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).

Tracking Anti-TPO and Anti-Tg antibodies

I have been tracking my thyroid antibody levels and I want to share my results, in case this information will be of use to someone. I have been diagnosed with Hashimoto’s encephalopathy in April 2017 and I was treated with intra-venous steroids (IV Solu-Medrol) in December 2017. In November 2017, before the steroids treatment, my thyroid hormone levels were normal, but my Anti-Tg and Anti-TPO antibodies were elevated. I was experiencing many symptoms such as fear, a sense of dread, severe anxiety, feeling of worthlessness. After the immunosuppressant treatment with steroids I had improvements in different areas of being, such as a desire to read fiction again, new interest in men, increased self-confidence, desire to play violin again. As you can see from the table below, my antibody levels decreased after the treatment, in May 2018 they were lower than in November 2017.

test_jan2019

I was improving in 2018 – I started this blog, took a violin lesson, read sci-fi. In the fall I completed mandatory adoption training and started the homestudy process with a social worker for adoption of children. This is something that I want to do because I wanted to have a family for a while, but I don’t feel that passing on my genes is the right way, as likely my children would inherit the same autoimmune disorders.

In November 2018 I started feeling worse. It’s difficult to pinpoint a specific cause of this as there were several events. I have been gluten-free now since 2016. Unfortunately one day in November I ate a whole bowl of lentil soup with barley because the take-out place stated that the soup only contains lentils and rice. Such large amount of gluten after not eating it at all for several years could have caused an immune reaction. I also got the flu twice, and the flu can also lead to the immune system being overactive even after the virus is gone. I also decided to try different probiotic supplements which had supporting evidence in regards to positive results for mood improvement. Maybe it did not go well for me and these bacterial strains were not accepted by my immune system.

In end of November I started to frequently wake up around 5am covered in sweat. At work my palms were sweating and I was getting chills. My pulse was regularly over 90 and my temperature was around 37.3 Celcius even though I did not have a flu nor a cold. My neck and face were burning, I felt waves of heat and shivers going through my body. After work by 6 pm I was lethargic and couldn’t get myself to exercise as I was in the fall. It was very clear to me that my thyroid hormones should be tested, so I right away went to the lab. December results show that at that point my TSH was already very low because my thyroid hormones were too high. Thyroid antibodies are also elevated.  Ultrasound confirmed inflammation of the thyroid. I was referred to Women’s College Hospital and they repeated blood tests again. It can be seen that December 19th results indicate even higher thyroid hormone levels.

At the moment when all this occurred, I had a regular schedule – sleeping 12am to 8am, working 9 to 5, was doing yoga before I became lethargic. I was not on any medications but I was taking several probiotic supplements – saccharomyces boulardii, and two probiotics for mood. I decided to stop all supplements and also came across an article about anti-Saccharomyces cerevisiae antibodies. I did not have testing for these antibodies, but I decided to try going yeast-free and see whether symptoms improve. I stopped drinking my kefir and eating my sourdough bread. Also avoiding alcohol and vinegar. It’s interesting to see that in January my thyroid hormones were at their normal levels. It’s hard to say whether there was an issue with the supplements that I was taking, or yeast in food, or a random event of thyroid inflammation. I will be testing again at the end of January. There is not much evidence that yeast consumption could cause an autoimmune flare, but I will still keep going yeast free for sometime to see whether there will be improvements.

Anti-Saccharomyces cerevisiae antibodies (ASCA) are associated with body fat mass and systemic inflammation, but not with dietary yeast consumption: a cross-sectional study

“The findings indicate that ASCA IgG-positivity may be linked to the generalized inflammation commonly seen with increased adiposity, but not to dietary yeast intake. Other potential causes for the raised ASCA IgG concentrations, such as genetic predisposition, deviations in the gut microbiota and cross-reactivity of ASCA with other antigens, were not explored.”

 

 

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.

