting yeasts, late in the fermentation process, break lactose down into ethanol and carbon dioxide. Usually ethanol concentrations are 0.2–0.3%, so kefir is not much of an alcoholic beverage.

Probiotic bacteria found in kefir products include: Lactobacillus acidophilus, Bifidobacterium bifidum, Streptococcus thermophilus, Lactobacillus delbrueckii subsp. bulgaricus, Lactobacillus helveticus, Lactobacillus kefiranofaciens, Lactococcus lactis, and Leuconostoc species. Lactobacilli in kefir may exist in concentrations varying from approximately 1 million to 1 billion colony-forming units per milliliter, and are the bacteria responsible for the synthesis of the polysaccharide kefiran. In addition to bacteria, kefir often contains strains of yeast that can metabolize lactose, such as Kluyveromyces marxianus, Kluyveromyces lactis, and Saccharomyces fragilis, as well as strains of yeast that do not metabolize lactose, including Saccharomyces cerevisiae, Torulaspora delbrueckii, and Kazachstania unispora.

Kefir is made by adding kefir grains to milk typically at a proportion of 2-5% grains-to-milk. The mixture is then placed in a corrosion-resistant container, such as a glass jar, and stored preferably in the dark to prevent degradation of light-sensitive vitamins.

Hymenolepis diminuta observations and paper

As described in my previous posts, I have started HDC helminth therapy on June 4th. It has now been over a month. So far I have taken HDC three times – 10 on June 4th, 10 on June 9th, and 20 on June 25th. I have also updated my NA by adding three more on July 6th. It has now been over two weeks since my last HDC dose, helminth therapy wiki suggests dosing every two weeks and adult dosing is in range 30-60 HDC bi-weekly. I am waiting for my next order of 20, the delivery has been slow, and it’s expected to arrive on Friday. After that I plan to increase the dose to 30 as is advised, 20 may be not enough of a therapeutic dose for an adult.

One important observation is that during my period, which happened soon after the third dose of HDC, I did not have to take any pain relievers. I see this as not just a coincidence because last such occurrence happened almost a year ago in July 2018, after I started NA therapy. After that one time unfortunately pain levels during periods went back to usual unbearable and as usual I would take at least two Naproxen gels, sometimes also an ibuprofen. Several times I had to leave work early or work from home. Therefore I was quite surprised that when my period occurred in the end of June the pain began as usual but did not increase to unbearable levels. I went to work as usual, I always keep Naproxen in the drawer in the office and at home, but the pain never rose to the level where I would need a pain killer. I would say that just for this benefit HDC is already worth continuing as not being crippled by pain made me feel more free. Even though it’s not my fault, I often feel guilty leaving home early or asking to work from home every month. I am also not pleased with having to take Naproxen as for me it causes acid reflux and it makes me think that I am undoing the benefits of my efforts to heal the gut.

Another observation was recently increased heat tolerance.  In beginning of July temperatures rose to over 30 degrees Celsius and there is no central AC where I live. In order to cool down the house, I usually have to install two window air conditioner units. These units were taken down for the winter, so there were several days of temperatures around 30 degrees inside. I noticed that my sleep was not as disrupted as it previously would during heat. Also in general I was not as incapacitated by the temperature, I did feel lethargic, but did not have as severe indecisiveness nor mood swings exacerbation that often occur for me during summer heat.

The new lab test results are also encouraging. Free T4 and T3 stayed at the same levels, within normal range. TSH went down to 2.0, which is below the previous value of 2.58. This is a positive result, since some research indicates that the optimal cut- off value of TSH is 2.5 MIU/L. Anti-TPO antibodies have also decreased.

TSH cut off point based on depression in hypothyroid patients

test_jul2019

On a side note, I found that someone wrote their undergrad honors thesis on Hymenolepis diminuta. “Impacts of Hymenolepis diminuta (benign helminth worm) colonization on chronic pain and the central nervous system in Sprague Dawley rats“. If I would go back in time, I would prefer to also study neuropsychology. Unfortunately in my undergrad I was calculating bond and option prices. Glad to hear whenever someone is doing research on treatments for autoimmune disorders, specifically the connection between neuropsychiatric problems and inflammation. “The results from this project partially support the tenets of the hygiene hypothesis. Though behavioral results following CCI surgeries were inconclusive, molecular investigation of cytokine levels in the hippocampus showed promotion of an anti-inflammatory cytokine milieu due to the upregulation of IL-10 and downregulation of its receptor. These promising results guide future research toward investigation of cytokine levels in other brain regions, such as the amygdala.

