The Long Journey
I've written a lot about my health over the past few years, and my efforts to try and do something about it. Each little clue gave me new hope, into which I threw my full energy. I took every inch and reveled in it, moving as far as I could before inevitably declining once again (increased effort met with increased resistance). These were genuine steps forward though, rather than false starts: I lost weight, gained focus, and started sleeping better, so each time I was really complaining from a new place.
The biggest gains came from discovering sleep apnea, candidiasis, and suspicions of mitochondrial myopathy. None of these are naturally indicative of McArdle's Disease (the eventual diagnosis) though, nor are they typically concomitant. They didn't fall into their place in the puzzle until the picture was already becoming clear, when it all suddenly came together.
I should start by explaining a little about the condition. Glucose is the primary source of energy for nearly everything in the human body, the whole process referred to as "glycolysis." Most cells, especially muscle cells, have an internal reserve of it in a compact polymer-like form called glycogen. When demand for energy increases, molecules are trimmed off the end of the chain and made available to the mitochondria to do their business of converting it into active energy (adenosine triphosphate, for those taking notes).
This store of energy is pretty high - enough for 12-20 hours worth of activity before needing to be replenished. That replenishment happens on a regular, ongoing basis, to keep stores topped off whenever spare glucose is available, and any surplus is either excreted or converted into starches and stashed elsewhere. Normally this is enough to keep the body readily burning glucose between meals without running low - an exception would be fasting (more than a day), starvation, or extremely high demand: marathon runners, for example, can completely deplete glycogen stores after about 20 miles of continuous running, a phenomenon they refer to as "hitting the wall." At that point continued activity requires use of the stored fats as an alternative fuel, and risks damage to those tissues unable to do so.
McArdle's refers to a defect in or absence of myophosphorylase, which is a fancy name for "the enzyme that breaks glucose off the glycogen chain." This deficiency means that the primary source of stored energy is either completely off limits or so impaired as to be unable to meet the body's demand. This results in dramatic exercise intolerance, and in some cases cramping or seizing of muscle fibers (which require energy both to contract and relax) in a disparate and uncoordinated state so severe that they can actually rupture (rhabdomyolysis - this will be on the test), spilling their proteins into the blood and straining renal functions. Alternatively, the secondary fuel source based on fatty acids can be engaged (lipolysis).
An interesting side note here is that this is the primary intent of low-carb diets: by lowering the intake of glucose (and things easily synthesized into it by the metabolism), glycogen stores are exhausted and the body has no choice but to turn to lipids in order to remain functional. It's a hack, but a potentially effective one - your mileage may vary though, and not every system can handle the kind of stress this creates.
To point, too heavy a reliance on lipolysis floods the body with its waste products and increases the acidity of the blood (ketoacidosis). Healthy folks don't normally get to this point - diabetics can be affected in pretty nasty ways though. Those with McArdle's suffer a similar fate since the reliance on it is more absolute, and constant: this happens on regular diets without regard for carbohydrate intake. I had hit on a form of metabolic acidosis in my investigation earlier but had come to it from the wrong side, thinking that it was an inhibition of the mitochondria in making use of available oxygen, when in fact the mitochondria work wonderfully and are simply making-do with limited materials on hand. The effect is the same though: fatigue, memory disruption, stupor, and eventual unconsciousness.
Now Leaving Week II
I've been trying something new for nearly two weeks now, specific to the management of my long-term cellular metabolic disorder. 2 weeks ago yesterday I was on the phone with my old buddy Dan in Washington, updating him on recent events and findings (Dan is doing well by the way, having given his notice at Clipper so he can apprentice full time under Rod Chappel). Some of the particular secondary symptoms sounded familiar to him, so he took a look through a homeopathic reference he had on hand and came up with: candida (apparently pronounced similar to "Canada").
In homeopathic circles, this normally helpful strain of yeast (present in the healthy colon, and responsible for keeping incoming pathogens at bay) is commonly blamed for a whole host of primarily gastrointestinal symptoms. On the web (scoured via Google, as always) it's fingered by nut jobs for just about everything the human body can suffer, usually accompanied by rants against "the establishment" and even calling for a boycott on the immunization of children. There is, however, some valid medical information to be found amidst the stream, referenced here from our good friend Wikipeda:
"Colonization of the gastrointestinal tract by C. albicans may result from taking antiacids[sic] or antihyperacidity drugs. This colonization may interfere with absorption of Coenzyme Q10.[3]"
That last bit really caught my eye. From having read up on the various causes and manifestations of sub-sets of mitochondrial myopathies I recognized the enzyme as one (out of five) critical for the aerobic respiration facilitated by mitochondria, the deficiency of which can cause the onset of the malady. The gastrointestinal upset associated also coincided well with the acid reflux (and other conditions) I've experienced and thought to be ancillary. Taken as evidence together with the indicators for the mitochondrial issue, I thought this just might be a smoking gun worthy of further investigation and started looking up treatment options.
