The Deeper Dig is a weekly podcast from the VTDigger newsroom. Listen below, and subscribe on Apple Podcasts, Google Play, Spotify or anywhere you listen to podcasts.
[R]esearchers say tick density in Vermont this year is going from bad to worse, potentially putting more people at risk for Lyme disease and other tick-borne illnesses.
Bill Landesman, a biologist at Green Mountain College, said he’s already counted a record number of ticks at one of seven sites he monitors. But an annual record doesn’t capture the long-term scope of the problem.
“Even our low years are high,” Landesman says. “To be honest with you, it’s all bad.”
That’s discouraging news for those concerned about Lyme and its related conditions. Vermont typically ranks in the top two for Lyme rates nationwide, and many patients describe struggling with the state’s medical establishment to get diagnosed and treated.
“For a long time, doctors were told, ‘it’s not real,’” says Rachel Nevitt, who had to travel to New York state to get treated for her symptoms. (Nevitt, who is married to Vermont Lt. Gov. David Zuckerman, advocated for a 2014 law that gave doctors more latitude in treating Lyme.)
The Centers for Disease Control are at odds with Lyme specialists over the standards for testing and treating the condition, leaving many patients who believe they have the disease to shop around for care.
“I feel like there are a lot of really well-meaning medical professionals who look to the people that are supposed to be setting the standards,” Nevitt said, “and they’re being misled.”
On this week’s podcast, Rachel Nevitt describes the long road to her diagnosis and the realities of living with Lyme. Bill Landesman discusses his research into Vermont’s tick populations. And VTDigger’s Ellie French recaps her reporting on the Lyme community.
[showhide type=”pressrelease” more_text=”Read full transcript” less_text=”Hide full transcript” hidden=”yes”]
Hi, is this Rachel?
Rachel Nevitt: This is.
Hi Rachel, it’s Mike from Digger. How are you?
Nevitt: Hi Mike from Digger. I’m fine. How are you?
This is Rachel Nevitt. She lives in Hinesburg and helps run an organic farm with her husband, David Zuckerman, who you might know as the Vermont lieutenant governor.
How are you feeling today?
Nevitt: For me, it’s not even a matter of today — it’s literally moment to moment, it can change drastically.
Rachel has Lyme disease. And she wants to use her experience to push for better medical research around tick-borne illnesses in Vermont.
Nevitt: I would say that I can literally feel my brain swelling and I start to lose function. My hands turn into, like, T-rex hands, they get all cramped up and pull in. I start to get really confused and lose my speech. Sometimes it happens faster than others. It can take up to an hour, or it can take five minutes before I’m paralyzed head to toe.
What do you do in that situation? How do you respond?
Nevitt: It all depends on the situation. When I used to do farmers’ markets more, I would just lay down on the grass and go out, and most people would just think I was asleep and walk over me.
When you say you go out, you mean you lose consciousness?
Nevitt: No, not right away. I just generally am trapped inside my body. I can’t open my eyes, I can’t speak, but I’m in there. And I’m aware of what’s going on to some extent, but it’s also very strange, like sounds move at strange speeds around me. It’s almost like sound is darting by really fast. Like a noise will go by really fast and then something else will go by really slowly. And so it’s very kind of confusing.
I usually lose consciousness, whether it’s sleep, or passing out, I don’t really know, or if it’s like some kind of seizure, I don’t know. But I usually lose consciousness at some point.
But there’s nothing you can do other than just kind of let it pass?
Nevitt: Yeah, and it does. Like the first few times it happened, we were terrified. You know, my husband carried me up to bed and left me there, completely unable to move and he thought, she’s gonna wake up in the morning and that’s it, she’s parylyzed head to toe. But I woke up and I was like, ‘I’m fine.’ He’s like, ‘you’re fine? You feel fine?’
Lyme disease and other tick borne illnesses have been on the rise in recent years. Researchers are saying 2019 could be one of the worst years on record for tick populations. And our state is uniquely at risk.
Ellie French: Vermont is second in the country right now for their Lyme disease rate, but a lot of years, it’s been number one.
Our reporter Ellie French has been looking at Lyme disease in Vermont.
French: It’s one of those things that it’s like, OK, well, Vermont has such a small population. Vermont can be number one in certain things because we’re just so small, but —
It’s not just a per-capita effect here, it seems like it’s a real trend.
