Blacklegged tick

Blacklegged tick

For many people, July means hiking, tubing, camping, vacations and other activities that put them in touch with the great outdoors. But all those activities also put people in contact with ticks. July is the peak month for Lyme disease transmission, and the Washington region is considered one of the epicenters of the illness.

We explore what Lyme is, how it became prevalent in the region and how to keep yourself and your loved ones safe from the tick bites that transmit it. We also discuss how locals are trying to fight the disease, through medical, educational and legislative means.

Produced by Mark Gunnery

Guests

  • Michael Raupp "Bug Guy" and Professor of Entomology, University of Maryland; @BugoftheWeek
  • Monte Skall Executive Director, National Capital Lyme Disease Association; @NatCapLyme National Capital Lyme Disease Association
  • Samuel Shor Chair, Loudoun County Lyme Commission, Immediate past president, International Lyme and Associated Diseases Society; Associate Clinical Professor, George Washington University Health Care Sciences
  • John Aucott Associate Professor of Medicine, Johns Hopkins University School of Medicine; Director, Johns Hopkins Rheumatology Lyme Disease Clinical Research Center

Washington Is An Epicenter For Lyme Disease. Here’s How To Protect Yourself

Transcript

  • 12:00:02

    KOJO NNAMDIYou're tuned in to The Kojo Nnamdi Show on WAMU 88.5, welcome. July is here, for many people that means hiking, tubing, camping, and other activities that put them in touch with the great outdoors and with ticks. July is also the peak season for people catching Lyme disease and the Washington region is considered one of the epicenters of the illness. Today we'll explore what Lyme is, how to keep yourself and your loved ones safe from the tick bites that transmit it, and learn about the ways people are trying to fight the disease both with medicine and legislation in the region.

  • 12:00:34

    KOJO NNAMDIJoining me in studio is Dr. Samuel Shor. He is the Chair of the Loudoun County Lyme Commission and the Immediate past president of the International Lyme and Associated Diseases. He's also an Associate Clinical Professor at George Washington University Health Care Sciences. Samuel Shor, thank you for joining us.

  • 12:00:51

    SAMUEL SHORThank you.

  • 12:00:52

    NNAMDIDr. John Aucott is an Associate Professor of Medicine at Johns Hopkins University School of Medicine and Director of Johns Hopkins Rheumatology Lyme Disease Clinical Research Center. John Aucott, thank you for joining us.

  • 12:01:04

    JOHN AUCOTTThank you.

  • 12:01:05

    NNAMDIMichael Raupp, we all know, so we'll just skip him. No, no Michael --

  • 12:01:08

    MICHAEL RAUPPThank you, Kojo.

  • 12:01:09

    NNAMDIMichael Raupp is a Professor of Entomology at the University of Maryland. He's also known familiarly as the "Bug Guy" and as a fairly frequent guest on this broadcast. Thank you for joining us again.

  • 12:01:17

    RAUPPAlways a pleasure to be here. Thank you.

  • 12:01:19

    NNAMDIAnd Monte Skall is the Executive Director of the National Capital Lyme Disease Association. Monte Skall, thank you for joining us.

  • 12:01:26

    MONTE SKALLIt's a pleasure to be here.

  • 12:01:27

    NNAMDIJohn Aucott, you are as I mentioned Director of the Lyme Disease Clinical Research Center at Johns Hopkins. What exactly is Lyme disease and how serious an illness is it?

  • 12:01:36

    AUCOTTSo Lyme disease is an infectious disease. It's caused by a bacteria mostly in North America called Borrelia burgdoferi. It's a spirochete bacteria that's transmitted by the bite of a tick, and that bacteria once it's in your skin multiplies and causes an infection that can be quite serious. It has different stages. Early disseminating light stage and the different stages have different manifestations, but it can be quite serious. It can involve the heart and internal organs in its later stages. It's a big deal.

  • 12:02:08

    NNAMDISam Shor, tell us a little more. What kinds of symptoms does Lyme disease cause shortly after it's transmitted?

  • 12:02:14

    SHORWithin three days to three to four weeks an individual can develop a viral like illness, low grade fever, lymph node swelling, sore throat, muscle aching. And even without treatment it will be a self-limited process lasting anywhere from a week to a couple of weeks. But if not treated a long term sequela or symptoms can be generated. Dr. Aucott alluded to some relating to the heart, joint pain, neurologic symptoms, cognitive impairment, peripheral neuropathy. So many different symptoms can develop if not adequately treated.

  • 12:02:54

    NNAMDIMike Raupp, the ticks that spread Lyme disease can be very small. How do they transmit the disease to humans?

  • 12:03:00

    RAUPPWell, their diabolically clever. What they do is they'll kind of hang out. Kojo, you can see this.

  • 12:03:06

    NNAMDIYep.

  • 12:03:07

    RAUPPThis is the nymph of a lone star tick. It's slightly smaller --

  • 12:03:11

    NNAMDIIt looks like a dot on a piece of paper.

