Ticks & Lyme Disease at home and on the trail…

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2012 Master’s Project by Victoria Shelus

When a fellow 2013 thru-hiker was hospitalized with severe Lyme meningitis (inflammation of the membranes surrounding the brain) earlier this month, I decided to do some research and try to help raise awareness about Lyme.

“How many of my friends have had Lyme disease?” I wondered… I assumed that most of my friends with Lyme experience were hikers since I’d estimated that almost 30% of the northbound 2013 thru-hikers I met in New England had had it,  but I wasn’t really sure… so I turned to my Facebook friends looking for answers…

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What I discovered came as a surprise! 5% of my friends (22 of the people that viewed the post, n=440) have had confirmed cases of Lyme! And most of them, (68%, n=15) weren’t hikers at all! They’d gotten Lyme in their yards or in nearby parks… The youngest had been bitten before she even turned a year old! I guess with 5,665 reported cases of Lyme in Massachusetts in 2013 (a 12% increase from 2012) I shouldn’t have been surprised… but I definitely was! (Also, check out this link: How did 2014-2015s harsh winter effect tick populations?)

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RI Tick encounter risk: Red=high, blue= low (Link Risk of tick encounters in Rhode Island by year)

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RI Tick encounter risk: Red=high, blue=low.

Where were my non-hiker friends getting Lyme? Lyme disease is named after a town in Connecticut and is endemic in New England so I wasn’t surprised that 93% (14/15) of my non-hiking friends with Lyme live in New England… but they weren’t getting it from backpacking trips to the wildnerness; they were getting it from ticks lurking in their yards and suburban parks. Since there are more white-footed mice and deer (the two biggest vectors for ticks and Lyme disease in New England) in the suburban areas of Massachusetts, New Hampshire, Connecticut, and Rhode Island than in the wild areas it makes sense that those are the places where people are getting infected with Lyme… Clearly I need to start eying the tall grass, brush, and leaf litter in suburban parks and backyards with much more suspicion…

QDMA data from 2001-2006

It seemed strange, however, that  0% (0/7) of my hiking friends with Lyme were from New England… Another surprise was that 100% of my hiker friends that got Lyme got it during their during their thru-hikes (revision: 1 was on a 500 mile section-hike)! Maybe it’s partly because thru-hikers from other parts of the country don’t have the same level of tick awareness that people in the Northeast have? I remember being absolutely horrified the first time I saw someone drop their pack and lie down in the middle of a field of tall grass while I was hiking through North Carolina… Why? Ticks!!!! I had the same trouble on the PCT, even though people assured me that the PCT doesn’t have the same issues with Lyme… It was just engrained behavior for me…

A white-tailed dear I saw while hiking through Pennsylvania on the AT

A white-tailed dear I saw while hiking through Pennsylvania on the AT

Though a part of me loved the bucolic moments when deer wandered towards me on the trail… a bigger part of me was hungry and wished that I was going to be having have a nice venison steak for dinner instead of a boring dehydrated meal (Note: the CDC has this assurance, “You will not get Lyme disease from eating venison or squirrel meat”)… the biggest part of me, however, would start to feel imaginary ticks crawling on my arms and legs, so I would stop and do a tick check… “Is that a speck of dirt, or a deer tick?” I would wonder again, and again, and again…. On the trail I couldn’t shower as often as the CDC recommends for tick prevention, but I carried wet wipes with me and wiped down my legs with them every night as part of my tick check (~50% of tick bites in adults are on their legs).

It wasn’t until I hiked into Virginia on the AT in June that I really started seeing tons and tons of deer… I swear they were waiting around every corner of the trail. In the Shenendoah’s I saw tourists intentionally feeding the deer! I was horrified… Almost as horrified as I’d been watching people inside the AT shelters pick dozens of ticks off of their dogs and drop them just outside where they could re-attach to the dog or the next unsuspecting hiker that went by! Since dogs carry ticks, and can get sick from Lyme, tick checks are important, but disposing of the ticks appropriately is too!

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Later on in Virgina, I watched a fellow thru-hiker, Fingers, count as he plucked 48 ticks from his arms and legs after finishing a night hike… I hadn’t ever thought about it, but ticks don’t just quest (hunt for food) during the day, they also quest at night! In cool, humid climates adult ticks quest both day and night… When it’s hot during the day, the young ticks that cause 98% of Lyme cases quest at night (when their local humidity drops below 80% they dry out, dessicate, and die)... I had no idea that ticks came out at night… (I blindly asked 5 of the 7 thrus that had had Lyme if they’d done any night-hiking… all 5 had gone nighthiking in Virginia (or further north) prior to coming down with Lyme symptoms!)

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On the AT in Virginia with my parents .

