Akemi's Anime World

What Happened to Marc Report

A lengthy blow-by-blow of the perfect storm of illness and bad luck that nearly killed me.

Not many are likely to be interested, but for those friends and readers who are wondering what the heck happened to me (Marc/Makosuke) past "I was very sick," here's the short and long of it.

It wasn't until 2010 that I had enough perspective to really say anything meaningful about the whole experience, and I didn't get a real, firm diagnosis and understanding of what all had happened until 2011, four years after the ordeal started.

Now, as of 2013, I'm not what you'd call in great health, but life is close enough to normal that I have some perspective on what turned out to be a two-year-long near-death experience brought about by a perfect storm of bad luck, an incredibly rare disorder, freakishly rare physiology, and misdiagnoses. I keep being tempted to use the phrase post-mortem, but given the context it seems... inauspicious, so I'll stick to "summary."

Relatively Short Version

Imagine having a mild case of stomach flu, really bad laryngitis, morning sickness, and a very large pill stuck in your throat. All at once. For a year. I really wish I were exaggerating, but that was my life between late 2005 and spring of 2007. It took 21 doctors, 10 therapists, a university hospital, two trips to a fancy clinic, and several dozen scans, probes, samples, and tests to more or less figure out. Even then, it wasn't until 2011 when I saw another university hospital specialist--the world expert on the specific sort of disorder--and had another round of tests so specialized they didn't exist when it all started that I got an actual, concrete diagnosis. I am not exaggerating.

I also can't write an email about any of this in detail, because it would read like a laundry list of drug and weight-loss spam terms.

The root cause doesn't currently have a proper name (that's how rare and little-understood it is), but is basically an extreme case of nerve hypersensitivity involving pretty much my entire digestive tract, throat included. Related to this is a mild form of a relatively rare problem that causes the muscles in my throat to cramp up if anything provokes them and a predisposition to stomach problems.

For whatever reason, all of these decided to get much worse, all at the same time, and during the process of attempting to diagnose and treat this condition without knowing what it actually was, everything was made even worse by stress.

But the kicker is that I have very, very bad reactions to acid reducers, which are the stock treatment for throat and stomach discomfort: They cause a near-permanent migraine without any head pain (basically a lot like morning sickness), but only after a delay long enough that it's easy to not realize that they are part of the problem. By the time I figured it out, the side effects were stuck "on."

Put all these together, and I could barely eat anything, couldn't speak, felt wretched, and gagged on my own throat every time I got out of bed.

In the end it took five months to partially diagnose and a total of nearly six years, two trips to the Mayo Clinic, and Stanford Medical Center to get a real, concrete diagnosis. I was essentially bedridden for over four months, partially mute for well over a year, appetite-free for six months, at least somewhat nauseous for the large majority of two years, about 40 pounds (18kg) leaner trying very hard not to starve (108 pounds for a 5'10" male is disturbingly skinny), too weak to walk more than a block, and uncomfortable during nearly every waking moment between December 2005 and late 2007.

But, to quote the Plague Guy in Monty Python's Quest for the Holy Grail: "I'm not dead yet! I'm getting better! I feel happy!"

The good news is that after finally figuring out more or less what's wrong there were some partially effective treatments that at least kept me from starving and out of bed and moving about. Recovery has ben a slow process, but I regained the ability to speak toward the end of 2007 (thank God for a good speech therapist), as well as maintain a lean but healthy weight without tubes, and in 2008 I got back to work full time. A more accurate diagnosis and experimental drugs got me into a much more comfortable and halfway-normal condition in 2011. I still eat barely half of what someone my size should even on a good day, and my throat and stomach bother me from time to time, but I'm alive and actually living.