  • 12:03:11

    RAUPPIt is a dot on a piece of paper. And that's why they're often missed. They have a behavior called questing where they will first move towards a source of CO2. They will get up on a piece of vegetation, a piece of grass with their four legs extended and then when you come by, boom, they're going to latch on to you. They'll find a nice spot behind your knee and your armpit, behind an elbow, along your scalp line where they'll embed. They'll drive their mouth parts in and begin to feed.

  • 12:03:40

    NNAMDIA lot of people are rightfully concerned about catching Lyme while enjoying outdoor activities like camping or hiking, but people can also catch it in their own backyards, how, why?

  • 12:03:51

    RAUPPWell, in the Washington metro region, Kojo, as you well know. Excuse me. Those cough buttons are very helpful and handy. Thank you very much for showing me that. You know, I think part of the situation, Kojo, is we've built in the Washington region, we've basically encroached on nature. We now have a situation where we have very high levels not only of deer, which are a primary host for the black legged tick. It used to be called the deer tick. But in addition to this we have many small mammals that are not found in and around our homes.

  • 12:04:29

    RAUPPSo behind your house perhaps you have a wood pile, a tool shed, a place where small rodents, white footed mice in particular can reside and hang out and escape their predators. These are going to be the sylvan or the wild reservoir for that Borrelia microbe and this is where those ticks are going to pick up that causal agent. And you're out in your yard playing, your backyard, those ticks can then climb on you and transmit the disease. So it's kind of a little bit of a nature out of order here situation we're in right now I think.

  • 12:05:06

    NNAMDIMonte Skall, many people think of Lyme as a disease that affects the northeast like New York State and New England particularly hard, but how prevalent is Lyme in this Washington region?

  • 12:05:16

    SKALLWell, Kojo, we have been in existence since -- our association since 2001. And we have been actively talking to people and educating people about Lyme and tick borne diseases. The Virginia, Maryland, and Metro area have always been active. We have worked with Fairfax County Health Department, Montgomery County Health Department with Ike Leggett doing taskforce studies, doing tick drags to find what type of ticks are here, what these ticks are carrying. And we have found that it is very active in both Maryland and Virginia as well as the District of Columbia. And people are surprised to hear that because they think, well, there are no deer here only in Rock Creek Park, but that is not true since this is a bacteria that comes from the white footed North American mouse. As long as you have mice you have exposure to this disease.

  • 12:06:18

    NNAMDIMike Raupp, some people blame climate change for the spread of Lyme beyond its initial epicenter further north, why?

  • 12:06:26

    RAUPPWell, that's an interesting point, because really the early detention course and hence the name Lyme where in Lyme, Connecticut. That's where this causal agent was first identified. So what we've actually seen is an expansion southward, Kojo. So I don't think we can attribute this directly to climate change. We do know, however, that as our northern states warm that some of the habitat for things like not only the small mammals, which are held at bay by cold winter temperatures. But also the movement of deer and perhaps the movement of ticks can expand this range further northward.

  • 12:07:05

    RAUPPSo I believe that climate change will have a role in the redistribution not only of things like our black legged tick, but related ticks like our lone star tick, which was primarily a southern tick, which we now see expanding into this range as well. So climate change definitely is going to be a player in redistribution of these ticks.

  • 12:07:26

    NNAMDIOnto the phones. Here is Douglas in Bethesda, Maryland. Douglas, you're on the air. Go ahead, please.

  • 12:07:31

    DOUGLASHi, Kojo. It's a pleasure to speak with you. I'm calling, because I have Lyme disease. I've been symptomatic since the summer of 2015. My mother also has it. It is a truly terrible disease. Before I got sick, I was training to climb mountains in the Himalayas and at the height of my illness I could barely leave my house.

  • 12:08:01

    NNAMDIIt weakened you considerably.

  • 12:08:05

    DOUGLASYeah, I mean, I had to drop out of grad school. I had to move back home with my parents. It can -- I mean, truly it can destroy a person. And in many ways I'm lucky, I caught it after about six months seeing I don't know how many doctors maybe 10 doctors. But I know people who have had it for decades and who have been irreparably damaged.

  • 12:08:28

    NNAMDIDouglas what was the first symptom you observed of Lyme?

  • 12:08:32

    DOUGLASA strange dizziness, a very odd dizziness and that's the one symptom that's persisted with me the longest. But after that I started having headaches, some joint pain, TMJ, difficulty remembering things, difficulty with critical thinking. Yeah.

  • 12:08:55

    NNAMDIOkay. Well, thank you very much for sharing that, because we'll be talking a lot about those things. I'll start with you Sam Shor. Not everyone gets the notorious bullseye rash that marks disease transmission. What's the best way to identify a tick bite?

  • 12:09:09

    SHORWell, that's a very good point. And unfortunately particular in the setting of it being so small that the majority of people ultimately diagnosed with chronic Lyme disease don't remember being bitten by a tick and very often statistics range from 30 to 70 percent of people will develop a bullseye rash. So if you do not develop the hallmark bullseye rash then consideration particularly in the spring and summer, which is the peak incidence from May through September particularly July and August, if you develop the summer flu then I would consider that you've been exposed to tick borne illness.

  • 12:09:56

    NNAMDIJohn Aucott, diagnosing Lyme can be difficult and the blood tests that are currently available are far from perfect. What makes it so hard to detect?

