As of 2017, Lyme disease prevalence is on the rise. And in the summer of 2017, thanks to being bitten by a tick infected with the Lyme bacteria (Borrelia burgdorferi), the disease was prevailing in my bloodstream. And organs. And muscles. And a bunch of other places that you don’t want bacteria hanging out. This article reviews the infectious process, diagnosis, and recovery that I experienced just a few short months ago.
First, here’s a couple not-so-fun facts: According to the Centers for Disease Control, Lyme is the most common vectorborne illness in the United States. In 2016, about 300,000 people were diagnosed with Lyme disease in the US and that number is expected to rise.
If you want to be frightened, watch the rapid progression of the reported Lyme cases move westward from the east coast as you click through the annual maps on the CDC website (https://www.cdc.gov/Lyme/stats/). When I wandered the woods for hours as a child, my parents and I didn’t have to worry about Lyme. We rarely even saw ticks. In the early 2000s, there weren’t many reported cases of Lyme disease in this (western PA and northern WV) region. But by 2015, the same region of the map is heavily covered in cases. I always wanted to be a dot on a CDC map!
My clouded confusion begins
I find ticks on myself every year - after mowing, after weed trimming, after running. I’ve always made it a point to pluck them off ASAP. One must have gone under the radar. If my recollection of the earliest symptoms is accurate, there was initially a period of at least 2-3 weeks in late May to early June where my blood pressure wouldn’t regulate very well, especially if I was feeling the least bit stressed. (Perfect timing for having recently started a business!) This was always worse in the morning. Hopefully few of my patients noticed me awkwardly grabbing the furniture and equipment, but I began to feel a need to cling to nearby objects just in case I would start to crash. My blood pressure would fluctuate noticeably even while simply standing still, which means I was becoming lightheaded several times a day (though I never had true syncope (loss of consciousness)). Being a longtime endurance athlete, my heart rate and blood pressure are low anyhow, so I’m accustomed to occasional positional blood pressure fluctuations. But this seemed more annoying because it was multiple times a day and sometimes took longer to return to baseline. This symptom was sometimes intense but sometimes just a hint. It also had less to do with my hydration level like it normally would after a hotter or harder workout. Overall, it was minor compared to the other symptoms that would follow...
I began to demonstrate significant symptoms of Lyme disease in the middle of June. But, of course, I didn’t know it was Lyme at the time and did not make a connection. That’s because these symptoms, like fatigue, are still not specific to the disease, just consistent with many viral or bacterial infections.
With a new baby around, I was sleeping less. He had a runny nose and recently started daycare so it would be reasonable to expect that I had just picked up an ordinary bug. Plus, I had just come off a harder run training block to prepare for an ultramarathon, so I thought initially that my body was just a tad more susceptible. This is one reason why some athletes will mistake Lyme symptoms for overtraining.
One Sunday evening, I developed a fever. This was accompanied with the worst night sweats I’ve ever experienced. The fever and sweats continued for the next three days, gradually worsening toward evening, which is common to any ongoing infection. The level of fatigue and demotivation was impressive, beyond typical flu levels in intensity and duration. With my 40-mile race looming, my wife gently (forcefully!) nudged me into an ER visit despite gradual daily improvement in the fever because I was also having a new and simultaneous lower abdominal pain (which I eventually realized was a referred pain from my thigh adductor tendons, but that’s another story). No surprise that they told me I had an infection. And elevated creatine kinase levels in my blood tests. Drink lots of water!
I thought I recovered through this initial phase by the following weekend because the fever seemed to have mostly resolved and the night sweats had slacked off. That was the weekend I ran the gorgeous Highlands Sky ultramarathon, albeit at a much slower pace than I would normally because it was obvious I wasn’t at 100% health yet. It seemed strange that I became very sore partway through the run even though I was running easier than I ever normally compete and I had rested much of the week. Then my quadriceps stayed sore at points deeper in the muscles for many more days after running than they typically would. This is unfortunately still very similar to overtraining symptoms.
After resting for a week, as I always do after a long race, I tried to return to my typical training with some easy running. That went well enough and the muscle soreness had resolved. Then I had a bright idea to take back a couple of Strava KOMs/course records on a local trail (because I hadn’t actually raced hard in the ultra) and I expected that it should be safe to push a little effort.
I really was finally feeling good. Good enough to push. I ran the two hill climb intervals very hard that day and took the Strava segment crowns back. Great. Whoopee. No one cares except for the guy who lost the KOM. But it became apparent after that hard effort that my heart rate was not dropping back to typical levels as rapidly as it typically would.
