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.
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.
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.