  • 12:10:05

    AUCOTTThe difficulty is there is no direct diagnostic for the actual bacteria. The currently available tests are antibody tests. So those are indirect tests that depend on your immune system making antibodies, which takes time, is variable, and doesn't tell you whether the bacteria is there or not. So we don't have reliable tests that detect in DNA or proteins or the ability to culture the organism. So we don't have a direct test to confirm without a doubt that somebody has infection. And after treatment we don't have a direct test to tell whether the bacteria has been eradicated by the treatment. We're always relying on these indirect tests of antibodies, which are very imperfect.

  • 12:10:45

    NNAMDIAre there any new tests in the works?

  • 12:10:47

    AUCOTTThere's a lot in the works and that's one area of hope. I think is that there are a lot of projects right now looking at better diagnostic tests. And some that will likely be coming into the market over the next few years. So I think that is an area of hope that testing hopefully will be getting better.

  • 12:11:05

    NNAMDIDeborah emails in, Mike Raupp, since these bugs are so small, how do you know one is on your body? Can you feel it biting or do you need to just check your body?

  • 12:11:14

    RAUPPWell, Deborah, this an excellent point you bring up. Actually when the adult ticks are walking up my body, yes, indeed, I do feel them. And fortunately I pick them off immediately. Here are some that I picked off me a couple weeks ago. These are American dog ticks. They're big enough. They get caught in my hair. They're easy to find. The ones that I really worry about are these little tiny guys, the nymphs are incredibly small. They could look like a small freckle. And if I know I've been in tick territory, I think the single most important thing you can do is to do a full body inspection. Some time you will need to enlist a helper to get to those hard to see places around the back, but get that inspection done within the first 24 hours. Get that tick off of there. And this is, I think, the single most important thing you can do.

  • 12:12:06

    RAUPPAnd at this point I'd also like to add this particular disease has a very unusual age distribution. It's most common in children from about 4 to 9 year old and then in seniors from about 60 to 65. It's what we call bimodal. And it's very very important if you have children playing outdoors to be sure to do those tick inspections when they come back indoors, because the kids are not going to be able to do this. You're going to have to help them. So be sure you check out those kids.

  • 12:12:37

    NNAMDIAJ emails in, as a kid, that spent all summer outdoors, I didn't not realize that I had even been bit by tick until I was covered in the infamous red targets. It was a miserable recovery, but luckily I have not noticed any long lasting effects. I would not do again. You were going to say.

  • 12:12:55

    RAUPPYes. I was going to point out also sometimes a subtle potential exposure are pets that are allowed to roam outside in the brush and even though they maybe be treated with cariosities or agents that are supposed to kill the ticks. It's not uncommon for ticks to jump on cats or dogs. And the animals are then brought into your home and reside on your beds and couch, etcetera. And the tick could drop off and not necessarily be killed by what you're assuming is going to be an adequate protection.

  • 12:13:35

    NNAMDIWe've got to take a short break. On our way to the break we'll be hearing "Tick Check 1-2" by MC Bug Z for the Fairfax County Health Department. I'm Kojo Nnamdi.

  • 12:15:00

    NNAMDIWelcome back. That was "Tick Check 1-2" by MC Bug Z for the Fairfax County Health Department, because today we're having a conversation about Lyme disease, which can be transmitted by ticks. And when we're talking about appeals to children there something you wanted to mention Monte Skall that I'm holding in my hand.

  • 12:15:19

    SKALLYes. That's our new booklet out. It's called "Tick Busters, Tickula: Wanted Dead or Alive" and we're very concerned about children and educating them about tick borne diseases, because they are the population that's really affected the most and they know the least. They are not really educated about how to do prevention and how to be aware. So we've come out with a line of educational materials and this new booklet is being made available to schools systems and also to private schools. Anybody that would like to see it, it's available. And we're very proud of it because we think it's a great way of educating children, because prevention is the best education you can have with this disease.

  • 12:16:08

    NNAMDIMonte Skall is the Executive Director of the National Capital Lyme Disease Association. She joins us in studio with Michael Raupp. He's a Professor of Entomology at the University of Maryland. And Dr. John Aucott is Director of the Johns Hopkins Rheumatology Lyme Disease Clinical Research Center. And Dr. Samuel Shor is the Immediate past president of the International Lyme and Associated Diseases Society. He's also Chair of the Loudoun County Lyme Commission. Sam Shor, Lyme is sometimes misdiagnosed as other diseases like MS, Lupus, Alzheimer's. Why is that and how serious a problem are these misdiagnosis?

  • 12:16:44

    SHORWell, unfortunately Lyme disease has been characterized as the great imitator and has the potential of causing many different conditions, and in fact can potentially cause MS like presentations. But not everybody with MS has Lyme disease. So although it's important to question the potential of that being an underlying cause, it's important to recognize that it's only a small proportion that can cause that. And as I say, the great imitator it has the potential of creating quite a number of clinical presentations. It's what's we call neurotropic. Its tropism or drawn to the nervous system, so cognitive impairment, peripheral neuropathies and the like are not uncommon.

