2024 In Review Part 3 - Impaired Brain Metabolism and How to Deal with It

 

Part 1 Here, Part 2 Here

As I outlined in the previous section, the major long-term issue I’m dealing with at this point is widespread impaired brain metabolism - Most areas of my brain are deficient in their capacity to produce energy through traditional means. What I’m going to do here is expand a bit on what that means and how that works.

In a standard, simplified framework the brain is considered to run entirely or nearly entirely on glucose. This makes the cells of your brain and nervous system distinct from nearly every other cell in your body, which can seamlessly blend glucose and fatty acids as fuel sources in various proportions. Your muscle cells, for example, can freely convert fatty acids to energy through a process called beta-oxidation, essentially the “burning” of pure fatty acids.

But beta-oxidation doesn’t occur in the brain or nervous system. Thus, the typical understanding (which is indeed true in a general sense) is that the brain must use glucose for its required energy production. What happens in a range of neurodegenerative and other neurological conditions, however, is that your brain simply doesn’t take up and utilize glucose to a degree sufficient to meet energy demands. I would contend that the reason this usually happens, typically in an aging, metabolically unhealthy population, is related to chronic hyperglycemia, hyperinsulinemia, and insulin resistance. The same insulin resistance and chronically elevated insulin that characterize diabetes and other chronic metabolic conditions manifest in the brain as well (you may have heard Alzheimer’s referred to as “type 3 diabetes” at some point) and usher in a gradual, years-long degradation of metabolic function.

That situation, obviously, does not apply to me. My metabolic health is fantastic, and there was no gradual onset over the course of years or decades. My onset was acute, the result of whatever exact autoimmune reaction was triggered in response to the Pfizer Covid-19 vaccine. While my onset was clearly sudden, its hard to establish exactly how sudden. It may have been nearly instantaneous with the initial autoimmune manifestation, or it may have been exacerbated over months of severe autoimmune symptoms. Regardless, it was not the typical insidious onset you’d see in chronic neurodegenerative disease.

PET Scan Results

So what does my testing show? Unfortunately, there aren’t a ton of clues. The way a PET scan works is by essentially administering an IV of radioactive glucose and observing the reactive signature “light up” as those radioactive molecules are utilized in the brain. The more glucose each part of the brain uses, the brighter and redder that area will show up on a scan. A localized red spot, for example, might indicate a tumor greedily gobbling up glucose at an increased rate. Conversely, areas that take up less glucose than you might expect are a blue-green color. This is what you might see a dementia patient slowly losing functional capacity as their ability to convert glucose to energy wanes.

My brain had a lot of blue and green areas, indicating widespread failure to take up and/or utilize glucose at a level consistent with my brain’s energy needs. But there isn’t much more to it than that. The PET scan doesn’t tell us exactly what is damaged, or how and why that damage prevents proper function (although I do have ideas). I also don’t have a neat and tidy number attached to the result - There’s no highly quantitative assessment that lets me tell you how deficient my brain function is. I also don’t know anything about the rest of my nervous system, which may very well be suffering from the same defects. The only thing I really know for sure is that my brain doesn’t produce energy properly and that attempts to force it to through basically any level of mental effort result in a range of neurological complications as it ultimately fails to meet the demand, instead propagating whatever inflammatory damage drives symptoms for hours, days, or even weeks after the effort.

Dietary Approach to Impaired Brain Metabolism

 

Thankfully, the other thing I know for sure is how best to handle this situation to hold myself together as well as I’m able. That notion that your brain only uses glucose for energy? That’s highly simplified, and alternative sources can be leveraged to provide various degrees of relief. Unfortunately, this is a topic on which most physicians appear to have stunningly little education or understanding, which has led to more than a couple dead-end conversations with neurologists who frankly have no understanding of brain metabolism (more on that at a later date, but it includes one doctor trying to tell me that because she didn’t know what they meant, that the test results may be unrelated to my symptoms and that I was probably just depressed. She then tried to prove her point by googling impaired brain metabolism and showing me the first result…which listed only epilepsy, Parkinson’s, and Alzheimer’s as typical manifestations of such brain dysfunction).

I’m going to try to keep it pretty basic, but I do want to at least touch on the three main alternative sources your brain can use to produce energy – alcohol, lactate, and ketones. There’s also a fourth “alternative” – the increased consumption and utilization of glucose itself that occurs in response to exercise.

I mentioned previously that alcohol consumption was fairly pivotal in cementing my understanding of my current situation. The fact that alcohol very clearly improves my symptoms and aids recovery from acute severe episodes drastically limits the number of problems I could be dealing with. But alcohol is an easily available source of brain energy, and in fact its one that healthy people prioritize to a degree when they consume it. This isn’t really for “good” reasons – alcohol can’t be stored in the body and is acutely toxic, so your body will make efforts to use it as an energy source in order to clear it from the bloodstream. In a healthy person, this manifests in part as a downregulation of glucose consumption in the brain and a partial replacement of that energy flow with alcohol instead. For me, glucose consumption is chronically decreased anyway, so alcohol just serves to fill in the gap and make me “whole” for a certain period of time.

As I discussed previously, I was strategically using alcohol this year more often than I would have liked from an overall health perspective. I wasn’t drinking for or to any real level of intoxication, just consuming a deliberately gentle flow of a few drinks maybe two to three times a week. It was, very literally, strategic, and often necessary to keep myself semi-functional for another day. This is something I’ve felt the need to do far less frequently in a ketogenic state.

The next alternative fuel source is lactate, which is tough to separate from the increase in glucose utilization during exercise, so we’ll discuss them together. Lactate (or the very closely related lactic acid) is often viewed somewhat negatively or as a “waste” product because it increases in the bloodstream during strenuous exercise. However, in reality its just a byproduct of typical metabolism and only increases in the blood when the ability to clear it can’t match production. Its production increases even at lower levels of exercise intensity, and one of the manors by which it can be cleared is to be taken up by cells (including those in the brain) and converted to pyruvate for direct energy production. Thus, the increase in lactate metabolism during exercise provides an additional partial source of brain energy.