Colorful Analogy

By way of analogy, picture having an invisible monkey, let's call him Gokuudo, on your back. Gokuudo is a mean monkey, and he's got his hands around your throat, squeezing gently, 24 hours a day, seven days a week, for months on end. After a while, he decides that if you do anything but lie quietly in bed he's going to squeeze harder and harder until you can't even swallow. He also really hates acid reducers, so when you try to take any of them, he starts kicking you in the stomach after a few days, and then proceeds to jam his grubby monkey hand in your mouth and gag you every time you try to eat. Also, when you try to talk, he jams his hand down your throat, grabs your tongue, and starts gagging you for a couple of days. Just in case you weren't already miserable enough, Gokuudo also makes sure that you feel absolutely stuffed after eating one small slice of bread, and his stink makes you feel sort of queasy all the time.

Gory Detail If You Really Care

For whatever reason, what has been an occasional annoyance turned into a crippling choking sensation that pretty much everything but laying in bed in a specific position (sitting, walking, talking, laying on my back, etc) made unbearable. As a result, I spent pretty much all but a few minutes a day between January and April 2006 laying in bed not doing much but staring at the wall. Yet again, I am not exaggerating.

I didn't realize this until way later, but it turns out I can feel my epiglottis (little flap halfway down your throat) touching the other side of my throat and my uvula (the dangly thing at the back of your mouth) touching my tongue. This is bad--it feels like you're choking and/or gagging on something, said something being your throat itself. I do so wish I'd looked up "lump in throat" more carefully when it first started, though, and I might have run across something on hypersensitivity or spasm instead of assuming it was some kind of a tumor (or, later, acid-induced irritation).

Being a rare disorder, it took months, a heap of tests, and a trip to a UCSF specialist to diagnose, and there is unfortunately no cure per se--just relaxation therapy and hoping it'll improve on its own.

As if that weren't bad enough by itself there's the whole business with my being in the 0.01% of people who have bizarre reactions to some medications. In my case, all those fancy prescription acid reducers they advertise like crazy cause me to feel very, very sick after a few days, and it takes quite some time to wear off. Even more fun, good ol' over-the-counter Zantac seems to really hate me--for months I thought I was fine with it, until I realized that it was completely destroying my appetite, not lingering effects from the fancier prescription stuff.

By the time I figured that out, however, whatever brain chemistry it was messing with was so screwed up that it got sort of stuck. Toss in a predisposition to stomach problems that flared up along the line from the stress or a now-gone bug or whatever else, and this kicked off a lengthy period of "permanent migraine without headache" (yes, it can apparently happen) that is something like morning sickness (except not limited to mornings): constant nausea and just about any smell makes it worse (fresh-baked bread, coffee, body odor, garlic, french fries, asphalt, you name it). Further, the nerve hypersensitivity that was screwing up my throat wasn't limited to the throat, so the slightest bit of stomach irritation resulted in pain very much like an ulcer (for which the standard treatment is... acid reducers!).

End result: Alternately nauseous, in moderate pain, appetite-less to the point of being unable to eat, or all of the above starting a couple days before Halloween 2005.

To prevent starvation during the worst of it (second half of 2006) I got the majority of my nutrition through a tube embedded in my arm called a PICC line--it's used to pump a nice nutrient soup called TPN into a central artery every night while you sleep. Having an installed port with direct access to your heart feels very cyberpunk, but the injected junk slowly kills your liver and I much prefer the more traditional route of food intake.

Thankfully, after getting so fed up with my insurance company and local doctors I risked most of my life savings on two trips to the Mayo Clinic for testing and something resembling a proper diagnosis. They hit on a drug to treat the then-permanent migraine-like state, which let me eat enough to survive, and since Western medicine admitted its inability to do anything about the hypersensitivity, a complementary combination of herbs, physical therapy, and homeopathic remedies helped relieve most of the discomfort and get me back on my feet and feeling comparatively comfortable.

I regained the ability to eat enough to survive in early 2007, clawed my way back to enough energy and weight to function at work full-time around mid-2007, got the damned tube out of my arm, and regained the ability to talk for more than an hour a day without being completely miserable in October of 2007 thanks to a very helpful speech therapist. At that point I could pass for normal so long as you weren't around me during meals (in which case I didn't eat much at a sitting).