  • 12:17:38

    NNAMDIHere now is Lisa in Hillsborough, Virginia. Lisa, you're on the air. Go ahead, please.

  • 12:17:43

    LISAYes. Hi. Thanks for taking my call. I'm also glad to hear that there's a lot of research going on with this because my teenage son was diagnosed and he lost almost a year of school. After we had been to 8 or 10 different specialists chasing symptoms, we finally went to an internist, who kind of specialized in functional medicine I guess. He did a lot of fibromyalgia and Lyme patients and the treatment was really very long and pretty intense, but he told me something interesting that one of the ways that they know you had Lyme is if the Lyme treatment helps with the symptoms, which seems kind of back handed to me.

  • 12:18:21

    LISABut it was really really serious, and I think my son's going to end up with, you know, some sort of long term problems his whole life really, but just because how serious all the symptoms were. They were really serious. And we're Loudoun and I think between global warming and just overall population densities and development tick borne diseases are going to be huge huge problem. So I'm glad to hear that there's a lot of research going on with it.

  • 12:18:49

    NNAMDIThank you very much for you call, Lisa. Monte Skall, you're with the National Capital Lyme Disease Association do a lot of work on educating people about Lyme. You just showed us one example. But what does that educational work focus on and what do you think are people's biggest misconceptions about Lyme?

  • 12:19:07

    SKALLWell, probably the biggest misconception is this is not a serious disease. And, you know, we all grew up with ticks. I'm probably the oldest one on this panel today. And I can remember -- I grew up on a farm sitting around on the porch at night picking ticks off our dogs and stomping them, burning them, whatever. So people -- my generation or even a little younger have grown up with the concept that Lyme disease is easy to treat if you get the disease. And what we found now that that's not necessarily so. It is not easy and so many people have not been diagnosed properly or early enough to get the right type of treatment. So the most common misconception is that it's not a serious disease.

  • 12:19:58

    NNAMDIMike Raupp, you spend a lot of time outside and you have had Lyme disease a number of times yourself. What do you recommend for people if they find a tick on themselves or on their child?

  • 12:20:08

    RAUPPWell, the critical piece after the inspection, of course, is to get that tick off as quickly as possible. And the other piece of the puzzle here I think to the point we've made before, Monte just made is that all ticks carry Lyme disease and this is absolutely not true. I recommend when you remove that tick if it's engorged if you think it's been on for more than 24 hours that you get that tick identified. By the proper identification of that tick we can automatically rule in or rule out Lyme disease. If this is a lone star tick or American dog tick we can put Lyme disease aside. If it turns out to be the black legged tick, now we have to be very careful and you need to have that discussion with your physician about the potential risk here.

  • 12:20:57

    RAUPPSo I think getting that tick identified is absolutely key. We now have a free service through the Maryland Department of Health where you can send a tick in. We will identify that tick for you so you can now as I said, rule out or rule in the potential for Lyme disease.

  • 12:21:15

    NNAMDIGo right ahead, Monte.

  • 12:21:16

    SKALLI'd like to add to that. We actually have a brochure we've come out with a couple of years ago. And it's called, "Why Test Your Tick?" And we feel -- and we try to encourage and educate people to hold on to those ticks and not flush them down the toilet or throw them out, because you can learn a lot, especially since we are finding out about so many different strains of this Borrelia and also other co-infections, other pathogens that ticks will carry. So we think it's very important to save the tick for future testing or if you start to get a rash to know what's in that tick to get it tested right away.

  • 12:21:58

    NNAMDIMike.

  • 12:21:59

    RAUPPYeah. There are also tick testing services, now. There's a laboratory. You can find these online, simply Google up tick testing services. The last tick I had actually had a different kind of Borrelia. I was traveling out of country. Within a week I sent it off this laboratory and found out that this particular tick had tested positive for a different kind of Borrelia. So I was able to start a course of treatment before I traveled abroad where I would not have been able to receive that treatment. So perhaps our other guests could weigh in on what they think of this, but for me I thought this was a pretty good safeguard to prevent some further problem down the road.

  • 12:22:42

    AUCOTTIt's a challenge to identify what's included in the gut of a tick in that there are so many potential pathogens. And there are some labs that do a broad spectrum analysis. But I don't often recommend -- I think looking at the tick and identifying risk for exposure to Borrelia is important. Another comment that I wanted to make in relation to treatment is that if a tick in engorged -- there are two schools of thought in relation to how to manage this exposure. One school of thought is if you've had a tick bite that two doses of doxycycline should be adequate. Another school of thought to which I adhere is that that is probably inadequate. And a study that was used to provide that recommendation was profoundly flawed on a number of levels.

  • 12:23:41

    AUCOTTAnd if an individual is exposed to a tick for an unknown period of time, the tick is engorged, then I would frankly in an attempt to prevent what we've already heard characterizes what could be a fairly serious condition a three week course of an antibiotic to prevent that from happening.

  • 12:24:02

    NNAMDIHere is Pamela in Fauquier County. Pamela, your turn.