French: It seems like it’s a real trend. Part of that is just the climate here is the climate that ticks really like. We’re still on the northern end of the kind of Lyme range — Lyme is from Lyme, Connecticut. It’s the town that it’s named for, where it started. But with the climate warming, that has been moving upward. So Southern Vermont right now is getting hit especially badly, but it’s moving further north every year. And then also just kind of the population of people who live in Vermont are outdoorsy, they are farmers and they go hiking. The people in Connecticut aren’t in the woods the same way that the people in Vermont are.
The researchers that you talked to, how do they track this kind of thing?
French: They’re really, really thorough with their research. They go to a few specific sites every year. And they track really methodically, just so that from year to year, those numbers are consistent. They just track these sites and see how many ticks they’re seeing. And then they test those ticks for Lyme, and there’s a whole slew of other tick-borne diseases that Vermonters are getting, and they just kind of see how those populations are changing and growing.
Bill Landesman: I have seven field sites where I’ve been monitoring population density for the past — this is my sixth year. So we’re building a long term data set on how the populations are changing over time and space.
Bill Landesman is a biology professor at Green Mountain College.
Landesman: I’m mostly interested in the nymphs, which are the second life stage, and they’re out. This is peak nymph activity. In fact, literally right now, you’re going to see between now and June 20th, you’re going to see the highest densities of the year. June is bad all around, but this stretch of days that we’re in now, this is like peak of the peak.
Bill’s research focuses on the microbial ecology of tick-borne diseases. That means he actually does DNA testing on tick samples to better understand how those diseases work. But in order to do that, he has to go collect the ticks from these sites.
Landesman: It’s very simple. Anyone can do it. We take a square piece of denim, white denim so that it’s easy to see the ticks. It’s a one meter by one meter square, and we drag this cloth on the forest floor over a measured distance. So we’ll lay out a measuring tape for 100 meters and drag the cloth across the measuring tape, and so that is 100 square meters of measurement. We stop every 20 meters to check the cloth and look for ticks, and we count them, and then store them for future, later analysis, so that you can determine the density of ticks. That’s the number of ticks per unit area, just by counting up the number of ticks you find on this measured distance.
So we’re not actually counting every tick in the forest, of course, but we know the density, and so we can extrapolate how many ticks might be in a given area. And more importantly, we can compare tick populations from site to site. We can use that density measurement number per unit area as a way to correctly compare different sites and also different time periods.
Got it. And I’ve kind of been hearing that this year is maybe a worse year for ticks than previous years. Is there validity to that?
Landesman: Oh yeah. My data is showing — I’m not done with the season, but I’m already seeing some of the highest numbers I’ve ever seen. This is my sixth year, I started in 2014, this is going to be the highest or second-highest year, I can already tell. Just yesterday I broke a record at one of my sites. I got the highest number of ticks I had ever received.
You know, by the way, when I say that it’s high, even our low years are high. OK? Last year it was the lowest year that I have in my six year data set, but there were still plenty of ticks out there. It’s still very, very serious. So it’s all it’s all relative. So to be honest with you, it’s all bad.
We’ve heard people with Lyme describe some really serious effects. Help me understand — how does a bite from a tiny insect like this lead to such drastic symptoms?
Landesman: Well, when we’re talking about Lyme disease, a certain percentage of ticks in this area are carrying a pathogen known as Borrelia burgdorferi. It is a bacteria, and that is the agent of Lyme disease. What happens is that if a tick is carrying Borrelia burgdorferi, during its blood meal, this bacterium in the tick will start to multiply to very large numbers, migrate to the salivary glands and into the mouth parts of the tick and then into its host, which could be an adult, a white-footed mouse, deer, lots of different animals, birds or humans. And so then this bacterium, when it enters a human, creates an inflammation response, and that is the illness.
There’s so many different ways that bacteria can affect human health. They multiply to enormous numbers, they can multiply very quickly. Their generation time can be hours to minutes. They can reach very high numbers and then they can release toxins. They can elicit a human response, and the inflammation is a human immune response, the human trying to get rid of this thing. But in the process, it makes people very sick.
Bill said changes to things like deer and mouse populations cause tick density to fluctuate from year to year. But long-term trends like human intervention and climate change, make the current levels a relatively recent phenomenon.
French: People have had Lyme disease in Vermont for decades, but 100 years ago, no, that wasn’t a problem. So it’s new-ish, but it’s also not going anywhere. There’s ways to treat Lyme and there’s ways to prevent exposure to ticks, but short of, you know, wiping out the tick population entirely, it’s one of those things that’s just around.
You talked to some people about dealing with tick-borne illnesses. What did you hear from them?
