Anatomy Of A Car Crash: A Journey Into Long Covid

My story begins like many of this nature, with a mystery illness. Several friends of mine had purchased an old hotel in the Swiss mountains, and I had just arrived to spend a month helping paint some walls and do some plastering. I had been told upon arrival that there was some viral infection going around the house that was knocking people on their ass for a week at a time. This was May of 2023, and while the pandemic wasn't too far in the background, for whatever reason nobody really considered this might be covid.

Sure enough, about a week into my visit, my nose started to run and my sleep started to be fragmented. I had also started experiencing periods of weird vertigo, which matched the neurological feel I had after my second vaccine, the Moderna one, which put me in the hospital five days later with vertigo and ST-T wave variations in my heart.

Eventually over the course of about a few weeks, the sniffles stopped and I felt a bit like my old self. Unfortunately someone had broken into my apartment back in Spain, so I needed to rush back to Valencia in two days to help deal with the aftermath.

Within a few days of arriving, I started having weird shock-like sensations in my eyes and face. It felt like someone taking a really hot poker and just touching my optic nerve or my facial nerve for a few microseconds. It was a scary sensation, one I hadn't experienced before. Around the same time I woke up and felt a few numb patches on my body as well as a sense of urgency around urinating, so I went down to the emergency room where I got my first real glimpse of what was going on inside of me, and likely had been for a while.

My neutrophils were at 8.5 and my lymphocytes had tanked to 0.75, a neutrophil to lymphocyte ratio of over 11. Anything over roughly 10 is considered pathological and the signs of some serious illness.

The hospital didn't really take the shocks in my face or eyes as anything serious for whatever reasons, and mostly just sent me home. My own theory with the benefit of hindsight is that I was experiencing VZV re-activation due to my low lymphocyte count. When VZV presents without a rash it's known as zoster sine herpete. VZV does like to hang out in the CNS with particular emphasis on the facial nerves, which is where most of my symptoms were.

I continued to not feel myself over the next few months, but tried to get back with my life. In high school I had been on the tennis team, and was missing playing some kind of sport. So I went to the sporting goods store here in Valencia and bought both a tennis racquet and a padel racquet, the latter being a Spanish game that is a lot like pickleball.

I went out and played padel a few times, but noticed I was really struggling on the court. I had previously hiked Alta Via 2 in the Dolomites the previous summer, which was difficult but doable. I found even banging the ball back and forth on the court and doing limited rallies was taxing on my cardiovascular system. I often looked down at my smart watch and noticed my HR at 140 to 150 when it should have been more like 120. Regardless, it was clear my stamina had started being degraded.

I also noticed around this time that recovery from a game of padel was taking a long time, and was somewhat incomplete. I had been used to going to the gym, and everyone knows after a gym session your muscles feel a bit tired and sore for a few days. That's normal. I found I was sore for a full week after each padel session, and that even at the end of it my muscles continued to be sore. It was disconcerting. I had complained to a few friends of mine, and they were mostly dismissive, suggesting I was just getting older.

Around this time my sleep started to collapse. I have had sleep difficulties starting with an unknown viral infection I had when I was 27 years old that put me in the hospital, but starting around September of 2023 it had gotten an order of magnitude worse. I purposefully went to the doctor around this time and asked for help as I was only getting a few hours of sleep a night and struggling to function.

Between October of 2023 and November of 2023, I was hardly getting any sleep and my muscles continued to be sore. Around that time my mother's health in Canada took a turn for the worse, and she had to do a cardiac ablation for electrical issues. To help be supportive, I got on a plane and went back to Canada for four weeks.

I spent a lot of time sleeping in my mom's guest room, and looking back on that period she said I often was complaining about a bad headache and being really sore. The pain got to a point where I made an appointment from Canada back in Spain to see a rheumatologist when I returned, and something seemed really off.

The day before heading back to Spain, I booked a nice hotel for myself in Vancouver near the airport. That was when my nose started leaking and wouldn't stop. By the time I actually hit Spain, I was kind of a wreck health wise, my nose was literally pouring down my face, I couldn't stop sneezing, and my HR was elevated. I think I arrived on a Sunday, when everything is mostly closed, so first thing Monday morning I went and got a lateral flow test for covid from the nearest pharmacy. Sure enough, it was positive.

Here was the actual photo I took of it. The timestamp says December 13th, 2023, 9:22am. This was the guy that finally chopped down the entire tree.

I have lots of weird photos from that time period showing something systemic happening. Here was a one month snapshot of my Garmin watch showing my HRV, which had completely collapsed the month preceding this infection. It might have even been possible that I had been infected for a while, and it was only right before my flight back did I become fully symptomatic.

December 23rd, 2023 was my last day of normalcy, and this was my last real happy memory from that day. It was a nice sunny day in Valencia, and I had tuned up my bike and rode it by myself to the beach. I sat in the sun reading for a bit on my phone and just enjoyed the day.

The Systemic Collapse

On December 25th, 2023, Christmas Day, I went for my normal morning coffee and walk around the block. When I came back, I was sitting on the couch and felt a bit off. My resting heart rate, which around that time was around 50 bpm, slowly started inching up 10 bpm at a time over the course of a few hours. When it hit 140 bpm at rest, I decided to go to the hospital.

