Dr. Ron Falk speaks with Dr. Ross Boyce, an Associate Professor of Medicine and Epidemiology, and his wife who was recently bitten by the Lone Star tick, retired nephrologist Dr. Katherine Huffman-Falk
Their conversation explores the patients experience with ehrlichiosis, and the providers approach to recognizing and treating the disease.
00;00;00;08 – 00;00;25;14
Kathy Falk
In the middle of the night. I got up to go to the bathroom and I felt myself fall towards the right. I thought perhaps I was just sound asleep, and I slipped back into bed. And then when I woke up at 630 in the morning, I could not sit up to save my life. No matter how I position myself.
00;00;25;16 – 00;01;20;15
Ron Falk
Hello and welcome to season two of the Chair’s Corner from the Department of Medicine at the University of North Carolina, Chapel Hill. I am Doctor Ron Falk, host of this podcast, where we’re dedicated to empowering patients like you with knowledge about your condition, enhancing your quality of life every step of the way, each and every day. Welcome back to the show.
Today we’re joined by two very special guests in what promises to be a fascinating conversation. First, we have Doctor Ross Boyce, who is an international expert in infectious disease and specifically has an interest in expertise in what are known as tick borne diseases. These are diseases which are more and more common in our area of the United States, in North Carolina and across the southeast.
So welcome, Doctor Boyce.
00;01;20;18 – 00;01;21;20
Dr. Boyce
Thank you for having me.
00;01;21;22 – 00;01;46;21
Ron Falk
My second guest is Doctor Katherine Huffman Falk. Yup. You heard that correctly. The fourth part for not only is Katherine a retired nephrologist, she’s also my spouse. And she is the individual who developed the tick borne disease that we’re going to learn much more about. Doctor Hoffman, welcome.
00;01;46;23 – 00;01;47;27
Kathy Falk
Thank you.
00;01;47;29 – 00;02;01;06
Ron Falk
Kathy, let’s walk through your experience having an encounter with what was a beautiful Lone Star tick. Tell us what you recall about finding this tick on you.
00;02;01;09 – 00;02;44;09
Kathy Falk
On April 29th, I took a nap on a couch that my dog occasionally sneaks onto. And, I felt something stick me in the back like a stick, like a pinprick or something. But I thought it was a piece of a brush, and I didn’t think any more about it until 10 p.m. that night when taking a shower, I felt this, what I thought was a large, was dime sized for sure, tick that was firmly attached over my back over the lumbar sacral spine area. At which point, I needed help to remove it.
00;02;44;11 – 00;02;58;06
Ron Falk
Doctor Boyce, we’re going to start with some basics. What is a tick borne disease and what kind of diseases come with, ticks that we have in North Carolina?
00;02;58;09 – 00;03;20;29
Dr. Boyce
Well, thank you for that question. I would start by saying a tick borne disease is just like it sounds. It’s something that you get from a tick bite. And that’s because the tick is harboring the bacteria or virus in it. And it transmits it to you when it bites you through its biting parts, its mouth parts. Not all ticks are created the same, 95% of ticks in this area.
00;03;20;29 – 00;03;33;26
Dr. Boyce
The central part of the state that people pull off of them are going to be one star ticks. But we do also have dog ticks and deer ticks. And there’s a new one that’s come into town called the Gulf Coast Tick.
00;03;33;29 – 00;03;38;13
Ron Falk
How can I figure out one from the other? Is it impossible to do so?
00;03;38;15 – 00;03;51;06
Dr. Boyce
I think for most folks, unless it is a female lone star tick, an adult female lone star tick, and it has that white spot on its back. Most folks can’t tell them apart. Can’t even tell them from chiggers or sometimes other bugs.
00;03;51;08 – 00;04;08;07
Ron Falk
So then Kathy, there you are with this tick, and you summon your husband, who comes in and with a pair of tweezers, tries to extricate said tick and thinks he’s done a great job. And that what happens next?
00;04;08;11 – 00;04;33;22
Kathy
I, took a picture of it because I’d only seen Lone Star ticks in pictures, and it was clearly a Lone Star tick, and it was bigger than any tick I had seen. And I notified my physicians that I had been bitten and was instructed to observe for symptoms and for 8 to 9 days I had zero symptoms. I felt perfectly fine.