French: It’s hard because ticks are tiny when they’re nymphs. These smaller stages, until they’re adults, it can be really hard to see a tick on you. So it’s not like people are getting bitten by ticks and then later developing symptoms and thinking, oh, I might have Lyme. No one that I’ve talked to, almost no one, has said, I knew that it could be Lyme because I got bitten. No one knows they were bitten, because ticks are just — they’re so small. So really what it is, is people start getting the symptoms that are just unexplainable.
Lyme has this kind of one classic symptom, it’s a bullseye rash. That’s like the gold standard, you have a bullseye rash, you have Lyme disease.
That’s just what it sounds like? It’s a thing on your skin that looks like—
French: Like a bullseye, like the symbol for Target. But the problem is only like 70 or 80% of people with Lyme actually get a bullseye rash. So then there’s this still pretty huge chunk of people who never get that, but they’re getting dozens of other symptoms, and the symptoms can be really pretty bad. But it’s hard because they’re not getting diagnosed with Lyme right away.
Nevitt: I know one medical practitioner who says, when a farmer takes the time to come in during the season, you know something is wrong. Farmers just say, oh, I cut my arm off in a combine, oh well, I’ll stick it on with duct tape, then keep on going, right?
Rachel said the first time she showed symptoms, she thought it was exhaustion.
Nevitt: I was at a farmers’ market. And I went off to do something, probably to use a bathroom. And then I never showed up. And my husband was frantically looking for me at some point and found me on the grass at City Hall Park. And later on, it passed. So he was trying to get me to talk and trying to get me to whatever, and I couldn’t do anything. And later on, I just got up and I thought, ‘wow, I am really pushing it as a farmer.’ It was like, ‘Oh, my joints really hurt. So I must suddenly have aged’ or, ‘I’m a farmer, I abuse my body,’ or ‘I’m so exhausted, that I’m just doing too much. I’m trying to do too much. I didn’t get enough sleep.’ But stuff never really added up.
French: Lyme gets worse over time, untreated. It can manifest in all these ways: you might start out having some joint pain and then you can get these really intense neurological symptoms. You get forgetful, you forget things that you’ve always known, you just can’t function normally. In children, there’s these behavioral problems, they think that there’s, you know, all of these things might be wrong with you. You might sleep — I’ve talked to people who’ve been sleeping 20 hours a day because their Lyme is so bad.
It’s hard for them to get these things and think it’s Lyme because there’s so many things that aren’t how you think Lyme disease might be.
Those symptoms that you named are all things that could be associated with some other type of illness…
French: Yeah, there’s lots of illnesses or diseases that have really similar symptoms that also don’t have definitive tests, things like MS and ALS, and Alzheimer’s. There’s things that people get diagnosed with instead of Lyme because those things also don’t have definitive tests, just like Lyme isn’t always definitive with the testing. So it can be really hard, even once you’re getting tested for things and going to the doctor. You can just assume that you have something even if what you really have is Lyme.
What did these folks tell you about the process, for them, of eventually getting diagnosed and trying to treat their disease?
French: So that’s really kind of the crux of the story that I found was, these people are going in and they’re really struggling to get a Lyme diagnosis. Sometimes their friends, their family members are like ‘you have Lyme disease, like I’ve had Lyme or my brother’s had Lyme, or my kid has Lyme, like you have to get tested for Lyme,’ but then they’re going to the doctors in Vermont and they’re having a really hard time hearing that from a doctor. Even if later down the line they do find out that’s exactly what they have.
Nevitt: Ultimately, for me, if I did not have an employee who went to the Cape for a family vacation, and two weeks later got really sick — she tested positive and was feeling bad for a long time. But when she was well enough to come back to work, she said, ‘Rachel, you know those really strange things that have been going on for you for years? You know how you’re always like, I wonder if there’s…’ She’s like, ‘you have Lyme disease.’
So it was an employee who, having experienced Lyme disease, although acute early-onset, came in and said, you really got to consider this. And I thought, ‘I don’t have Lyme disease. Like, I don’t remember getting bitten by a tick. I never got a bullseye rash.’ I went through the normal denial that we’re all trained to go through: that Lyme is very easy to diagnose, and very obvious, when it is not at all.
French: There’s these whole two completely different schools of thought on Lyme. There’s one recognized by the CDC and the Infectious Disease Society of America. They test for Lyme a very specific way, and they have these standards for Lyme, and that’s what doctors are really used to looking to. Doctors always look to the CDC when they’re looking for symptoms and treatments and things for diseases. It’s the gold standard.