The blood work from the hospital once again showed elevated neutrophils and low lymphocytes, with a neutrophil to lymphocyte ratio of over 11 again.

I can only call what happened over the next six weeks a complete systemic collapse. One by one various parts of my body seemed to collapse and I was playing whack a mole with doctor and hospital visits.

My heart rate became so unstable that my Garmin watch would often give up tracking it. I would look down at my watch and it would be blank, or it would oscillate between 60 bpm and then jump up to 140 bpm for a while, then back to 60 bpm. I can only assume whatever was going on with my heart wasn't compatible with what a normal heart rhythm is and so the algorithm just gave up a few times. This was confirmed by a Holter monitor I did a few weeks later, which showed serious arrhythmias such as R on T and long pauses.

I had also noticed a really peculiar smell with my urine as well. It's hard to describe, and I noticed it in the same way people notice they had eaten asparagus recently. It was almost like a buttery smell on top of wet hay or something. But it was very distinctive. More on this later.

About four weeks later, when I went outside to drop off the garbage, I remember feeling very confused and light headed. I called a taxi, which was difficult, and got them to take me to the hospital. When I arrived, I had a hard time locating the entrance, despite having been there many times before. During that visit, my sodium was at 129, which is technically low. All of this points towards autonomic dysfunction, which I was experiencing. Low sodium can cause confusion on its own, but looking back if I had done a cytokine test around then, I expect they would have been rising and what I was also feeling might have been the cytokine effects on my brain.

My sleep continued to get worse, and I was hardly sleeping at all over the next few weeks. I continued to visit doctor after doctor, often being told nothing was wrong. This started causing me grief with my friends, as from their perspective it wasn't normal to be told you were fine, but not accept that. But from my perspective, everything about my body felt very, very wrong, and it was normal to try and figure out why. Unfortunately this would work against me in a few weeks, as you'll soon learn.

Sometime around February 13th or 14th, my thought process started being jumbled. I started having weird dreams, and started feeling impending doom like something bad was about to happen. The feeling was so strong that I started actively sharing my location with a few friends with no end date, assuming there was a large crescendo about to happen.

On February 16th, I experienced severe confusion again, and went to the emergency room. They did an emergency CT scan, which didn't reveal anything, then gave me an injection of something for pain or anxiety, I am not really sure. Regardless this event started the culmination.

My friend was very worried about my state of mind around this point. I had been a bit frantic and unable to express myself properly. In my head, I felt like I was caught in a loop. I was trying to explain things but unable to. I felt like I was achieving some greater understanding, and was surprised other people didn't share it with me. Because I had just been to the emergency room and discharged, my friend didn't take me back. Instead he suggested I sleep on his couch so he could watch over me, which I did.

The Waking Dream

That night I had the most vivid dreams of my life. They felt like they lasted days, not hours. I had dreamt that my body had been deconstructed molecule by molecule and put inside a computer. And that my physical being was no longer needed. Surprisingly I found this calming. I also was led to believe I had done something horribly wrong that had caused the deaths of lots of people, and I would need to atone for it shortly. I also dreamt I had been disowned by some of my family, and they had killed themselves because of me.

I woke up around 5am, and messaged my sister in Canada, which wasn't normal for me at that hour. I tried to ask about those family members who had disowned me, but not in a way that would raise suspicion, but it didn't work. She was definitely confused I think why I was asking these questions, especially at a time I am normally sleeping. My friend whose house I was staying at says I was pacing around the flat a bit at that hour, which I was while using my phone. I went back to sleep for a few hours, and then the shit hit the fan.

Psychosis

I woke up that morning extremely paranoid, like everyone was out to get me. My friend made me a tea and some toast, and we ate it at the table. But I felt like he had done something horrible to me, and I wasn't sure I wanted to eat the toast or drink the tea. He suggested we work on his bike together, since he wanted to add a new bike rack. So I followed him out onto his patio and started to help hold some bolts in place for him.

Around that time my hands started shaking and I felt my brain basically explode. I was suddenly flooded with horrific thoughts about all the deaths I had caused and was somehow still causing. Whatever I had done had not only been catastrophic on a planetary scale, but also existential, like at the level of the universe. The only way I could limit the damage was to turn myself in, or so I believed. So I dropped the bolts, turned around, and ran out the door.

My goal at the time was to turn myself in to the police. The last place in my head I had seen them was at the hospital the day before, so I started running in that direction, even though it was kilometers away. I knew there was something horribly wrong, which is why I tried a few times to stop traffic and get help from people. I called 112, the equivalent of 911, from my phone a few times and tried to explain there was something wrong and asked the police to come get me. I waited several times, but they never came.

Despite asking for help for 60 to 90 minutes, stopping random cars etc, only one lady stopped to help. She called the police, and I suspect told them something wasn't quite right with me. At that point I flagged down a taxi, and got him to take me to the hospital. I don't think I paid, unfortunately.