Impacts of Hymenolepis diminuta (benign helminth worm) colonization on chronic pain and the central nervous system in Sprague Dawley rats

HDC Therapy for autoimmune disorders

HDC, hymenolepis diminuta cysticercoids, is a larvae stage of a nice and friendly rat tapeworm, an adult of this species can be 20-60cm long. You might have a thought now “what am I reading and why?”, but hold on. Humans are not the usual host of hymenolepis diminuta, rats are, and in humans this helminth does not develop into an adult. There have been very few cases documented of humans being infected with adult HD. For this reason the HD larvae, HDC, is one of the species chosen for helminthic therapy as it does not reproduce inside humans, stays in the gut, does not reach adult size, and yet modulates the immune system as it tries to survive.

HDC survive in humans only for about two weeks, therefore for continuous therapy, HDC would need to be ingested at these intervals. HDC will live in the small intestine and attach to the intestine wall. There are no reports in the scientific literature of H. diminuta mis-migrating to other organs in humans. In a scientific review of helminthic therapy from 2016, HDC was listed as one of the more popular helminths:

Five physicians monitoring more than 700 self-treating patients were interviewed. The results strongly support previous indications that helminth therapy can effectively treat a wide range of allergies, autoimmune conditions and neuropsychiatric disorders, such as major depression and anxiety disorders. Approximately 57% of the self-treating patients observed by physicians in the study had autism. Physicians reported that the majority of patients with autism and inflammation-associated co-morbidities responded favourably to therapy with either of the two most popular organisms currently used by self-treaters, Hymenolepis diminuta and Trichuris suis. However, approximately 1% of paediatric patients experienced severe gastrointestinal pains with the use of H. diminuta, although the symptoms were resolved with an anti-helminthic drug. Further, exposure to helminths apparently did not affect the impaired comprehension of social situations that is the hallmark of autism. These observations point toward potential starting points for clinical trials, and provide further support for the importance of such trials and for concerted efforts aimed at probing the potential of helminths, and perhaps other biologicals, for therapeutic use.

Practices and outcomes of self-treatment with helminths based on physicians’ observations

Here is another paper from 2017 reviewing HDC use by self-treating individuals. Unfortunately there are not many clinical trials with treatment and control groups, therefore we have to rely on information on experiences from people like me who are obtaining helminths and treating themselves. ” In this study, we describe the production and use of HDCs in a manner that is based on reports from individuals self-treating with helminths, individuals producing helminths for self-treatment, and physicians monitoring patients that are self-treating.” The authors from Duke University are quite optimistic about helminthic therapy: “Helminthic therapy, the use of helminths to treat disease, offers the best hope of decreasing inflammation via immunomodulation rather than immunosuppression, and probably also improves mucosal barrier function.”

Production and Use of Hymenolepis diminuta Cysticercoids as Anti-Inflammatory Therapeutics

I was glad to read that I already have access to the most hopeful treatment for inflammation. I have to say that I tried a lot of supposedly anti-inflammatory treatments  and was quite disappointed with most. Turmeric lattes, green tea extract, probiotic capsules, licorice root tincture…  Personally, I don’t really want to buy any more supplements, except basic ones such as vitamin D, since I live in cold and dark Canada, and occasionally I take fish oil on days that I don’t eat seafood.

The idea behind helminthic therapy, on the other hand, is quite logical to me. It’s not a promotion of another one magical super inflammatory ingredient. The logic is that humans and certain helminths have evolved to co-exist in a symbiotic relationship and therefore our immune system has also evolved  to be modulated by molecules that helminths produce. Recent eradication of helminths in humans in developed countries could be resulting in a destruction of a beneficial symbiotic relationship and increase in rate of autoimmune diseases.

“Graph the data points, and the trend is unmistakable. Since the 1950s, rates of multiple sclerosis, Crohn’s disease, type 1 diabetes, and asthma have soared by 300% or more (1). Similar graphs depict concurrent spikes in hay fever and food allergies (2).”

“Prevalence of food allergy in preschool children is now as high as 10% in Western countries, but remains just 2% in areas like mainland China (). The number of new cases of type 1 diabetes (T1D) in Finland per year is 62.3 per every 100,000 children, compared with just 6.2 in Mexico and 0.5 in Pakistan (). Ulcerative colitis, a form of inflammatory bowel disease (IBD), is twofold higher in Western Europe than in Eastern Europe—6.5 per 100,000 people versus 3.1 per 100,000 ().”