  • 12:24:07

    PAMELAYeah, my tick was found through a whole body search. My husband found it on my lower back on a Saturday. Sunday I got the big bullseye. And Monday I got 30 days of doxycycline. I was still sick that summer and because there is no immunity from this disease we purchased clothing with Permethrin, treated clothing. So that anytime we're out in the yard working we are protected from ticks. And finally we are a first world country, why aren't we doing more to eradicate this?

  • 12:24:50

    NNAMDIWhy aren't we doing more, John Aucott?

  • 12:24:54

    AUCOTTThere's a lot to do. Actually, the Health and Human Services just had a tick-borne disease working group report issued last year, and they found that there's a lot we need to do. It spans the spectrum from prevention, which we've already talked about, but it also goes into the area of better diagnostic tests, and actually clinical research. One of the callers mentioned, you know, the treatment that she went through. And there's been very little research on optimal treatment regimens for people that continue to have chronic symptoms after their initial antibiotics.

  • 12:25:22

    AUCOTTSo, there's a lot we need to do, and it really needs to be a national effort. So, I agree with the caller. This is really an insidious epidemic that really demands an aggressive and national response now.

  • 12:25:34

    NNAMDIHere is Bridgett in Washington, DC. Bridgett, your turn.

  • 12:25:38

    BRIDGETTHi. So, I'm a forester, and I don't necessarily interact with ticks just because of recreation. It's first and foremost my job, and I found a number of ticks. It's actually kind of funny. I'll bring the ticks home, and they'll end up on my dog. But when I took my dog to the vet, I found there was, like, a vaccine that I could get for Lyme disease. And I have heard of some (unintelligible) big deal in the forestry community about vaccines. Is there any sort of research as far as preventative clinical, you know, science that's been done?

  • 12:26:17

    NNAMDIGlad you brought that up, Bridgett, because Joanna also emails: my dog is vaccinated against Lyme. Will there be one for humans? John Aucott, there is a Lyme vaccine for dogs and other animals, but not for people, though there was one on the market for a short time in the 1990s. How far off are we from a vaccine for human use?

  • 12:26:36

    AUCOTTSo, actually, there is a new vaccine in stage two trials that's been fast-tracked by the FDA. So, there is a push to get a new vaccine approved, as quickly as possible. So, that is another bright spot on the horizon.

  • 12:26:52

    NNAMDIMike Raupp, Lyme treatment is controversial, with a split between people who think that it's a chronic disease that should be treated with a long course of antibiotics, versus people who think it is not chronic and can be treated with a much shorter round. What's at the root of this debate, and how have you approached Lyme treatment in your own life?

  • 12:27:07

    RAUPPOh, boy. (laugh) Now, that's a very difficult question. I'm not sure I'm the right guy to answer that one, Kojo. But on the occasions that I've had an exposure, I fortunately presented with a rash, and was on, as Sam has said, a long course of doxycycline treatment. So, I had no further problems with this. However, most of my family is in New Jersey. Almost every family member that I know has had Lyme disease. In some cases, this was a misdiagnosis even though the rash, the swelling, the body aches, the fever were presented.

  • 12:27:48

    RAUPPAnd my brother has permanent Bell's Palsy now. Another brother-in-law was similarly exposed and treated. And fortunately, this particular neurological sequela or symptom has disappeared. So, you know, I think this is a very difficult situation. And as the gentlemen have said, I think they're probably better prepared to talk about the difference between the short-term treatment and the long-term exposures. But as I understand, there's a fairly considerable debate that once this has taken place, that some of the extreme measures that are taken may simply not be effective.

  • 12:28:30

    NNAMDIWell, John Aucott, Lyme, when caught early, is usually apparently relatively easy to treat with antibiotics. But it becomes harder to treat, the longer the bacteria is in the body. Why is that?

  • 12:28:41

    AUCOTTWell, first let me say, even with ideal diagnosis and treatment, we've done studies at the Johns Hopkins Lyme Center. Even with early diagnosis, up to 10 percent of people will have lingering, persistent symptoms. But that gets worse the longer the infection is, probably because the bacteria moves out of the skin and into those distant sites, like the neurologic system. And there, the bacteria is evolved in a way to evade the immune system's ability to eradicate it, and so the bacterial hides in those tissues and causes ongoing inflammation. And that's what generates the symptoms. But once it gets in that niche, it kind of is evolved in a way that it's hard to get rid of.

  • 12:29:18

    NNAMDISam Shor, you've been treating Lyme patients for a long time. What kinds of treatments do you prescribe for your patients?

  • 12:29:23

    SHORWell, and that's a very good question, and people have to be individualized. I did want -- before I answer that question directly -- is to emphasize that there are large numbers of individuals who never identify the tick, who never get a bullseye rash, who develop low-grade symptoms at the beginning, and then the symptoms evolve. In fact, I published a paper several years ago that the majority of my chronic fatigue syndrome patients actually have Lyme disease.

  • 12:29:51

    SHORIn relation to treatment, the vast majority of folks are going to require antimicrobials. The question is: what agents, and for how long? And it, in large part, is going to depend upon what I believe is going on because Monte alluded to this concept of co-infections, where there are very often other pathogens that are introduced at the time of the original tick bite that can augment the clinical presentation and make more challenging the treatment of those individuals.