I didn't see the police at the front entrance, which is where I saw them before. But I did see a security guard, so I frantically tried to explain what was going on. Between my frantic state and my inability to express myself I guess in Spanish at that point in time, I think the guard somehow was under the impression I had murdered a bunch of people, so he called the police on his own and told me to wait.

When they finally showed up, they reviewed all my ID and then put me in the back of the car. I figured I was going away for the rest of my life, and likely going to be executed. But first they wanted to visit my flat and see the dead people I guess.

This is the point where I got unlucky. I walked into my apartment complex with about 3 or 4 police officers. Had any of my neighbours seen it, and came and talked to them, they would have made it painfully obvious that I wasn't acting normal I don't think, and tried to come to my rescue. But I didn't encounter them. Instead the police searched my entire apartment for evidence of crimes, didn't find any, and realized something was seriously wrong. At one point one officer looked at me and then the other officer and said, "es serio", which means, "it's serious". I assumed at the time he was referring to the crimes I had done, but it's clear in retrospect it was my mental state.

I assumed I was going away forever, so I asked the police if I could bring my iPad and my blood pressure pills. They said sure, which I thought was nice of them. The consequences of my actions continued to escalate in my head. It was clear I wasn't just the one who was going to be punished, but my entire family and friends back in Canada.

Several nurses arrived wearing gloves at some point, and I guess the plan was to take me to the hospital. I had left around 10am from my friend's place, and the time on these images says almost 3pm, so I had spent nearly five hours wandering the streets, trying to stop cars, and trying to turn myself in at the hospital.

The Second Hospital Visit

The ride to the hospital was mostly without incident. I thought it was a last minute medical check before I was incarcerated, but it was apparently due to my mental state. If they had walked me in themselves to the hospital and checked me in, explaining the situation, I might have had a proper introduction to a neurologist. Instead, they dumped me at the front door and told me to go inside. I was mostly confused about why I was there - my brain was still misfiring. I went and talked to the front desk, and couldn't really explain why I was there. So I got my number to wait to see one and sat in a chair. Then the voices started.

Command Hallucination

People talk about hearing voices during psychosis. I obviously had no frame of reference. I definitely didn't hear anything through my ears. But everybody I think has an internal monologue, a little voice in their head where they rationalize things, try to solve problems, etc. While sitting in that chair whatever that voice is became a lot louder and more aggressive. It was almost like Gollum had split with Smeagol, and there were now two identities going on inside my brain. The second one was authoritative and telling me what to do. I'm told in the literature this could be considered a command hallucination.

Because I'm an engineer, I needed to rationalize it. As weird as it sounds, my rationalization was the idea that I could suddenly hear radio in my head, and what I was hearing was the police themselves telling me what to do. That meant I needed to follow it, which I started to do.

Eventually I got to see a doctor, but because I didn't really know why I was there it wasn't a fruitful discussion. The voice in my head was adamant I needed to leave, so at some point I just got up and walked out the hospital. Whether this is true or not, the medical report a few weeks later would say I was reported as missing, whatever that means.

I should also point out at this point that I had no history of mental illness. I had never visited a psychiatrist, and had never been diagnosed with anything, not even anxiety.

The Long Walk

I spent the next few hours walking around Valencia, going wherever the "voice" in my head told me. It would occasionally tell me to stop, so I did. It would occasionally tell me to go inside stores, which I did. At one point I was wandering around the back room of a grocery store, a place I obviously shouldn't have been. I imagine if you could have seen me I would have been staggering a bit. Walking had become hard for me, I remember, and my brain continued to misfire. At this point, in my head at least, my family had all been executed along with most of my friends. Whatever I had done had been determined to be so grave, that the Spanish government was about to go to war with the Canadian government over it. Kids in Valencia routinely set off fireworks when they are bored. In my current state, every firework was interpreted by my brain as another friend of mine being shot.

Because I was likely to be executed, I realized I didn't need any of my belongings. During my walk I started discarding things I wouldn't need. I tossed a bunch of credit cards out onto the street at some point. Later I would toss my keys into a bush. I left my Garmin smart watch on the edge of a garbage can, thinking maybe some kid could use it. The voice told me I wouldn't need my iPhone anymore, so I just dropped it on the ground. Some young lady picked it up a few seconds later and tried to give it back to me, but I just kept walking.

It started to get dark, and I was exhausted. I am not sure if it was because I was hot or the voice told me to, but at some point I started shedding my clothes in front of a nearby bingo hall. I then mostly collapsed on the street corner, expecting the end to be soon. I'm not sure if it was because I looked like some crazy person, or they suspected I was high on drugs, but the police were called on me, and not in a good way.

A couple patrons nearby mostly made sure I wasn't going to leave. I don't think it was for my benefit, but for theirs. When the police showed up, it wasn't like last time. For whatever reason they assumed I was a threat, and told me to do the spread eagle thing and place my hands on the cop car. At that point they went through all my ID, asked me a bunch of questions, and got angry with me when I moved my hands.