The degree to which that helps me is unclear, however, because it generally happens in concert with increased glucose uptake. A variety of glucose transporters become more active and efficient during exercise (for good reason – to readily provide you with fuel). Its extremely apparent that this effect still occurs for me as well, despite the general impairment of glucose utilization. Its really quite a weird phenomenon – If I’m just barely well enough to get out the door to exercise, I can begin a slow walk/jog/hike and eventually my neurological health will improve. How long that takes seems to depend on how poor I feel – at functional baseline, its 15-20 minutes before function and feeling both start improving. When I’m worse, it can take closer to an hour – and when I’m in that poor of a state, I can continue to noticeably improve for hours if I continue to exercise. To that end, some of my best stretches of health have actually occurred as a result of hiking trips in the mountains. Not only do I completely avoid cognitive strain, but several hours a day (plus some lasting effect after the fact) of increased glucose and lactate metabolism provides sufficient energy availability for basically an entire day.

Now the most important one, in my opinion – ketones. In a low-carbohydrate, low-insulin environment your liver converts some fatty acids to ketone bodies, which can serve various functions including as a fuel source. Ketones are functionally unique from their parent fatty acids in a number of ways, but the most important for the purpose of this discussion is their ability to be directly taken up by the brain and nervous system as an energy source. Thus, a person in a consistent low-carb/low-insulin state can expect to have access to a consistent stream of ketones for energy.

This consistency is a major differentiating factor when compared to other alternatives like alcohol, carbohydrate binges, or exercise. Alcohol and massive carb spikes are of course temporary, acutely unhealthy manners by which a person can increase energy availability. And despite my desire to run and hike all day, exercise is ultimately temporary as well. Ketones, however, are not. Ketones are forever. Provided, that is, that you maintain an environment conducive to their production.

An important note on ketones is that their contribution to the brain’s energy requirements is not demand-driven, but supply-driven – the uptake and utilization of ketones is proportional to their concentration in the bloodstream. Thus, a “standard” ketogenic diet that you or a family member or a friend have probably tried won’t actually help me all that much. The traditional advice to remain under 20 grams of carbs per day will typically only elicit low levels of ketone production, and thus low levels of ketone-based energy. This is basically irrelevant for a person who only endeavors to manage blood sugar and curb sugar cravings, but makes a great deal of difference for me.

Not only is my focus on limiting carbohydrates to something like 5 grams per day, but I also moderate protein intake (as it has a mild insulinogenic effect) and maximize the fat percentage of my diet. This “therapeutic” ketogenic approach focuses on maximizing the concentration of ketones in the bloodstream, and thus the degree to which ketones can provide relief in the face of impaired glucose metabolism.

Unfortunately, the ketone levels I’ve found are necessary to truly prevent the onset of symptoms haven’t really been obtainable in the context of “normal” food consumption. For me, for now, it seems only extended fasting or a heavily fat/oil-based diet that even further minimizes protein and incidental carbs can raise my ketones to the levels necessary to approach true non-symptomatic function (For context – a person on a standard mixed diet usually has ketone levels of 0-0.1mmol/L, a “standard” keto dieter might hang out at 0.5, I bounce around between about 1 and 3, and need something more like 3.5-4+ to ward off symptom onset).

There are other methods of temporarily elevating ketones above my standard baseline. One is exogenous ketones, suddenly widely available in the last couple years. These work great, raising ketone levels by 1-2mmol/L for a couple hours. However, they are quite expensive and only temporary. That said, I do keep them on hand and use them sometimes to escape potentially calamitous situations. Another shortcut, so to speak, is to drink MCT oil. Medium chain triglycerides are essentially too short to be efficiently burned or stored the way longer chain fatty acids would be. Instead, they are preferentially converted to ketones, even if the person drinking them isn’t consuming a ketogenic diet. This is less effective than exogenous ketones, in additional to being kind of tedious and slightly gross. But its very cheap when purchased in bulk, so I do consume several servings a day at strategic times (ie. During work) in an effort to support ketone levels and minimize symptom onset.

Conclusion 

So that’s basically it. My brain doesn’t properly produce energy through traditional means. If I don’t diligently care for the situation, it quickly becomes dire and I’m relatively easily knocked on my ass by simple mental and cognitive tasks. I am, at baseline, still made bedridden by the job I’m trying to work every day. The reason I make it to work more days than not, the reason I can mostly hide my symptoms while I’m there, and the reason I’m able to even go for a brisk walk (let along run multiple hours at a time), is because I approach each day in a deliberate, evidence-based fashion that leaves little wiggle room if I hope to remain functional. The combination of a therapeutic ketogenic diet, ketone-raising supplements, and as much exercise as I can manage keep my brain functioning far above where it otherwise would be. At all hours of the day, I am, often through multiple avenues, closing the substantial gap between the energy demand of my brain and nervous system and the critical shortage of supply that otherwise exists.

The hope in 2025 is not that I will magically get better, because I think at this point it would be naïve to assume that’ll ever happen at all, let alone soon. The hope is simply that I can manage things at a high enough level so as to continue showing up to work while cobbling together enough exercise that I feel like I can, indeed, exercise. The hope is to string together days and weeks away from work that allow for real adventure, be it running or otherwise. And the hope is, at least temporarily, to be fit and healthy enough to accomplish something cool by the end of the year, whatever that may be – and to prove that my life can be completely ripped apart, left broken by autoimmune disease and brain damage, but that I can still exist fully on the other side.

 

 

2024 in Review Part 2 - Running 50 Miles is Easier Than Going to Work

 

Part 1 Here

Ok, so…By early 2024 I was 100% confident that my lasting symptoms were being driven by metabolic impairment of the brain. But knowing this and being able to do a lot about it are two different things. In the spring, I was offered an opportunity to change offices at work, from one of extreme tension and hostility to one that was far superior on both professional and interpersonal levels. And while this role was “better” by basically any metric you’d use to typically judge a job, it was also a bit more cognitively intensive.