It was July when I first discovered a tick on my person, “Ewwww, a tick!” I exclaimed looking at the lyme carrying Ixodes scapularis tick crawling on my hand! I was at a campground in the in the Shenendoah’s of Northern Virginia with my parents, “what kind is it?” my mom asked from the camper. I looked down at it, “A deer tick… it looks like a tiny poppyseed, but it has legs and is moving….”

Sizes of Ticks

“Wait, don’t brush it off, I want to see it!” cried my mom from the camper. “Really MOM!!” I replied incredulously! I have to admit that I was eying it curiously, but I was also in a hurry to get the damn thing off of me before it decided to bite. I watched it very carefully for the 3 seconds it took for my mom to come over and check it out (here are some tick pictures just for you mom!) As soon as she looked at it, I breathed a sigh of relief, flicked it into the fire, and headed for the showers. Mom was right to insist that we, the filthy stinky hikers, shower as often as possible… (Ticks usually take a couple of hours to attach so showering is recommended by the CDC as effective prevention). reportedcasesoflymedisease_2013

It wasn’t until I got to Pennsylvania that the first thru-hikers I knew started having symptoms of Lyme… I was sitting around hanging out with my friend Sir Stooge in Boiling Springs, Pennsylvania when I noticed that he had a rash on the back of his calf (50% adult bites on legs, 22% on torso, 18% arms, 6% genitalia, 4%head/neck whereas 49% of bites on children were on head & neck). It was 4 or 5 inches across, with a partially cleared center… Bull’s eye (the classic erythema migrans rash)… A tick had found it’s target (a picture of his rash from his blog is below)…

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Sir Stooge’s rash from a picture on his blog

“I’m not sure if it’s Lyme,” he told me. “I think I’m going to wait until we get to the next town to get it checked out,” he continued (One study suggests that only 54% of thru-hikers know how to identify the erythema migrans rash of Lyme Disease). “Why?” I asked with disbelief.  “Well, it’s only 3 or 4 days to the next town… I’ll go then,” he said still procrastinating… I looked at him skeptically. Lots of thru-hikers don’t get prompt medical treatment because they don’t have health insurance and transportation to hospitals and clinics can be a challenge, but he was insured and his parents lived nearby, “You have health insurance, you’ve got a ride, go! The speed at which you treat Lyme matters,” I insisted!

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He ended up going to the ER, being diagnosed with Lyme, and was put on antibiotics (Lyme is usually treated with b-lactam or tetracycline antibiotics: penicillin or doxycycline). While he was at the hospital they tested him for Lyme, but he said on his blog, “I called the hospital to get the results of my blood titer (to see if I had antibodies against the Lyme). And much to my surprise, I tested negative for any Lyme.” Luckily for him, he took the antibiotics and his flu-like symptoms and rash went away… Unfortunately Lyme tests done when the rash first appears are rarely diagnostic because it takes the body a few weeks to generate Lyme antibodies, which is why the CDC recommends a 2-tiered approach to testing for Lyme: begin with Lyme ELISA tests (false negatives are common in the 1st 2 weeks of infection and positive results just suggest that you’ve been infected sometime within the last 5 yrs), and follow up with IgG and IgM Western blots only if ELISA is positive (Positve ELISA + Positive Western Blot ~100% certainty of Lyme Diagnosis).

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CDC report on the number of Lyme cases per month

As I continued to hike North I ran into my friend Bud, who’d left me in the dust as blazed ahead of me during the southern part of the trail… He was standing dazed and confused in the middle of the trail, clearly struggling… “Well well well, look who it is,” he said with a weak smile. “You don’t look so good,” I said, “Are you ok?” I asked, split between shear joy at seeing a hiker I knew, and concern over his obvious ill health…. “Well, I was hoping to hike, but I just can’t right now,” he confessed before continuing, “I ummmmm, well… I got Lyme… real bad, it really messed up my head…. my memory…. I started repeating myself all the time… and… I don’t think I’m going to be able to get to town today… I can’t hike that far,” he lamented.

He’d gone to the hospital and tested positive for Lyme and had already been on antibiotics for a week, but it was taking longer to recover than he’d hoped. It was a story that I would hear over and over and over again that August and September as I continued towards Katahdin… People without the characteristic rash, but with flu-like symptoms and a brain fog that just wouldn’t lift… Everything causes flu-like symptoms… With the rash, or a known tick-bite followed by flu-like symptoms Lyme is obvious, but without those two things? I wasn’t sure… actually, I’m still not… Thinking back on it, I had an awful lot of the symptoms while I was on the trail…

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Light-sensitive headaches… well, it’s probably just a migraine… fatigue and muscle aches, well, I’m a thru-hiker! Swollen knees… once again, thru-hiker… Nausea, double vision, trouble standing? Must be heat exhaustion… Having trouble breathing and exhausted? Must be my asthma… Would I even know if I had Lyme? I never thought that I had Lyme on the trail and I was never diagnosed with it… but I was treated with Doxycycline (for 10+ days, the preferred treatment for Lyme) during my thru-hike, and at least once afterwards… If I ever did have Lyme, I am relatively confident that it’s gone now!