As July began, I noticed my heart rate was still not coming back down to my normal resting levels immediately after running or when waking up in the morning. And I would sometimes feel my heart beating with ridiculous force at rest and while exercising. So I made it a point to avoid pushing the effort, thinking I just wasn’t yet recovered from the combined race, baby stress, business stress, and illness. That was partly correct. Again, I had the same fever and night sweats and fatigue. I stopped running and just started slowly hiking every couple days for only brief periods because I would feel my blood pressure swing wildly with effort.
The heart rate issues would appear to resolve with a day of rest, so I was able to resume running slowly again by the end of the week though it was still abnormally tiring. I’m sure a small part of that was related to our high July heat and humidity, but a 12-minute mile had never felt that hard before.
As each run passed, I caught onto the trend that my normal cardiac function was off drastically enough that my Garmin Fenix 3 repeatedly detected that my “performance condition” was constantly in negative figures. It’s crazy that the watch could detect such a difference with great consistency. This might normally happen for a day or two after a hard effort but not for every run over multiple weeks consecutively.
Another not-so-fun fact: there’s a little something called Lyme pericarditis, which is an inflammation of the pericardial sac that surrounds the heart. And the Lyme bacteria can invade the nerves that supply the heart, leading to issues like atrioventricular block. Suffice it to say, the nerves don’t function normally after that and can contribute to those blood pressure swings.
It was a strange and alarming experience when I realized that I couldn’t quite take a full deep inspiration or achieve full expiration at rest or with exercise. It felt like my stomach was constantly trying to occupy the space where my lungs must normally reside. A “belly breath” wasn’t happening, which stinks because that’s always been a reliable technique to help me relax or to flush out the sensation of going anaerobic while running. I first noticed this inability to breathe into my stomach during the ultramarathon and was glad to be going easier then because I don’t think I could have eaten and absorbed food in a normal manner otherwise.
Neurologic, muscular, and joint happenings
For weeks I had this ongoing sense of muscle tightness along my thoracic spine and it took very little effort to strain my low back one day with yard work. Much like the earlier run soreness, that strain caused a deep, sore muscle pain that lingered for a couple days longer than I would typically experience.
It was also odd that I would feel a little uncoordinated during my runs. Not-so-fun fact #1358: Along with the nerves of the heart, it’s not unusual that the bacteria invade other parts of the peripheral nervous system and can eventually make their way into the central nervous system, neither of which are going to help coordination. You can even lose your vision.
I felt weak. My attempt at returning to basic strength training in mid-July was rewarded with both wrist joints hurting and even more spine region tightness and pain. On other days my ankle joints took turns aching and at another point one of my knees became painful. It was strange that the various joint pains would come only for part of a single day and then quickly decide to move onto some other place to piss off. They were nothing like an acute pain I might traditionally feel for a day or two after overdoing any form of exercise. That makes me wonder if it wasn’t more of an infectious arthritis, which is also common to Lyme disease. Oh cool. What a not-so-fun fact.
By the middle of July sleep was not counteracting the fatigue. I was taking a nap nearly every day and I usually consider naps a giant waste of time. I don’t even nap with the flu.
Okay, I’ll get it checked out
With my wife’s encouragement, I went to an appointment with a general physician who began to do blood work like checking for low testosterone or thyroid dysfunction. Oh yeah, and they thought it would be good to check for a multitude of sexually transmitted diseases though there weren’t any questions asked on that front. Unfortunately, despite asking about the possibility of Lyme disease, no Lyme tests were performed. The physician didn’t feel it necessary because I had no recollection of a tick being attached to me for a lengthy period or having the classic bullseye rash. (So much for making a potential diagnosis based upon the patient’s subjective reports.)
Now that doesn’t mean I didn’t have a tick attach to me at any point recently, because I most certainly do recall having one attached to me at the end of a recent long run. I promptly removed it. I’m a little skeptical of the CDC reported 36-hour time frames necessary to transmit the bacteria from a tick into the host but perhaps I had an immature tick on my scalp and had no idea it was there. Or perhaps the attached tick regurgitated when I went to remove it.
It was around this time that I noticed the back of my head itching and having a rash for over a week, but maybe that was some kind of psychosomatic thing. Who knows. I don’t care because it stopped.
It just keeps getting better
To add to the symptom list, I developed a new problem: anxiety. Like take-your-breath away-because-your-chest-is-being-smashed-and-throat-squished anxiety. This was also worse in the morning. It lasted several days with varying intensities. Super favorite not-so-fun fact: It’s apparently not uncommon for people with Lyme disease to develop anxiety. I resisted the physician’s offer for medication because I’m too much of an arrogant “tough guy” and was hopeful we would be treating the real cause soon.