My brain was still fully capable of reasoning at this point. Despite my weird actions, nothing was illogical about them. I believed turning myself in to the police was a way to save lives. I was following this voice in my head because I believed I was complying with the police. I was able to tell the police the answers to all their questions, even making the odd joke. Unfortunately for me when they asked what drugs I was on, I basically said all of them. This was deliberate as the voice in my head made it clear this needed to end now and it needed to end with me in custody. I figured the best way to do that, logically, was to give them a reason to take me in. So they were led to believe I was on pretty much every drug available, which of course wasn't true.

I guess at some point they checked my file, and realized I had a previous encounter with the police earlier that day. They probably discovered I had walked out of the previous hospital too. Regardless, an ambulance was sent this time, and one of the police officers escorted me to the hospital. I remember vividly the discussions him and I had - he asked me about Canada, how I liked Spain, and was surprised I had never seen a futbol match in person yet. While I'm sure he didn't actually mean it, he suggested him and I go see a game together at some point, which I appreciated at the time.

I felt relief that this was about to end, even if I was to be executed. In my head everyone was dead and I was the cause. I was grateful for the police officers. When we got to the hospital, the officer stayed with me during admission. I have no idea what he told the nurses etc., but I suspect he probably told them I was high on drugs.

My heart rate on admission was 134 beats per minute, and my O2 was at 94%.

Sitting in the chair next to that police officer was the first time I punched through the delusion. In my head I had done all these horrible crimes. Given the police were instructing me and all of Spain was about to go to war with Canada, I knew it was serious. Yet I looked around the waiting room in the hospital and nobody was looking at me. How is it, I thought, nobody recognizes me? It didn't seem possible.

Before I could dwell on that thought too long, I was hauled in front of three young doctors. I assumed they were neurologists, but in fact they were psychiatrists. They had already decided I guess that I was a mental health patient, and were treating me as such. The hospital report would describe that encounter with me staring at the wall mostly without blinking for long periods of time, and having pressured speech. They were questioning me in Spanish, which was hard in my state. Eventually they asked if I wanted to spend the night in the hospital, get a proper sleep. I had spent the day walking around the city and I was exhausted, so I said yes. What I didn't realize is that was a loaded question, and they were basically asking if I was giving them permission to involuntarily commit me, which I guess I did. But that wasn't the question they asked, nor was it implied.

Escape Attempt

They gave me some pills to calm me down. I assumed at the time it was some poison or something to get me ready for the execution. I still swallowed it regardless, I was ready for this all to be over. Eventually they put me in my new room, and nobody told me really anything past that other than it was time to sleep. I had a roommate I guess, but he was sleeping.

For whatever reason, the voice in my head said I should stare at the light in the room and try not to blink. So I did. I probably spent a few hours just staring up at the light. I'm sort of surprised I didn't damage my retina because of it. What's weird is the nurses mentioned it in my report, but didn't intervene.

At some point the voice in my head told me I needed to escape, and if I didn't leave, more people were going to die. Despite my exhaustion, I decided to get up and survey my new surroundings. The nurse of course tried to stop me, but I just casually walked around her and kept walking. I'm thankful that at no point during any of my psychosis was I ever violent. I still always knew right from wrong and didn't want anyone to get hurt. I used to play rugby, and that was a small nurse. I could have easily hurt her in my state, but thankfully never did. That said, I was locked down pretty good with no way out. Unfortunately for me the nurse called two big security guards, and I would spend the rest of the night restrained in my bed.

My New Home

My lower back was killing me all night. I have no idea if it was related to my current state, but the pain was excruciating. It didn't help that this was an industrial type bed in a mental health facility and I was strapped in such a way that I couldn't move, but I asked several times if they could shift my position and they never did. I managed to get a bit of sleep, but not much. Around 6am the lights were turned on, and someone came over, grabbed my arm, and took a vial of blood. This was a regular occurrence in this place, and I was shocked at the callousness of it - waking sick people up at 6am and doing a blood draw before they even realized what was happening.

At 7am the place generally wakes up and things start happening. I saw my roommate for the first time, this guy was clearly a drug addict and had what I presume was a methadone patch on him. Everyone set out to do their morning chores, much like I imagine a prison is. People changed their own sheets, stood in line to get fresh prison outfits, then showered one by one. I think around 8am we all stood in line to get a bunch of meds, and just like TV there was a person asking you to open your mouth to show you swallowed it. My particular cocktail was several antipsychotics and a benzo, the latter of which I imagine was given en masse to keep us all placid.

Nobody had yet explained why I was here, or what this place was. I had no phone, and no way to contact the outside world. Nobody knew where I was, and I couldn't check the internet or anything. The facility had a few windows, but I didn't recognize a single viewpoint - there were no landmarks visible, so I had no bearings for where I actually was. The voice was still telling me to be cautious, to not tell too much to these people. And my urine still smelled horrible, probably even worse.

First Discussions

The first time I spoke with any doctors was 48 hours later. The first batch they sent up looked like some medical student with three or four interns or something. Regardless this looked like some training exercise, and I had no intent really of being a part of it. So when they asked me questions I didn't really help them all that much. Not that it would have mattered since I genuinely didn't understand anything that had happened in the last few days.