To be clear…I was suffering on a daily basis in my previous role as well, but in a way that was often a touch more manageable. I could usually girt my teeth and continue to function in my day-to-day life, judiciously using leave (both personal leave and leave without pay) to manage the worst bits and sometimes string together stretches of days in which I felt nearly normal. This is how, for example, I was able to win a small trail race last fall after being away from work for almost 4 weeks in a 6 week stretch.

The new role, revolving around airspace and routing automation, wasn’t an extreme increase in workload in theory. But I also no longer had a boss fighting tooth and nail to shield me from fulfilling my job duties, as I had previously. I did a bit more work now - but having largely existed on a knife’s edge for so long anyway, this incremental increase in cognitive effort took a fairly extreme toll.

The most ironic part of all of this continues to be the fact that I can, at least when I feel well enough, continue to exercise at a high level without issue (and in fact, as I’ll discuss in part 3, its as important as anything in managing my condition). My brain doesn’t work but my body still does. To that end, despite barely running all spring, I was able to complete a 50 mile run in June of this year. I had been in Oklahoma City for 2.5 weeks for a very, very relaxed training course related to my new role and had just enough good health to exercise during most of my time there.

Nothing to do on the weekend was a good enough reason to drive to NW Arkansas for a 50 mile “backyard” style race. It followed the typical format of a backyard ultra – 4.1666 miles every hour on the hour – but instead of an endless race of attrition, it simply ended with a time raced on lap 12. So all told, a very easy way to get a 50 miler done in a bit over 11.5 hours. True to standard, I felt quite rough race morning and during the early laps, but improved considerably throughout and had an enjoyable experience overall.

That race was the end of the highlight reel though. Work has been too hard, and I’m not entirely sure my health hasn’t actually been slowly deteriorating as a result of the constant inflammatory stress that results from forcing my brain to do things it really can’t. The coping mechanisms over the summer were less than stellar – binge eating and alcohol (again, for reasons I’ll explain) both moderate symptoms enough to maintain some semblance of function. Not any kind of health, mind you, but enough function to work 25-30 hours a week while keeping the neurological complications on the right side of bedridden. Unsurprisingly, I gained about 10 pounds in 10 weeks employing this reactive strategy of brain energy management.

Meanwhile, I’d been fighting all year to find a doctor wiling to order the test (a PET scan of my brain) that I knew would prove the significant metabolic deficits driving my condition. I don’t really remember how many doctors I asked and how many times I was told no, even by doctors who seemed to agree right up until it was time to order the test. Finally, a neurologist at Johns Hopkins (one of I think 13 neurologists I’ve now seen) agreed to order the PET scan. Not that he necessarily wanted to - He was really just placating me and told me straight up that I was probably wrong about what the test results would show.

Well…as you can probably guess, I was not wrong. The PET scan confirmed impaired brain metabolism in the temporal, parietal, and frontal lobes, as well as parts of the limbic system, including the hippocampus. In short, a lot of my brain wasn’t working properly to produce energy. Unfortunately though, being right about the problem doesn’t do much to solve the problem. I could certainly be confident in my approach at least, which would now be a fair bit more diligent than briefly plugging holes with alcohol or excessive carb intake.

I finally this fall made the decision to commit long term to a strictly therapeutic ketogenic diet. I had been hesitant to make that change since successfully reintroducing fruit, but it seemed like an obvious best option moving forward. I’ll discuss more in the next section, but ketones are an alternatives source of brain fuel that can somewhat mitigate the negative effects of metabolic impairment without the obvious consequences of alcohol or binging on dried mango. My diet now consists of less animal protein, but more added fats such as tallow, butter, and heavy cream. I also consume a few servings of MCT oil daily as a source of additional fat, all as part of an effort to not only minimize carbs (like on a standard low-carb/keto diet) but to maximize fat ratio in an effort to drive ketones as high as practical.

The only other “intervention” so to speak remains the same as always – exercise as much as possible. Exercise increases metabolic activity in the brain. The more I exercise, and the longer each session is, the better I tend to feel. Days in which I fail to exercise before work are almost uniformly worse than when I do, and carry with them a high risk of failing to make it through the day. It certainly took a few weeks for the exercise to begin normalizing – while I had previously spent long stretches of time eating zero carbs on a pure carnivore diet, it was when my health was generally too poor to exercise anyway. A commitment to an approximately zero carb diet in the context of training and exercise was largely unchartered territory.

Where am I now? Ketosis is roughly as effective as binge eating and alcohol at mitigating extreme symptom presentation. The big difference is that its much healthier overall, and indeed I’ve now reversed most of the weight I gained gorging over the summer. Unfortunately, being roughly as effective still means I’m not well enough to get through the work week. I do manage to exercise most days, especially if I run in the mornings early in the week, although it often falls apart in concert with my struggles at work. I still spend quite a bit of time in pain, with sleep problems, numbness, and dizziness permeating most of my days. I do think the ketosis blunts this to a degree, of course, and so “catastrophic” episodes that leave me briefly bedridden and unable to run for a week at a time are less frequent than they otherwise may be.

I’m continuing to try to combine deep ketosis with frequent exercise to the best of my ability, while limiting cognitive strain where I’m able (It’s taken a very long time to write this for largely that reason). Beyond that, though, there’s very little to be done. There is no medical treatment for impaired brain metabolism (part of the reason some doctors wouldn’t order the test) and no particular reason to be confident this will ever get better after all this time. In fact, impaired brain metabolism is a hallmark characteristic of Alzheimer’s, Parkinson’s, and other neurodegenerative diseases. In a more “normal” patient, such findings would generally be expected to continue degrading over time and would likely foretell progressive impairment and damage to the brain and nervous system.

In part 3, I’ll explain why I don’t think that worrying forecast necessarily applies to me and discuss brain metabolism more broadly in the context of my condition. 

Part 3 Here

2024 In Review, Part 1 - A New Paradigm of Brain Dysfunction

Its been a while

In fact its been a good solid year since I’ve written anything here about my health and life journey. Part of that is because things have been fairly dynamic, and part of that is because things have been fairly difficult.

