Putting It All On The Lyme: What Clinicians Need to Know About Preventing and Treating Lyme Disease

July 15, 2022

Summer is filled with long days, warm nights and lots of…bugs. Including ticks, which in the case of deer ticks can translate into Lyme disease. In a conversation had in May, Dr. Angela Kade Goepferd chatted with Kid Expert Ashley Gyura, the clinical advisor to the NAPNAP/CDC nurse practitioner education and knowledge initiative for Lyme disease. Ashley talks to us about all things ticks, including what to watch for, how to remove them and how we can counsel patients to avoid bites. We also review current guidelines for assessment, prophylaxis and treatment of tick bites and Lyme disease.


Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts where the complex is our every day. Each week we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge and perhaps change how you care for kids.

Welcome to Talking Pediatrics. I’m your host, Dr. Angela Kade Goepferd. Here in Minnesota, it’s May. And along with May comes more sunshine, more time outdoors, and more exposure to ticks. May also happens to be Lyme Disease Awareness Month, and here to talk to us today about Lyme disease and how we can keep kids and families safe this summer is our own Children’s Minnesota kid expert, infectious disease nurse practitioner, Ashley Gyura.

Ashley was recently named the clinical advisor to NAPNAP, which is the National Association of Pediatric Nurse Practitioners, Nurse Practitioner Education and Knowledge Assessment for Lyme Disease Initiative, which is in cooperation with the CDC. Ashley, it’s great to have you on Talking Pediatrics today.

Ashley Gyura: Thank you so much for having me, Dr. Goepferd.

Dr. Angela Kade Goepferd: So I’m always interested to hear how people get interested in their career path of choice, which for you is infectious disease. So tell me a little bit about why you got drawn into the world of infectious disease.

Ashley Gyura: Absolutely. So I was doing primary care for my first few years out of grad school. And I was doing a lot of adolescent medicine, including STI work and preexposure prophylaxis for HIV, developing those programs. And then I did some travel in Panama with a program down there. And a lot of what I was doing in Panama was working with the Indigenous population and the infectious diseases that they deal with on a day to day basis down there. And honestly, I never really thought about infectious disease as a specialty for nurse practitioners. But when this position came open at Children’s Minnesota, I knew I had to try for this position, and luckily, I was able to get it. And I think I’ll be here for a very long time.

Dr. Angela Kade Goepferd: Well, we’re really lucky to have you. And I appreciate getting to work alongside you here. This new position that you have as kind of the Lyme disease expert, what drew you in that direction? Or how did you get connected with that?

Ashley Gyura: So I find that Lyme disease is a very interesting disease process, and we are kind of used to it in Minnesota, but maybe we shouldn’t be so used to it in Minnesota. I think that sometimes it can be overlooked as the symptoms that it causes and how severe the disease can be because it’s so common here. And the same goes into the Northeast as well. When I was working in New York, we had plenty of Lyme disease there too, even though I was in the city, because of traveling out of the city and that kind of thing. And I think that it really can cause some serious side effects or serious symptoms for many patients, and that we should have that in the back of our head and have a high index of suspicion for that.

Dr. Angela Kade Goepferd: So let’s talk about Lyme. That’s what I really want to focus on with you today. I want to be sure that we get good information out to folks to help care for kids this summer. So where and when should we be concerned about Lyme disease?

Ashley Gyura: Well, interestingly, ticks can actually be around at any point during the year. It’s not just the warm weather months, although that is their preferred time to be active. So typically between April and October is when we’ll see the most activity from ticks, and therefore the most Lyme disease spread. But if we have particularly a warm winter, all they really need is a few days of over 40 degrees Fahrenheit that they can become active again, so knowing that it really can be spread at any point. And regarding where we typically see Lyme disease in the United States, it’s usually the upper Midwest, so Minnesota, Wisconsin, and then the Northeast and Mid Atlantic states are really where it’s focused. There have been Lyme disease reported in every state of the US.

Dr. Angela Kade Goepferd: Okay. And when we think Minnesota, Lyme disease or really anywhere in the Midwest or Northeast, are we thinking rural? Are we thinking in my backyard?

Ashley Gyura: It certainly can be right in your backyard. Depending on where you live, if you have wooded backyard or a lot of bushes, or high weeds, or even high grasses that are there on purpose, ticks still love those areas. So you don’t have to be hiking in boundary waters to get Lyme disease here in Minnesota. It really can be in any of the areas that you might have those conditions.