Being Found

The young lady who picked up my phone, as it turns out, was a good Samaritan. Rather than stealing it or trying to sell it, she decided to call the emergency contact in my iPhone which for some strange reason was actually my mom's best friend. I don't know why that happened, probably a mistake on my part. But when my mom's friend answered the phone the young lady in Valencia told them what had gone on and asked if they knew of anyone in Valencia, Spain who might be in trouble. Thankfully, they knew one person, me. So at that point my family became aware I was officially missing, and without my phone.

It must have been a scary few days for them. I had been having lots of medical issues in the weeks prior, and clearly something was wrong. One of the last conversations I had with my sister she had stepped outside at work in Canada to call me and she was teary eyed I could tell. She feared something was really wrong, and the next information she got was from a stranger.

Because I had proactively shared my location with a few friends, a local friend knew my last known location, which was where I had dropped my iPhone. It was thankfully quite close to the hospital and medical facility I eventually ended up in. So they had called hospitals in the area until they located the one I had been admitted to. This whole process took a few days. In that time as well, the young lady who found my phone managed to get it back into the hands of my friends here in Valencia.

On or about the 72 hour mark, I was told somebody dropped something off for me at the hospital. I still thought at this point everyone was dead, and that Canada and Spain had gone to war over me. So I was surprised I had a delivery. Someone had brought me a suitcase of my clothes and personal effects (it turns out my housekeeper and my friend came to my house using my spare keys and packed up a care kit for me), and had returned my phone to my possession. I was only allowed to turn the phone on for an hour a day, but I was amazed and confused when I turned it on and learned my friends and family weren't dead. But that presented me with a problem, why did I think they were?

Putting The Pieces Back Together

February 20th is the first photo I took since the police encounter, so that was three days after I first took to the streets. Here was a selfie I took during the one hour a day I got to use my phone. I was still in a state of flux here, frantically trying to understand the events of the last few days, and hadn't really talked to anyone yet to tell me what was going on.

In my medical report, it's clear they had already decided on a DSM diagnosis of a mental health disorder. There was no inquiry with neurology, or any recognition of the fact I had been to emergency seeking help six or seven times over the last six weeks. I would have thought the fact I had an emergency CT scan of my head the day before the psychosis would have set off alarm bells that there was a neurological issue at play, but it never did. The only labs they did during my admission were a full toxicology scan looking for drugs, which of course they didn't find. I tested positive for a benzo, but that was the one they gave me the night before.

They interviewed a lot of my friends and family, I'm sure by asking leading questions. But they came away with the idea that I was depressed, mostly about my mom being sick they said. And that depression led to an acute psychotic event. I don't think my friends knowingly contributed, but they thought my behaviour in the six weeks leading up to this event - my ongoing doctor's visits and refusal to accept that they thought I was healthy - wasn't normal behaviour, and that probably contributed a few nails to my crucifixion. From my perspective though, I felt profoundly unwell. Would anyone in my situation, periods of confusion, smelly urine, massive heart palpitations, a neutrophil to lymphocyte ratio of above 11, not want to know what was causing it? It seemed and still does seem irrational to me not to get answers. This is a point I will never understand, not even with the benefit of hindsight.

Over the next 10 days or so, the voice in my head gradually lost energy, and my thought pattern mostly returned to normal. Interestingly enough, this also coincided with that weird urine smell slowly diminishing. At no point was a spinal tap done, or even a consultation with a neurologist. I spent most of my time talking to psychiatrists and their students mostly like a circus exhibit. Only one other patient spoke English in the facility, but unfortunately for me she was a 17-year-old Russian female, and they wouldn't let me talk to her due to our age difference, so I spent most of that time on my own. They did daily exercises and what not, but I refused to partake. I wasn't impolite or disrespectful, I just didn't like the fact they suggested it wasn't my decision to partake or not.

During those ten days, I should note, I developed very strong akathisia. Akathisia is this horrific state where your body can't stay at rest. If you sit still, you get this internal pressure build up that gets worse and worse, and the only way to relieve it is to make a movement. If you see movies of people pacing around mental health facilities, often it's probably this that's contributing. They never told me what it was, and I was highly distressed. I remember trying to sit in a chair and eventually having to go walk for a few hours in circles as I just couldn't sit still. Even when my friend came for a visit, which was occasionally allowed, I remember sitting next to him and being embarrassed that I suddenly had to jerk or move a limb, especially since I had no idea why. I'm sure it didn't help the perception that I wasn't in fact crazy.

I found out later that akathisia, while sometimes common with long term antipsychotics, isn't a normal response after just a few days. In the literature this is known as a paradoxical reaction to antipsychotics, and it can present with bad akathisia in a short time period. Often it's a warning sign for autoimmune or other forms of encephalitis as it means the brain is inflamed. Yet nobody noticed this.

Released

Around the start of March, they considered me improved enough to be discharged. Mentally the voice had gone away, which I'm sure they attributed to the antipsychotics, but I still felt absolutely horrible. I had profound fatigue, and now had new symptoms such as random muscle fasciculations. My autonomic dysfunction continued to get worse - I started having issues maintaining my body temperature, and would randomly break out in sweats. I was having trouble feeding myself mostly due to a change in my hand/eye coordination. I would use a fork to feed myself but felt like it was a lot more work directing it to my mouth.