Sourdough for mood and hyperglycemia

Not all carbs are equal. Several months ago I made a discovery of gluten-free sourdough recipes and now I eat it almost daily. I obtained a sourdough starter, and now that I have one, it can live on forever, as long as it gets fed. It can definitely outlive me! Feeding the starter is very simple and requires only two ingredients – brown rice flour and warm water. After being on a strict AIP diet for almost a year (a lot of food group exclusions, including grains), it was very exciting to once again eat bread, burritos, and blueberry muffins. I no longer follow the strict AIP diet since it did not turn out to be a magical cure for me. I did improve a bit, but that does not mean that every food group exclusion contributed to my improvement. One person (me) trying the AIP diet is not a clinical trial with test and control groups.

I do see strong correlation between my psychotic episodes and consumption of gluten/cow’s dairy/corn/chocolate/nightshades (bell peppers are fine, small amounts of tomatoes are also OK)/ high-glycemic foods. I haven’t found issues with eating gluten-free whole grains and also found no evidence that grains are inflammatory. I don’t consider any blog post evidence. If a blog post refers to a research paper, then I will consider their claim. I do agree that anecdotal evidence is also useful, it was other people’s stories that helped me to obtain the right diagnosis after being misdiagnosed with schizophrenia by my psychiatrist. Only we can’t know from anecdotes what actually helped, if someone did the AIP diet and they got better – was it because they eliminated all the foods the diet suggests to exclude, or they could have improved just as well if they only avoided refined carbohydrates?

The evidence that I found so far indicated that whole grains are actually anti-inflammatory. For example, whole grain intake was found to be inversely related with inflammatory protein concentrations, while refined grain intake was positively related with the inflammatory markers. “In summary, whole grain intake was inversely related to PAI-1 and CRP plasma concentrations, but these relationships were attenuated by the addition of metabolic variables to the model. Refined grain intake was positively independently related to plasma PAI-1 concentrations.

Whole and Refined Grain Intakes Are Related to Inflammatory Protein Concentrations in Human Plasma

I introduced whole grains after a year of strict AIP diet with no problem. I find that consumption of whole grains puts me in a more relaxed state of mind, I actually consume half a cup of rolled oats with green banana flour in the evening for better sleep. Sourdough is great because the baked goods end up with a low glycemic index after the fermentation process. I have a glucometer that I use to determine my blood glucose response to different food products. The standard test is a two-hour glucose test. Two slices of gluten-free bread increased my blood sugar to over 11 mmol/L two hours after consumption, which is a sign of high blood sugar. I did the same test with sourdough bread and sourdough muffins and my blood sugar was back to under 6 mmol/L two hours after consumption, which is a big difference. Short grain brown rice is also a high glycemic index food, while long grain brown rice was found to have lower glycemic index.

Sourdough allows me to eat the foods that I missed out on for so long, at the same time it does not cause a blood glucose spike for me. I have used sourdough to make pizza crust, tortillas, bread, and muffins. Currently I am learning to use fermented batter to cook dosas, an Indian dish. Controlling blood sugar for me means also stabilizing my mood. A glucose spike and then crash turns me lethargic and weepy, it takes away my energy, I definitely want to avoid that. Sourdough allows me to have blueberry muffins for breakfast, goat cheese toast, burritos – all without the consequences of an emotional roller coaster. High glycemic foods may also promote inflammation and given my diagnosis of autoimmune encephalitis, that is something that I definitely want to avoid as well.

Hyperglycemia can cause inflammation through varying mechanisms that result in the production of free radicals and pro-inflammatory cytokines (19, 24). Thus, high glycemic index and glycemic load diets may stimulate inflammation. Glycemic index is the blood glucose-raising potential of the carbohydrates in different foods. A more accurate indicator of the relative glycemic response to dietary carbohydrates, however, is glycemic load. Glycemic load incorporates the relative quality of carbohydrates characterized by the glycemic index. Consumption of high-glycemic index foods results in higher and more rapid increases in blood glucose levels than the consumption of low-glycemic index foods. Rapid increases in blood glucose are potent signals to the β-cells of the pancreas to increase insulin secretion, which can cause a sharp decrease in glucose levels and lead to hypoglycemia (25). In contrast, the consumption of low-glycemic index foods results in lower but more sustained increases in blood glucose and lower insulin demands on pancreatic β-cells (26).