Dr. Angela Kade Goepferd: And if a child gets a tick bite, how do we care for them? Or what should be our first advice to parents?

Ashley Gyura: Very first thing is if that tick is still in them, to please remove the tick. That is obviously the first thing that we should recommend. Sometimes parents don’t know how to remove the tick. And there are a lot of folklore remedies that parents have heard, such as putting Vaseline on the tick, or burning the tick off with matches. And we certainly don’t recommend doing either of those things. Sometimes Vaseline can make the ticks burrow deeper into the skin. So really what they should do is grab some fine needle tweezers, get as close to the skin as possible, hold onto the tick and pull upwards really slow and steady to try to get that whole head part out of the skin.

Dr. Angela Kade Goepferd: None of us are probably tick experts, so only certain ticks carry the bacteria that causes Lyme disease. So what should we be advising parents to look for if they do find a tick?

Ashley Gyura: One of the most prominent things that helps differentiate deer ticks from wood ticks or dog ticks is that deer ticks really are extraordinarily tiny, especially the nymph ticks that you’ll see more towards the spring, early summer, they can be tinier than a freckle. Even if you know what to look for, they’re so tiny, you really can’t see the coloring and that kind of thing. What you can do actually is there is a center at The University of Wisconsin Madison, and they have a tick identification center that you can send them a picture of the tick, answer a few questions online, and they can help identify if that was a high risk tick or not.

Dr. Angela Kade Goepferd: So if it’s a larger tick, I mean one that we’re seeing and that we’re pulling off, chances are that’s probably not a deer tick.

Ashley Gyura: Chances are it’s probably a dog tick or a wood tick, unless it’s very engorged and you can tell that it’s full of blood. In that case, it’s hard to know.

Dr. Angela Kade Goepferd: Hard to know.

Ashley Gyura: And the adult ticks are about the size of a sesame seed, so they’re a little bit easier to identify. But those nymph ticks are even tinier than a poppy seed. They’re very small.

Dr. Angela Kade Goepferd: So what if parents don’t find a tick, or they’re worried that their child might’ve gotten bitten? What should we tell them?

Ashley Gyura: So at that point, especially if they don’t know that a tick has bitten their child or not, I’d recommend that they watch for symptoms such as fever, chills, those muscle aches, body aches, headache, and then also the rash of erythema migrans, which can look a lot of different ways. But if parents start to see all of those symptoms together, then they should at least call their healthcare provider or even visit, come on into the clinic so that we can identify what’s going on.

Dr. Angela Kade Goepferd: So help us with erythema migrans. So these target lesions, as a primary care pediatrician, a lot of bug bites can start to look like a target lesion, just the way the swelling happens. And a lot of other conditions can cause similar lesions. So with the erythema migrans that’s associated with Lyme, what are we looking for? How can we kind of differentiate that rash?

Ashley Gyura: So with erythema migrans, it’s primarily a flat rash. So typically when you see other bug bites, mosquito bites, that kind of thing, even if they’re getting very swollen, they’re usually very hot and they can be pretty swollen. They’re raised off the skin, whereas erythema migrans is generally flat, as opposed to erythema multiforme, those can look really similar, especially once the erythema migrans begins to disseminate and there’s more than one lesion. But erythema multiforme is a raised rash. So do the whole thing where you close your eyes, feel the rash, and try to figure out what you’re feeling. All rashes can be warm because it’s blood up to the skin.

Dr. Angela Kade Goepferd: We have a child who we think had a tick exposure. Maybe we have a suspicious rash. Maybe a family member found a tick or we have some worry that there’s been a definitive exposure. Can you walk us through post exposure prophylaxis?

Ashley Gyura: Post exposure prophylaxis can be used for any age child. So any age can get doxycycline, which is what the medication is. It’s a one dose doxycycline at 4.4 mgs per kg. Now you really want to try to identify if it’s a high risk tick bite or not a high risk tick bite. Per the guidelines that just came out in January of 2021, they really want you to be very certain it’s a high risk tick bite before you would offer prophylaxis. That being said, one dose of doxy is very safe, so if there’s one or two things that you’re not quite certain about, then you can use your clinical judgment.

So what they look for is that the tick has been removed within 72 hours, that part is very important, that it’s an identified Ixodes species, or deer tick, black legged tick vector. That part’s a little bit more difficult because as you said, we’re not all etymologists around here. So if you’re not sure, but you also live in an endemic area, and this family’s fairly certain that the tick was attached for more than 36 hours, so it looks like there’s some degree of engorgement, those would all be the conditions that you might want to talk with a family. You share decision making and talk about if they would like a post tick exposure prophylaxis dose.