In each of these disorders, either the immune system is overreacting to a trigger, such as pollen, peanuts, or pollution, or it’s attacking tissues it shouldn’t, such as beta cells in the pancreas in the case of T1D and in the intestines in IBD.”

News Feature: Cleaning up the hygiene hypothesis

 

Celiac disease, vitamin and mineral deficiencies, and a beef patty

I’ve done something today that I probably haven’t done for at least a year or more. I bought a beef patty. I felt very guilty because I don’t want to eat large mammals. Ideally I wouldn’t eat any birds or animals, but we have to make practical choices. From my experience, having celiac disease, I don’t absorb vitamins and minerals well. A chicken leg of 100 grams has approximately 6% daily value of cobalamin, 6% DV magnesium, 7% DV potassium, and 25% DV B-6. Without eating meat or fish, you could try to get vitamin B-6 from beans, also fortified cereals contain B-6. Here is the issue – with celiac you cannot eat most fortified cereals and breads since they are not gluten-free, also eating too many beans causes digestive problems. So I had to make a choice and about a year ago  I chose to eat seafood and poultry, but not mammals. My reasoning is that compared to chickens and turkeys, large mammals such as pigs and cows have more complex brains and nervous systems and therefore have more complex emotions and might suffer more during their short life in a cage at a factory farm. I have no proof of that, but I had to make a choice.

Unfortunately recently I had to make another choice to start eating red meat again. I was experiencing lethargy and noticed white bands on my nails. Some sources stated that white spots on nails could be a sign of zinc deficiency, while others indicated that there was no correlation. This did lead me to wondering whether I was getting enough zinc, selenium, and B vitamins from chicken and salmon. 100 grams of beef on average contain 43% DV (daily value) of B12, 20% DV of B6. Dietitians of Canada also list beef as top sources of zinc, 75 grams of beef containing 4.0 – 8.6 mg of the mineral (women need 8 mg per day).  Chicken is much lower in zinc, 1.3 – 2.2 mg per 75 grams. Salmon was not listed as it is not a good source of zinc, it contains about 0.64 mg per 100 grams. Some studies indicate that it’s harder to absorb zinc from a plant based diet, in addition to that my absorption may be worse due to gut inflammation caused by autoimmune disease.

With reduced intake of meat and increased intake of phytate-containing legumes and whole grains, movement toward plant-based diets reduces dietary iron and zinc absorption.

Moving Toward a Plant‐based Diet: Are Iron and Zinc at Risk?

zinc1

Why do we need zinc and what happens if there is a zinc deficiency? Zinc is found in cells throughout the body and is needed to make proteins and DNA. Zinc plays a role in cell division, cell growth, wound healing, and the breakdown of carbohydrates. It is important for the function of the immune system and also the senses of smell and taste.

zinc2

Zinc deficiency can cause appetite loss, poor immune system function, diarrhea, eye and skin lesions, feeling lethargic, strange taste sensations, hair loss, weight loss, poor wound healing. Individuals with chronic conditions and poor absorption are more likely to be zinc deficient.

Zinc performs its biochemical functions as a divalent cation (positively charged ion) primarily when bound to enzymes and other proteins. Zinc is essential as a catalytic, structural, and regulatory ion and is involved in homeostasis (the tendency to maintain a stable, relatively constant internal environment), immune responses, oxidative stress, apoptosis (the death of cells which occurs as a normal and controlled part of an organism’s growth or development), and aging. Zinc is recognized as being important for stabilizing DNA and appears to reside in the nucleus longer than any other cell compartment. Therefore, it is possible that as intracellular levels of zinc increase, more iron will be displaced from nucleoproteins and less OH-driven DNA damage will occur.

Biological consequences of zinc deficiency in the pathomechanisms of selected diseases

A study on zinc deficiency in relation to psychiatry:

“Zinc participation is essential for all physiological systems, including neural functioning, where it participates in a myriad of cellular processes. Converging clinical, molecular, and genetic discoveries illuminate key roles for zinc homeostasis in association with clinical depression and psychosis which are not yet well appreciated at the clinical interface. Intracellular deficiency may arise from low circulating zinc levels due to dietary insufficiency, or impaired absorption from aging or medical conditions, including alcoholism. A host of medications commonly administered to psychiatric patients, including anticonvulsants, oral medications for diabetes, hormones, antacids, anti-inflammatories and others also impact zinc absorption. Furthermore, inefficient genetic variants in zinc transporter molecules that transport the ion across cellular membranes impede its action even when circulating zinc concentrations is in the normal range. Well powered clinical studies have shown beneficial effects of supplemental zinc in depression and it important to pursue research using zinc as a potential therapeutic option for psychosis as well. Meta-analyses support the adjunctive use of zinc in major depression and a single study now supports zinc for psychotic symptoms.”

