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Ticks, Myths, and Staying Safe

• Skip Clark

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SPEAKER_01:

And here we go. Welcome to the Inner Harbor Cast. I'm Skip Clark, and today we're talking about something that affects more people than you might realize Lyme disease and other tick-borne illnesses. Joining me is Royal. Oh, did I screw that up already?

SPEAKER_00:

No, Royale.

SPEAKER_01:

Okay, I'm gonna do it again. I'm gonna start over again. Okay, here we go. Coming to you in three, two, one. Good morning, and welcome to the Inner Harbor Cast. I'm Skip Clark. I am your host, and today we're talking about something that affects more people than you might realize Lyme disease and other tick-borne illnesses. And joining me is Royale Skideri, who is the executive director of the CNY Lyme and Tick-borne Disease Alliance. And Royale and her team are working hard to raise awareness, share prevention tips, and support those living with these diseases right here in central New York. It's time to jump in and learn how we all can uh stay a little bit safer outdoors. And Royelle, thank you so much for coming in this morning. It's good to see you.

SPEAKER_00:

Thank you. Thank you for having me.

SPEAKER_01:

Well, right off the top, we're gonna jump right in. How serious is Lyme disease and other tick-borne illnesses right here in central New York?

SPEAKER_00:

It is extremely serious, and it's uh a rising crisis um in our minds. We've actually just recently looked at the new statistics that came out in 2023. Statistics are behind, um, but they were up about 500 percent just in the three counties we cover here in Madison, Onadaga, Oswego um county. Um, and so it's some of that is the tick population continues to increase every year. Some of it is people are going to the doctor more, that's a wonderful thing, and some of it is doctors are reporting more, but there's there's no way to get around it. Ticks are here to stay.

SPEAKER_01:

Yeah, and there's a whole lot, you know. You we talk about ticks, I think about the deer population because they are uh um as much as they're beautiful, and for a lot of different reasons, uh ticks are known to travel with deer as well as up there.

SPEAKER_00:

And um mice, especially mice. Um deer are the big animals, and so they they're sort of like the taxis, right? So that's how the the ticks get from one neighborhood to the next, one community to the next, cities, and then the mice are just like the little messengers that go, they're in everybody's yard, right? They're in everybody's house. That's how they get to areas where maybe you are in the city and you don't see that many deer, but you have mice.

SPEAKER_01:

Yeah, they get through those little, little, little, little cracks that you wouldn't even imagine that they could fit through. I don't been there, been there. Uh, you know, a lot of people still think that the tick situation is just a rural problem, but that obviously that's not the case. Can you set that record straight? Or are they just as common in our neighborhoods and parks?

SPEAKER_00:

Yes, um, that is one of the top myths, actually. Ticks are in the country, in the suburbs, in the city, they are everywhere unless you're on pavement. They're in your backyard, they're in the lawn, they're at the park, they do not need to be in the woods, tall grass, sure. There's probably a higher population there, but anywhere there's not pavement.

SPEAKER_01:

It's funny. This conversation came up in my house just the other day. We have we have a yellow lab, and uh we were talking about pets, and somebody said, You don't have to worry because if your pets are protected, everything is fine. That's a myth as well.

SPEAKER_00:

It is. Uh, we also have a labradoodle. Oh, okay. Um, and he has this cerresto collar, uh, but we still have to check him for ticks every time before we bring him in the house. We still find ticks on him. Um, so I I and and honestly, ticks are or dogs, especially cats do, but dogs especially are just one of the main ways ticks get in your house.

SPEAKER_01:

How would we um I know you're not a vet, but still, as a dog owner, you as a dog owner, how would we know if a tech a tick had gotten under the fur into the skin? Would we see that?

SPEAKER_00:

It depends upon the length of the fur and the color. So um our dog, Charlie, is an apricot color, so he has very light um yellow labs, right? So I think, and there you can visually see, and what we do is we sort of like run our hands up up the legs, along the body, and are kind of you're kind of like moving the hair fur so that you can like see underneath it. I think if you have like we used to have a black lab, that's harder. I think that's harder, and you have to be even more, you really do have to kind of lift up the fur and look underneath it. Yeah, gotcha.

SPEAKER_01:

So what would it be like a discoloration? And would you feel like a little bit of a bump?

SPEAKER_00:

If it's embedded, so if it's uh sometimes if if the tick's just on there but it hasn't embedded yet, you can see it moving. Sometimes that's helpful. The movement can be a clue.

SPEAKER_01:

Do you need like a magnifying glass?