Adding insult to injury, the low liquid intake resulted in exactly what I was afraid of in late 2008: A kidney stone, which my family is prone to. On the plus side, they're very easy to diagnose, and not at all fatal. On the down side, spending a substantial portion of a month or so in twitching pain (and burning through all my sick and vacation leave in the process) sucks. Also, 2mm my ass. That thing was 4mm by 6mm by the time it worked its way out.

Then I finally had a stroke of good luck when my acupuncturist recommended a gastroenterologist at Stanford Medical Center (which is not all that far from where I live) who just happened to specialize in exactly the sort of disorder I have. I eventually got in to see her in 2011, and after another round of tests--some of which were only developed in the past couple years--she finally gave me a conclusive, specific diagnosis. With the caveat that it was so rare and poorly-understood that there isn't currently an official name for what's wrong with me. She did, however, have some experimental drugs for me to try out, which have helped considerably.

My throat is still rather sensitive, I can't sing or yell anymore, I can only eat half of what a normal person can even on a good day, if I pay any attention to it I can still feel everything in my throat, and my stomach feels funky periodically for no reason. But all these things are livable--being able to talk, laugh, walk around, and work on a regular basis is a wonderful thing, so I'm not complaining.

The Numbers

I've been keeping count: So far I have tried 18 different prescription drugs, 3 prescription-strength versions of over-the-counter drugs, 10 over-the-counter drugs, 14 herbal/homeopathic remedies, and I was also prescribed or given samples of 8 prescription drugs I didn't end up taking. Of the 31 drugs I tried, about nine did me any good at all, only four without significant side effects (two of which I didn't try until the "real" diagnosis years later). More than that have actively made the situation much worse.

I've fared considerably better on supplements and herbs; about 6 of the 15 have helped at least some, and only a couple had significant negative side effects.

By way of Western medicine I've seen 23 doctors total, 6 of whom were world-class: 14 specialists (four ENTs, two speech therapists, an endocrinologist, a neurologist, a headache specialist, four gastroenterologists, and a swallowing specialist), 2 general practitioners (not counting ER visits), 3 internists, 3 psychologists, and 1 psychiatrist. If you include ER and phone consultations, add 5 more.

Test-wise, I've enjoyed 12 high-tech scans, 9 probes into every orifice in my body, a dozen or so tests on tissue samples, and more blood tests than I can count. The detailed breakdown: four CT scans, two MRIs, three upper GI endoscopies, one colonoscopy, two radioactive stomach emptying studies, a couple of EKGs, one EEG, four X-rays, a lung function test, an ultrasound exam, a gastric gas sampling study, a small-bowel manometry study, a video stroboscopic throat exam and a half dozen more routine fiber optic/mirror based ones, a throat manometry study, an electronic esophageal pH monitor, many biopsies, blood tests for everything from Valley Fever to cancer (that one cost as much as a used car), and tests on pretty much every bodily output but sweat (yes, even burps and tears).

My therapy count thus far includes: Acupuncture, shiatsu, chiropracty, long-wavelength infrared therapy, short-wavelength infrared LED therapy, deep relaxation therapy, hypnotherapy, counseling, psychotherapy, elevator music that's somehow supposed to help with morning sickness, more hypnotherapy, massage therapy, myofascial release, physical therapy, non-force chiropracty, craniosacral therapy, and some ridiculous voodoo called tapping. Most helped at least a little.

Eventually, after finally getting a partial diagnosis, getting off of every medication I could, and a few games of Russian Roulette with chemicals that mess with your brain, I finally hit on a combination of things that kept me more than just barely alive: praying, acupuncture, Amitriptyline, glutamine, and DGL licorice. After getting a real diagnosis, I added in gabapentin, then topiramate and buspar, which increased the bar from scraping by to reasonable comfort.