00;04;33;24 – 00;04;44;05
Ron Falk
So, Ross, tell us then about the Lone Star tick versus deer ticks and generally what is carried by one versus the other.
00;04;44;07 – 00;05;31;00
Dr. Boyce
So the lone star tick is our main vector. That’s what we say. It’s the one that transmits or ehrlichiosis. It can also transmit some viruses that are relatively uncommon but are more we’re discovering that more and more this are things like bourbon virus and heartland virus and outside of my area of expertise. But they’re also thought to be the main vector of the red meat allergy, also known as alpha gal. In contrast, deer ticks, which are also called black legged ticks, are the main vectors of the things that we traditionally think about being up in the northeastern region. So that’s Lyme disease, babesosis, anaplasmosis. But the ticks are not interchangeable. They all can’t carry the same disease as each one carries a different sort of grouping of diseases.
00;05;31;02 – 00;05;36;11
Ron Falk
So we hear about Rocky Mountain spotted fever coming from a tick. Which tick does that come from?
00;05;36;13 – 00;06;00;06
Dr. Boyce
So it’s really complex because Rocky Mountain Spotted Fever is part of a broader group of bacteria called rickettsia. The one that is responsible for really severe disease is called Rickettsia. Rickettsia and is transmitted by the dog tick. There’s some other ones that are less severe that the lone star tick can transmit, but that gets really into the weeds on some of these different bacterial species.
00;06;00;09 – 00;06;09;22
Ron Falk
And if you find a tick, what are the chances that the Lone Star tick is going to carry a nasty bug?
00;06;09;25 – 00;06;30;14
Dr. Boyce
We have collected and ground up and tested some of the ticks that we get from this area. In regards to erlichia, it’s probably anywhere from 5 to 10% of the ticks are actually infected, but that doesn’t mean that 5 or 10 ticks are going to infect you. A tick has to be attached to you for a number of hours to transmit that.
00;06;30;16 – 00;06;37;06
Dr. Boyce
So if you get that tick off pretty quickly, the odds of it actually transmitting the bacteria to you is relatively low.
00;06;37;08 – 00;06;44;11
Ron Falk
Kathy. Eight days later, you suddenly start feeling what? What do you feel.
00;06;44;19 – 00;07;20;18
Kathy Falk
In the middle of the night? I got up to go to the bathroom and I felt myself fall towards the right. And I couldn’t believe it. I thought perhaps I was just sound asleep, and I slipped back into bed. And then when I woke up at 630 in the morning, I could not sit up to save my life, no matter how I position myself. And the ceiling was spinning and I was nauseated. You had to help me set up. And then, I vomited.
00;07;20;20 – 00;07;40;17
Ron Falk
And that was due, we found out, due to something called an inflammation of my cranial nerve that was inflamed, this possibility of having any kind of tick borne disease causing a neurologic event of any kind. How common is that?
00;07;40;19 – 00;07;54;28
Dr. Boyce
It’s pretty well described with the Lyme disease, I think with or like. Yes, it is not as well described. But if you look at the reports in the literature, it’s anywhere from 10 to 20% of cases have some neurological involvement.
00;07;55;01 – 00;07;59;01
Ron Falk
Yeah, I think at that point you did not have a temperature.
00;07;59;03 – 00;08;17;03
Kathy Falk
I never had a fever. But I felt flu -like, other than having nausea, vomiting and diarrhea. I really could not do anything that day. And I kept thinking it was something I ate, but there was no explanation.
00;08;17;03 – 00;08;18;10
Ron Falk
Did you have a headache with it?
00;08;18;17 – 00;08;25;13
Kathy Falk
I certainly did, I had a specific headache on the right. On the right side.
00;08;25;15 – 00;08;31;29
Ron Falk
So this feeling of a flu like illness and headaches. Well, just how does that fit?
00;08;32;05 – 00;08;37;06
Dr. Boyce
Perfectly. Because, right, with my experience of what I see in patients with their ehrlichiosis.
00;08;37;09 – 00;08;43;21
Ron Falk
Describe more those symptoms that you see in the in your clinic of other kinds of patients.