SPEAKER_00:

Or yeah, you know what I'm saying? Because they're so tiny. I would especially in because of the life cycle in the spring when they're the really teeny tiny, yes, I would break out that magnifying glass, and then if it has bitten and and it's in there, then yes, often we in fact Charlie had one a couple years ago and we had to remove it, and it did, it felt like a little lump on the outside, like a scab kind of yes. And my husband was just petting him and he said, What is this? And I had to come over and look, and it was a tick, and we removed it.

SPEAKER_01:

And by removing it, I know we're gonna get into the rest of this in a minute about the vaccine prevention and this and that, but by removing it, you have to take a pair of tweezers and pull it out and make sure you get the whole thing.

SPEAKER_00:

Yeah, I am the best again, it's just really the same thing for pets or humans, it's the same sort of procedure for removing it. You want the pointed tweezers, you want to get it as close to the skin as possible, and then pull straight up, not in an angle, but straight up very gently and very firmly, so that you can hopefully get the tick to release its mouth and you can get the whole thing. But if if some of the parts break off, don't worry about it. Don't don't don't don't be digging around.

SPEAKER_01:

It's not like the tick's gonna regrow.

SPEAKER_00:

We have people asking about that. Do not okay, do not be digging around there, you know.

SPEAKER_01:

Get what you can get.

SPEAKER_00:

Your body will expel it and call your vet, or if it's a human, call your doctor.

SPEAKER_01:

There you go.

SPEAKER_00:

Yeah.

SPEAKER_01:

Oh, okay. Now, uh, prevention. There's no vaccine.

SPEAKER_00:

There is no vaccine. They are working on it. Um, phase three trials have been very uh successful. Um, we're expecting them to go into Pfizer and Velneva, are the partners. We're expecting them to go into FDA approval process next year. Hopefully, this might be um commercially available in 2027. So we're still a couple years off. Okay. The process is long. So right now there is no vaccine for humans. So prevention is so key.

SPEAKER_01:

So, what's the best way that we as humans can prevent this?

SPEAKER_00:

Um, I'd say my number one is be aware, just know whenever you're stepping outside, you're at risk and assess your risk, right? The the where you are and what you can do. And then when it's possible, wear long pants, long sleeves in the summer. Sometimes you can't wear tick repellent.

SPEAKER_01:

Um mosquito repellent, yes.

SPEAKER_00:

That would that work for ticks? Yeah, okay.

SPEAKER_01:

You have off like I think most of us do have somewhere in the city.

SPEAKER_00:

Yeah, exactly. Right. Picaradin, those sorts of things. So, yeah, pretty much if it works, we have the same thing and we use it for mosquitoes and ticks. So I spray, um, and then they have a permethrin, which is just for clothing. Okay. So I do both. So, and with the permethrin, I spray like my sneakers, my jeans, my hat, my those sorts of things. And those you don't have to spray every time, but then you'd spray the the other, like D on your body, the exposed areas, and and that's really helpful. And then I'd say the the most important step is the tick check. When you come back in the house, do the tick check, you know, take a shower or put your clothes in the dryer, but really do a very thorough tick check, have somebody else look in your hair or on your back places you can't see, but that's the best strategy.

SPEAKER_01:

So if you're into camping, you're like the outdoors, you you camp several weeks at a time during the summer, you go to these wooded areas. Everybody that does that should be doing this, yes, because you never know.

SPEAKER_00:

Absolutely, and that's prime. That is definitely a what I will say, a high tick risk um behavior. I do I hike, I walk the dog, I garden, all of those things put me at risk. Yep, so yes, I would be constantly thinking about this and checking all of that.

SPEAKER_01:

And constantly check in those cases go to take a shower, exactly, right, exactly. They get up under the pants.

SPEAKER_00:

I imagine they get under the shirts, they do, and they crawl, they don't drop, they don't hop, but they crawl. Yeah, it is creepy.

SPEAKER_01:

It is, I can't even imagine something like that crawling. Uh, so what are some of the common mistakes that people make when trying to protect themselves? Uh just not putting the stuff on and saying, Oh, it's not gonna happen to me, or you know, I'm not worried about it where I camp, it's it's pretty clean, it's pretty cool. I you could probably go to the best campground around and still have that risk of getting.

SPEAKER_00:

Yes, you do. You're outside, right? They're there. And I I think some of the it's it's mostly that people just don't take the risk seriously, don't think that they're at risk, or think that they'll see it. Well, they're teeny tiny, especially at certain times of year, so you are probably not going to see it. Uh, I think that's it. Then I think the other thing is, you know, if you do think you've been bitten or you have a ticket, you should definitely call your doctor.