  • 12:30:24

    NNAMDIMonte Skall, your organization, NatCapLyme, has been working on legislation in Maryland and Virginia that makes it easier for doctors to treat patients with long-term doses of antibiotics. Why has this been a priority for you, and why aren't physicians always free to prescribe the medication that they feel is best for their patients?

  • 12:30:41

    SKALLWell, let me go back and answer a question that you asked before. This is probably the most controversial disease I've ever experienced in my lifetime, and I'm 75 years old. The controversy exists over how you diagnose it and how you treat it. There's two standards of care: long-term care and short-term care. Just to show you how bad it got, there was an antitrust lawsuit that was taken out by Attorney General Blumenthal up in Connecticut against the Infectious Disease Society of America.

  • 12:31:15

    SKALLToday -- that was what year? What years, Sam, was that?

  • 12:31:19

    SHORTen, 15 years ago, I think.

  • 12:31:21

    SKALLYeah, it's quite some time ago, but things are still controversial. And patients are caught in between this crossfire, between these two medical societies over the standard of care and diagnosis. So, it's really a hard situation, and I can speak from the standpoint of a patient and an advocate, not from a doctor or a researcher. And this is why you hear from so many people calling in that they're still sick, because they can't get the kind of treatment or attention that they need with this disease.

  • 12:31:58

    NNAMDIAnd you're right, a lot of people are calling in. If you have called, stay on the line. If you can't get through, then send us a Tweet @kojoshow, or email to kojo@wamu.org. How has Lyme affected your life? You can also go to our website kojoshow.org and join the conversation there. I'm Kojo Nnamdi.

  • 12:32:36

    NNAMDIWelcome back. Washington, it turns out, is an epicenter of Lyme disease, and we're talking about how it is discovered, how it is diagnosed and how it is treated. Let's go to Dave, on the eastern shore of Virginia. Dave, you're on the air. Go ahead, please.

  • 12:32:51

    DAVEHello, Kojo. Thanks for taking my call, and thank you for the subject and your wonderful guests. Yeah, I had the bullseye, but it didn't show up where the tick had bitten me. And I'm on my, I don't know, 21 or 30 days of the Amoxicillin. And I heard one of your guests talk about memory loss. Is that a side effect?

  • 12:33:14

    NNAMDIJohn Aucott?

  • 12:33:16

    AUCOTTSo, people frequently report cognitive symptoms, like short-term memory loss and difficult multitasking, and I don't think that's a side effect of the medicine. I think that's part of the Lyme disease. It has a predisposition for causing those kind of memory problems. It can do that in the acute phase, and also in the chronic phase. So, that's one of the recognizable symptoms. Again, these symptoms aren't specific to Lyme disease. You know, it has to be put in the context of the risk for Lyme disease, but it is one of the symptoms of Lyme disease.

  • 12:33:46

    NNAMDIYou and your colleagues at Johns Hopkins have been studying something called post-treatment Lyme syndrome. What is that, and how far along are doctors in understanding it?

  • 12:33:55

    AUCOTTSo, that's a research-based definition that tries to capture a very well-defined, specifically-defined group of patients in the broader umbrella group of chronic Lyme disease. The problem with chronic Lyme disease is it doesn't amend itself well to research, because there's no molecular marker that definitely says you have active infection. So, we've created, along with other researchers, a research-based definition to study patients that go on to develop these chronic symptoms after initial treatment.

  • 12:34:25

    AUCOTTAnd we've been doing this now for eight years, and that's the basis of a lot of the research for better diagnostic tests. The blood samples from those patients are what diagnostic testing companies use to develop new tests. And it's also helped, you know, elucidate the whole history of how many people go on to develop chronic symptoms. So, it's about 10 percent in our studies. And those are the people that we can define really well for research purposes.

  • 12:34:50

    NNAMDIHere is Peter in Washington, DC. Peter, your turn.

  • 12:34:54

    PETERHello. Thank you, Kojo. I wanted to address the problem of what to do when you discover the tick is on you and has gotten his head under your skin. For me this goes back to Boy Scout days, and to my father who was an experienced woodsman. There is a wrong way and a right way to deal with a tick who has embedded itself in you. The wrong way, dangerous wrong way is to pull it out. Some people recommend even using tweezers to do that. The danger is that the tick's head can easily break off under your skin, and then you are stuck with the carrier of whatever infection there may be.

  • 12:35:51

    NNAMDIWhat's the right way?

  • 12:35:52

    PETERThe right way is a drop of gasoline or paint thinner or other disagreeable organic solvent. A drop of it on the tick will invariably cause the tick to back out. It wants to get away from that.

  • 12:36:12

    NNAMDIWell, let's see how your Boy Scout and your father's teachings work out in today's world. Mike Raupp?

  • 12:36:17

    RAUPPWell, and, again, I think I'm going to differ on this one, Kojo. I think probably the best recommended way to do this, actually, is probably with forceps. And there are also very clever little tick removal devices now, which I've seen to be quite effective. My own personal experience with imbedded ticks is -- I’m going to mess this thing up. Maybe about 10 percent of the time, the mouth parts will remain imbedded, but, however, once you have removed that tick, you've also removed the salivary glands. So, there's no further transmission. So, those mouth parts that may be left behind in your skin are not what we're worried about here.

