The Light at the End of the Tunnel Isn't Moving Any Closer

Medical Retirement 

For more than a year, I’ve been trying to apply for medical disability through the federal government. If you’re new here, I used to be an air traffic controller in the Washington DC area, until a neuroautoimmune reaction to the Pfizer covid vaccine crippled me with devastating neurological symptoms and widespread brain dysfunction. These impairments often left me unable to hold conversions or safely traverse the stairs, let alone sequence airplanes. For a couple years after, I tried to make it work in an office job, working with new hire training, airline routing, and facility safety issues. That was, unfortunately, not much better.  

As the adverse test results stacked up and the debilitating symptoms persisted, I eventually felt it was time to pursue a medical disability retirement. It was quite the process, to put it lightly. Beginning in November of 2024, I gathered clinical notes, physician testimony, supervisor statements, and more to make the case that working with my condition was impairing both my health and my ability to satisfactorily perform my job. It took until March to finally submit a final application – thanks in part to glacial paper passing in the FAA, and in part due to the difficulty in obtaining concrete physician support. 

To be entirely honest, the quasi-interlude to follow is only partially to illustrate that difficulty, and partially because I’m bitter and angry. The ways in which I was mistreated by a number of physicians remains staggering to me. I already touched on the neurology practice that was the first to voice support for my application, but reneged when my IQ testing showed “only” single digit percentile performances in acute cognitive skills. And special thanks to the neurologist who told me my test results were meaningless because they were “only consistent with serious conditions like Alzheimer’s and Parkinson’s.” Two other doctors accused me, directly and to my face, of faking everything - not only my severe symptoms and pronounced cognitive decline, but apparently also the PET scan demonstrating widespread brain dysfunction and the range of adverse autoimmune symptoms suggestive of neuropsychiatric lupus. It was an uphill battle, even with simple things like scheduling and paperwork, to eventually get multiple medical professionals on board. 

In any event...the application finally submitted in March was initially denied in July - failure to demonstrate that my health was sufficiently impacting my job performance, they said. What had been a ray of hope was, all of a sudden, a massive shot in the gut. I actually feel like I handled this stretch of disappointment fairly well, but was obviously dejected about the prospect of continuing to hurt myself at work every day when it could have already been over. I fell back into my usual routine of suffering and survival (and taking as much time away from work as I could) pretty easily, stacking a week or two of good health and good running before falling apart for days or weeks after. Repeat, ad nauseum.  

The application was resubmitted a few week later and this time, finally, was approved at the beginning of November (in the middle of a government shutdown, no less!). This was, obviously, a moment of great relief and joy. I had viewed this retirement as a clear light at the end of the tunnel, the moment that would change my life for the better. I had locked in so hard for so long, just trying to make it to the other side, and this was the moment that was going to mark a real change. Unfortunately, I still had to make it through quite a bit more work, the reopening of the government, and the HR logistics necessary to finally get me out the door. Ultimately, November 19th was the last day in the office, but I was still missing entire days of work sick in bed as late as the 17th. The excitement and optimism had worn a bit by then, but maybe now things could finally be alright.  

Retirement Hasn't Meant Relief

Well...Here we are, three weeks since my last day of work, and I’m in a pretty bad place. The last couple weeks of the government shutdown were extremely brutal (ironically, I was hoping I’d have less work without a government...), leaving me broken and sick despite only managing to work about half of my hours during that time. Since then I’ve recovered a bit, but haven't actually been able to turn a corner. I’m....OK.  

But what OK means is that trying to clean the basement destroyed my neck, leaving my neck and head numb and “asleep” for days. It means I haven’t had legitimate feeling in my hands or feet for over a week. It means every morning is a crapshoot as to whether my legs will actually move properly or if I’ll need to hold myself up against the wall in order to get to the bathroom. It means I struggle massively with processing information and making decisions, or really even understanding how to make a decision. It means I’ve tried and failed to run several times, simply because I can’t force my legs to move properly or control where they land, while my heart rates tickles threshold levels at 11 minute pace (to be clear, I’ve run a number of times as well with less issue).  

I’m writing this on a Thursday, having been unable to complete my run yesterday and unable to attempt it today. I couldn’t get through the dog walk this morning, actually. Yesterday afternoon I did maybe an hour of work around the house (ok, 20 minutes of work spread across an hour), babying myself through laundry and dishes. But I could only do a couple minutes at a time, because my spinal cord couldn’t handle looking down. A couple minutes left my spine shooting with pain, my arms and legs fully numb, my brain dizzy and nauseated. Rest for a few minutes on the ground, then repeat.  