I still felt I didn't have answers, so I started looking for them. I booked an MRI of my brain with a private clinic, and unfortunately it didn't really show anything. I felt like I couldn't use the public health system any more, since if I showed up at any point I was fearful they would just commit me again.

As part of my release, I was to meet a psychiatrist every two weeks to monitor my progress. During the first meeting I had told her I had an MRI, and she looked profoundly disappointed. She said the doctors in the hospital said I was fine, and it was irrational to continue searching for answers. I told her about my recent symptoms, which she just dismissed as related to my hospitalization. Regardless, she increased my antipsychotics, thinking that my efforts to figure out what happened to me were evidence of an ongoing delusion, when in fact I was just trying to solve the puzzle of what had been and continued to be happening to me.

This was a lonely period for me. I didn't know what to tell my friends, what to tell my family. I was embarrassed and scared. If I showed up at the hospital, would they lock me up? What did the future look like for me? I felt like all my dreams had been flushed down the toilet. I also felt betrayal too, like my social network had let me down.

There is a famous example of someone entering the hospital with autoimmune encephalitis and ending up in the psych ward like I did. It's detailed in the book Brain on Fire. The difference between her story and my story is her friends and family told the doctors they were wrong, and they needed to stop treating it like a mental health issue. Eventually they did a brain biopsy and found anti-NMDA receptor antibodies, which was the cause of her encephalitis. But her friends and family advocated for her, nobody advocated for me. I felt let down.

I want to be clear, I don't blame my friends. Being put in that position isn't something any friend should ever have to deal with. I have no doubt my friends care about me and wanted a good outcome. But I still am disappointed with how it all turned out. Rather than be supportive when I was visiting doctors, I was made to feel like I was being excessive. Instead of insisting to the doctors I wasn't crazy, and should get a neurology consult, they just added fuel to the story that I was depressed. Because I didn't immediately get better during the months that followed, some of my friends even suggested I wasn't taking my meds, and that they might want to watch me do it for a while. I kindly told them to fuck off.

Despite that, I am super grateful for the support I did get. One of my childhood friends dropped everything in Thailand and flew to Spain to eventually bring me back to Canada in June, at his expense. I genuinely don't think I could have done that journey on my own. My brain fog was absolutely horrible during that period, to the point I couldn't even figure out how to use Excel. Navigating an international flight would have been daunting for me.

The Flight Home

When I left Spain, I was in rough shape. So much so that I assumed I was never coming back. I took my degrees off the wall, my camino certificate, a few of my favourite personal photos, and left a goodbye note in my living room. Not only did I think I wasn't coming back to Spain or Europe, I wasn't even sure I'd be able to live on my own going forward.

I didn't tell my family I was coming home, and when I showed up unexpected my sister burst into tears. Like I said, I'm forever grateful a friend came to get me and bring me back, as I was spending most of my day in bed and didn't know what to do.

Here was the shot on final approach to my home town in British Columbia's Fraser Valley.

First Help

When I got to Canada, I immediately went to emergency and told them mostly what happened. They did an in hospital CT scan and exhaustive tests. It was the first time in ages I felt like someone was taking me seriously. Somewhat fortuitously I think is that they found an anomaly on my CT scan, which elevated my case in a short amount of time. It turns out it was just a visual artifact from a piece of titanium in my face, but it let me skip a pretty big line.

When I first saw a real neurologist, he told me in no uncertain terms I wasn't crazy and to stop taking the antipsychotics. I felt immediately better. He said the odds of a 40-something year old male with no history of mental health to suddenly develop schizophrenia or something at exactly six weeks from a viral infection known to cause psychosis in some people is pretty much zero. Or at least, there were about 50 things that should have been excluded before that diagnosis. He wasn't authorized to get me a lumbar puncture but they did test me for serum markers for autoimmune encephalitis and para-neoplastic syndrome. They were negative, but he said that didn't mean all that much since they should have been measured during the acute event, and CNS was the best place to see them anyways. He also said about 50% of autoimmune encephalitis is seronegative, so negative blood tests aren't conclusive. The fact that I had a prodrome period, autonomic dysfunction, and altered mental state should have put me in the "probable" category instead of not being considered at all.

I should note that since quitting those meds, I haven't had any deviations in thought pattern or recurrence. Whatever happened was limited to the acute event.

Was it covid related? That's my belief, and I'll detail that further shortly. There were lots of studies showing people who get covid and develop psychosis around the six to eight week mark, which matches my trajectory. I saw a neuro-immunologist about one year after the acute event. By then I had lots of evidence of high cytokines and covid related abnormalities. With the entire picture, she said the most probable factor in the psychosis was a covid related autoimmune encephalitis.

What do I think happened? It seems clear based on my current cytokine values, which are still sky high, that I might have experienced something like a cytokine storm around my acute psychotic event. The high HR and brain abnormalities could be a sign of the cytokines breaching the blood brain barrier. In fact, even years later, I've measured up to 1000 for interleukin beta, and that's one of the most neurologically relevant cytokines that can pass the BBB.

The smelly urine is something I've thought about a lot. What was it? And why did it match the trajectory of my hospitalization?