  • 12:37:00

    RAUPPAnd you don't have to dig those out with a scalpel or a Boy Scout knife. You can simply put some antibiotic, some Neosporin on that wound and just let that take care of itself. So, again, that's how I weigh in on this, and I think things like -- I've heard hold a hot match to their rear end. Now, that's a good way to burn yourself. Use Vaseline. Again, you certainly don't want to kill that tick while it's imbedded, but I'll let Monte weigh in, too.

  • 12:37:31

    SKALLWe have -- you know, sometimes ticks get so imbedded that you can't get long-tipped tweezers underneath them. So, we've got a method. It's up on our website, actually, under tick removal. It's calls the blister method. And you have to go to a walk-in clinic to have this done. But if that tick is so imbedded, you can take a hypodermic needle with a little bit of water or lidocaine, and put it right underneath the tick. And what happens, a blister of that water or lidocaine forms, and it pushes the tick up. And the tick comes out within a minute or two perfect, in perfect shape for testing, or just as alive as can be. And you've gotten every part of that tick out.

  • 12:38:15

    NNAMDII'm not doing that myself. I'm going to a clinic to get that done. (laugh) How about this one? Sigrid emails: and I have heard that if you put your clothing you have worn outside in the dryer for 20 minutes, that the heat will kill any ticks that might have attached to your clothes. Is this accurate?

  • 12:38:30

    RAUPPI think this is one of the recommendations. If you think you've been in a place or you know you've been in a place where there's an exposure, the first thing you're going to do when you get home, strip down and go ahead -- you don't have to put them in the laundry first. You can put them right into the washer, spin that on a medium heat cycle for, again, I've seen ten minutes, but I’m going to go 20 or 25, and this will kill the active stage of the tick. So this is where you go, then you can launder your clothes. And I think this is a good recommendation, as well.

  • 12:39:01

    NNAMDIHere's Julie, in Montgomery County. Julie, your turn.

  • 12:39:06

    JULIEHi. So, I'm wondering, if you didn't see a tick, but you have some of the symptoms, how long is too late to seek treatment, if it's been five months, six months since you first started getting symptoms? Is it too late? And is it dangerous to get the treatment if you're not certain that you have Lyme disease?

  • 12:39:32

    NNAMDIThis is Sam Shor.

  • 12:39:33

    SHORYes. To begin with, there's no absolute number. It depends upon the organism, the individual's genetic makeup, the co-infections, etcetera. I've actually treated people who have been ill for years and gotten them better. The issue is going to a clinician who has an open mind to consider that as a diagnosis. And, interestingly, in relation to management strategies, it was alluded to the fact that it's important to see if an individual responds to clinical intervention. And that is an important clinical vignette.

  • 12:40:12

    SHORHowever, it's not only improvement in symptoms, but there's also a concept called a Herxheimer response, which is an inflammatory immune -- robust immune response that actually occurs in, I would argue, the majority of my patients who have had the illness for a while and are introduced to antibiotics such that they actually have a brief worsening of their symptoms, and then, subsequently, an improvement. And that's an important pearl.

  • 12:40:43

    NNAMDIJohn Aucott.

  • 12:40:45

    AUCOTTAnd I would add, I mean, I really look forward to the day where we have a molecular blood test. I mean, in other diseases, if you have prostate cancer and your PSA's high and you get treated, your PSA better be low, right. It acts as a prognostic, test of cure. We don't have that for Lyme disease. And so I really look forward to the day where a lot of this guesswork is replaced by diagnostic blood tests that are both diagnostic and prognostic, and also tell you what type of therapy would be indicated.

  • 12:41:14

    AUCOTTYou know, the evolution of personalized medicine is that we really want to move towards knowing exactly what the right treatment would be, based on the molecular mechanism of the patient's illness, and to be able to follow a blood test for test of cure.

  • 12:41:28

    NNAMDIWe got an email from Jeffery, who says: our family in Central Maryland have met a Lyme diagnosis headwind. A major local hospital system in the area denied my son treatment for Lyme, because he did not meet the extremely conservative CDC guidelines for diagnosis. He wound up having to be diagnosed and treated in another state.

  • 12:41:47

    SHORThe issue with the CDC criteria -- and the CDC actually emphasizes this -- that they have criteria for population epidemiologic studies. And they defer, to the point of care, an individual clinician to make their decision as to what diagnosis may be appropriate, and not necessarily require CDC criteria for that diagnosis.

  • 12:42:13

    NNAMDISpeaking of the CDC, that's what Clay in Sharpsburg, Maryland wants to talk about. Clay, you're on the air. Go ahead, please.

  • 12:42:20

    CLAYGreat. I was hoping you would bring me on there. (laugh) So, yeah, I fall exactly into this situation. I contracted Lyme disease three years ago, three springs ago, and the symptoms came on first. And I kind of self-diagnosed and thought, this sounds like Lyme disease. Went in and was tested with the ELISA. The test came back negative. And then, fortunately, a week later, I found the EM rash on my back. So, I went back in and they said, oh, yeah, you've definitely got it.