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A dog tick (Dermacentor variabilis) I found attached to my leg on the AT in Pennsylvania. Dog tick’s don’t carry Lyme!

Lyme is certainly a scary thing, but a  life without playing outside is an even scarier thing for me. The fact that mice are also carriers for Lyme, that ticks hang out in the leaf litter, that most people get Lyme from nymphs in June and July, and that the nymphs are at least as likely to bite at night as during the day were some of the things that were new information for me. Check out my previous post: “Deer are the scariest things in the woods…” for more information about prevention, and stay tuned for one more post where I’ll go into the tick’s life cycle and what that means for Lyme disease transmission and prevention.

Have you been bitten by a tick? Did you get Lyme? Do you know someone that has? Did you get the rash (I’m curious about how similiar most people’s rashes are to the text book rashes)? Do you know where you got it? I’d be interested to hear you Lyme stories… either in comments below, or email me: patchesthru at gmail dot com.

 

Finally som tick advice for backpackers/thru-hikers based on my experience:

  • Shower as often as you can!
    • carry wet wipes to clean off and check target areas
  • Ticks bite at night!
    • Don’t hike thru tick-prone areas at night especially if the days have been really hot and humid!!! The ticks are out, and it’ll take you longer to see them and remove them
    • Don’t camp (especially if you are using a tarp without and bug prevention) in areas with dense brush, high grass, or leaf litter… Ticks quest at night!!! They don’t jump, or fly, but they do crawl.
  • Be especially attentive at lower elevations!
    • If you’re hiking at elelevations lower than 2000 feet to extra tick checks… Ticks are less common above 2000
  • Check dogs regularly for ticks (and use preventative measures)
    • Don’t forget to dispose of the ticks appropriately
    • Consider keeping your dogs out of the AT shelters when people are sleeping in them… The only way ticks have been shown to enter the shelters is if we bring them there!
  • Check your pack for ticks!!! If you set your pack down in the tall grass or leaf litter, ticks can grab a free ride directly back to you… besides, you don’t want to carry anything extra :-P
  • Walk in the center of trails where possible… It’s better for you and its better for the trail!
  • Use repellents: permethrin kills ticks on contact or 20% Deet
    • Permethrin comes in a wash or spray that you can apply to your favorite clothing and is good for dozens of washes
    • 20% Deet is just as effective as 100% deet for prevention…
  • Know the symptoms of Lyme and seek medical attention as soon as possible if you experience any of them

The beautiful balds in TN.

10 thoughts on “Ticks & Lyme Disease at home and on the trail…

  1. Thank you for the Lyme Disease awareness! Before I was officially diagnosed with it by a doctor, my mother diagnosed me as a lazy, disrespectful child when I didn’t have the strength to walk up the driveway after school one day. Those words still sting… Back then they called Lyme Disease “junior arthritis.” Eventually someone at church recognized the trademark bulls eye rash. After my mother got it sometime later, the family cat was evicted. Now I live in VA, and yes, the amount of ticks here are insane. I try to avoid going into any tall grassy meadows this time of year.

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    • I’m glad someone at your church recognized it!!! It’s so hard when people confuse illness with laziness… Having dealt with that as an adult, I can’t imagine what that must have been like as a kid!!!

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    • I knew lots of people on the trail that slept with their pets in the shelters or in their tents… I certainly understand wanting to have your beloved friend and pet sleeping beside you… Unfortunately for me I’m allergic to dogs, so even when they’re not coated with ticks they’re a problem for me in group sleeping situations like the AT shelters… If dogs move into the shelters I really should move out of them :( I don’t know how other people felt about pets in the AT shelters…

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  2. I’m from Northern Mn. My 31 year old daughter was bit by a very tiny tick. She had the bullet rash and tick was half embedded under her skin in bra area under right arm. She was treated but at times wonder if she still is bei ng affected by the disease. She has had a lot of health issues in the past year. Would she have a positive test result if retested a year later?

    Second, my husband came and picked me up from the AT when I got off for an injury in Erwin Tennessee. We were only home 4 days when he started with chills, sweating and a headache he now says he had before we came home. His symptoms then included very sore knees and at that point I insisted he get checked for lymes. It was negative. They started him on antibiotics and is improving. He said he never saw a bite but remembers something itching on his foot. So not sure if it was a Mn or TN tick, but he had classic symptoms.

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