00;08;43;24 – 00;09;39;28
Dr. Boyce
Sure. So it’s important to realize ,and your history is almost textbook, that there’s what’s called an incubation period. And that’s the time between when the tick bites you and infects you with the bacteria and the onset of symptoms. And that tends to be anywhere from 3 to 14 days. So you’re right smack in the middle of that. And what people tell me, they tend to experience is fatigue, flu like symptoms, headaches.I hear people, frequently tell me that they have nausea, vomiting, occasionally diarrhea or other types of upset stomach symptoms. And about 20% of people have a rash. And this rash is not like Rocky Mountain spotted fever that we all get taught in medical school. That has the palms and soles, but it’s much more of a, sort of pink rash. And I most frequently see it across the chest in the back.
00;09;40;01 – 00;09;45;03
Ron Falk
So Ross, how often should you get a tick panel and what’s in a tick panel?
00;09;45;05 – 00;10;40;17
Dr. Boyce
So what we call a tick panel here at UNC consists of antibody based tests, generally for ehrlichiosis and the Rickettsia family, which causes Rocky Mountain spotted fever. You can add Lyme to that if you want. As far as when you should get it and how to use it, I think there’s a lot of confusion. It’s an antibody based test. It takes our body some time to develop an antibody in response to an infection, so you cannot use it. And I try to emphasize this a lot with physicians. You cannot use it in the acute period because it could be negative because you don’t have the disease or it could be negative because you just haven’t mounted a response yet. So it’s really to confirm a diagnosis and it requires a second test a few weeks later. If you think someone has it or has any tick borne disease, you really almost have to decide to treat before you get any test result back.
00;10;40;17 – 00;10;53;26
Ron Falk
So Kathy, that was what was initially done because the concern was that you had an allergy to one drug, which we’re going to talk more about doxycycline, and you were put on an alternative. You want to describe that, please?
00;10;54;06 – 00;11;40;01
Kathy Falk
I was initially put on azithromycin, which I took for a week, but did not get any better and was put on prednisone for the vestibular neuritis. And I still felt terrible. And the tick panel came back, showing Alicea and I was instructed to start Doctor Cycling. I regret very much that I had put docs cycling as an allergy on my chart, and that was based on, an experience 30 years ago where I felt like it got stuck in my esophagus, which is, a well known phenomenon, but not an allergy.
00;11;40;03 – 00;11;44;24
Ron Falk
So once you started doxycycline how quickly did you feel better?
00;11;45;08 – 00;12;04;12
Kathy Falk
Within 24 to 48 hours, I felt that I could think again. I didn’t need ondansetron, which is for nausea. I felt like I could walk. I felt just a remarkable, remarkable improvement.
00;12;04;15 – 00;12;13;05
Ron Falk
So, Ross, if you are going to treat, and, the antibiotic of choice is what it stops you cycling.
00;12;13;07 – 00;12;29;29
Dr. Boyce
It stops this cycle. And for almost all of the tick borne diseases, including Lyme disease, there’s just a few exceptions. Like the busiest source. But otherwise, if you suspect that there is a tick borne disease and you feel that there’s enough evidence to treat, it should be doxycycline 100mg twice a day.
00;12;30;02 – 00;12;31;01
Ron Falk
For how long?
00;12;31;03 – 00;12;53;19
Dr. Boyce
So this is another area of I don’t want to say misinformation but maybe confusion. You really only need 3 to 5 days. It clears the bacteria very quickly from the bloodstream. So the recommendation from the CDC is 3 to 5 days after the fever ends. But not everyone has fevers. So generally I recommend 5 to 7 days in total.
00;12;53;21 – 00;12;58;03
Ron Falk
And you got better, Kathy, within a relatively short period of time.
00;12;58;05 – 00;13;01;11
Kathy Falk
I mean, a significant, improvement.
00;13;01;13 – 00;13;11;03
Ron Falk
So, Ross, help us understand. Kathy. Symptoms. You’re bitten. This bacteria are lucky. Osis in this case gets into the blood. Where does it go?
