The Tick on the Boy...and the Boy in the Tent...

The other day my ten-year-old son dutifully downed his last dose of doxycycline.  (How’s that for alliteration?)  He’d taken it twice daily for 28 days and he was glad to be done with it.  This is not to say that he didn’t tolerate it well.  Sure, it caused a few stomachaches, and some of those hit at incredibly inopportune times (I found him doubled over on the bench during one of his soccer matches).  But those were relatively infrequent.  On the other hand, it turned his face scarlet red.  We had been told that it might cause photosensitivity and, true to the warning on the label, it made him burn to a crisp on even the most overcast of days.  I slathered him with sunscreen and made him wear a baseball cap, but it was no use.  He looked like a ripe tomato, but he was a happy tomato nonetheless.  Fortunately, the berry-flavored formula I got for him (doxy is not recommended for children under 8 so it took some work to find a pharmacy with the liquid formulation in stock) was pleasantly palatable and he enjoyed measuring it out by himself almost as much as he enjoyed the spotlight he commanded as we watched him do this little ritual each day.  Apparently, his friends got a kick out of watching him, too, as a mom who hosted him on a sleepover would recount to me afterwards.

So why was this April a month of stomachaches and sunburns?  Well, it seems that a nasty little deer tick latched on to my son on one of our family outings last fall and transmitted the bacteria that causes Lyme disease to him in the process.  He took the whole thing in stride, and our pediatrician’s amazing bedside manner helped immensely in this regard.  However, the diagnosis threw me for a loop, especially when the doc said that the bacteria had had a few months to gain a foothold in my child’s body.  I was less astonished than I would have been a few years ago, before my cancer diagnosis.  However, I was more astonished than any mother with a young child who likes to go camping ought to be.  I had grown up in New England, for cryin’ out loud.  But I had never heard of anyone contracting Lyme disease until I went off to college and even then that was someone who lived on Martha’s Vineyard.  I was separated from those nasty ticks by a great big body of water!  On the plus side, this meant that I had avoided most of the sensationalist literature on Lyme (of which there is a LOT) until after getting the scoop from our pedi.  At that point I was able to take the more far-out stuff with a pinch (more like a shaker) of salt.  “Dr. Matt” declared the treatment straightforward and the prognosis excellent and we heaved a sigh of relief.  Medical research would appear to back him up and I can only assume that we will never have to revisit this in the future.[i] 

That, however, is not what most people think when they hear the word Lyme.  Sadly, there is a lot of hype and mania surrounding this condition.  This is not to make light of the very real symptoms that people with chronic Lyme disease experience, but to point out that many people who have never been diagnosed with Lyme in their lives attribute all sorts of maladies to it in the absence of any evidence whatsoever.  Dr. Matt told us about a young patient of his who has never tested positive for Lyme, but whose mother brings him to Vermont each summer for expensive “magnet therapy” because she is convinced that his fatigue is due to undetected Lyme.  People with non-specific symptoms are understandably eager for an explanation for their suffering.  In Lyme, some find an answer that makes sense to them.  Unfortunately, the tendency to attribute all sorts of problems to Lyme renders it larger than life.  There is yet another reason for the gap between public perception and scientific research.  Namely, misdiagnosis used to be more common in the past than it is today and the failure to detect Lyme early on made it that much harder to treat.  Simply put, people hear Lyme and they conjure up “the bad old days” when it was often left unchecked to roam around the body.  The key to effective treatment is early detection. 

By now most people are aware that they should wear long pants, use bug spray, and do full body checks after spending time in or near the woods.  They might not always follow these precautions, but at least they know that they should.  Some parents I know have found ticks on themselves and/or on their kids.  In our case, we never saw the tick in question.  Ticks can hide out in hard-to-see places and the nymphs are especially hard to detect since they are about the size of a poppy seed.  Even if you find a tick, you really need to know how long it has been there.  Research shows that a tick must be attached for about 36-48 hours in order to transmit Lyme.  Blood tests are inadequate in the early stages because the body takes 2-3 weeks to make IgM antibodies to the invading spirochete (called Borrelia burgdorferi) and 4 weeks or more to make IgG antibodies.  For this reason some doctors err on the side of treating all patients who have had ticks feasting on them for more than 48 hours as if they were infected.  A short course of doxycycline (or another antibiotic) can nip early infections in the bud.  Other doctors will not begin treatment unless they know for sure that the tick in question was carrying Lyme.  Some labs will test ticks for Lyme, although it’s not clear how reliable most of those lab tests are. 

