Lyme Juice: The Bite and the Fight (Part II)

In case you missed it, here’s Part I.

I’ve been pretty healthy all my life.  Sure, I’ve had my fair share of injuries (head, knees, hand, shoulder, ankles, etc.), but I’ve never had any serious illnesses and I’ve never been medicated.  I eat well, I exercise, I get enough sleep, I take care of myself.  So when I was infected with Lyme in July of 2013, its possible that the bacteria took longer to set in to an extent where my body would show obvious signs.  From what I gather through research, the bacteria takes a bit of time to reproduce and spread.  Within a few weeks after the tick bite, I displayed the very common flu-like symptoms that are associated with Lyme disease, but I tested negative for Lyme and rebounded from the illness.  I’m sure I’m not the only one that this has happened to, and I would advise anyone who thinks they have Lyme – but tests negative – to go back to the doctor a few weeks later and get retested.  I didn’t.  Instead, I let the prospect of Lyme drift from my mind, and it caused a ton of grief.

I felt great throughout the fall, despite the fact that I partially tore the patella tendon in my left knee and was between jobs for a few months.  I certainly had a lot to worry about, but not Lyme.  When I was finally back on my feet, I was fortunate to get a job in December teaching high school social studies, and I recall feeling tired in the afternoons when I came home from work.  The “cat naps” started again.  They were intermittent, and seemingly harmless.  I’m not even sure I can attribute the naps to Lyme-related fatigue.  It had been a while since I was on my feet all day.  The winter was setting in.  Colder weather, less daylight, lethargy tends to come hand-in-hand with such conditions.  I’d feel tired after work, so I’d lie down for 30 minutes or so with my eyes closed.  I’d take it easy the rest of the night, choosing to relax instead of doing school work.  Overall, pretty harmless, and I’d say I still felt pretty good.

In the spring, my activity level ratcheted up.  I was working 60 hours a week between teaching, coaching, and tutoring.  I regularly exercised in the gym and played flag football on the weekends.  I was active in my social life.  Coming out of the winter, I shed between 10 and 15 pounds.  I was in arguably the best shape of my life.  Clothes that I used to wear in high school started fitting again.  I felt incredible.  The Harriman experience, the deer ticks, the summer flu, it was all out of my mind.  Lyme disease was an afterthought at this point.  My life was full speed ahead, all systems go.

Graph of common Lyme symptoms. By the time I was diagnosed, I displayed 3 of the 4: fever, arthritis, & nerve damage.

At some point in April, I started to experience a little pain and swelling in my right knee.  I thought I had a minor injury, which made sense because I was weightlifting, playing basketball, and playing football.  I decided to rest for a few weeks and the knee issue subsided.  Whatever mysterious “injury” I had was again out of my mind.  In fact, I was 9 months into my Lyme infection, and starting to develop arthritis in my knees.  I had no clue.  I even took time out of my busy schedule in May to teach my students about Lyme disease, as May is Lyme Disease Awareness Month.  I felt it important to devote half of a class to  discussing deer ticks, how Lyme is transmitted, common symptoms and treatment, and how to prevent Lyme disease through proper tick removal.  The kids were surprisingly interested.  Lyme, after all, is a very real and serious threat in Pennsylvania.  They know friends and family who have had Lyme disease.  They asked questions, I answered.  I felt like the omnipotent authority on all things Lyme, which was stupid in hindsight, because I had been infected myself for almost a whole year, and didn’t even know it.  Life can be cruel and ironic sometimes.

Spring changed to summer.  School ended and my plate emptied.  I finally had time to relax, and I still felt great.  I was still going to the gym regularly, playing basketball, and had started up with slow-pitch softball.  Then the signs started cropping up.  At some point in mid-June, I started to experience a little bit of discomfort in my heels and in my knees.   I was still ignorant of the infection.  I attributed the discomfort to the fact that I was running 2-4 miles per week on the treadmill, and my shoes were old.  New ones would fix the problem.  Still, I had the wherewithal to stop running and take it easy to let my joints recover, which, for a 26 year old, aren’t in great condition to begin with thanks to years of abuse from year-round athletics.  With rest, the knee pain subsided.  My body was trying to tell me something was wrong, and I kept downplaying the pain.  I’d eventually get the message, but not yet.

