Twelve weeks ago I was making my foray into the world of rock climbing, finally making it to the intermediate campus board (1/2 inch?) in only my fifth week of bouldering. Oftentimes, I was working out twice a day, doing a mix of bouldering, acrobatic core workouts, sprints, and powerlifting, throwing around three, four or five hundred plus pounds on all the big structural lifts, with a lifting competition set for December 1st. A typical day would include all of that, 5-10 hours of appointments, time with my wife and son and lots of other activities. Fast forward to this afternoon, and I am crippled, barely able to turn over in bed, wincing all the while, and sleep has become more of a laborious chore involving narcotics and overdosed muscle relaxers just to ensure I get more than 20 minutes of shut-eye in the middle of the night. Seven weeks ago my goals included becoming a superhuman in multiple domains of athleticism, achievement and cognition. Today it's a struggle to get dressed, especially reaching my feet for socks and shoes, praying that I can just make it to the next day, and hoping that I don't move too fast, yawn or cough because any one sends me into a debilitating cascade of muscle spasming which can be best described as feeling like you're being beaten within an inch of your life by a thousand ISIS terrorists wielding 2x4s.
I don't have an injury. I didn't overtrain. I have no risk factors. I'm far far above average in health. I'm not a drug user. I am monogamous. I don't drink. So, "what happened?!", you're probably asking. The answer: I went for a walk.
I didn't go for a walk in the bad part of town wearing an offensive t-shirt. I didn't hike through a guerrilla-controlled tropical jungle with poison dart frogs. I just took a leisurely stroll through a trail in the Midwest... seven times this summer. Each time (but one) I wore some sort of repellant, was largely covered, never climbing through tall grass, the deep woods or even low brush. And each time I scanned over my body and my wife combed painstakingly through my hair to ensure I didn't have a tick.
If you've never had Lyme, or if you caught it in the first ten days, you haven't got a clue. Progressed Lyme destroys the body. The hallmark of this little treat is that it burrows as deeply as it can into your tissues, leaving a desolate wasteland of ruin in its wake. As such, there's a crescendo of system breakdown which resembles the symptoms of some three-hundred other diseases, including multiple sclerosis, a variety of dementias and HIV. Add to that we have no test for the presence of the borrelia bacterium which causes Lyme, only shoddy extremely unreliable antibody tests. Add to that, there are numerous nasty co-infections from tick bites, and every person will react differently to every individual tick, so there is no obvious and clear pathology. Fun. Oh yeah, and it does kill its host in a number of cases.
Now the bad news: this darling gem of an infection is taking over the world. It's present in all of North America, Europe and Asia; and reports are starting to come in everywhere else. The tick population is exploding. Good times. Forest fires don't kill them. Tough winters don't kill them. Pesticides don't appreciably reduce their populations. They are in your yard, your trees, your leaves. They aren't off in the woods anymore. There is no avoiding them. Chances are, you or someone you know is going to suffer from Lyme disease within your lifetime. Awesome. In fact, if you've inexplicably fallen under some disease that Lyme mimics (which is most of them), you may want to pull a few tests for tick-borne illnesses just to be safe, although most people don't test positive until they're cured. Added bonus.
Any good news? Antibiotics do the trick... sometimes. The sooner you catch it, the better. But, as I'm finding out, even a few weeks later might spell a not-so-enchanting ending to the story. Most likely, I was infected September 2nd. My discovery of the erythema migrans (the Lyme disease rash) was September 18th. Antibiotics started the next day, at least 17 days after infection. A subsequent erythema migrans showed up elsewhere, which is rare, and could be indicative of a second bite. Both began to vanish after almost a week of antibiotics.
Given that this lively experience began with off-the-chart nerve pain shooting down my arm, then recurrent 103+ degree temperatures and paralyzing headaches (presumably from brain swelling), I figured I was getting better after almost ten days of antibiotics. After all, the arm no longer felt like it was constantly jammed against a rusty bone saw without anesthesia. I was no longer seeing temps above 100. I could actually step into a lit room or listen to someone's voice without my skull feeling like it was about to bust a leak from the pressure.
However, describing how I felt as of October 13th, the body aches, uncontrolled deep muscle spasming and gritty jolts of spine and joint pain were worse. A LOT WORSE. And I was medicated with the only treatment there is: caustic antibiotics, narcotics, high dose ibuprofen and muscle relaxers (which I've had to overdose in order to function).
Yeah, yeah, I'm aware of the hippy alternative stuff too. That's part of my normal regimen: some activity (mainly playing with my son) - I can't handle intense exercise yet; turmeric/curcumin; green tea; probiotics; no sugar; high dose vitamin C, D and magnesium. I haven't yet tried acupuncture. I'm going out on a limb adding Cat's Claw and even contemplating Grapefruit seed extract.