00;13;11;08 – 00;14;10;05
Dr. Boyce
Yeah, I think there’s a lot that we don’t know about. What’s called the pathogenesis or why the disease develops after the infection. We know that it infects the monocytes, which are one of the white blood cells. And that’s why it’s traditional or full name is human monoacidic ehrlichiosis. But it doesn’t cause direct damage to the body in the way that rickettsia does. So Rocky mountain spotted fever causes so much damage because it invades your blood vessels and destroys them, and you end up just leaking out of your blood vessels or leaky hoses. Doesn’t do that. But I think it’s actually, if you asked me kind of, why is this happening? It’s because it triggers a really robust immune response that is almost in the same way that some of what the damage Covid does is our own body kind of getting inflamed and reacting to the infection. And I think that’s why we see some of these nervous symptoms. 20 to 30% of patients with ehrlichiosis are ultimately admitted to the hospital.
00;14;10;07 – 00;14;23;16
Ron Falk
So if you’re bitten by a tick and you see this Lone Star tick and you’re not sure whether it really latched on or not, when are you, Ross Boyce, going to start your doxycycline?
00;14;23;18 – 00;15;48;22
Dr. Boyce
Yeah, that’s a really hard question. And I get asked that quite a bit. So unlike Lyme disease. So in the northeast they’re recommendations that if you are bitten by a deer tick and it’s attached to you for a certain amount of time, you can do what’s called post-exposure prophylaxis, and you get 200mg of doxycycline that you take once immediately after the tick bite to prevent the disease from developing. The CDC actively recommends against that for ehrlichiosis and Rocky Mountain spotted fever, because there’s a fear that they’ll be more severe rebound disease that’s based on a 45 year old guinea pig study. I don’t think that that is valid, and I think it needs to be explored. However, it is the current guidance. And so I don’t just throw post-exposure prophylaxis at anyone who’s had a tick bite. Part of that is because, as I said, 5-10% of ticks are actually infected with ehrliciahia. So the odds are in your favor. But you do need to keep a close eye on yourself. And as soon as you develop any symptoms and it can’t just be fever. So the CDC recently took fever out of the case classification the criteria because a lot of people don’t have fever when they get her work uses. But as soon as you start feeling unwell, as soon as something is not right and people generally know their own bodies, I would say get the doxycycline started.
00;15;48;24 – 00;16;01;20
Ron Falk
So Kathy, you ended up taking doxycycline .Once you started it, you took your five-ish days, and yet even a week or 2 or 3 later, how do you feel?
00;16;01;23 – 00;16;45;24
Kathy Falk
After the doxycycline? Really? Within 48 hours, there was a sense of relief of the weight, of the fatigue. But the fatigue is not like I think I’ll close my eyes. It is a two hour nap kind of fatigue. And it has. That part has gone away completely. I feel more and more like myself. The lingering, the two lingering symptoms are some fatigue, although it’s so much less. That’s hardly worth mentioning. Vertigo is still a problem when I am fully supine, so I have to sleep with the head of bed at 5 to 10 degrees and get up slowly.
00;16;45;26 – 00;16;56;11
Ron Falk
So, Ross, how common is this? Almost post infectious fatigue? I’m still not feeling up to snuff.
00;16;56;14 – 00;18;05;27
Dr. Boyce
So if you read the textbooks on this, they’ll say it doesn’t exist. It’s not not a thing. There’s a little bit of data around Rocky Mountain spotted fever, largely from people who had very severe disease were in the ICU. But for anyone who’s been in the ICU, you can imagine there’s probably some period of recovery. As I’ve gotten into this more and seen more and more patients, I would say that I started to recognize a pattern, and we did a cohort study where we enrolled people who had been tested for tick borne disease, and then we followed them. So we followed some who ultimately ended up having the disease and some who ultimately did not. And about 20% of those who had a confirmed ehrlichiosis in our cohort were still reporting some moderate or severe symptoms 90 days after the infection. And I’ll say that we only added those questions about 30, 60 and 90 day symptoms somewhat on a whim. It’s just because we didn’t really think we would find anything. But as I’ve seen both in my research and clinical practice, this is just more and more common. And I see it all the time now.
00;18;05;28 – 00;18;08;02
Ron Falk
It’s almost like a post Covid kind of.
00;18;08;02 – 00;18;28;19
Dr. Boyce
Exactly. And that’s a good way to explain it to people, to let them know that the infection itself is gone. There’s no reason to think the bacteria is hanging around in our body. You don’t need more antibiotics. But for some reason, whether it’s because our immune system is ramped up or there’s some persistent antigen in the body, we just don’t feel right.