Dr. Angela Kade Goepferd: And if it’s been more than 72 hours, at the point, we’re watching for signs or symptoms of Lyme.

Ashley Gyura: Exactly. At that point, you’re just watching for all those early symptoms.

Dr. Angela Kade Goepferd: And can you walk us through those? What might be some of the early symptoms of signs of Lyme disease? And then what might we see later on?

Ashley Gyura: Absolutely. So the early Lyme disease symptoms can start within three to 30 days of a tick bite, so watching within that range, I think people might think it needs to be immediately after, but that’s not really the case. They can get things that can look like a lot of other things in our children, fever, chills, headache, fatigue, muscle aches, and swollen lymph nodes, which overlap with a lot of different presentations and disease processes that our kids present with. And then of course, the erythema migrans rash, if they have a combination of those, you can be fairly certain that it’s a good clinical diagnosis case. If they’re presenting and you’re not quite sure, the rash doesn’t look the right way, it looks a little bit different than you’d expect, you’re not certain it’s an erythema migrans rash, you certainly could send testing at that point.

Dr. Angela Kade Goepferd: Are there certain symptoms other than the rash that might tip us more toward initiating some testing for Lyme, their duration of symptoms, or how they might differentiate?

Ashley Gyura: I would say it’s kind of difficult in that early time period. There probably isn’t anything else other than that erythema migrans rash that would really push you in the direction of Lyme, unless they also say, “By the way, a week ago, I took a tick off my child that seemed like it had been there for a while,” then you should really have Lyme in the back of your head. But unfortunately, a lot of those symptoms can be very nonspecific.

Dr. Angela Kade Goepferd: So really, it’d be length of symptoms at that point if a child’s been sick for a long time and we don’t have a reason to pursue.

Ashley Gyura: Exactly, exactly. And some kids will actually get sick and then get better too. That’s how they kind of progress to the early disseminated and late stages of Lyme disease. So just keeping an eye on what’s to come, especially if you are not sure what they came in with initially.

Dr. Angela Kade Goepferd: And what are some of those sort of early disseminated or later stages of Lyme disease that we would want to watch for?

Ashley Gyura: So there’s a few different syndromes that you can look for, so one is they can present with carditis, so it really is changing the electrical conduction of the heart because that infection has disseminated now to the heart. It can also present with CNS symptoms, such as meningitis, radiculopathy, and cranial nerve palsies. And with those palsies, it can be really difficult to differentiate between an idiopathic palsy and Lyme disease palsy. And treatment differs between those two, so sometimes you run into a situation where because we live in an endemic area here in Minnesota, you might need to be considering and treating for both at the same time.

Dr. Angela Kade Goepferd: And when we’re considering testing, where should we start? What would we do for pursuing Lyme?

Ashley Gyura: So serology testing really is the mainstay of testing for Lyme disease. And we really recommend that you stick to the FDA approved testing protocols that the CDC also recommends. There is other testing protocols out there, but they’re not FDA approved. It’s difficult to interpret. And they’re not recommended in a clinical setting for diagnosis of Lyme disease.

Dr. Angela Kade Goepferd: And is there a window in which we should do testing? I was reading earlier about a seroconversion window, where we might miss if we test too early.

Ashley Gyura: Absolutely. So because your erythema migrans can present as early as three days after the tick bite, as you know, the IGM doesn’t often start to develop until maybe a week in for some diseases, and this is one of them. So if you’re testing at that three day mark or four day mark, you might miss a seroconversion at that point. If you really have a very high suspicions for Lyme disease and you have negative testing, then I would repeat testing in two to three weeks to see if you have seroconversion of any of those antibodies.

Dr. Angela Kade Goepferd: And based on what you said earlier, it sounds like that would be a good time to go ahead and do the post exposure prophylaxis, so if you have high suspicious, you’re within three days, the test was negative, but you really are suspicious, that does of doxycycline may be a good idea.

Ashley Gyura: If you have high suspicion that those criteria were met and you want to do post exposure prophylaxis, you don’t need to do any testing. And that’s the same for in the early presentation with erythema migrans, testing isn’t required for confirmation of diagnosis. That can all be a clinical diagnosis.