All of the above I wrote by the third week of October.
Today is November 10th.
Since writing the above, I've seen an infectious disease specialist, retested for Lyme, tested positive on preliminary findings AND Western Blot confirmation, had an MRI, met with a neurologist, learned I have an extremely rare spinal abnormality (whose irritation was amplified by the systemic inflammation from infection), found my kidneys were taking a beating from the ibuprofen, switched to tramadol, added lidocaine patches and TENS unit therapy, and finally begun to resume moderate/intense physical activity.
When you've suffered an affliction that grinds life to a halt for more than a few days, you begin viewing the general medical and scientific communities with a greater degree of skepticism or even contempt; and the kooks end up sounding a lot more measured in their opinions. Particularly, as I've found with Lyme, conventional authorities don't know anything useful, not even the rough outline of the hopelessly abridged Wikipedia entry. Those who do know a lot are impossible to find. A growing movement has created the moniker LLMD, Lyme-literate Medical Doctor; but various neurologists and infectious disease specialists run from this title because of the scorn it draws from traditionalists within their own peer groupings. The few doctors who've assumed the title risk their license and insurance company litigation. Some patients who've struggled with Lyme for years make the best resources, as their websites are encyclopedic, but unfortunately inclined toward the "crackpot" end of the spectrum.
The most frustrating aspect of the disease is that there are endless armchair academics who are ready to dismiss anyone who claims they're afflicted with Lyme. These people have not struggled with the disease themselves. They are running no experiments to further understand the disease. But comfortably, from their armchairs, they are able to gather a host of medical literature to make their case that persistent borrelia infection (aka - chronic Lyme disease) is quackery. Now, never mind that we know beyond a shadow of a doubt that Lyme does persist:
In mice after antibiotics:
In humans after antibiotics:
In mice following antibiotic treatment:
Borrelia persists in cystic and atypical forms in response to hostile environments:
Borrelia converts to spheroplast in spinal fluid:
Borrelia spirochetes convert to cystic form within 1 minute in uninhabitable environment:
Borrelia persists in macaques after antibiotic treatment:
Biofilm formation of borrelia is understood:
Antibiotics ineffective at eliminating round body and biofilm formations of borrelia:
Even the CDC has had to create the term PTLDS in response to the growing body of research showing that borrelia persists:
These are accepted peer-reviewed studies from deep within the ranks of the medical and scientific communities. Yet self-styled skeptics carefully ignore the findings.
Thanks to the naysayers, the greatest challenge with Lyme is the psychological battle. You don't ever really know you have it. You don't really ever know if you're cured. Recovery is a very long road, if one has it at all; and all the while you know there are smart people (possibly including your own trusted doctors) who dismiss Lyme altogether. It's a powerful formula for self-doubt, testing the limits of your patience and your emotional fortitude. Luckily, I retested AND my retests were positive, so that I could finally have some closure, knowing in hindsight that I had had it. Unfortunately, only time can tell if I am actually healed. Because of the nature of the test, and the way our immune system works, I will test positive for Lyme forever more, whether I have it or not. For some people, they might never test positive. And there is a school of thought, bolstered by classic microscopy, that no one ever actually rids the body of borrelia infection; people merely keep it at bay.
There are a lot of articles about personality changes in people with Lyme: depression, apathy, floating, memory loss, alteration of morality, etc. It's true. Prior to infection, my purpose was living an awesome life and helping others to realize an awesome life as well. After infection, for nearly two months, the biggest meaning in my life was watching the clock tick the minutes away until my next dose of drugs. Each new day brought with it increasingly intense pain and a renewed sense that this affliction shows no consistent sign of getting better. It certainly gave me an appreciation for some of the challenges other people continue to face, not just within the world of Lyme disease, but any chronic challenge.
This is life. Motivation is difficult, especially when progress is nonexistent or obscenely sluggish. Difficulties come; and at best you feel like you're treading water. But in the same way, as you plod along, difficulties go. Superhumanity isn't measured by a physical feat. It is measured by the mental wherewithal to climb out of a pit of despair, wherein you find no good reason to think things will get better... and you decide to make things better. The biggest setback in your life will not be the circumstance you find yourself in, even if it's unimaginably dire. The biggest setback will be your perception of that circumstance. Just remember that you control that perception, No Matter What.
11/21/2014 11:30:49 pm
I suffer from the same thing. My symptoms are pretty much under control but now and then the fatigue hits. Hopefully there will be cure sometime soon. Godspeed to healing.
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