The Emerging Role for Zinc in Depression and Psychosis

From my own experiment with N=1, I did feel better after eating a beef patty. This could be a coincidence, a placebo effect, or an actual effect of the minerals/vitamins in beef on my mood. I also thought of a substitute for beef that is not a mammal – mussels and clams. A 3-ounce serving of cooked mussels contains about 15% of daily value of zinc. The same amount of moist-cooked clams also provides 15% of the daily value for zinc. Clams and mussels contain high amounts of vitamin B12, selenium, and iron, as well as omega-3 fats. I think therefore it’s possible for me to continue avoiding beef if I include chicken, fish, mussels, and clams.

Green tea vs. infliximab and tracking thyroid antibodies

I continue to track my thyroid antibodies and I will post my results here in case this information will be useful for anyone. Trust me, I know how fluctuating thyroid hormones suck and what it means for you in terms of your mood, energy, sleep. Today is a work day and since my work place is quite formal, I should be there by 9am. Nine to five, the usual. Well I couldn’t fall asleep until 1am and woke up at 6am. I felt cold shivers and my palms were sweaty. I lay in bed for a while but it was no use, I could not fall back asleep. I did get to work slightly after 9, not very late, sat down in my cubicle, turned on my screens and stared at the code. What was I supposed to be doing today? I had forgotten. My hands continued to sweat and I had chills. Emotionally I felt as if a train had run over me. I couldn’t remember on what task I stopped at on Friday. I sensed such fatigue that I was finding it difficult to sit up straight.

Logically I knew the cause, it all happened as my endocrinologist said it would. After a period of hyperthyroidism, my TSH went to almost non-existent level and now instead of being too high, my thyroid hormones were quickly dropping. Lab test on February 1st showed that free T4 and total T3 were near their lower threshold and TSH was also low. Since TSH continues to be low, and it is the thyroid-stimulating hormone, it was not stimulating the thyroid enough to produce T3 and T4. Therefore it’s likely that today hormone levels were even lower and I went into hypothyroid state.

test_feb2019

So this is what’s going on with my thyroid. I think the hypothyroidism symptoms are definitely starts as I have been getting chills, freezing even when my thermostat is at 24 degrees, not having the energy to talk to people even though I did not want to stay home on a Friday night. In theory, according to my endocrinologist, after an acute hyperthyroidism again, there will be not enough thyroid hormones stores in the thyroid gland, and therefore levels will fall. After sometime function should restore to normal, but hypothyroid state could last 8 months. I will be waiting for this normalization and in the meantime I will keep trying to reduce inflammation, because what else is there left to do.

Recently I came across a paper on green tea and exercise intervention for arthritis patients. “One-hundred and twenty subjects who had a mean age of (60.7 ± 2.53 years) and had been diagnosed with rheumatoid arthritis at least ten years previously were randomly included in this study. Patients were treated with infliximab, green tea, or a supervised exercise program for six months. Disease activity markers as well as antioxidant activity of green tea extracts were estimated before supplementation using in vitro assays. [Results] Rheumatoid arthritis patients treated with green tea for 6 months alone or in combination with infliximab or an exercise program showed significant improvement in disease activity parameters, including C-reactive protein, and erythrocyte sedimentation rate, swollen and tender joints counts, and modified Stanford Health Assessment Questionnaire score, along with an increase in serum levels of bone resorption markers, i.e., deoxypyridinoline, amino-terminal telopeptide of type 1 collagen, and bone alkaline phosphatase, at 6 months of after initial treatment. The European League Against Rheumatism and American College of Rheumatology scores revealed more clinical improvement in the disease activity of rheumatoid arthritis patients treated with green tea along with exercise compared with rheumatoid arthritis patients treated with infliximab or exercise combinations.”

Green tea and exercise interventions as nondrug remedies in geriatric patients with rheumatoid arthritis

I know this is just one study and we should take the results with a grain of salt, but I see no harm in including green tea and exercise in your day. I want to note that I am not looking for only ‘natural’ treatments neither am I trying to prove that they are better. I am only looking for something that I can implement. When I was referred for IV corticosteroids treatment, I was happy to receive it and did see improvements. Since then I have not been prescribed any treatment even though I did ask for it. It’s possible that something like infliximab would work for me, but I have no access to it. I have Hashimoto’s thyroiditis, celiac disease, and autoimmune encephalopathy, but inflixiamab is a medication that is prescribed for rheumatoid arthritis.