I would have been better today had I not done that but the real problem isn’t folding laundry, it’s the inability to provide any meaningful continuous energy to my nervous system. That’s by far the greatest fundamental problem, that my brain and nervous system can’t produce or utilize energy through traditional means. I make constant efforts to mitigate those effects through deliberate ketosis, but that’s been made extremely difficult lately.  

What I’ve found again and again (to be clear, this checks out fairly obviously physiologically as well) is that any great stress response tends to inhibit ketosis. Your body responds to stress by prompting your liver to create glucose, raising blood sugar and inhibiting ketone production. Part of why I’m in my current mess is because I had a cold that had exactly this effect, but the persistent issue is how massively difficult it is to actually recover. When I’m reasonably healthy, a high-fat/zero-carb diet will commonly lead to stable blood sugar in the 70-80s and blood ketones of 2.0 or higher (those values are “below average” and “quite high” respectfully). But when I’m in a bad place and can’t get out from behind it, the same diet will instead produce fasting blood sugars of 100-110 and ketones barely above zero. When this happens, I’m providing extremely limited energy to my nervous system for days at a time. In both cases, the situation is prone to self-propagation. Long-term elevated ketones prevent many or most symptoms and issues, maintaining a fairly healthy state. But low ketones and limited energy availability means things as simple as reading emails or sitting on the wrong chair can exacerbate ongoing issues, further driving the downward spiral.  

Moving Forward

You might read that and wonder how I’m even writing this today, given I just told you how bad today was. If you’re wondering, my blood levels a couple hours after waking were glucose of 102 mg/dl and ketones of 0.3mmol/L. Those are not good numbers, and suggestive of a continuing long-term trap of poor energy availability and debilitating symptoms. So what am I doing? I’m cheating, in a sense. Taking drastic measures, more accurately. I wrote once before about the varying alternative manners by which you can provide energy to the nervous system, and how ketones are by far the healthiest and most stable long-term option. But as just described, its massively difficult to pull out of a spiral and raise ketones high enough without somehow first providing some sort of reprieve.  

So I’m currently or soon to be utilizing every other method I outlined in that previous post. I’ve had many, many carbohydrates (fruit) today. Enough to raise blood sugar high enough and long enough to at least partially overcome my nervous system’s relative inability to properly use carbs for energy. I’ve had some alcohol. Not enough for true intoxication, but enough to provide another stream of energy over the course of a few hours. And I’ve had and will have supplemental ketones as well. This is not healthy, or a good long-term solution, but between the overconsumption of carbs, the alcohol, and the exogenous ketones, I have massive energy availability for at least the time being. Which right now means I can write. I can put together thoughts and sentences in a way I wouldn’t have been able to recently, and can do so without cratering my health. But its a temporary reprieve, that I need to take advantage of while I’m able.  

The result of these efforts should be that my nervous system will recover all day today, and that tomorrow morning I’ll have a relatively easier time getting out the door for a run. Which is the last, best alternative option for energy delivery. Exercise is really the only way to acutely increase glucose metabolism in the brain and nervous system (without binging sugar) and thus has been a reliable tool in my battle for health. But much like the ketone spiral, I can’t take advantage of that pathway when I’m too unwell to get out the door (the days I can't get out the door never get logged, but my Strava is still littered with quasi-failures like these).

Tomorrow I’ll wake up with zero ketones, but should feel far less numb, less dizzy, in better control of my limbs. The trick then will be transitioning from today’s short-term energy availability back to something more lasting. But the transition to ketosis is, generally, when I’m at my worst and most susceptible.  

As an aside – the “transition” to ketosis is where I existed for most of the first year I was dealing with this. In the long-term, that just means sensible but non-zero carbohydrate consumption that results in stable, healthy blood sugar that is too low for my nervous system to utilize but too high to allow ketone production. The same state occurs transiently in the days after high carbohydrate consumption while waiting for meaningful ketone production to return. I don’t typically spend much time in that state anymore, because I can manage it in the way I’ll describe in short order.  