Dietary carbohydrates and inflammation

40684760_10157598823358906_7112051833098469376_o

Sniffing soil for depression and PMS

I have been sniffing soil and I think it did me some good. And by soil I mean regular soil, it’s not some kind of code name for a street drug. I started sniffing soil and eating unwashed parsley this summer, after I came across an article about antidepressant effects of a bacteria mycobacterium vaccae, which lives in the soil. Since none of the standard antidepressants worked for me, I am very open to new research. Also soil from the backyard or pots seems pretty harmless. I am currently renting in a first floor of a house and my landlord is a very nice lady, she let me plant stuff at the back, where she also grows kale and tomatoes. I purchased stems of parsley and leek and usually I eat them right from the ground, unwashed. I have also placed a fork in my slot in the backyard and each morning I try to remember to stop by and inhale some soil that I pick up using the fork.

About m. vaccae  “In 2004, Mary O’Brien, an oncologist at the Royal Marsden Hospital in London, published a paper with unexpected results: She injected lung cancer patients with a common, harmless soil bacteria, Mycobacterium vaccae, to see if it could prolong their life. M. vaccae had some success in earlier trials where it was tested for its abilities to fight drug-resistant pulmonary tuberculosis and boost immune system response. O’Brien thought maybe the bacteria could help her patients’ immune systems beat back the cancer in their lungs. It failed.

Only, it succeeded elsewhere: the bacteria injection “significantly improved patient quality of life,” O’Brien wrote in the paper detailing the findings. Her patients were happier, expressed more vitality, and better cognitive functioning—in short, it reduced the emotional toll of advanced cancer.”

Dirt has a microbiome, and it may double as an antidepressant

I am a one person sample and I cannot construct a test and control group using just myself, but I can still provide some observation. Friday was a day three days before my period. I did not know it then because I am never aware of when my period will start. I do know from multiple observations that days -3, 1, 2, and 3 in regards to period start are when I have more severe mood swings. So it was day -3 and I started to get more depressed already after lunch. Like a crushing feeling coming on, everything becomes more bleak, it becomes painful to speak. It’s a real sense of dysphoria, as if from opiate withdrawal. I held it in, but started to cry on my way home. At the back of my mind I still had a thought of hope that there were still interventions I could try and hopefully not go into a very dark hole.

I had plans to meet with my friend at a noodle place near my house after work and I was starting to be concerned that I wouldn’t be able to do it. You could say – why not? Wouldn’t it be better in any case if you do see your friend? Yes, yes, it would, but a severe depressive episode is not just being sad, it can be such extreme emotional pain that you are just unable to speak. What’s also interesting, is that the closer you are to such a state, the less likely you are to try an intervention. You have to keep reminding yourself about the time you said to yourself that you will try. You could write it down in your phone, put an alarm clock. I had to say to my brain – I don’t care about your opinion at this moment, I don’t care that you say no treatment will work. So I stopped in the backyard and ate a lot of parsley from the garden bed. I lifted up soil crumbles to my nose and I inhaled.

An hour and a half later I made it to the noodle place and I was able to talk and laugh. Maybe it was m. vaccae, or placebo effect, it could have been also just the natural course of my symptoms that day. Therefore I have no concrete proof, but still wanted to share this observation, especially considering that there is research out there indicating antidepressant effects of soil bacteria. From Friday on, I continued sniffing soil each morning and I can definitely say this period was less emotionally eventful. No running out to the staircase during work to sob. Also it has been the first time in many months that I did not take any naproxen or ibuprofen. I believe this is an indication that there is a reduction in inflammation. As I have written previously,  I am on a specific Mediterranean diet with extra exclusions such as gluten. I have also been consuming goat kefir and kombucha daily, and infected myself with therapeutic helminths six weeks ago. Which one of these treatments has reduced my PMS pain I am not sure, but I sure am glad that one of them or all of them are showing some positive results.