On July 11th, I took my S.O. to the Finger Lakes Wine Festival in New York (RED FLAG! New York has not been good to me) to sweep her romantically off her feet.  We camped at Watkins Glen and had an amazing time.  I was on top of the world.  Life couldn’t get any better.  Then, something odd happened.  I woke up with some discomfort in my right knee on the morning of Sunday, July 13th.  Ironically, this was exactly one year to the day after I sauntered into the Harriman wilderness and had the good fortune to be bit by a deer tick.

Then, it happened.  On July 14th, a week after my 26th birthday, my right knee exploded.  It came out of nowhere.  I woke up to intense pain and massive swelling.  I could barely walk.  When I did, my knee would give out from underneath me.  I couldn’t bend it.  I couldn’t flex the muscles in my right quad.  Something was wrong, but I had no idea what to make of the situation.  In one of the all time boneheaded decisions about my health,  I decided the pain and swelling was from some mysterious injury I must have suffered due to overexertion in the gym.  I paid no mind that knee pain is a symptom of late-stage Lyme disease.  I didn’t have Lyme disease.  I hadn’t seen a tick on my body in over a year, and even then, I was symptom-free for 11 months.  No bullseye, no Bell’s Palsy, no fatigue.  Lyme didn’t even enter my mind as a possibility.   As an oft-injured athlete, I’m well versed with the principles of RICE, and I decided the best solution would be a little R and R, so I stayed off my feet for a few days, took anti-inflammatories, iced the knee, and used an ace bandage to compress the joint and reduce the swelling.  None of it really worked, but I figured my persistence would pay off.

Swelling in the right knee – tell tale arthritic symptoms of late-stage Lyme infection.

Ever reluctant to seek medical attention, I stubbornly persisted in the RICE strategy for a couple weeks, but the situation only got worse.  My knee stayed swollen.  The muscles in my leg started to atrophy, turning to jelly from lack of use.  I limped and hobbled around during the day, and hurt during the night.  I finally decided to get an opinion, and a visit to the physical therapist confirmed that I was showing signs of arthritis (her exact diagnosis was that I had “bad wheels”).  But she didn’t suggest that Lyme disease was the cause, and I didn’t consider it.  Given my track record of joint problems, I suspected that I might simply be developing osteoarthritis at a young age (in hindsight, this was probably the least likely scenario).

The period from late July to early September is one I’m not particularly proud of.  I was 26 and arthritic.  I accepted that this was the way things were, and I’d just have to live with it.  I was an idiot.  I was stubborn and stupid, prepared to just deal with the pain rather than seek help to make things better.  I was afraid that any doctor I went to see would tell me to rest, might put my knee in a brace to let it heal, or, worst case scenario, I had some type of serious injury and needed surgery.  I couldn’t afford to stay off my feet.  Not in the peak of the summertime.

From the CDC, my symptoms, perfectly depicted. What an idiot I was.

Despite dealing with persistent knee swelling and pain, I had several “once-in-a-lifetime” style backpacking trips that I refused to cancel.  At the end of July, I backpacked 22 miles in the White Mountains, ascending seven of the Presidential peaks including Mt. Washington.  In the beginning of August, I backpacked 15 miles in Tennessee, including climbing to the top of Mt. LeConte, one of the tallest peaks in the Appalachian range.  This was really dumb, but I wasn’t willing to bail on these trips.  I couldn’t.  At some point, wanderlust combined with the promise of an amazing experience drowned out any fears or concerns I had about how painful the trip would be, if I was even able to do it.  I was determined to complete the trips by sheer will, and, despite my stupidity, one of the proudest accomplishments in my life will always be the fact that I was able to climb Mt. Washington and Mt. LeConte with a debilitating disease that I got from backpacking.  Even though I still didn’t know I had Lyme disease, bailing on those trips as a result of it would’ve meant that the New York ticks won.  I couldn’t let them drive me out of the woods and keep me from doing what I love, even though I’d pay for it later.