But then there’s the International Lyme and Associated Diseases Society, which is the group that’s been focusing specifically on Lyme, kind of saying ‘no, the CDC, they don’t really have this one right. Like, there’s these other tests that are better, they’re more specific and Lyme is a lot bigger and different of a problem than you guys maybe are realizing.’
Nevitt: I don’t know another medical condition that is going through this. Some of the more similar ones are like what happened with fibromyalgia, and chronic fatigue syndrome, where there were these conditions that for a long time, doctors were told, it’s not real. It’s a hypochondriacal condition, mostly that women have, because women aren’t taken seriously. And now those have been found to have scientific bases behind them.
That’s where the similarities end, because there’s so much research coming out of right now, out of Stanford, Johns Hopkins, Harvard, Columbia, Northeastern University, Duke University, how tick-borne diseases, Lyme in particular, can absolutely be chronic. The word being used is persistent. It’s a persistent bacteria that knows how to hide and evade antibiotic treatment. But for some reason, the medical community won’t go there. I feel like there are a lot of really well-meaning medical professionals who look to the people that are supposed to be setting the standards and telling them how to treat and diagnose diseases, and they’re being misled.
French: There’s a whole group of people who really, really buy into that, and that’s how they’ve gotten help. And that’s how they’ve gotten finally better from Lyme is using these other standards and going to doctors and naturopaths, that a lot of the times that are more tuned into Lyme specifically. But when you go to UVM Medical Center, or just any really primary care provider in Vermont, they’re more used to listening to the CDC and they might not be plugged into that.
You talked to some of those doctors who have a degree of skepticism about Lyme. What did they tell you?
French: They think that people who kind of focus on Lyme specifically and these other tests that the Lyme Disease Society really prefers, they think that those tests are giving false positives. They think that that’s dangerous as a practice. And they think that their tests — that are kind of slower, and you can’t quite get a diagnosis as fast, and you can’t start treatment as quickly, which can also be really dangerous — they’re saying they’re better and more accurate.
Gotcha. And so there’s this rift in the medical community right now. And that just leaves these patients kind of in limbo.
French: Yeah, these patients, a lot of them feel like they have to shop around to get treatment.
Nevitt: You have to do research and — thank god for Front Porch Forum. I just put out there, ‘I’m looking for a Lyme literate medical doctor in the state of Vermont.’ And luckily, there are other people in Hinesburg who’ve been through this. And they all let me know that there was one doctor who was treating who had disappeared from practice, because the medical boards were after him for treating Lyme disease.
French: I’ve talked to so many people that have either gone to these naturopaths or acupuncturists, or a lot of times, going out of state. People are going to New York, D.C., they’re going all over the place to find the treatment that works for their Lyme, because they’re feeling like their doctors in Vermont just aren’t listening to them.
Nevitt: I’ve been doing some herbal therapies. There’s a lot of things you can do holistically through diet, and I do a lot of those things. And basically, I’ve told myself, I’m going to wait in a holding pattern until we’re seeing research that’s actually moving this forward. So I’ve been hoping to not fall behind the progress I’ve made and to not get too sick and wait for them to figure some stuff out. And then to get back in there and try new treatments.
Where does that leave your average, everyday Vermonter who wants to go outside, enjoy the weather, enjoy the outdoors, but also doesn’t really want to enter this world where there’s some really challenging illnesses to deal with and a medical community that’s not quite clear on what to do about it?
French: Well, one thing about ticks is they have seasons where they’re high. It’s high right now because it’s nymph season. And then again later in the fall, it’ll be the adult season, so those are times to watch out for. But kind of in that middle of the summer, maybe later, July and August, the ticks really aren’t so bad. So that’s one highlight.
Also, there’s just a lot that you can do to prevent yourself from getting a tick bite. If you get a tick bite and the tick detaches within the first 24 hours, you’re usually set. You usually don’t really have a chance of getting Lyme. So if you can check for ticks after you go outside, if you get bitten, that’s not something to worry about. If you find it right away and if you take a shower that can get rid of all the ticks, put your clothes, even if they’re not wet, just in the dryer right after you get in from outside, that stops things. And you know, just normal stuff like wearing long pants, treating your stuff with tick repellent.
So there’s hope.
French: Yeah, it’s not this big boogey monster — but it is scary.
Okay. Thanks, Ellie.
French: Thank you.
[/showhide]
Subscribe to the Deeper Dig on Apple Podcasts, Google Play, or Spotify. Music by Blue Dot Sessions and Podington Bear.