SPEAKER_01:

I was gonna ask. Don't wait. Don't wait, don't wait.

SPEAKER_00:

You're gonna be able to do that. That was one of my questions.

SPEAKER_01:

How soon should you call your doctor? How do you tell the difference though between a mosquito bite and a spider bite? And then you get a tick.

SPEAKER_00:

Um, well, the tick bite usually doesn't have that sort of uh like redness and the little bump, but the the bump part that's more mosquito flea, spider. Um, sometimes, but usually you don't want to do that because you'll break it off, right? But see, ticks have something. I'm not a biologist, but they have some kind of compound that basically they inject to make you not feel the bite, so you're less likely to get itching like you would with a mosquito bite because of that. I don't know what it's called, but I know it exists.

SPEAKER_01:

I did not know that.

SPEAKER_00:

Yes, and that's that's why most people don't you can't feel the ticket.

SPEAKER_01:

So if you're itching, chances are it's not a tick. Well, I mean, I mean I don't rule that out.

SPEAKER_00:

But right, but yeah, that that's not you know, because you get bit by a mosquito, so you're kind of exactly right. I think you're more looking for um, I mean, a lot of people don't get the rash. So I'm just um that's another myth. People think they gotta have a bullseye rash. Oh gosh, and frankly, most of the rashes do not look like a bullseye. That's very frustrating. It's okay, it's just not gonna look like that, like you'd see in the picture. Sure, it's not that convenient, but um a lot of people think if they don't get the rash, they're safe, and that's just not true. Only about half of people get a rash. I didn't get a rash, I didn't see the tip, I didn't get a rash. Yeah, so so one, if you think you've been bitten, it could be any kind of rash, it could just look like regular dermatitis, like you've got a just a that kind of an irritation. Um or it could be nothing, but you have the symptoms. Um, so so that's another thing, is I we tell people if you've been bitten, if you saw the tick, if you think you've been bitten, or even if you've just been outside and you've had exposure, if you are a camper, let's say, but when you come home, you should be watching for symptoms for a month.

SPEAKER_01:

Wow, it takes that long.

SPEAKER_00:

Yeah, it really can. I mean, some people get symptoms right away, but you should really be on the lookout.

SPEAKER_01:

So you've been through this. So, what are some of the symptoms?

SPEAKER_00:

It's in the early stages, it's generally more like flu-like. You're kind of achy, achy, you have maybe maybe a little fever, maybe a headache, maybe maybe some, I wouldn't say joint pain, but maybe just achiness. I did not get that. Some people do. Okay, I really didn't, which is what did you get? I didn't, which which is why if I if I did, I mean again, it's been 15 years, but if it was minimal, if I got the acute symptoms, I just thought it was a summer virus. I just thought, oh, it's a it's a little bug, and I didn't go to the doctor, I didn't do anything about it. But then I just started getting the later symptoms, the fatigue, the joint pain, the confusion, um, the mood disturbances, all of that just got worse. And I went from doctor to doctor to doctor, nobody knew what was wrong. I'm this healthy 40-something, all of a sudden I couldn't hardly speak, I couldn't get out of bed. I was just terrible. Really? Yeah, it was awful.

SPEAKER_01:

I had no idea. Yeah, and that's why that's why we're doing this this morning is to talk about this. It's something we all need to be aware of. Yes, uh, because uh when you least expect it, you could be in the cleanest of homes, you could be in the cleanest of neighborhoods, you could be, it doesn't matter, right? They travel when you know we all have well, I shouldn't say we all, but most of us have pets, so yes, that's one thing we have to uh uh keep an eye out for. Um, so you went to the doctors, and finally, let me just let me ask you this if it went untreated, what would happen?

SPEAKER_00:

Um, you move through stages, what they call early disseminated, later disseminated. Basically, it just gets worse and worse because it then gets into your other bodily systems, rather. So it moves into where you'll get the Lyme arthritis, um, and your knees will swell, or you'll just I had I just had arthritis everywhere. All of my joints were painful and swollen. And it for some people it can go into your heart and you have lime carditis.

SPEAKER_01:

Oh wow.

SPEAKER_00:

Um, for some people it's neurological. That happened with me, where I had uh mental health challenges, mood disturbances, memory issues, cognition problems, where I just couldn't think very well, and so it was definitely in my brain. Everybody's different, but it just sort of those symptoms get worse and worse, and it doesn't get better without treatment.