Some people will develop symptoms that tip them off to a recent Lyme infection even if they overlook the tick.  These symptoms include a bulls-eye rash, chills, fever, and aches that occur within days to weeks of having been bitten.  My son never had any symptoms of any sort, though.  In fact, if it hadn’t been for his older brother, we might not have detected the Lyme as soon as we did.  In March his brother had belly pain, which led to an office visit, which led to an ultrasound and an emergency appendectomy, the very next day.  (I shudder to think of what might have happened if I had packed him off to school that Monday).  If a bellyache could morph into a life-threatening emergency that suddenly, then who was I to shrug at a lousy swollen knee?

Yes, this all started with a swollen knee.  About a month ago my son declared, on the playground, that his knee hurt.  Now, he’s an active kid who plays basketball and soccer, so I assumed that he had just twisted his knee or banged it up somehow.  That weekend he limped around on the basketball court and the soccer field, but I told myself he was on the mend.  By Monday his knee had become so swollen and painful that he couldn’t walk.  The affected knee (can no longer remember which it was!) was now twice as large as the other so I gave him ibuprofen and iced it throughout the day while he vegged out on Terraria and Clash Royale.  Things did not, however, get any better.  When he was unable to walk again on Tuesday, I decided it was time to fork over fifty (our co-pay just went up to this ridiculous sum) for some answers.  In the past it might have taken a bit more to get me to spring for the co-pay, but the appendicitis episode had taught me that you can’t put a price tag on peace of mind.  Our pediatrician looked at my son’s knee, felt it, and declared matter-of-factly: “Ninety percent of the time this turns out to be Lyme.”  He ordered us to start doxycycline that night and ordering two-tier blood testing that would later come back “strongly reactive” to Lyme.  More and more, it would appear that doctors in Lyme-ridden areas like New England know their stuff.  Our pedi even recounted how he had helped doctors in Italy diagnose a teenage patient of his, who had been studying abroad and whose symptoms had doctors there completely stymied.  If you are reading this, and you are anxious about Lyme, you should find this very reassuring. 

So that is how we ended up with the doxycycline that would allow us to stamp out Lyme before it could do any more damage to my son’s body.  Monoarthritis (arthritis on one side of the body) of a large joint like a knee or an elbow is a classic symptom of early disseminated Lyme, and the most common symptom in children.  Left unchecked, Lyme can cause recurrent arthritis and can penetrate deep into the nervous system, causing facial palsy (found in 5% of kids with Lyme) and meningitis (found in 2% of kids with Lyme).  It can even affect the heart, though this seems to be more common in adults and children over age 10.  Doctors wonder to what degree so-called “chronic Lyme” is due to treatment error (incorrect dosing or failure to take the entire dose), re-infection (more common than once thought), lingering infection (in a small number of cases), or an ongoing inflammatory response triggered by the initial occurrence.  One thing they do know is that there has been an uptick in Lyme in recent years.[ii]  As Lyme becomes more common, and makes inroads into new areas of the United States,[iii] doctors in those places will hopefully learn how to detect it as rapidly as doctors in our neck of the woods do.

The other day my son went on a short hike in a wooded area of town with his cub scout pack.  While his den leader would no doubt have discussed ticks at the meeting anyway, this time my son got to bask in the spotlight once more.  Only by then he was a bit more ambivalent about the association.  Sadly, the experience has taught us that we will have to be more vigilant whenever we venture into the great outdoors.  We will use bug spray more liberally from now on.  We will look behind our knees and under our arms and behind our ears.  We will inspect freckles to make sure they are not moving (!).  We will not, however, freak out.  We will simply do our best while recognizing that we live in a world in which boys who go camping are not inclined to do body checks, or wear long pants, or take showers, or even brush their teeth or change their clothing, during the course of a weekend camping trip. 

Most importantly, we will forevermore sing that Irish folksong, The Rattlin’ Bog,” with words that better reflect our local ecosystem:

….THE TICK ON THE BOY
AND THE BOY IN THE TENT
AND THE TENT IN THE WOODS…
AND THE WOODS DOWN IN THE FOREST-O…

Okay, so technically the woods are not in the forest, but it works… Oh, and we never sing the version that devolves into the “blood in the tick.”  Far too gross. 

Also, rest assured that there are many versions of the song and most versions stop with the tick (or a “bug" or a “flea”) and do not (thankfully) delve into the whole cosmos within the tick.

[i] Gerber MA1, Zemel LS, Shapiro ED.  1998.  Lyme Arthritis in Children: Clinical Epidemiology and Long-Term Outcomes.  Pediatrics.  102(4 Pt 1):905-8.

[ii] Jacqueline Howard. Tick- and Mosquito-Borne Diseases More than Triple, Since 2004, in the US.  https://www.cnn.com/2018/05/01/health/ticks-mosquito-borne-diseases-cdc-study/index.html.  Updated May 2, 2018.  Accessed May 25, 2018.

[iii] Asher, Claire.  Lyme disease–carrying ticks are now in half of all U.S. counties.

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