No tick was going to stop me from taking in the beauty of Mt. Washington.

After the rigors of backpacking, I felt it only necessary to reward myself with a relaxing trip in Ocean City, Maryland towards the end of August.  Even though it hadn’t previously worked, and I probably only made the situation worse, I figured that rest and time would help my knee get better.  Much to my own horror, the beach trip actually made things worse, as the swelling in my right knee intensified and spread throughout my lower leg.  I also started to develop numbness and tingling in the bottom of my right foot and my heel.  My leg, from hip to heel, was in terrible shape.  I was disabled and disfigured.  The pain was as intense as ever, and made the whole beach trip pretty miserable.  Ailing, confused, and frustrated I finally broke down and decided to see a proper doctor when I got home.

You’d be fair to think that I’m an idiot.  You’d be fair to think that I deserved the pain and agony I got for stubbornly refusing to go to the doctor.  You’d be fair to think that I had learned my lesson by this point, and you’d be fair to think that this is the part of the story where I tell you I found out that I had Lyme disease.  But that’s not the case.  I didn’t go to the doctor when I got home, because something as strange as the sudden onset of knee pain happened to me when I got home.  My leg got better.  Almost completely recovered.  The swelling in my knee and lower leg dissipated.  I could flex the muscles in my leg again.  I could walk without pain.  Granted, I still couldn’t feel anything in my right heel, but I felt as good as I had in over a month, and things were looking up.  My stubborn mind assumed that I must be getting better since I felt better.  I had no idea what the hell was happening to me, I had no way to account for the strange onset and dissipation of bizarre, seemingly unprompted knee pain, but it was gone now, and I was ready to get back to life before Borrelia burgdorferi delivered the final gut punch.

The dissipation of my symptoms lasted for only a day or two of pain and swelling free bliss.  Then, out of nowhere, I developed the exact same symptoms in my previously unaffected left knee.  Intense pain and swelling, inability to use the muscles in my quad (and subsequent atrophy), limited range of motion.  By this point, I had been dealing with some form of knee pain related to arthritis for 8 weeks, and it was time to see the doctor.  Everything was on the table.  Rheumatoid.  Osteoarthritis.  Gout.  And, for the first time in over a year, the prospect of Lyme disease resurfaced in my mind.  I started to feel like the moron I was for not recognizing it sooner, for not going back to get my second blood test shortly after the first.  The second blood test finally came on September 9th and I and was diagnosed with Lyme disease on September 12th, one day shy of the 14 month milestone of my bite.

In Part III, I’ll speak briefly to the antibiotic treatment period, and where things are at now.  It’s been a long and bumpy road, but there is (hopefully) some light at the end of the tunnel.  Feel free to leave any comments about how much of an idiot I am, and, as always, thanks for reading.

Lyme Juice: The Bite and the Fight (Part I)

Unless you live in the Northeast or the Midwest, Lyme Disease probably isn’t a much of a concern (not that there aren’t other little pests to worry about).  There’s a “Lyme Belt” that includes Eastern PA, New Jersey, Southeastern NY, CT, and MA that constitutes the epicenter of the large majority of Lyme cases in the United States, and you don’t even have to be in the woods to get it; my father contracted Lyme disease in our backyard.  For him, the flu-like symptoms were just a summer fever, and the red flags didn’t pop up until weeks later when he was blindsided by paralysis in half of his face (Bell’s Palsy).  Even before I watched him battle his infection, I had always known about Lyme Disease, and felt confident in my ability to prevent and/or recognize it, but Borrelia burgdorferi is a tricky beast that still found a way to catch me by surprise.