Interesting Observations

Thanks to a nurse botching a routine procedure, I got to experience an air embolism firsthand. You know in the movies when they show the bad guy injecting air into an IV to kill somebody in the hospital? That actually wouldn't work--it (fortunately) takes way more than one syringe full of air to kill a human. That said, however much ended up in my bloodstream was enough to make it feel like I had inhaled liquid fire. I do not recommend it. Hurt almost as much as a kidney stone.

Speaking of kidney stones, I've learned that, if you're in enough pain, you really do talk... with... lots... of... ellipses, just like in the comics. Also, if you ever get a kidney stone, hot bathtub. Helps almost as much as the prescription-strength painkillers. Quoth I, when I ran out of sick leave: "My vacation was spent on a cruise on the USS Warm Bathtub, with stops at pain, agony, and spasmodic suffering."

Worst-tasting medicine in the world: Japanese traditional herbal tea called "senburi." That translates as "thousand-bitter," because "if you boil it a thousand times, it'll still be bitter." They weren't kidding--hard to imagine how bitter that stuff is. On the other hand, man does that stuff work--searing stomach pain to comfortable in fifteen seconds flat. Unhealthy to use for too long, they say, but I'd like to see the person who would drink any more of that stuff than absolutely necessary for survival.

Nerve disorders (and atypical migraines) are unfortunate things, because there's no scan or test for either. Figures I'd have both. And while I understand that sometimes it is in your head, sometimes it most definitely isn't. The psychologists I saw were remarkably understanding about this, perhaps because they know how to tell the difference. They're also nice and helpful people. My limited experience with psychiatrists, however, not so good: "Take these pills and call me in two weeks if you need the dose adjusted." When those pills, as confirmed later by expert diagnosis of the actual problem, couldn't have done me the least bit of good. Not saying that those pills aren't the answer for some problems--they are--but only when the "doctor" takes enough time to actually determine that. "When the only tool you have is a hammer" I guess.

Acupuncture is the real deal. It does not work on everything, but when you've got a practitioner who knows what the limitations are and how to work alongside Western medicine to deal with the things drugs and surgery can't, it's impressive. It doesn't matter if they don't understand, in a scientific sense, why it does what it does--the fact of the matter is someone can stick a needle in your leg and you feel hungry immediately. Weird, but impressive. Also, it does hurt, but not all that much. Totally worth it.

I got the chance to try a number of heavily-abused drugs, and I have to say: Your life must really suck to want to use those things recreationally. The side-effects (which are why people abuse them) were annoying at best, miserable at worst, and I couldn't get off that stuff fast enough.

It's funny to be prescribed, by doctors, almost the exact opposite of what is normally healthy: I've been told to exercise less (burns too many calories), eat as much high-calorie food as possible, eat more salt (best treatment for low blood pressure), and take a wide variety of drugs that spam-readers consider recreational.

When you get a few tablespoons of something injected directly into a central artery, you can smell it (from the inside) a few seconds later. Which is really weird. TPN (injected nutrient soup--looks a little like milk, and has roughly the same fat/carbohydrate/protein mix), it turns out, "smells" a little like some kind of artificial vanilla. The chemical they put in saline solution to preserve it "smells" faintly like lemon. I could also tell the difference between different brands of saline solution.

When you've been in sensory depravation for half a year, including no odors and no solid food (or much liquid food, for that matter), when you do finally get better, things are... enhanced. I believe that first slice of home-baked bread was the most delicious thing I have ever eaten.

Closing Thoughts

While you might fear going to the doctor and being told "You have [disease/disorder]," it's almost certainly an improvement over going weekly for months and being repeatedly told "I have no idea." while you slowly waste away. I now have even less sympathy for morose goths and emo kids--if you feel physically ok, can walk, talk, and eat a sandwich at will, you really have very little to complain about. Everything else is just icing on the cake. Pray you never have to learn the hard way just how wonderful all the simple stuff is.