I suggest you consider getting dirty and maybe eat some herbs straight from the ground. Just make sure to read about parasites in your area, we don’t have any serious pathogenic parasites in Ontario soil, therefore I am not concerned about eating unwashed herbs/vegetables here. I hope some m. vaccae will provide you with a better day.

Hot weather and other factors, autoimmune disease, and psychosis

I’m thankful to bloggers who wrote about their experience with diet and depression. I’ve learned through the blogs and then my own observation that I was making my mental health worse by eating gluten in all possible forms – pasta, sandwiches, Subway, wraps, tempura, soy sauce. I have also established that casein in cow’s milk makes me more psychotic, so I had to give up a lot of delicious habits – taro bubble tea, cheesecake, easily ordering a coffee with milk at Denny’s – I now usually carry goat milk in a cooler with me everywhere, in case I want to add it to tea. This post won’t be about diet though, I have posted on diet previously:

Autoimmune Encephalitis and Diet

This post is about the fact that changing your diet may improve your mental health but it won’t necessarily cure you. I think it’s important to remember that in order to not constantly blame yourself. I used to do that when I was on strict AIP diet – I used to blame myself for feeling depressed. After I noticed that the AIP diet was actually helping, I became convinced that I would soon be cured, as long as I stay on the diet. Probably I’ve read too many blogs claiming that grains contain lectins that cause brain inflammation and therefore depression. There are a lot of success stories online with bloggers stating that their depression vanished after going on AIP diet or paleo or keto or vegan, you name it. It’s easy then to start blaming yourself each time you feel depressed again – if all those people were cured, maybe then I am slacking, not avoiding enough foods, not being strict enough. I think we may go into the blaming state because we want to believe that we can have full control of our mood and it would be nice if as long as we didn’t eat certain ingredients, we would never be depressed or psychotic.

Blaming yourself only makes you feel worse though and it doesn’t let you accept the reality that mental health problems are caused by many factors. I think yes – you should definitely strive for a healthy diet – avoid fried foods, high glycemic foods, red meat, etc., but should you feel guilty about the brown rice bowl that you ate yesterday because AIP and paleo bloggers claim that all grains cause inflammation? No, I am not sure if there is any evidence that grains are an issue, some research actually suggests that the healthiest diets are ones that include whole grains – such as the Mediterranean and MIND diets. I think we have to accept that there are other factors affecting our mental health and some we cannot control. Periods are definitely one of them and they suck. I find that my paranoia and obsessive thoughts are definitely exacerbated during the first three days of my period. Can I cure this issue with diet? I don’t think so. Being female, my hormones will always fluctuate with the menstrual cycle, there is nothing I can do about that. I can remind myself that it’s only worse for three days and it will get better, I am not always psychotic, I can try exercising more, going for a walk. But cure? I don’t know of one.

Menstrual Psychosis: A Forgotten Disorder?

I have recently realized that heat increases my intrusive thoughts. I had observed for a while that hot weather makes me lethargic and quick-tempered, but now I have also correlated hot weather with psychosis. It had occurred several times during the past month when I experienced exacerbated negative commentary in my head. I noticed that each time this happened on a weekend when I was away, camping. Supposedly camping is better than work  – I was not alone, I was with friends, eating meals together – just as I like. Also I was moving – swimming, kayaking. Getting enough vitamin D. Definitely sniffing a lot of soil (reference to the antidepressant bacteria Soil Bacteria Work In Similar Way To Antidepressants), always bringing my own food in a cooler – tempeh, mung beans, buckwheat, freeze-dried vegetables, oatmeal. Stuff that I usually eat, so that was a constant factor. When analyzing what caused an event, we have to look into the differences, and the only factor that I could think of is heat. This summer has been very hot in Ontario, multiple days above 30 degrees. Every weekday though I am in an extremely air conditioned air building where I often wear my shawl. At home I have two functioning ACs. It was only during the camping that I was exposed to extreme heat for many hours in a row. I think I have to accept this fact – I love camping, but hot weather increases my aggression and psychotic symptoms.

There is also research supporting the idea that heat exacerbates mental health problems. “Above a threshold of 26.7°C, we observed a positive association between ambient temperature and hospital admissions for mental and behavioral disorders. Compared with non–heat-wave periods, hospital admissions increased by 7.3% during heat waves.