Infliximab is a monoclonal antibody that suppresses some parts of the immune system. Infliximab is a lab made molecule that binds to a specific cytokine TNF-α (chemical messenger), which is one of the causes of autoimmune reaction. TNF-α is tumor necrosis factor aplha, a cell signaling protein involved in system inflammation. Wiki states that Dysregulation of TNF production has been implicated in a variety of human diseases including Alzheimer’s disease, cancer, major depression, psoriasis and inflammatory bowel disease (IBD). Though controversial, studies of depression and IBD are currently being linked to TNF levels.

Infliximab has to be given as IV and cannot be taken orally as it would be destroyed by the digestive system. In the US the cost is about $19,000 per month and is mainly prescribed to arthritis patients who have not responded to other therapy. No one is going to prescribe it to me here in Canada.

Therefore, given that I have not been prescribed any meds at this point, and my psych and neuro keep debating whether to place me on IVIG or not, for now I have to do things on my own. Also trying green tea and exercise of course doesn’t cancel out any other treatment that I might get. I continue with helminthic therapy and hopefully I will get an IVIG trial (intravenous immunoglobulin therapy).

CAMH ER Waiting Room

The room is in the building at College and Spadina. The room doesn’t have any windows,  but it does have a clock, so you can know what time of day it is. What you can’t know is when you will be let out (but to be fair, involuntarily hospitalization can be a maximum of 72 hours). There are armchairs along the perimeter of the area and in the middle. There are about six of us at the moment. Some will be released soon and new ones will arrive. None of us want to be waiting here, twisting on the pale green chairs. Also most don’t agree that they should be here. A young black woman is banging on the locked door of the staff room, a nurse comes out. The woman is nearly dressed with a designer purse and fur boots. She starts pacing back and forth. “If I knew what this place is like, – she yells at the nurse, – I would have never come here. Look at me, I don’t need to be here. I don’t cut myself and shit.” The nurse talks to her calmly, she tells her what she tells everyone – you have to wait to speak with the psychiatrist. The woman continues to yell that she is not like the rest of us. She complained to her family doctor about stress at work and the doctor referred her to this address,  told her that she could get a note for stress leave. She just wants a note,  she assures that she doesn’t cut herself.

As of that is what we all do. If only it was that simple – you either cut yourself and are insane, or you don’t,  and are not. I’ve never cut myself and yet I voluntarily checked myself into the CAMH ER. I also didn’t think that I needed to be in there, but there was no other way. I wanted to be set free from my inflamed brain, from the malfunctioning neuronal synapses. I wanted to be free to get lost in writings of other people’s ideas, to play Bach’s Gavotte, to be attracted and be attractive. I wanted to be released from the dark well inside my own mind. I wanted to suppress the hell, to get the intravenous immunoglobulin treatment. But how to convince them, how to make them understand that is what I needed?

After sometime the black woman was released. I was still waiting. There was renewed yelling,  coming from a different patient. Similar to the woman who just left,  she was yelling at the nurse that she didn’t need to be here. She was also getting extremely agitated,  I think if she had something to throw,  she would. The whole room now was aware that she was old enough to have ten children and that she didn’t want this visit on her record. Her sister couldn’t take care of her own kids and who would then be doing it if not her? But with a CAMH visit on the papers, maybe she wouldn’t be allowed to take the children in. The nurse tried to explain that visiting CAMH was not same as police record, but the woman already went into rage, reasoning does not work at that point.

So why do we all scream in fear – I shouldn’t be here, I am not like the rest of them? We must have evolved to have this fear of being declared insane. Insane means being banned from the tribe, starving alone in the savannah. It’s hard to let go of that basic fear of being abandoned by our tribe. Even in the isolated room at CAMH, where only the doctors and about five other strangers could hear you, we still don’t want to admit that something could be wrong. We could admit cancer, meningitis, infertility, but not that we are not mentally well. Most diseases are just affecting our body, but it is our mind that makes us who we are. And if there is something wrong with that, then what are we? Of course this is not what I think, this is an assumption of what goes on through people’s minds in this state of fear. There is no separation from mind and body, both are a combination of cells, proteins, amino acids. Signalling to each other, reproducing. And any part of the whole mechanism can malfunction.

I would say – learn to accept. You didn’t choose this body, you just sort of woke up in it. I would have chosen another model, if I could, but no choices were given. Well here I am, at CAMH ER, because some signals are malfunctioning, and it’s not my fault. This is the situation though, and I have to accept.

Autoimmune Encephalitis and Genes

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

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

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

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

23andme_1

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

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

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

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