The Northeast – Ground Zero for Lyme

The state of New York has not been kind to me.  In 2008, I contracted the flu and tonsillitis after standing outside in subfreezing temperatures (17 degrees) for ten hours in a fenced in area of Times Square to watch a stupid crystal ball drop a couple dozen feet, thus denoting the commencement of a new year.  I haven’t spoken to New York City since.  This past summer, I baked in the heat for 9 hours standing along the rail at Belmont Park in Long Island to watch California Chrome finish outside of the money in the Belmont Stakes and choke away the Triple Crown.  And, in 2013, I came away from an overnight backpacking trip in New York with Lyme Disease.

A week after my 25th birthday, my brother and I took an overnight trip in Harriman State Park on the 13th and 14th of July to break in some new hammocks that we bought.  After climbing the summit of Tom Jones Mountain (What’s new pussycat?), we hiked a few miles into the backcountry and found a nice spot to pitch our hammocks.  In retrospect, the campsite was poorly selected.  It was in a grove full of tall grass, and we didn’t realize that bug nets are a necessity for hammock camping in the summer.  It was tough to get comfortable and fall asleep as I was being eaten alive by mosquitos, and I awoke with a healthy amount of bites – around thirty or so.  The following morning, we spent around an hour in the tall grass eating breakfast, drinking coffee, and packing up camp.  Right before we left I took my shirt off to swap out with a clean one, and I found three deer ticks on me almost immediately.  Fortunately, none of them were engorged and none of them had dug into me, so I removed them all, lathered myself in a heavy deet bath, and put on my other shirt.  I’ve read that it usually takes 24 to 36 hours for the disease to be transmitted.  I thought I was okay.  I must have missed one.

Deer ticks are tiny and easy to miss

They say the tell-tale sign of Lyme infection is a “bullseye” rash that forms around the area of the bite.  Happens around a week or so after the infection.  Happens in 70-80% of infections.  I kept an open eye, almost expecting it, but it never happened.  To be honest, in the first few weeks after the trip, I felt fantastic.  No signs, no symptoms.  The closest thing to a symptom (in retrospect) were the “cat naps” I developed a habit of taking in the afternoons when I was on vacation in Ocean City, NJ, a few weeks later, but they didn’t seem abnormal at the time.  I was on vacation, a day at the beach usually takes a lot out of me, and I was only lying down with my eyes closed for a half hour or so.  Nothing close to the type of exhaustion or fatigue that could be associated with an illness.  To be fair, I’m not sure that this “cat napping” could be considered a lyme related symptom, but it may have been an indication that I was starting to fight off a robust and resilient bacterial infection.

I did not have the tell-tale bullseye…

Around the beginning of August (3 weeks after the bite), the flu symptoms hit.  High fever (101-102), chills from head to toe, sweating (I woke up two or three times and my bed sheets were drenched), impressively painful body aches in my neck, shoulders, and back to the point that it was painful even when I was lying in bed or sitting down, and fatigue.  I felt weak.  I felt ill.  More ill than I’ve ever felt before.  My symptoms lasted around a week and a half.  Knowing that I had been exposed to at least a few deer ticks up in New York a few weeks earlier, I called the doctor, who ran blood tests for Lyme that came back negative.  A few days later, I started to feel better, and put Lyme out of my mind.  I had meant to go back and get tested again in a few weeks as a precaution, but never did.  Life got in the way.  I forgot all about the deer ticks of Harriman State Park.  I forgot that there was a strong possibility that I was infected.  Through the fall, winter, and spring months, Borrelia burgdorferi was the last thing on my blissfully ignorant mind.  But I was the only thing on Borrelia burgdorferi’s mind, as the bacteria was quietly and unassumingly setting up shop, preparing itself up to wreak havoc on my body.

Borrelia burgdorferi, the Lyme bacteria

In Part 2, the Lyme Disease rears its ugly head, I know what it feels like to be an old man, and my body becomes a microscopic battleground.  Feel free to leave any comments about your own experiences with Lyme, and, as always, thanks for reading.