But I have, unfortunately, still been there from time to time. I’ve been flirting with that place a fair bit lately. And that place, those circumstances, are when it’s made clear to me that things aren’t actually getting better. Quite honestly I think they’re getting a little worse. It is glaringly obvious that even without great cognitive stress, normal human function is difficult if not impossible to achieve - the constant numbness, dizziness, stabbing pain, impaired motor control, and so on and so on, the squeezing blackout feeling compressing my spine and brain, all of that – it feels more and more difficult to actually escape.  

And has been made clear on multiple occasions, the addition of cognitive strain – the actual acute stressor placed on an unfueled brain – sends things to a place that simply doesn’t feel survivable. I am, at this “baseline” - the existence that a healthy person would take for granted – too sick to hold my life together. I scored in the single digit percentiles in acute intellectual skills when I was healthy. When I’m not I can’t even hold a conversation, in either direction. I am, in what really is just a “normal” human state, still too sick to fully understand the things people say to me, and too sick to remember words or piece together sentences when trying to go the other way. I am, still, too sick to get up and down the stairs without using all fours for balance, without stopping to take a break.  

What the hell was I talking about? I think my rambling got off track a bit. I know my underlying health hasn’t improved and I suspect if anything it’s a little worse, but I can avoid those catastrophic situations for the most part these days (even if I’m bedridden nonetheless).  

And the way I do it is how I’m going to do it tomorrow. Through constant utilization of some kind of energy source. I’ve utilized several today, in order to write this and in order to get myself out of bed tomorrow morning. More ketone supplements (on which I’ve spent some $800 this year...) will help make sure tomorrow’s run gets started. And then, I’ll run... and run some more. Hopefully all day, more or less.  

Two things should hopefully happen tomorrow – the run itself, for what I hope will be 5, 6, 7+ hours, will provide another fantastic source of energy/brain metabolism to help get through tomorrow. And I swear to you, that if I’m actually well enough to run for 6 hours, my legs will hurt less after than they did after the six-miler I couldn’t complete the other day. Even the generic neuromuscular pain is worse than anything I’ve ever been able to inflict running or racing. I’ll also fuel that run entirely with ketones and fat. Despite eating a lot of carbs today, I hope to reach meaningful levels of ketosis in 24 hours by virtue of simply moving all day, depleting all stored glycogen, and driving insulin down around zero.  

And then we’ll see what happens. If I get the run started, tomorrow will probably be ok. I’ll run for hours and, if that's true, will feel reasonably ok for the next day regardless of what I eat just on the strength of the run alone. But hopefully in concert with high-fat/zero carb fueling and diet, I’ll be back to a meaningful level of ketosis by the following morning. Or at least meaningful enough, while feeling healthy enough, that the next day’s run is enough to finally see big ketone numbers again. 

I’m still waiting to be healthy for the first time since my retirement, and hope this “Hail Mary” of sorts is enough to ultimately get there (Update: Only kinda. I made it just a couple hours into that run, and it took a couple more days to finally start getting over the hump). I remain optimistic, for lack of a choice as much as anything else, that I can reach a long-term stable, healthy state in which I’m able to exercise daily and avoid the kinds of crushing circumstances that used to plague me at work.  

But I also feel like it needs to happen soon. I know these massive binge/alcohol/supplement/long run episodes are not a healthy long-term solution and not something I should be trying to repeat if I can avoid it. Combine that with the sobering research into dementia and other neurodegenerative diseases, the ways in which the inflammatory cascades, neurotransmitter disruptions, and so forth result directly from acute energy deficits while simultaneously causing further long-term damage, and it becomes obviously apparent how important a stable energy source really is.  

I don’t think I will ever be healthy enough to live like a “normal” person and also walk and talk at the same time. The expectation is that I will be significantly impaired for the rest of my life and will need to fight it, forever. So here’s hoping that if I actually posted this on the internet, that it means I finally broke out of miserable couple of months and reestablished a stable, healthy situation again. The hope then would be to string together several weeks or even months of consistent running, but that’s a lesser concern right now. Running has been extremely difficult lately. It is right now nothing more than a tool, a means to an end.  Its the manner by which I’m trying to force myself back to health, which is why I promise a random 30+ mile run isn’t as crazy as it might seem. Its the manner by which I’m trying to move closer to the light at the end of the tunnel. Hopefully I can find out what happens when I get there.  

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 2, and need something more like 3+ 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