There is something called the kynurenine pathway which shunts tryptophan away from producing serotonin. This process would severely fragment sleep, which is what happened before the event.

Here is how it could produce encephalitis, starting from high cytokines:

During a COVID-19 infection, the body is flooded with pro-inflammatory cytokines, specifically Interferon-gamma (IFN-γ), Interleukin-6 (IL-6), and TNF-alpha. This shifts the kynurenine pathway into overdrive:

1. Extreme IDO-1 Hyperactivation: The heavy viral cytokine load aggressively stimulates the IDO-1 enzyme in CD14+ and CD16+ monocytes and microglia.
2. Massive Tryptophan Depletion: Tryptophan is heavily shunted out of systemic circulation. Serotonin levels drop catastrophically, immediately setting the stage for the profound sleep fragmentation and mood crashes associated with acute neuro-COVID.
3. The Neurotoxic Inundation: Studies analyzing the cerebrospinal fluid (CSF) of acute COVID-19 patients have shown massive spikes in Kynurenine (KYN) and Quinolinic Acid (QUIN).
4. Encephalopathy and Excitotoxicity: While kynurenic acid (KYNA) attempts to block the NMDA receptor, the neurotoxic branch (QUIN) surges to a degree that it hyper-activates the NMDA receptors. The result is widespread glutamate excitotoxicity, severe localized oxidative stress, and direct mitochondrial damage. This induces standard neuroinflammatory encephalopathy—manifesting as delirium, extreme brain fog, and seizures.

My own gut feeling is what I was smelling in my urine was a byproduct of that reaction.

Return To Spain

Around Christmas of 2024, so six months after I arrived in Canada, my counsellor thought I had made good progress with coming to terms with everything that happened to me. My brain fog had started to resolve, even though physically every day was still a struggle. That said, for the first time in ages, the thought of returning to Spain, even for a visit, didn't seem out of the question. So I decided to do an exploratory visit just to see how I felt.

I won't lie, I never thought I'd see Europe again, so sitting at Vancouver airport on my way back felt surreal. I still didn't have many answers at that point, but I missed my friends and my old life. And nobody had really been in my apartment in six months, so I figured it was worth at least sorting that out.

During that visit I also had access to a lot of good health care, and managed to do a pile of screening tests. Both my testosterone and thyroid hormones were low, so a doctor agreed to fix both. The testosterone made an immediate improvement and by the time I got back to Canada even my sister noticed the change in my demeanour. Consequently, looking through my old labs, both my testosterone and thyroid hormones had started collapsing leading up to the hospitalization, so perhaps this was a general dysregulation of the entire HPT axis due to covid.

Once I got back to Canada, I realized any shot I had at actually figuring this out with any certainty rested in Spain. While the Canadian health care system got me back on my feet, the level of testing I could do in Europe was way ahead of what I could get there. So I decided to head back and continue my recovery there, which is where I've mostly been since January of 2025.

Long Covid

After getting back to Spain for good, I finally decided to start unraveling the entire process of what happened to me. AI had started being prevalent at that point, and it helped me unravel the first few threads. It told me I likely experienced a cytokine storm leading up to the hospitalization, and that I should check my cytokines. Sure enough, my IL6 was over 60, the first lab result that really showed me something wasn't normal. Eventually I pulled all the threads and got a pretty good picture that whatever was happening to me was covid related, and probably caused the hospitalization too.

At this point I had basically settled into what is a long covid state. The labs I discovered then, which mostly resembled the labs I have now, show that my IgG for both the nucleocapsid and spike protein are both high, and occasionally climbing. IgM, usually the sign of an acute infection, hovers near 1.0, which is the positive threshold, occasionally going above it.

My covid specific CD8 and CD4 cells are still reacting to covid, almost like they are still seeing it on a daily basis.

My immune checkpoints, which measure how exhausted my immune system is, are high, and have been since I started measuring them. So basically, whatever my immune system has been and is still fighting, it's losing the battle, or at best case it's a stalemate.

So I eventually learned the cause, and that it was covid that led to long covid, and that's where I've been mostly ever since.

Three Year Anniversary

I'm going on my three year anniversary now, so what is my current state? Well, mentally I've recovered quite a bit. For the first year I wasn't able to do much and spent a lot of my time sleeping and feeling my muscles jerk in bed. I engaged a counsellor for a period of time, for obvious reasons. Many people who endure a psychotic episode don't remember much of it. I am unfortunately plagued with the opposite, full memory recall of the entire event. It was mostly like being a passenger in my own body for a week or so, and it's the most traumatic thing I've ever experienced. I can't tell you the emotional strain or stress caused by thinking everyone you love is dead and that you are the cause, which is what I lived for the better part of a week.

Despite that, that part didn't cause me most of my trauma, and it's not what I discussed with the counsellor. I made peace with that since I understood it wasn't my fault. The part I truly struggled with, if I'm honest, was the actions of my friends surrounding my hospitalization and afterwards. I didn't understand how I went from having a full scholarship to university, to being awarded patents, to suddenly not having any agency in my own life, and friends actively suggesting incarceration for my benefit. And like I said, I don't blame them, but all of this was hurtful and traumatic. I felt like my trust was somewhat shattered, and it's been hard to get back. Even though the events were three years ago, I still feel like I need to tiptoe around some people. If I go to the doctor, will they think that's weird? If I have a bad day, will they think it's happening again?