00;18;28;22 – 00;19;12;22
Ron Falk
If you’re bitten by a tick and you’ve seen the tick and you’ve had somebody take it off of you, that’s one thing. But if you’re starting to develop these kinds of symptoms that you’ve described, the tendency is going to be, well, I’ve caught another viral bug that’s running around. It’s the spring, summertime. And oh, it’s my turn to get a virus from my child. But yet it could in fact be if you’re tired, if you have a headache, if you have a fever or any of these neurological symptoms, it could have been from a tick that you just didn’t know better. You, because some of these ticks, I guess, are really small. If you think they’re a size of a grain of sand, when do you test those people?
00;19;12;24 – 00;20;02;14
Dr. Boyce
Yeah. So that’s a really good question because less than half of people with a confirmed tick borne disease ever find a tick. And that’s because as you say, ticks can be small. But ticks have also evolved to go to places on our bodies where they will not be found. That can be our armpits, behind our knees, hairlines. And so certainly when we’re asking patients, did you find a tick? If the answer is no, it is not a rule out. It should certainly remain in your differential when you’re thinking about what could be causing these symptoms. And the other thing that can really guide that is what time of year is it. Now our tick season here in Central North Carolina keeps getting longer and longer. I would say it probably runs from March to October right now.
00;20;02;17 – 00;20;06;27
Ron Falk
And then do you all order those antibody tests, that tick panel?
00;20;06;29 – 00;20;23;24
Dr. Boyce
Right. So not, and the same thing if there’s a knowledge or a common wisdom about ticks that you get them when you are out hunting or you are camping deep in the woods, about 40% of people that I’ve seen got it in their backyard.
00;20;24;01 – 00;20;25;12
Ron Falk
Or on the couch.
00;20;25;15 – 00;21;17;28
Dr. Boyce
Or on the couch. And this can be gardening ticks. There’s certain ticks that like to attach to birds. So if you have bird feeders tick and just drop off right underneath the bird feeder, those deer that come through your backyard, if you’ve got dogs, even if they’re on preventative medicine, they can still act as a transport or a highway for that tick to get from the backwoods into your yard, into your house, under the couch. And so my advice is, if it’s the right time of year and the symptoms are broadly consistent, you should really think about it. Now, as I mentioned, the tick panel itself is not useful in that acute setting. I order it because you need the first one in order to utilize the second one. But when it comes to making a decision about treatment, you got to pull the trigger or not, based on your suspicion of the symptoms and how sick the patient is.
00;21;18;00 – 00;21;39;05
Ron Falk
Kathy, let’s talk about that drug allergy. But because that’s really common to list medicines as an allergy, because on the electronic medical record, there’s no way of really describing drug toxicity. It’s always put in as an allergy, but it’s not really an allergy. It’s that you have symptoms when you take the drug.
00;21;39;11 – 00;22;10;20
Kathy Falk
This has caused me to revisit my chart and to remove any drug that is listed as an allergy that really is not an allergy, but had associated adverse effects. And so I think there is a message for every one of us to be cautious about listing something as an allergy, because then the prescribing physician is going to naturally avoid those drugs.
00;22;10;23 – 00;23;00;14
Ron Falk
Yeah, it’s something that all of us have to have to worry about. So, Ross, let me ask you a research question. If you Google ehrlichiosis, the things that come up ehrlichiosis in dogs or ehrlichiosis and other animals. The amount of information, about ehrlichiosis in humans is really difficult to find. And as you point out the understanding of the, disease course, even from the CDC seems limited at best. How are you trying to reshape that, understanding of what this disease is, how common it is, and how we can appreciate and study it better?