The Effect of Heat Waves on Mental Health in a Temperate Australian City

Heat exposure associated with mental illness – A mental hospital-based study in Hanoi, Vietnam looked at if there is a relationship between heat exposure and mental health problems. The results showed significant increase in hospital admissions for mental illnesses during periods of heatwaves, especially during longer periods of heat exposure.

Heat exposure associated with mental illness

Exposure to sun can also exacerbate autoimmune disease symptoms, and for me this directly means worsening of mental problems. ”

“‘Photosensitivity can trigger the whole darn disease, including full systemic flare and joint pain and kidney failure,’ Dr. Connolly said. ‘The younger patients sometimes say, ‘The heck with this, I’m tired of carrying sun block,’ and they’ll stay out there, and it’s not just that they are going to give themselves a bad rash. This is something to take seriously.’

The link between the sun and lupus flare-ups is thought to be a set of inflammatory protein molecules called cytokines, which are activated when ultraviolet light hits the skin. The skin inflammation that results can create a chain reaction of other symptoms.

A Sunny Day Can Mean All Sorts of Distress

This is all sad news, but I still want to go outside. I want to go hiking, kayaking down whitewater rivers, canoeing through uninhabited islands. I still have to accept that sometimes camping might make me feel worse. Probably I need to give up on t-shirts and always wear long sleeves when it’s hot. I do always wear a hat and sunscreen. Also going outside is important for vitamin D and we do need UV light to set our circadian rhythm. Therefore no, you shouldn’t lock yourself up in the house, but it’s better to not be out in the sun in the swim suit for too long. I’m going to stick with pants, shirts, running shoes, and caps. On the other hand I’m also not going to blame myself if I do feel worse. I did not create this disease, it’s not my fault that I react to weather, I can’t control the weather and I can’t avoid the weather. Let’s not feel worse by blaming, let’s learn from the available information and also remember that even if you are doing everything right, sometimes psychosis may still occur and we won’t know why. Maybe we will in the future and you will have this device that will tell you in real time ‘your dopamine levels are going higher than the suggested threshold, eat this scientifically advanced cookie and it will fix the problem’. I do hope for such a future, but for now it’s just science fiction. Research has shown that one way to reduce suffering during a psychotic episode is to accept the experience but not act on it. Accept also that there will be a peak of the symptoms but then they will diminish, it will pass.

Are you sure your depression is in your brain?

I’m not. Actually I’m pretty sure that’s not where my depression started. I am quite positive that the encephalitis  – brain inflammation – had developed after several years of chronic gut inflammation. What if my irritable bowel/gastritis was stopped right after it started? What if I had known about celiac disease and stopped eating gluten not two, but ten years ago? My assumption is that I would not have developed brain inflammation then, I would not experience seeing the old women asking me to help them die, I would not feel the walls of my room closing in on me. There would be no primal fear, no encephalitis. Whatever has happened to me, happened, no point to dwell on the past, but I am writing for others, for whom such terrifying experiences may be prevented. It’s important to ask the question – are you sure your depression is only in your brain?

meds

Above is my combination of the psychiatric meds that I was given by my first psychiatrist. She never questioned the origins of my depression – to her it was all a chemical imbalance in my brain, therefore she combined SSRIs, antipsychotics, benzodiazapines, and she failed at treating me. She started treating me in November 2015 and in May 2016 I bought hibachi grills and drove away into a forest with the two grills and a bag of charcoal, police had to track me. In June I could no longer work and became unemployed. Clearly I did not improve in the six months that I was her patient.

I did not improve because I don’t just have some serotonin imbalance, I have autoimmune encephalitis – brain inflammation. I also was diagnosed previously with irritable bowel syndrome (IBS) and chronic gastritis – gut inflammation. Did one lead to another? I believe so. I believe my depression started in the gut and there is research to support this theory.