While everything I’ve previously discussed about my health has been through the lens of autoimmune issues, it was already becoming increasingly clear a year or more ago that the situation had been evolving and that an updated paradigm was warranted. While the autoimmune issues were very real – you don’t just test positive for every marker of Lupus without an autoimmune problem – and the likely root cause of my overall condition, my symptoms were becoming increasingly decoupled from acute immune triggers. This had been the case since at least mid-2023, after my second week+ long fast. By this point, I had fasted for a week on two occasions, for 3-5 days on several more, and for 36-48 hours probably dozens of times. I had adhered for long stretches to a pure carnivore diet, and only gently introduced the (theoretically) safest non-carnivore options like organic fruit and honey. To my knowledge, this is the only evidence-based approach to seriously fighting autoimmune disease and, one way or another, I had largely moved past these issues by the end of 2023.

What was also clear, however, is that I wasn’t healthy. In retrospect, I was still struggling to totally move on from the autoimmune paradigm and was sometimes shoehorning symptom triggers into that myopic view when it wasn’t warranted. To make things worse, the realization that the resolution of autoimmune markers and reduction in autoimmune triggers weren’t going to portend a full-scale return to health was fairly demoralizing. That can all be seen by simply looking back one year, at some musings that I’m not overly proud to have written.

What I knew very clearly at the time but was not fully exploring was that I struggled quite a bit at work. And this was despite the fact that my work was, um…..not particularly challenging. Bluntly and briefly, I was under the supervision of a boss who put her greatest efforts into ensuring that as much work as possible was shunted away from our department. It was a boring, uncomfortable work environment, but certainly not a busy one. Still, I did enough work to know that my symptoms were exacerbated and magnified by the effort. Conversely, symptoms diminished whenever I was away, and able to fully rest my cognitive faculties.

The notion that I was suffering from impaired brain metabolism was something in which I became increasingly confident over the winter. While specific foods didn’t trigger acute symptom onset like they used to, I could still manipulate symptoms by, for example, binge eating, which would preclude symptom onset in part or entirely. Exercise helped considerably as well, as I was often barely able to shuffle out the door before eventually finding improved health over the course of multiple hours of walk-jogging at an easy effort. These factors, combined with the obvious acute distress that accompanied mental effort either at work or home, largely cemented my new metabolic paradigm of neurological dysfunction.

However, the final nail in the coffin, so to speak, didn’t come until the first weekend in February. I flew to Las Vegas to spend a long weekend with my family, and frankly I felt like shit. I struggled mightily with pain and numbness on the flight, and the plan my wife and I had to show up early for a day of hiking ended with her leaving me behind to hike on her own. After a full week of work, I wasn’t in sufficient neurological health to function at a normal human level.

But, after a couple days wandering around the strip with alcohol in my hand, that had changed considerably. To be clear, this wasn’t some Hangover-esque degree of debauchery. I just simply sipped alcohol (largely not caring how it might affect my symptoms) for most of a couple consecutive days and felt really quite good. As I progressed from shaking in the trailhead parking lot to feeling as well as I had in months, I finally confirmed with certainty the metabolic damage to my brain and abandoned any remnants of the autoimmune paradigm for good.

The reason I was able to do this is because alcohol is, for all intents and purposes, a brain fuel. The traditional notion is that the brain only uses glucose for energy, but this isn’t really true (much more on this in a later post). The brain can also use, among other substrates, alcohol. So while I had once again wrecked my body all week by straining my brain in an energy-deficient state, I had followed it with a relaxed weekend of frequently available energy flowing from large cans of hard seltzer. While the obvious overall health implications still apply, in this case my brain and nervous system were recovering thanks specifically to an uncommonly available energy flow.

I’ll write specifically amount impaired brain metabolism and its consequences in part 3, but for now its enough to know that I had confidently assessed the major problem I was still dealing with. The arduous duel tasks of demonstrating it and dealing with it will comprise part 2.

Part 2 Here, Part 3 Here

Fuck Around and Find Out....

 ....That Your Underlying Health Is Still in the Trash

This is probably going to get long, and I’m kind of a broken record at this point. This will be the third post this year in which I detail the ways in which I’ve been unable to move fully past my autoimmune condition, or made a mistake, or failed to be as absolutely diligent as is necessary to keep my neurological symptoms at bay. I’ve messed up, again, and the ramifications of doing so have me deeply contemplative. So I’m gonna monologue for a bit.

I won a race a couple months ago. It was amazing, truly one of the greatest days of my life. I overcame so much to get to that point. I wrote about it here – About keeping neurological complications at arm’s length and about the unusual ways in which my body failed to respond like I’m accustomed to when racing.

When things are bad, as they’ve been lately, my fine motor control and muscle function are noticeably impaired to a degree of, I dunno….lets say 30 percent. I twitch and shake, I bump into things, I drop things, I struggle sometimes with balance. I had none of those problems during the race. But it was still there, just a little…tiny…bit. Lets call it 2 or 3 percent now instead. My legs wouldn’t respond quite the right way when running hard. They cramped and seized early in the race and I had to fight my body the last 45 minutes of the race. I won in large part, I think, not by outright running faster but by taking risks on the technical sections and being willing to go all the way over the edge to win a small local race.

I had been eating a lot of dried mango in the week leading into the race. It was a food I had been eating a bit with some regularity in small amounts, but only now was consuming the way I had been consuming blueberries and bananas. And for whatever reason, it doesn’t work for me. It induces neurological symptoms, to at least some degree. It became apparent as I experimented the week after the race that the symptoms I described before my first race – “intermittent headaches, cervical numbness, peripheral fatigue and tingling” – came and went in concert with appreciable mango consumption.

Ok, so we found another food I probably shouldn’t be eating. Easy enough – In fact I raced again the following week to better physical results. This race was hillier and longer, a 25k trail race (or 26.5k, but who’s counting?) in what they call “Mountain Maryland.” I lost – my 23^rd (!!!) career runner-up finish – but raced sooooo much better than I had the week prior. The two of us ran together for 20k before I totally exploded hiking up a ~30% climb with about 4 miles to go. While the week prior my body rebelled in the early miles, this time I had no such problems. I raced normally, and it was great. At this point, in early November, I felt so, so good about things.