So while waiting on blood test results I began experimenting with a powerful drug. No, not the illicit kind, nothing prescribed, and not the over the counter kind either. I’m talking about the endogenously manufactured endorphin: adrenaline. You gotta try that stuff. This was really more of an experiment of exercise intensity but what I realized is that running hard into zone 5 could mimic the sensation of chest tightness and labored breathing that I might have in a competition but also what anxiety could produce. So I could actually make a run feel sorta “normal,” even though it clearly wasn’t. And the longer I would sustain a hard interval, the longer I would feel the weird blood pressure swings when the run ended. It did seem to reduce the anxiety intensity afterward though. I’m just smart enough to know I couldn’t and shouldn’t do this to myself during every run but it was an interesting observation. Perhaps one that I wouldn’t recommend if you suspect overtraining or Lyme disease. But it’s science!
My reward for seeking care
The physician calls me to let me know one of the blood tests came back with a positive finding. Apparently they think I have syphilis, because of a positive RPR test. The RPR (rapid plasma reagin) test is a non-specific test that looks for antibodies in the blood. This leads to a cascade of events. First off, now I’m a public health hazard so the medical clinic is required to report me to the Pennsylvania Health Department, without contacting me first, mind you. Kind of annoying. Then a health department nurse calls to counsel me on how avoid transmission of my STD. Fortunately, the nurse had time to chat. She understood, with some encouragement, that there’s a handful of other microscopic creatures, besides syphilis, that cause a positive RPR test, one of which is Lyme bacteria. She contacted the medical clinic and suggested that they test me for Lyme. By the way, I had no other syphilis signs or symptoms and my wife just gave birth to a perfectly healthy child less than three months ago. Congenital syphilis causes a huge number of birth defects and death in newborns. And I guess we’ll ignore our simultaneously healthy four year old because I’ve been playing the field for years now?
Increasingly irritated, I went back to the clinic that day, gave more blood and, wouldn’t you know it, the Lyme tests turned up positive a few days later. The CDC encourages testing for Lyme be done in two tiers. If the first tier tests (EIA or ELISA) are positive then a Western blot test should be confirmatory. The first tier tests could also be positive with syphilis.
Die Borrelia burgdorferi, die!
I spoke with the physician on the phone and (being a smartass) told her I’ve had more ticks on me so far this year than total sexual partners in my lifetime so statistically the Lyme disease wins. She prescribed doxycycline two times per day. As much as I hated to take an antibiotic, within a couple days the chronic fatigue began lifting and I felt noticeably better. Having been ill for so long, it was at this point that I realized how I had really been functioning almost as another person inside the same shell. Weird. Then I grew wings and flew away to Mars.
A few weeks later
I had finished up the antibiotic and fortunately none of the Lyme symptoms returned. For a couple weeks I did still have remnants of burns on my hands and fingers from taking doxycyline. For a person that tries to be outside nearly everyday of their life, increased sensitivity to sun exposure is an unfortunate side effect of this antibiotic. Did you catch that not-so-fun fact? Although, it was usually the sun exposure from mowing my yard during a two to three hour span that would lead to the burns. Is that a good reason to skip mowing? I could go run in the shade of the woods and not have issues.
An additional side effect of the medication was that part of my hands and fingers had a very frequent paresthesia (abnormal sensation). This occurred on both hands at all of the dorsal index and middle finger joints as well as the muscular part between the index finger and thumb. Those areas were extremely sensitive to hot water and were frequently reddened, almost as if I had a chemical burn. All of these side effects appeared around two weeks after starting the antibiotic and gradually worsened.
Soon after I was feeling normal again, I encountered one of the smallest ticks I’ve ever seen. It had attached to my son’s back and I noticed it within an hour of him simply helping his mother in the garden for a few minutes. Even scarier when you know you have Lyme disease and you see your kid being bitten. It’s during this juvenile or nymph stage when ticks start to carry the Lyme bacteria. At about one-third adult size, they are much harder to spot and therefore more capable of infecting us. It’s amazing how quickly a tick can attach, too. In late summer I went for an hour run and by the time I made it back home there was an adult tick already attached to my lower leg.
Here’s a fun fact: Chickens and possums eat ticks. Now I just need an army of chickens and possums to trail run with me.
Lyme disease is a major disruptor of athletic performance and healthy living. It can make you quite miserable and can be mistaken for overtraining and other illnesses. You need to be aware of Lyme’s increasing occurrence and recognize that it may manifest in a number of the body’s structures and cause many different symptoms. It took much perseverance on my part to have the problem appropriately addressed medically. I’m sure the diagnostics have improved, and for that I am thankful because I had a relatively quick diagnosis compared to some people who might go for years feeling awful and ultimately have less chance of proper treatment.
Stay safe out there!
Disclaimer: Several ticks have been harmed since the original writing of this article.
Here’s a nice running-related article on protecting yourself from Lyme disease: http://trailrunnermag.com/training/injuries-and-treatment/dont-get-ticked.html