“Recently, studies have emerged focusing on variations in the microbiome and the effect on various CNS disorders, including, but not limited to anxiety, depressive disorders, schizophrenia, and autism.2,8,9 Therapeutic interventions to treat dysbiosis, or disturbance in the gut, and mitigate its effects on the GBA (gut-brain axis) are only recently coming to the forefront as more is known about this unique relationship. As a result, research has been done on the use of probiotics in treatment of anxiety and depression both as standalone therapy and as adjunct to commonly prescribed medications.”

“When the human microbiome is challenged with changes in diet, stress, or antibiotics, the physiology of the normal microbiome undergoes change. A dysbiotic state leads to increased intestinal permeability and allows contents such as bacterial metabolites and molecules as well as bacteria themselves to leak through the submucosa and into the systemic circulation, a phenomenon aptly named leaky gut syndrome. … Increased intestinal permeability leads to detrimental effects on the host immune system, which have been demonstrated in diseases such as inflammatory bowel disease (IBD), diabetes, asthma, and psychiatric disorders including depression, anxiety, and autism.2,4,10,34,35

“Depressive disorders are characterized by both neuroplastic, organizational changes, and neurochemical dysfunction.42 Illness is thought to begin when there is deregulation of these systems and can largely be attributed to cytokine release secondary to an exaggerated systemic response to stressors.39,41 Endotoxin infusions to healthy subjects with no history of depressive disorders triggered cytokine release and subsequent emergence of classical depressive symptoms. The study established a direct correlation between increased levels of IL-6 and TNF-a with symptoms of depression and anxiety,43 indicating that pro-inflammatory cytokines play a role in the development of anxiety and depression. These effects correlated with a state of chronic inflammation and altered immune cells in the peripheral blood. However, TNF-a administered to healthy subjects resulted in no depressive symptoms,38 suggesting that toxin induced inflammation caused the mood disturbance.”

Gut microbiota’s effect on mental health: The gut-brain axis

There has also been found a link between IBS and depression and recent studies are indicating that probiotics may help with both issues.

“For the new research, scientists from McMaster University in Canada recruited 44 adults with IBS as well as mild to moderate anxiety or depression. They were followed for 10 weeks; half took a daily dose of the probiotic Bifidobacterium longum, and half took a placebo. The probiotics were manufactured and provided by Nestle, which also funded the study. (Nestle was not involved in collection, analysis or interpretation of study data.)

After six weeks, twice as many people who took the probiotic had decreased depression scores compared to those who took the placebo: 64% versus 32%. Results were similar after 10 weeks, as well. When people in the study were given functional MRI scans, the researchers found that improved depression scores were associated with changes in activity of several brain areas involved in mood regulation.”

How Probiotics May Help Depression

If you are suffering from treatment resistant depression – you are not improving with the SSRIs/SNRIs/TCAs/MAOIs/NASSAs/etc., it’s important to ask yourself whether you are also suffering from any other conditions. If I had previously known all the information about the gut-brain axis, inflammation, and autoimmune diseases, it would be more evident to me that the cause of my psychiatric issues was likely gut inflammation. My severe depression started in 2015 but other health problems were starting long before that. I experienced dry and peeling skin since I was 11 years old and after the age of 12 I developed severe acne. When I was 17 I started having strong abdominal pain in the evenings. Sometimes the pain was so severe that I found it difficult to sit up. I also remember difficulties with falling asleep because as I lay down I would feel my stomach grumble and I could not relax. Later on more symptoms were added such as facial swelling, gastric pain, rapid weight gain, and brain fog. Then the depression and psychosis came. A coincidence ? Just a chemical imbalance unrelated to the other health issues? Clearly not and these symptoms were all related. They developed together as I continued to have a diet, unknowingly, that was terrible for me – pasta, bread, pizza, cheesecakes, and the symptoms declined together as I changed my diet, got treated with steroids, and started consuming fermented foods.

Now that I am equipped with all of this information I hope that I will continue to improve. I no longer have a feeling that it will only get worse and worse. I hope this will be useful to you as well and I hope I can help you feel happier again. There is more and more research now on other possible treatments for depression in addition to existing antidepressants, so I am optimistic that something will work for you, there are many things to try, don’t give up!