A couple days later I got a flu shot. This was the third time since the onset of my autoimmune condition that I’d done so. The first two were basically fine – bad side effects, but difficult to assess any transient effect on my neurological symptoms as they were far more present generally one and two years ago. I had a day of obnoxious side effects again, and took it easy the day after. On day 2, I ran twice just like I had planned. Problem was I shook and trembled the entire way. I felt completely detached from my legs, which simply didn’t move the way I wanted them to. It’s so weird to describe – its like the dial-up internet of motor function, like I can think about moving my leg and then sit and wait for it to finally happen. It’s a very shaky and unstable feeling.

Anyway, I ran twice. Had to stop a bunch to rest. Finally shuffled my way though an awkward 15 miles. And you know what? I did it again the next day. I felt worse and worse as the run progressed, but I got it done. And again the day after that, but this time 22 miles of suck. My resting heart rate was super elevated, I was having hot flashes, my limbs went numb whenever I sat down, my neck and head hurt like hell. But I shuffled through 22 miles anyway. Because I was too stubborn not to. And then I finally snapped a little bit. Those three days had been my worst in months. I was only weeks removed from feeling 100% normal and had 2 more races scheduled in the next few weeks. I was, to put it mildly, frustrated. And I gave into those emotions – I pigged out on cheese, salami, Naked fruit smoothies, plantain chips. Nothing acutely terrible, but several things at once that would all negatively impact my health and symptoms.

The next week, on Thanksgiving, still not feeling quite normal, I trudged through a few miles with my wife before completely giving up mid-run. Things just weren’t right and I had had enough. I told her I was done, I went home and, this time, I gave in completely. It was Thanksgiving after all, family was in town, and I hadn’t been quite right in a couple weeks or more. So what fucking difference would it make if I just let go and acted like a normal person? I drank hard cider, ate mashed potatoes and gravy, ate ice cream…I did Thanksgiving. And I cooked a good turkey, dammit.

And I felt it. I forced my way through the next day with ibuprofen and coffee (itself a major trigger of symptoms that I’ve avoided for some time), but spent the next couple days, including my 33^rd birthday, largely in bed. For months I had planned to run 33 miles on my birthday. Its something I had done a couple times when younger and wanted to do again, in part as an exclamation point on my triumph over my autoimmune condition. Instead I spent the day as I described above - I twitched and shook, I bumped into things, I dropped things, I struggled sometimes with balance. I laid on the couch and all my limbs went numb. I had a really bad day.

It was, frankly, really depressing. And this is part of where I get particularly contemplative – for two and a half years I’ve felt like I’m not allowed be upset, or to feel disheartened or frustrated when things are bad. Honestly I feel I’ve been, at least in part, conditioned to feel that way. I’ve been dismissed so frequently that every time I allow myself to experience any human emotion, I feel like I’m providing ammunition to all the doctors who look at half a dozen adverse autoimmune markers and still think this is all in my head.

Last year I had a doctor accuse of me of not actually wanting to be healthy. I tried to explain how massive a difference diet made – a year later literally a difference between winning races and spending all day stuck in bed, numb and twitchy. My approach was not only working, it was and is validated by dozens of studies and academic papers, and a functional understanding of evolutionary biology. But I couldn’t explain why I was approaching things the way I was, because she was raising her voice and cutting me off. She was accusing me of leaning into it, of choosing this, and enjoying this in some perverse way. She was accusing me, if I declined to take an antidepressant for my dizziness, numbness, migraines, impaired motor control, and stabbing neck, face, and cerebral pain, of choosing this for myself and refusing to actually solve the problem. This doctor was not alone in her assumptions.

I was positive for literally every marker of neuropsychiatric lupus. Symptoms of that condition include acute confusional state, anxiety disorder, cognitive dysfunction, mood disorder, and psychosis. I suffered (and when things are bad, still sometimes suffer) from every one of those symptoms. Suffering from mental, neurological, or cognitive symptoms does not mean I’m making this shit up. I’m not faking anything because I like the attention, and I do not want to be sick. It is, contrary to the opinion of seemingly every doctor and every fucking wannabe medical expert, possible for the nervous system to be subject to actual physical damage. Or to be the focus of a persistent autoimmune condition. It does not have to be a goddamn serotonin problem. It does not have to be a mental health problem. It can be a real, legitimate, physical disease.

But its been suggested, over and over, by doctors and “experts” and even normal people in my life that its all in my head. And I think I fight that specifically as hard as I can, for as long as I can. It frankly fucking sucks to be so diligent about everything you do, all day every day. It sucks to not be able to eat “normal” food without going numb and tripping up the stairs.  I should never have done what I did. I should never have eaten those things. I shouldn’t have given in and invited a greater relapse of neurological problems.

But I did. I gave in. Twice in less than two weeks I failed to be optimistic, and tough, and strong. I’ve so relentlessly pursued a return to health and fitness. I’ve run and lived and existed through so much pain and discomfort and impaired function and every so often I’ve failed to keep my head screwed on straight. And it makes me fail like a failure. Like I’ve compromised myself as a person, and proved right all the doctors and people who think I’m making this up, or who think I’m some kind of vaccine conspiracy theorist, or have completely refused to honestly engage with me for whatever other reason.

So where am I now? I’m trying to let go of all that and move on. I don’t really expect anyone wants to read all this but being open about my experiences helps me do those things. I’m trying to forgot about the doctors who have dismissed my condition or tried to simply diagnose me with depression, and accept that every so often I’m going to feel unhappy and frustrated with where my health is at, and that’s fine. I’m trying to accept it as part of the process, rather than view it as weakness or failure. More immediately, I’m about to start my third week- (or so) long fast. I actually feel pretty decent now and am exercising a bit, but given that my underlying health hasn’t progressed as far as I’d been assuming a month or two ago, I think it prudent to fast for a while and see if I can’t take another significant step forward.