00;23;00;16 – 00;24;35;03
Dr. Boyce
Well, thanks for that question. I generally consider ehrlichiosis really a neglected tropical disease. If this was in Panama, we would call it a neglected tropical disease. But it’s not. It was actually discovered in Arkansas on an Army base, Fort Chaffee, which is why it’s called Ehrlichia chaffeensis ,And that happened in the mid 1990s when a bunch of soldiers on weekend drill got fevers. But since then, if you ask me, how much progress have we made? I would say very little. One limitation of that is the antibody based test that I mentioned. It’s really hard to identify someone who has ehrlichiosis quickly if you rely on an antibody based test. Not to make it too confusing, but there are a number of different ehrlicia species, some of which infect humans, some of which infect dogs, some of which infect cows. There are at least three that infect humans and cause human disease. We can’t tell them apart because they all cross react on the test, so I don’t know whether someone who gets neurological symptoms is getting it because they got e Ehrlichia chaffeensis versus Ehrlichia ewingii. So that’s a real big research gap. Are there specific clinical syndromes associated with the different species of or look here. What is the distribution of these different Alicea species? We don’t really know that we have found or require a wing. I here in North Carolina we found two offenses depending on where you go might be more of one than the other.
00;24;35;05 – 00;24;38;18
Ron Falk
And wouldn’t it be nice if there was a rapid diagnostic test?
00;24;38;20 – 00;24;43;16
Dr. Boyce
I’ll put in a little plug for. We do have in ehrlicihia PCR here at UNC that,
00;24;43;22 – 00;24;45;24
Ron Falk
Polymerase chain reaction.
00;24;45;26 – 00;25;41;21
Dr. Boyce
Right. A molecular test that Melissa Miller here at UNC developed. Again it’s not perfect. It, still takes a little bit of time to come back, but instead of waiting for that second test, which is four weeks later, maybe you wait 3 or 4 days. I think they’re actually better than that. So that that is one thing. But again, depending on which one you have, it can either be chaffeensis specific or pan-ehrliciahia. So you don’t always get the information. The other thing I’m really pushing is what we talked about earlier, which is this question of symptom persistence and trying to understand why that happens and what we can do about it, I think, is the more important part. Right now, I’m largely just following treatment guidelines for long Covid or chronic fatigue, but maybe there needs to be something specific for this. And I think we have a long way to go there.
00;25;41;24 – 00;25;52;27
Ron Falk
Last question. I’m going out in the yard. I’m going to go muck around with the dog. How do I prevent myself from getting this in the first place?
00;25;52;29 – 00;25;55;04
Dr. Boyce
Yeah, we really don’t know how to control ticks.
00;25;55;04 – 00;26;01;21
Ron Falk
So I can spray myself with one insecticide spray after the other. It’s not going to stop it.
00;26;01;24 – 00;26;29;17
Dr. Boyce
I have three kids. They are ten, eight and seven. They go in the backyard. I do not get permethrin or Deet on them every time. As you might imagine, they get out the door before I could do that, or they’re not at home. Whatever it may be, I recognize it’s hard. The only data on tick control that has really been effective is from controlled burns from military bases. And obviously most people don’t want to light their whole backyard on fire every couple of years.
00;26;29;19 – 00;26;30;22
Ron Falk
Probably not.
00;26;30;24 – 00;27;15;10
Dr. Boyce
There are things you can do. Ticks do not like to be dried out. If your grass is mowed back, they don’t like to be in those areas. They like leaf litter. They like to be under bushes where it’s shady. And so we think that that barrier where the grass meets the natural area, where the grass meets that beautiful forest area behind your house, is probably the high risk zone. We don’t have data, but if I was to spray a certain area, I would do kind of a meter right at that edge. I would keep my bushes and shrubs trimmed back along that perimeter and then with the little ones, if you have little ones when it’s bath time, give them a full body check every once in a while just to make sure there’s not something you’re missing.
00;27;15;12 – 00;27;36;12
Ron Falk
Doctor Boyce, Doctor Katherine Huffman-Falk, thank you so much for helping us understand this complex, and as you point out, really under-recognized illness. Kathy, thank you for sharing your experience. We’re so glad you’re feeling better. I am most particularly glad you’re feeling better. Thanks for joining this podcast.
00;27;36;19 – 00;27;39;26
Kathy Falk
Thanks to all the listeners. I hope that you learned something.
00;27;39;29 – 00;27;42;24
Dr. Boyce
Thanks for having me. It was a pleasure to be here.
00;27;42;27 – 00;27;55;28
Ron Falk
Remember, you are not alone on your health journey. Stay informed, stay proactive and together as a community, we can make a positive difference in managing your health and well-being. Thanks so much for joining us. Take care.