SPEAKER_01:

Oh wow. So when you talk about the heart issue, what what happens to your heart? Does it swell? What do you know what could happen? I know that's not what you had, but I'm sure being who you are and what you're directing, and we're getting the word out about Lyme disease and tick bites and all that, what could happen?

SPEAKER_00:

Um, I mean, I don't know the biological specifics of it, but I just know that it does cause like an irritation and inflammation swelling in your heart. Um, I think maybe something to do with the heart lining. But it's sort of like if you're I mean, obviously, whenever you feel like you're having heart pain, heart discomfort, you should go to the doctor. But absolutely, if you're not, if you don't have the other sort of underlying heart disease conditions or symptoms, then you should look at could it be Lyme disease? Um, for example, you know, we talked about my educator who's 26, who had this in his presentation at 18 with Lyme carditis. Well, if if an 18-year-old young man goes to the emergency room with chest pains and heart problems with no underlying symptoms, you need to be looking for something other than heart disease. Um, and so it's kind of that. Like, don't dismiss it.

SPEAKER_01:

Certainly so how did they diagnose it though? I mean, was it a blood test? How did they finally go, okay, Royale, here's here's what you have?

SPEAKER_00:

I actually somebody finally said, Let's test for it, and I was positive. The tests are not always accurate, they're not.

SPEAKER_01:

You know, you take a chance, you hope it's correct, but I mean, we have a two-tiered test.

SPEAKER_00:

It's a little better, but it's pretty much the same test I took 15 years ago. It's it's pretty much the same test we've been doing for 30, 40 years. It is not accurate at all in the beginning because it is an antibody test. It is looking for antibodies, not the bacteria, right? Okay, so therefore, it takes three to four weeks. So if you are bitten and you go to the doctor and they do the test, it's gonna be negative. So if they rely on that, then they're gonna say you don't have Lyme disease. So we always tell people call your doctor, make sure you you tell them when you were bitten, how long the tick was attached, was it engorged, all this stuff, take out your symptoms. But then they should give you antibiotics preventatively, especially if the tick was engorged. And then you should go back a month later, and then they should do the test, and it's likely to be positive.

SPEAKER_01:

Gotcha. Yeah, gotcha. Wow. One other uh, it's all about you know, ticks and lung disease, and it's so important that we get this message out. Uh, talking with Royal Scaderi, the executive director. Uh, what other diseases uh do ticks carry?

SPEAKER_00:

Uh well, they carry a lot, I think almost 20 in this country. Yeah, it's a lot, and we're finding more all the time. But in this area, the most prevalent ones are anaplasmosis and Babesia. Those are both tick-borne diseases. Uh, our doctors and scientists are seeing them much more commonly now. They used to be kind of rare here in central New York, but they're very common now. Their symptoms are sort of similar, but I'd say more acute in that you'd have a higher fever, a more severe headache. You'd have sometimes nausea, vomiting, appetite changes. So it's a little bit more aggressive in the beginning, the acute symptoms. Uh, both of those can be treated with medication, but it's important that your doctor looks for those two. And then I'll say we just had our summit and we brought in speakers, experts, tick experts from all over the country. And one of the things they're concerned about is the lone start tick, which is a different tick from the black-legged tick that we generally have here. Okay, it is prevalent already and has been for a while in Long Island and Hudson Valley. It is coming, and that is the tick that you hear about the red meat allergy, the alpha gas allergy. Yes, and so that's a concern. It is coming. Okay, and so they are very concerned about the range it's spreading. This tick is much more mobile and it spreads faster, and it's and it's honestly a little more uh aggressive, so it is something that we also need to be looking for in the next few years. We're going to start seeing more of the Alpha Gal allergy and uh the lone star tick here.

SPEAKER_01:

They're all dangerous.

SPEAKER_00:

They're all dangerous, they all have different diseases or different reactions, but they're all dangerous.

SPEAKER_01:

Downplay it. Absolutely not, you know. Um, it's a beautiful fall day and cooler weather, we got the leaves falling, leaves on the ground. Ticks still active when it gets this cold?

SPEAKER_00:

Ticks are active. Actually, they are especially active now. They're in another season. Um, and they're a little bigger, so they might be a little easier to see, but they're very active. And and I'm so sad to say this, but the leaves are a dangerous place.

SPEAKER_01:

I was gonna ask. So if uh you have a child that goes jumping in their pile of leaves, uh yeah, that's the hardest activity.