  • 12:42:57

    CLAYRan the doxycycline for 30 days. That did not resolve it, so I've been dealing with chronic Lyme for roughly the past three years. So, my question is, I guess, the ELISA measures a real specific range of strains, and is the CDC looking at opening up that range to the outliers?

  • 12:43:23

    NNAMDIDo you know, John Aucott?

  • 12:43:24

    AUCOTTSo, you know, the CDC actually recommends against doing the ELISA test if you have the rash, because it takes several weeks for those antibodies to form. So, we don't want to rely on the antibody response in the first few weeks of infection. The diagnosis there was the rash, and it takes weeks for the antibodies to form. They are based around North American strains, but the real question is, it doesn't act as a test of cure. So, once you've had the initial therapy following the titer of the ELISA does not tell you whether you're better or not. That's really the flaw, here. We need a test that tells you when you've received adequate therapy. And that is not done by the ELISA test. And the antibody test does not tell you when you're cured.

  • 12:44:05

    NNAMDIMonte Skall, what kind of support groups are there in this region for people dealing with Lyme?

  • 12:44:10

    SKALLWell, we're located right here in Washington, DC, at Sibley Memorial Hospital. That's Johns Hopkins, just down the road. We meet there on the first Sunday of usually every month of the year. We've been there for 18 years, offering support and education. We're also chaptered throughout Virginia and in Maryland, in Annapolis and up in Hartford County in Bellaire, Maryland. We're also in North Carolina. So, we do offer a full range of support group meetings in the metropolitan area.

  • 12:44:46

    NNAMDIMichael Raupp, what advice do you have for people who want to enjoy the outdoors, but also want to prevent being bitten by a tick?

  • 12:44:54

    RAUPPWell, by all means, you should go outdoors. We know there's many therapeutic and emotional and physiological benefits from being outside, so I get outside whenever I can. I think what it hinges on here, Kojo, are three things. Number one, try to avoid that tick bite in the first place. When you're out for a hike, stay in the middle of the trail, okay. Your ticks are not going to be found in that mulch trail or on a gravel bed. They're not going to be there.

  • 12:45:19

    RAUPPIf you are going to go in the weeds, if you're going to go wild in the wild, (laugh) then wear permethrin-treated clothing. You can use DEET as a very effective tick repellent. You can put that on exposed skin. That's one of the things I do, wear the permethrin-treated clothing. This is an excellent way to do this. When you get in, again, avoid that tick that might move off your head or off your clothing. Put those clothes in there. Inspect your dogs, your pets, and get those ticks out of the way in the first place.

  • 12:45:49

    RAUPPAll right. So, avoid being bitten, be aware of your surroundings, do the inspection. We've covered that already. Get that tick off within the first 24 hours. These are the things I think you can do to prevent.

  • 12:46:00

    NNAMDIWe only have about a minute left, but you mentioned the lone star earlier, and that's what Laura in Arlington wants to talk about. Laura, as I said, we only have about a minute so go ahead, please.

  • 12:46:09

    LAURAHi, Kojo. Thank you so much for this show. I think it's very important to also understand that with the lone star tick being more and more prevalent, we have to be aware that those symptoms can be similar, and also very quick. I was bit by the lone star tick in May of 2017. I believe I found it almost immediately, because I had noticed something crawling, and I was wearing shorts. And it had already imbedded in my skin. I was at work. I got help, and we pulled it out, but by the next morning at 9:00 a.m., I was feeling ill. I went to the clinic at work, but they were unfortunately closed for an emergency.

  • 12:46:46

    LAURAI than had tried Teladoc. They got me a prescription but only for a small amount of doxycycline. By this time I had a bullseye. I had the tick, I got it tested. It was confirmed for lone star. I then went to urgent care on Saturday morning and they doubled the dose of doxycycline...

  • 12:47:04

    NNAMDI(overlapping) How did it all end up? We only have about ten seconds.

  • 12:47:07

    LAURAI was very lucky. The doctor knew what to do, and she gave me six weeks of doxycycline. I got better, but I got the allergy to meat, and that's not confirmed. It's really hard to recognize. Thank you.

  • 12:47:14

    NNAMDIOkay. The lone star tick. We talked about it earlier, and I'm afraid -- thank you very much, but that's about all the time we have. Dr. Samuel Shor, thank you so much for joining us.

  • 12:47:25

    SHORThank you.

  • 12:47:25

    NNAMDIDr. John Aucott, thank you for joining us. Michael Raupp, always a pleasure. Monte Skall, thank you for joining us. That's it for today's show. This show about Lyme disease was produce by Mark Gunnery. Coming up tomorrow, we'll have special programming to mark the holiday. Tune in at noon to hear a special episode of American Anthem from NPR's Arts Desk, hosted by Elizabeth Blair and Tom Cole.

  • 12:47:45

    NNAMDIWe'll be back on Friday, with a look at how the 4th of July celebrations and protests unfolded in the District, as well as an insider's guide to the Capital Fringe Festival, which kicks off its 15th year this weekend. Hoping that you have a wonderful Independence Day, no matter how or where you choose to celebrate, and thank you for listening. I'm Kojo Nnamdi.

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