Within two weeks, I’m going to feel “perfect” and be running every day. I’ll get back to it, training every day and eating the few things that don’t trigger any symptoms (no mango!) with no real plans to expand my diet any time soon. I don’t think there will be any racing until maybe April or so, but I’m planning on being in much better shape than I was this fall. I don’t have any specific goals in mind right now, but I do think my best races are still in front of me. I am persistently optimistic that this will be the case. And I’m hoping to get there, and be fully healthy, some time in the next calendar year. I guess we'll see...

Thanks for reading. All the best

So... I Won a Race

What: Lake Fairfax 10 Mile

When: October 29, 2023

Where: Reston, Va

Stats: Trail Race, ~10 miles, ~1000ft ascent

Result: 1st Overall, 1:13:09 (Results, Strava)

I won a race!

It wasn’t a big race. But it was, without question, the biggest race of my life.

Because it was a day I used to legitimately believe would never come. I didn’t run for over a year and a half, and frankly spent most of that time far more concerned with ever again living a fully functional life - With making it out the other side, with moving and sleeping and thinking like a normal healthy person. When I couldn’t stand up out of bed or walk in straight line, racing was often the furthest thing from my mind. And even if I made it back to some kind of normalcy, for some two years I never really believed I’d seriously compete at the front of another race.

But…. here we are. More than four full years after crossing the finish at Kona I finally, finally, finally found myself back on a start line. A much smaller, more low-key start line – a local race with about a hundred people. But a perfect first race back, and one I’d been counting the days to for quite some time.

Chamonix

How’d I get here, from a summer update that was still less than optimal?

Things have honestly gone extremely well lately. I’ve been delicate and disciplined and careful with every aspect of my health. For a good eight weeks anyway I’d been training daily with virtually no neurological symptoms at all. That even included a trip to Europe (running and hiking in Chamonix, France, it turns out, is basically unbeatable) during which I managed to avoid dietary or lifestyle “mistakes” of any kind. Without a doubt, this was the best stretch so far.

The week of the race wasn’t exactly perfect, however, and I wasn’t even fully certain I’d race on Sunday if things didn’t come around a bit. Nothing was terribly bad by any stretch, but I felt limited/impaired enough (by intermittent headaches, cervical numbness, peripheral fatigue and tingling) after work on Thursday and Friday that the race was in at least some degree of doubt. But, Sunday came as the neurological symptoms went, and before I knew it I was racing again.

 I don’t really know what to write about the actual race. It was a cool little event! A 10(ish?) mile trail race put on by a fantastic local race company. Mostly single track through the woods, but not particularly technical or hilly as far as single track through the woods goes. There was like 1000m of easy grass and dirt before the trail part, and a friendly guy named Scott pulled me out way too fast for my current fitness. I finally let him go and assumed he was gone for good, but I kept catching glimpses of him through the trees and finally pulled all the way back almost eight miles in.  

My legs had been rebelling since the early miles, in a crampy/seizey kind of way. Found this very frustrating, since I had run the first half of the course at roughly race effort the week before with no such problems. The nerve pain/tingling from the previous days was gone but it felt like I was having a lot of trouble producing the force I wanted (it doesn’t help at all that I’ve barely run hard in years). This actually felt more pronounced on the super smooth, runnable sections where Scott kept putting additional meters into me.

Catching up on the more twisty/technical section seemed like the only chance to press an advantage - Hammered it down a tight, somewhat rocky downhill to open a gap and just tried to hold on the rest of the way. Kept the legs in one piece the last ten minutes and ended up about 30 seconds clear by the end after what turned into about as painful a last mile or two as I remember. A relative lack of race fitness, a total lack of any hard training, and some minor lingering neuro problems combined to create a frankly strange end of race experience, where I felt my body fighting to keep everything together rather than being strictly limited by flat-out aerobic output. 

Finishing didn’t feel like I expected it to. When I had played it through in my mind over and over in the weeks leading in to the race, I imagined I’d be highly emotional at the finish. The thought of winning a race three weeks out had been making me emotional, after all. But in the moment, it was basically the opposite - It was probably the least emotionally present I’d ever been winning a race. Part of it was everything I just wrote about not being in great shape to race – trying to pull it all back together laying in the finishing chute leaves little room for emotion. Part of it was that the gravity of the moment just wasn’t hitting me like I thought it might.

 

I was incredibly excited to be sure– basically bubbling over really. But in that sense it was just like any other race, any other good result. I just felt so much joy and relief to finally be home. Not until my wife finished a bit later did I feel any of the “emotional” bits I expected. And not until I started writing this has it really sunk in that I’m really racing again, and doing it without any apparent consequence to my health.

But I am racing again! And for a second time in short order. I’m writing this the Thursday after Lake Fairfax, with plans for race number two already this Sunday, a fairly low-key 25k trail race in western Maryland. It took a day or so longer to feel recovered than it might have a few years ago, but the legs are ready to go and I feel better from a basic health perspective than I did a week ago. Let’s see if we can make it two in a row! Onward and upward!

Chamonix Ibex

Summer Health Update Part 2 - What 3 Pounds of Meat Every Day Does To Your Blood Work

 

While my neurological health remains a few percentage points short of ideal, I’ve also been increasingly in touch with other aspects of my health as I continue to seek optimal recovery. The amount of “general health” bloodwork I’ve sought, measured, and ordered has increased significantly and, with that in mind, I’ve decided to share the most recent round of (semi-) comprehensive of blood work.

Conventional wisdom suggests that eating a diet high in meat and fat is dangerous for cardiometabolic and chronic health. For over a decade, I’ve progressively ignored that conventional wisdom. For years, this meant eating a lower carb (for an athlete, at least) paleo-type diet. Since my vaccine reaction, it has meant consuming various degrees of low-carb and ketogenic diets. And for more than a year now, it has meant more than 90% of my diet as beef. While I was largely sedentary for the first two years of my illness, the last several months have featured increasing amounts of exercise.