SPEAKER_00:

Yeah, I they they hide under the leaves, it's one of their favorite places to hide. So I sadly don't do that anymore. We don't let the grandkids jump in the leaves because it's a we've all done it though.

SPEAKER_01:

I know growing up, we all did it. My kids did it, my grandkids do it.

SPEAKER_00:

It's a fun thing to do in the fall, but now you just have to know that there is possibly lots of ticks hiding in there.

SPEAKER_01:

Is there anything that we should tell families that are getting ready for the winter season to raking their lawns or just tell them maybe tell the kids don't play in the leaves?

SPEAKER_00:

Yeah, uh honestly, yes. Really don't play in the leaves, don't play in the leaves, and also I think just remember, I think again, that's another big myth. We talked about myths, right? That there are spring and summer, but ticks are active all year round, even in the winter. So don't think that you're safe, like all year round, especially now. Last winter was a tough winter. We had a lot of snow, the ground was covered most of the time. So that was a lower risk, but it's still there, it's still there.

SPEAKER_01:

They are still carrying they're hiding underneath the snow.

SPEAKER_00:

So if you get a day, I'm out walking the dog, and you get a day where you can see the grass, yep, you are at risk. The ticks are there and they do not hibernate, they just hide under the snow and wait for you to come by.

SPEAKER_01:

Wow, some great info. Uh, for those already affected by Lyme or other tick-borne diseases, what kind of support do you offer?

SPEAKER_00:

Well, we have a support group that was a request by patients that there it was a gap in this area. So we have a monthly support group, second Wednesday of the month, uh, six o'clock at the James will do it library. There's also a Zoom link they can look at our website.

SPEAKER_01:

Okay.

SPEAKER_00:

Um, and also we have uh actually just revamped our website this year, and we have a whole bunch of resources on the website for prevention. If you've been bitten, if you didn't get better, like those different categories. So I would recommend that. And also maybe sign up for our email newsletter or social follow us on social media because we're always posting news and developments and tips out that way too.

SPEAKER_01:

Are there local groups, online resources, or medical networks that you'd recommend?

SPEAKER_00:

Oh, that's a very good question.

SPEAKER_01:

Maybe they're on the website. Maybe if they they look at your website, which is what's the web address?

SPEAKER_00:

Um www.cnylimealliance.org.

SPEAKER_01:

It's that easy. Limealliance.org is what you need to remember. And I'm sure you're gonna see a lot of that great info on there. What do you wish more people understood about uh living with these uh diseases?

SPEAKER_00:

Um I I think I wish people understood that the chances of recovering completely are better if you're diagnosed early. And don't give up hope. Even if you're one of the 20% that doesn't get completely better, there is some hope. I'm 15 years in and I didn't think I would ever get better, but I did very slowly. I did. So I there is hope.

SPEAKER_01:

Is it fully gone from you, or is it always like it's there, but it's not active and it's under control, and you can go on with life as normal?

SPEAKER_00:

I it I I think it depends. Some people actually have a persistent infection, and in that case, the bacteria is still there. Most of us just had damage from our immune system or the arthritis or that sort of a thing. So I had that like post-treatment damage that took a very long time for my body to recover.

SPEAKER_01:

Gotcha. And finally, as we we've been chatting with Royel Skuderi, the executive director. Uh, finally, if someone listening uh today wants to get involved or help spread awareness, how can they do that?

SPEAKER_00:

Um, I'd say again, go to our website.

SPEAKER_01:

Okay.

SPEAKER_00:

And there are our email addresses there. Certainly reach out. Uh, people can donate. We're always um raising money to pay for our education um and our programs and resources. And we have volunteers if somebody wants to help us work events. That's a big help.

SPEAKER_01:

And uh, do we have any events coming up that we should know about or what's listed on the website? We can go there and look at that as well.

SPEAKER_00:

I mean, most of those are in social media. I know we have this time of year, we have some indoor sort of fairs and festivals, that sort of a thing. Yeah, that will have tabling events at those.

SPEAKER_01:

God, I love that. We've been chatting with Rael Skideri, executive director of the CNY Lime and Tickborne Disease Alliance. Uh, some great information. Well, I tell every time I do these interviews, I learn something. And so it's very educational, not only for me, but hopefully for you as well as you watch this, as you listen to this. Uh, just want to say thank you for taking the time out of your busy day to come by the Inter Harbor Studios. And uh, you know, anything we can do to help out, help get the word out as we're doing right now. I'm more than happy to do that. It's Royale Skidari, executive director again of the CNY Lime and Tickborne Disease Alliance. Thank you for being here this morning. Thank you for having me.

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