Dr. Angela Kade Goepferd: So now we have a child, we’ve done testing, they’ve come up positive for Lyme. Their story fits. How do we approach treatment for a child with Lyme disease?

Ashley Gyura: So treatment for Lyme disease depends on their presentation. If they’re presenting with an erythema migrans presentation and they’re in the early disease process, then they can receive any number of antibiotics, including doxycycline, amoxicillin, or cefuroxime, doxycycline being the preferred, although we have seen studies that show doxycycline and amoxicillin work very similarly. And then with the doxycycline for the early Lyme disease, that would be 10 days. Depending on how they present after that, let’s say they’re in the early disseminated or late stages, then the dosing and duration actually changes based on their presentation.

Dr. Angela Kade Goepferd: And I assume longer duration of treatment.

Ashley Gyura: Yes. So if they’re presenting with CNS disease, then they get 14 to 21 days of treatment. And this can all be done outpatient. They don’t have to get IV therapy for CNS disease if they did not come into the hospital in the first place. And Lyme arthritis is the same thing, that’s actually 28 days of treatment to start with, and then they might need to extend if they have refractory arthritis or are not improving the way that you think that they should improve. And again, it can be done orally as an outpatient if you feel confident about that diagnosis, knowing that Lyme arthritis, there’s some difficulty differentiating it from septic arthritis.

Dr. Angela Kade Goepferd: Sure. So that’s my next question is: How should we think about managing some of these complications like carditis, arthritis, neurological signs? Specifically, what would tip us to managing them outpatient in the office versus sending them into the hospital to be seen or evaluated by specialists?

Ashley Gyura: With carditis or meningitis, often just because we’re pediatric providers and we want to make sure that we provide the best care possible without missing a diagnosis, if we’re concerned for meningitis, we’ll send them to the ER. And I think that’s totally acceptable because you don’t want to miss something that’s more severe than Lyme meningitis. Right? So you don’t want to miss a bacterial meningitis. So if you’re sending those kids into the hospital, they may come in, get admitted, they might get a tap. It’s not required for a diagnosis of Lyme meningitis, but they may get that just to rule out other more severe illness.

With carditis, depending on their symptoms, if they’re having very severe symptoms, you get an EKG and you’re noticing some EKG changes, they may need to come in simply for cardiac monitoring until we can get things under control. In that case, they’ll probably be on IV medication while they’re in the hospital and then switch to an oral medication for further treatment as an outpatient.

Dr. Angela Kade Goepferd: And any of the radiculopathies or those types of symptoms, can those primarily be managed outpatient?

Ashley Gyura: They can, and they’re actually very uncommon in children. It’s much more common to see those in adults than children. So in my recent memory, I don’t think that we’ve seen a radiculopathy from Lyme disease here at Children’s. Certainly could happen, but uncommon.

Dr. Angela Kade Goepferd: And speaking of things that are more common in adults than kids, let’s just talk a little bit about the concept of chronic Lyme disease. And is that something that we see in kids or that can happen with kids?

Ashley Gyura: So chronic Lyme disease is a difficult discussion to have, just because that term actually doesn’t have a medical definition right now. So when people use the term chronic Lyme disease, it can mean any number of different signs, symptoms, or combination of the above. What we do know is that patients can have symptoms after their treatment of Lyme disease that seem to be prolonged after that, even up to a year. What’s really interesting is that when some studies have been done that compare the prevalence of those symptoms in a Lyme disease treated population, and the prevalence of those symptoms in a non Lyme disease treated population, the prevalence actually is about the same, so it’s hard to know. Is this kind of an attachment to the recent Lyme disease diagnosis? Is it really from Lyme disease? Or is it something totally different altogether?

We’ve all heard of long COVID. You can see symptoms after syphilis or after streptococus, so it certainly is not unheard of to have symptoms after treatment, even though you don’t have current infection.

Dr. Angela Kade Goepferd: With particular regard to pediatrics, I’ve typically counseled families that kids do tend to recover quite well from Lyme disease, so they don’t really need to be worried about this causing lifelong debilitation for their kids, or other issues. Would you agree with that?

Ashley Gyura: Yes, that does seem to be the case that for the very large majority of children, once we treat with antibiotics for that time period, based on whatever symptoms they have, they tend to do very well, have very good prognosis, and most commonly do not have any prolonged symptoms after those treatments.

Dr. Angela Kade Goepferd: The last thing I want to talk to you about is prevention because while we’ve talked about treatment and signs and symptoms, obviously we know the best treatment is prevention. So how should we be advising families this spring and summer to prevent Lyme disease?