Despite the extended lack of activity and the ostensibly hazardous dietary reliance on meat and fat, you can see below that my chronic health markers are generally quite good. Below are the relevant results from my latest check-in and my commentary on each of the metrics. My recent diet and exercise statistics for reference:

Background statistics - 

Height – 6ft 3in        Weight – 161 lbs.         Age - 32y, 7m

     

8 week exercise averages –

~47 miles/week hiking and jogging, 2-3/week ~20 min strength training

8 week dietary averages –

~3320 calories/day        

70.5% fat/27.1% protein/2.4% carbohydrate (~19g/day)

48% saturated fat/48% monounsaturated fat/4% polyunsaturated fat

3 day dietary averages –

~3430 calories/day

71.2% fat/23.7% protein/5.1% carbohydrate (~43g/day)

48% sfa/48% mufa/4% pufa

 

 

 

 

Triglycerides – 87 mg/dL (Reference range 0-149)

I eat tons of fat, but don’t have tons of fat moving around my blood. What gives? Well, your triglyceride levels don’t reflect fat consumption or triglyceride production by the liver. Trigs reflect fatty acid utilization and fat metabolism. If you efficiently metabolize/utilize fat for energy, you should have low triglycerides. Common recommendations suggest under 150 to be normal, but realistically 150 is pretty sketchy and any values north of 100 suggest room for improvement.

 

HDL – 68 mg/dL (Reference range >39)

HDL levels are primarily responsive to two factors – triglyceride levels, and fat consumption. Elevated triglycerides resulting from metabolic inefficiency subsequently lead to a reduction in HDL-C (you can read about why here!). Meanwhile, fat consumption directly increases the concentration of the structural lipoproteins that eventually form HDL particles. Ergo, low trigs + high fat consumption = high HDL.

 

Triglyceride/HDL Ratio – 1.28

Not a unique measurement, but a reasonably meaningful reflection of metabolic health. Because poor metabolic health increases triglycerides and subsequently decreases HDL, a ratio between the two is a decent proxy for metabolic health. Conventional wisdom would suggest something like 3.5 to still be a fine value, even though cardiometabolic disease rates start exploding once you inch above this level. Personally, I wouldn’t feel great about anything higher than 1.5-2. For fun, I’ll include comparisons to bloodwork taken the day after a brief spring “binge” (3 days of higher carb, higher calorie consumption) as well as the day I ended an 8 day extended fast.

	April “Binge”	April Fast	June
Triglycerides	127	84	87
HDL-C	50	52	68
Trig/HDL Ratio	2.54	1.61	1.28

 

LDL – 113 mg/dL (Reference range 0-99)

Just about the least meaningful standalone marker out there, despite the medical and pharmaceutical indu$try’$ endle$$ obe$$e$$ion with $elling $tatins in order to force it lower in basically everyone. You can read tens of thousands of words I’ve written about the problems with LDL here or here if you’re interested. I’ll say this for now though – LDL is hyper-agile in a metabolically healthy person. My values can effortlessly bounce between roughly 100 and 200 depending on what I eat on any given day. I don’t care to ever see numbers lower than that, as I see no benefit whatsoever (and, for whatever its worth, low LDL is associated with significant increase in death and disease for several plausible reasons). Furthermore, you’ll note that despite consuming tons of fat and saturated fat, this value is actually slightly below the population average, even if its slightly above the recommended level. That’s because saturated fat is absolutely not the prime driver of LDL levels.

 

Apolipoprotein B – 84 mg/dL (Reference range <90)

ApoB is the structural protein that forms LDL particles, and is slowly beginning to replace LDL as the en vouge cardiovascular risk measure (It is a better measure than LDL, but is subject to many of the same flaws as well). This value reflects the number of LDL particles in circulation, and you’ll note once again that despite eating tons of fat my values are actually below average and in the “approved” medical range. 

 

LDL/ApoB Ratio – 1.35

My ApoB, which reflects LDL particle count, is in the recommended range, but my LDL cholesterol is still high. How does this work? The answer lies in particle size – fewer ApoB particles carrying a given amount of cholesterol suggests those particles are on the larger size. This matters for a couple reasons – small particles indicate poor metabolic efficiency, while being themselves highly susceptible to the oxidative and glycemic damage that commonly triggers the immune-mediated atherosclerotic process. A ratio of 1.2 or so is a common cut point in the literature, with ratios below that suggesting significant cardiometabolic risk. I’ve previously forced mine as low as 1.15 with just a couple days of higher carb consumption, but would prefer not to see values below about 1.3 in typical conditions. Prior comparisons included here as well.

	April “Binge”	April Fast	June
LDL-C	108	180	113
ApoB	94	139	84
LDL/ApoB Ratio	1.15	1.29	1.35

 

C-Reactive Protein - <1 mg/L (Reference range 0-10)

CRP is a measure of systemic inflammation. You’d like to see this number as close to zero as possible, generally speaking, and the reference range extending to 10 is flat-out crazy. In the absence of some other relevant factor like a recent race, I’d really hate to see even a value of 2. Unfortunately, LabCorp doesn’t report values below 1, meaning you never really want to see an actual value on one of these tests. The one time I managed to have this tested at another lab, it was at 0.2.

 

Hemoglobin A1C – 5.1% (Reference range 4.8 - 5.6)

HbA1C is a measure of long-term blood sugar (specifically a measure of how many red blood cells have been glycated by sugar in the blood). Its commonly used to assess or monitor diabetes status. Values for HbA1C exist across a fairly narrow band – 5 is great, 6 is pretty terrible (though plenty of people hit 8, 9, or even higher). Current guidelines consider 5.7 or higher to be “prediabetes” and you really don’t want to see this above the low 5s.

 

Glucose – 95 mg/dL (Reference range 0-99)

This is on the high side for me, as fasting glucose usually bounces around between about 85 and 95. I don’t think a single number is worth all that much when you can just look at A1C and capture a long-term picture, but it’s a normal enough number regardless

 

Insulin – 1.7 uIU/mL (Reference range 2.6-24.9)

Arguably the single most important measurement on here in my view. Insulin is a storage and growth hormone secreted primarily in response to carbohydrate consumption. Chronically elevated levels of insulin are instrumental in metabolic dysfunction and contribute to the insulin resistance that defines diabetes and so much of cardiometabolic disease. The normal reference range of “less that 25” is absolutely off the rails. A person with fasting insulin levels in the 20s is so metabolically sick. Just ridiculous to label it normal in any sense of the word. This is a number you want in the low to mid single digits, with numbers closer to 10 more than sufficient to disrupt optimal metabolic health and function. As mentioned, carbohydrates are the primary driver of insulin levels. I consume very few, and thus have very low fasting insulin.