Most of the ones published and referenced sufficiently to appear well in rankings are associated with said whackos, advocating intensive homeopathy and massive lifestyle changes for the sake of "personal balance." Now, I'm used to alernative medicines - I grew up near Seattle and there are quite a lot of them in the local culture (and the culture which gravitates there wanting to appear local). As a practitioner of martial arts I am aware of the flow of ki (or chi, depending on the country of origin for your discipline) and have been participant in and witness to events and activities which I have not been able to rationally attribute to anything else. However, I fall well short of believing that these things can be used to master the universe around oneself in dominant fashion - in fact, it is only through the utmost stillness and focus of mind and body that an awareness of the subtleties of flowing energy can be detected. Extrapolating from that into its potential influences on the physical world, there just isn't enough force to make a truly tangible or impactful difference. Thermodynamics and Newtonian laws simply tend to outweigh the whims of thought.
This calls for the introduction of an additional agent in order to affect change. Most candida specific treatments have glowing, amazing, miraculous testimonials attached to them, right before you reach the, "and now you can feel the same way with this astounding (and large, complex) regimen of supplements starting at only $64.99 a month!" The dominant products come from Japan, where the condition has been recognized and studied in greater detail and with more scientific acceptance, supposedly. I may be willing to give things a try, but I wasn't expecting to have to shell out for slick packaging around something which sounded suspiciously like snake oil; they sounded nice and official, explained well the effects they were addressing, but not from a position of pathology (didn't say how the symptoms and causes were connected), nor did they disclose the mechanisms by which they purportedly acted to adjust conditions: only that they restored a natural balance of intestinal flora. What really turned me off was the add-ons marketed along with it - chemistry which supposedly increased the ability of cells to take in oxygen. I know from experience that my own blood-oxygen saturation doesn't fall below 96%, and if that's not high enough to penetrate the membranes of the tissues which rely on oxygen for so much of their natural function, then no little pill was going to be able to make a difference (there is a condition under which the membranes become too thick, related to scleroderma, inhibiting the transport of oxygen across the barrier - and this wouldn't help that either).
In order to make a real difference, I prefer to appeal to empirically repeatable practices with as much well-founded theory behind them as possible. Boiled down to the very basic essence of the thing and then building up step-by-step thereafter until implementing the whole - or as much of that whole is truly required for the end result. I needed a small starting point and measurements of change over time.
As it turns out, candida albicans has a natural control agent already present in the body: lactobacillus acidophilus. If something disturbs the acidophilus (why candida is referred to in short by its genus, and acidophilus by its species, is beyond me) the candida is able to grow unchecked and will start in on its ambitious disruption. It so happens that 14 years ago I picked up a nasty intestinal parasite (probably amoebic) from some well water at my uncle's ranch in Colorado. The experience was not one I'd like to repeat or wish on most anyone, and I'll save you the specifics of why. This infestation, though resolved, likely was the catalyst that led to the destruction of the acidophilus and thus the "cat's away" scenario.
Bringing us now to the experiment: for the last 2 weeks I have been taking acidophilus supplements in a concentration of 4bn organisms (2 tablets with breakfast and dinner, less than $6 for 100 tablets) starting with my evening meal on Monday, January 29th. The next day, contrary to my expectations, I felt different: my peripheral tissues felt warmer, and less pained. I didn't know there was such a concentration of casual pain, but its absence suddenly shed light on the situation. Since then the affect has increased, and I've had enough presence of mind in the evenings to make real progress on my book (recently passing the 10,000 word mark - slow but steady progress, and seeing as how I still have the day job and the young kids, an impressive amount of work despite its seemingly languid pace). Everyone in the family has had the stomach flu except me, not in itself extraordinary as I'm typically resistant to these kinds of bugs, but remarkable in the amount of sleep disruption it's caused. I've been up to my elbows in buckets and bed clothes and had to spend multiple nights without the CPAP, and though tired and a little distracted the following days was able to function and have still been absent that nonspecific malaise from before. I get fatigued, but under different conditions and feeling far removed from the prior dragging near-paralysis that was for so long my constant companion.
I get hungry before I feel hypoglycemic, have been able to fast for the first time in probably a year, and no longer crave sugars (candida is also an anaerobic organism, so it was robbing the GI tract and blood of the glucose that was also my only sustenance). My next step is the introduction of coenzyme Q10 tablets to replace the depleted reserves (theorizing that the glucose is now reaching my cells, but that the aerobic processes is still inhibited), and after a week on that to begin phasing in mild exercise. The changes already have been profound.
For some reason I'm not resentful that after more than a decade of decline, such a simple remedy was available. I'm not saying that I'm done, or that this is a truly permanent magic bullet - but the improvement has been unprecedented by everything else thus far. I'll enjoy it while it lasts for what it is.