Ashley Gyura: So they really should be using a multifactorial approach, just because one way does not really get rid of all ticks. So we want to prevent any tick bites and there’s insect repellents that we can use that do that. There was actually a very interesting survey done by Consumer Reports in 2015 that showed that only 23% of the adults that surveyed thought that there were repellents on the market that were safe for children.

Dr. Angela Kade Goepferd: Oh, wow.

Ashley Gyura: So a very large portion of parents probably don’t realize that they can use many of these repellents on their kids.

Dr. Angela Kade Goepferd: And how do they differentiate that? You see the level of DEET on there, and I know that higher levels of DEET offers better protection, but I know a lot of parents are very nervous about putting that on their kids’ skin. So how can a parent differentiate in the store what they can or should be using?

Ashley Gyura: Absolutely. So it’s recommended for children by AAP, CDC and NAPNAP that they use only 10% to 30% DEET. What’s interesting is the concentration of DEET that’s listed, so that percentage that’s there, it actually really refers to how long the protection will last on your skin, rather than how much concentration is in there. And over 50%, we really get no benefit at all, so nobody needs to use anything over 50%. The reason they recommend 10% to 30% for children is that gives them about five to six hours of protection, and that tends to be enough for kids because they’re not spending days and days on end outside. We want to use as little as possible, just a nice light layer on their exposed skin.

Dr. Angela Kade Goepferd: My kids love wearing shorts and T-shirts in the summer. I can rarely get them in anything else. Should we be switching that up if we’re going into heavily wooded areas in terms of what they should and shouldn’t be wearing or things they should avoid?

Ashley Gyura: So certainly, if they can tolerate wearing long socks and long pants, long sleeves when you’re going hiking, but we all know sometimes in the 90 to 100 degree weather when it’s also 70% humidity, nobody’s going to be wearing that. And so just making sure that any exposed skin is treated with a repellent, and there are also these sunscreen and repellent combos that we actually don’t recommend because the repellents need to be applied far less often than the sunscreen does. The sunscreen actually reduces the effectiveness of the repellent, so we recommend that you use separate products, sunscreen first, followed by repellent.

Dr. Angela Kade Goepferd: It sounds like the insect repellent will last for five to six hours, whereas sunscreen, we should really be reapplying every couple of hours, so we can go ahead and reapply the sunscreen then on top of the insect repellent, but it will still work.

Ashley Gyura: It will still work, exactly. And some parents are still concerned, despite the safety evidence of DEET, using that on their child. So there are a few other options too that might be more tolerable for those families that want an alternative to DEET. There’s a product called Picaridin that’s in many of the products. A 10% Picaridin will actually cover you for about the same amount of time, maybe around that four to five hour mark. And it smells really nice. It’s actually a more natural compound that’s made very similar to the black pepper plant. And so parents might be more likely to use that. And then there’s also oil of lemon eucalyptus that can be used for any children aged three years and up. And that comes straight from the gum eucalyptus tree, so parents might like that one as well.

Dr. Angela Kade Goepferd: One other strategy I’ve employed myself when I lived at a house that had a pretty wooded area was treating the plants themselves. I still put insect repellent on my kids, but I also tried to decrease the volume of mosquitoes and ticks in the yard by treating the foliage as well. Is that something parents could do?

Ashley Gyura: Absolutely. So if they can treat their yard or want to treat their yard, that’s a great method in order to keep the number of ticks down. The other thing they can do is just make sure that a lot of those tall bushes, grasses, that kind of thing, is more on the outskirts of the yard and maybe not where the children are playing as much. Ticks don’t jump or fly, so they’re really waiting for you to brush up against them. And if that area isn’t there, then there’s less likelihood of that happening.

Dr. Angela Kade Goepferd: Well, Ashley, thank you so much for joining us. I feel well prepared for the summer months ahead, so I appreciate you educating us about Lyme disease today.

Ashley Gyura: Thanks for having me. If anyone wants to learn more or look for more information, they can go to napnap.org/napnapknowslyme. There’s also great information on CDC, as well as repellentinfo.org. And please look up the Midwest Center of Excellence for vector borne diseases. They have the tick identification website, as well as some other resources that may be helpful when you’re talking to families.

Dr. Angela Kade Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Amy Juba is our marketing representative. For more information and additional episodes, visit us at childrensmn.org/talkingpediatrics, and to rate and review our show, please go to childrensmn.org/survey.