 

HOMA-IR - 0.4

The Homeostatic Model Assessment of Insulin Resistance is a simple, non-invasive method of estimating an individual’s resistance to insulin using fasting glucose and insulin values. Insulin resistance is a prime driver of heart disease and other chronic diseases, and quite literally is diabetes. HOMA-IR values under 1 are considered optimal, with values north of 2 indicating moderate or greater insulin resistance. A low HOMA-IR and high insulin sensitivity are generally to be expected when consuming a low-carbohydrate diet. I'll add the binge/fast comparison here as well

	April “Binge”	April Fast	June
Glucose	106	66	95
Insulin	11.4	1.3	1.7
HOMA-IR	3.0	0.2	0.4

 

Uric Acid – 3.5 mg/dL (Reference range 3.8-8.4)

Say it with me – “red meat doesn’t cause gout.” This is bit of nonsense that continues to be propagated throughout nutrition and medical circles, but it doesn’t reflect reality. Uric acid is a nitrogen-containing compound that forms from the breakdown of purines, which are indeed found more abundantly in animal products than in plants. But then a healthy person just pees the uric acid out, while a metabolically dysfunctional individual will not. Which is why elevated uric acid levels are tightly linked to insulin levels, obesity, and metabolic syndrome, while mine is out the bottom of LabCorp’s reference range.

 

Vitamin D – 39.1 ng/mL (Reference range 30-100)

This is lower than I’d like. The reference range says above 30 is fine but would realistically like to be double that. I already triggered neuro symptoms trying some vitamin D drops so now the strategy will be a bit more eggs, salmon, and mid-day sun before maybe assessing again.

 

Thyroxine (T4) – 1.2 ng/dL, TSH – 1.14 uIU/mL (Reference range 0.82-1.77, 0.45-4.5) 

My thyroid hormones are perfectly normal.

 

Blood pressure – 110/70, 110/64 mmHg (Reference range <120/80)

These are my two latest doctor’s office BP readings, although I somewhat regularly measure my own BP and find these values to be quite typical. Elevated blood pressure is really just another manifestation of chronic insulin resistance, rather than salt consumption or any other acute dietary factor (I literally drink salt in my water for whatever that’s worth). Its only chronic carb/sugar consumption and elevated insulin that will raise blood pressure, so again optimal measures are unsurprising.

 

Testosterone: Total – 183 ng/dL, Free - 4.4 pg/mL (Reference range 264-916, 8.7-25.1)

And here’s the one that was actually a problem. Normal testosterone for a healthy 30-something should be a few hundred points higher than this. This proved to be a big sign that I wasn’t eating enough, as downregulated hormone production is one obvious consequence of underfueling (this is just one reason that “calories” is a quasi-worthless way to approach weight and metabolism). Unsurprisingly, I was more sluggish than I should have been and slowly losing weight as well. But while my testosterone was quite low, the good news is I’ve since rectified the problem pretty much by just eating more. A month later, my total testosterone was up to 543.

There you have yet...meat and fat aren't killing me yet!

Summer Health Update Pt 1 - I'm Still Not Quite Healthy

 

A couple Saturdays ago I ran 22 miles. It was slow, and easy. But it was 22 miles nonetheless – my longest run since Kona almost four years ago. Two days after that I ran a semi-spontaneous mile at a local track. It was slow, and quite hard. But it was fast enough to suggest some fitness was coming along. In only my 9^th week back running, I had clearly managed at least some degree of improvement.  

Unfortunately, that day I also had woken up feeling less than optimal – just a bit agitated, heart rate was high, slight head and neck pains. The kind of extremely low-grade nervous system dysfunction I had largely avoided the prior couple of months. This got worse for a couple of days, until I finally realized the vitamin D drops I had started taking (more on this in the next post) were causing the problem. The drops were suspended in coconut oil, and even just a drop or two a day turned out to be enough to start triggering my ever-lurking neurological symptoms.

My diet had remained quite strict through the spring and summer, but was more inclusive than it had been at one point. I was consistently consuming reasonable amount of organic fruits – specifically berries and avocados – without issue, to go along with copious meat and occasional fish and egg consumption. This had been working fine, and had resulted in weeks of borderline symptom free training – I was running nearly every day, and hitting upwards of 60 miles per week.

However, even after quitting the vitamin D drops, the diet and my health kind of came apart on me a bit. An all-day road trip saw me cave and drink a cup of coffee, in addition to plantain chips and the consumption of packaged meats that served as my reintroduction to pepper and other seasonings. Lasting for several days after, for the first time since spring, an entire constellation of neurological symptoms returned – limbs tingling and going numb when sitting, brain fog, heart palpitations, increased pain and sensitivity in my neck. Just like that, I was no longer running again.

To be clear, it hasn’t been dietary factors alone triggering or exacerbating symptoms, and my health hadn’t been literally perfect. But it had been quite close, and my mistakes in those couple of weeks both temporarily derailed my progress and made clear that my underlying issues still required some reasonable measure of improvement to return to full health. The poor air quality in the decades old building at which I work seems a bit of a trigger, but has been partially remedied by an air purifier. The smoke from the Canadian wildfires may be as well, and significant emotional and/or cognitive strain still seems to exacerbate any symptoms already present.

But mostly it’s the food, or the plants specifically. So now I retrace my steps yet again, and hope for even further improvement. I’ve just ended a nearly 4 day fast as I type this (the previous 8 day fast in April marked a massive step forward and my return to quasi-normal health and exercise), and intend now to redouble my efforts to avoid dietary mistakes that threaten to disrupt my progress. Beef, salmon, eggs, some organic fruit remain the staples and will stay that way for quite some time, ideally without exception. While there is still a fair bit of progress to be made, I feel generally good about my health, both with respect to the gradual neurological/autoimmune progress and (as I’ll write about next) in a comprehensive metabolic sense.