My counsellor actually deals a lot with substance abuse. She said one of the most hurtful things she encounters is people with substance abuse who go get help, then return home. And at home, their family constantly is worried about them falling off the wagon, or sneaking drugs into the house, or them having a bad day. It's like everyone around you reminding you of a period of time when you were at your worst, and it's not helpful. That was the feeling I had, and it's one I still struggle with.

Because of my physical limitations, I can't go and do many things. And even now I feel like friends don't entirely understand when I don't show up. In my case too, I'm always wondering if they think it's real or not, or if they think I'm backsliding. I had one friend who always was insistent on me telling him my entire plans for the week. It was like he needed to know I had a schedule and was keeping myself busy. But it wasn't a line of questioning I ever got in the old days. Eventually I brought it up and politely asked him to stop, since it made me feel bad, like it wasn't ok that I didn't want to do many things or I wanted to stay home.

I'd say I spend about 50% of my time in some form of a PEM crash. For the longest time if I'm being honest, I didn't even know what PEM, or post exertional malaise, even was. All I knew is from time to time I would feel profoundly ill, like my entire body just ran out of sugar at the same time, and would crash. I would end up in bed or on my couch for hours or days.

My brain functions a bit better, but I do get tired a lot more easily. I tend to need a nap midday, even on a good day. And my muscles always hurt, like I've been at the gym all day. I once hiked the Camino de Santiago, 800km from France to Spain. And even on days I walked 40km, my muscles didn't hurt like they usually do day to day for me.

I tend not to notice all that much during the day, because I'm used to it. But whenever I crawl into bed and finally relax, only then does the full magnitude of how much it hurts hit me. I've also had tinnitus that started from my second covid vaccine. Spain isn't a quiet country, so that noise is mostly drowned out during the day due to ambient noise. But at night when I crawl into bed I always hear that ever present whistle reminding me of what's going on in my brain.

I don't feel particularly de-conditioned, despite my inability to do much. That seems like a paradox I know. But on the odd day I get a break from long covid, even for an hour, I can walk 5,000 to 10,000 steps mostly without difficulty. If they magically cured this disease somehow, I would probably only be a month away from climbing a hill top again with a backpack, or getting on my bike and bikepacking around Spain. But that doesn't seem likely unfortunately, at least not for a few years.

I hope like many people this will spontaneously resolve at some point. But it seems mostly like full recovery is a pipe dream, certainly not when it hits the level I am at.

And yet, I still have gratitude. I know lots of people with this disease who are bed bound, and forced to spend most of their time in silence. I've seen people who were forced to choose euthanasia because they just couldn't handle the pain anymore. Despite respecting that, I never felt like I was that severe until this last year. On my bad days, I can actually imagine a state where if that became the normal, looking for a way out wouldn't be unreasonable. A person can only endure so much, even if they're strong.

It seems like based on current research, there is a sizeable group of people whose long covid symptoms are probably the result of a viral infection that became chronic. If that's the case, then I'm probably firmly in that group based on my labs. Which hopefully means if a treatment comes out that can help eradicate it, I might get some of my health back. But with each passing year, I do worry how much damage this is causing, and how permanent it might be. My cytokines like IL6 have been 60-100 mostly for nearly three years, that on its own can be pathogenic. What else is going on inside that I don't know about? Given how painful things are day to day, and how bad I feel even on a normal day, would I even notice something bad was happening, like cancer? I'm not sure I would to be honest.

So, as I approach year three, I'm still hopeful they find a cure, and disappointed when I see researchers continue to go in circles. I realize this is a hard problem without easy solutions, but the research community (other than a few clear exceptions) seems to be stuck testing easy things like LDN and GLP1s, none of which will meaningfully move the needle for most of us. And yet I know that the ME/CFS crowd has had to endure this for decades, which makes it even more painful.

Next year is my ten year anniversary of when I walked the camino. I had promised myself ten years ago that I would walk it again ten years later on my birthday, which is April 2027. It's obviously impossible now, and that makes me sad. I knew it was a possibility these last few years, but I never really accepted it until recently. At the end of the day it's not a huge deal, I can walk it in the future, but it is a reminder of what this disease has taken from me, and taken in general.

I do still have some mobility, I can get on a plane and go somewhere new. I generally just make sure I have a safe place, like a hotel, I can go when I crash, which is often. On a recent trip to Poland I couldn't even have a morning coffee in a cafe without crashing, so I spent a lot of time in bed just waiting for a crash to leave. But not being stuck in my own home helps at least mentally, even if I'm just going from one bed to another.

I had hoped by the time I finished writing this post, we would have found a cure. Which is why it's taken me nearly three years to finish it - I always hoped there would be a happy ending. But happy endings are genuinely only in fairy tales, and long covid isn't that. So let's hope they figure this out soon, for the sake of all patients and people suffering day to day.