Episode 609: Ticking Point: Reece Robinson on Alpha-Gal Syndrome, Lone Star Ticks & a Growing Tick Crisis

Hey everybody. So, you know, we love to celebrate people in the Lyme community who are doing great things. And we're here today in person with Rhys, who's an Emmy Award-winning filmmaker who's now putting his talents towards building a documentary for Lyme disease, but not so much. He's focusing on alpha-gal and tick-borne illnesses and this rising problem across the globe. So Rhys, welcome to our Tick Boot Camp podcast.

Thanks, Matt. It's really good to be here.

So a lot of people always wonder, how did you get into this space? And I know that you are not a tick-borne disease patient. So can you share with our listeners by— start by telling our listeners how you got into this community and what put tick-borne illness on your radar?

Well, first I should say, how did I get into this space here? We just came from going out tick dragging where, you know, I'm wearing the garb. I've got permethrin head to toe. So we were just out in Rocky Point here in Long Island getting ticks. But how I got into the overall space of tick-borne illness, You know, my brother has had every single, the whole bingo card of tick-borne illness, especially chronic Lyme, and he lives year-round out in Martha's Vineyard, which is a big hotspot, especially long time for deer ticks, now for the Lone Star tick living there in the woods, and he has been— He's a warrior. severely affected, especially by the chronic Lyme, um, over the years. Uh, it's the kind of thing where, you know, you're not quite sure if he's ever fully kicked it, um, because Lyme can be that insidious. So I've long been familiar through his lens. Thankfully, uh, I have not, as far as I know, had a tick-borne illness. Uh, I'm one of those people that ticks don't seem to love me as much. Again, that would be a great scientific study of its own. But yeah, that's, that's, that was my introduction to the space and through my brother's eyes and seeing especially the Lone Star tick take hold of New England, especially Martha's Vineyard where I have a connection. I was like, I need to tell this story as the community there kind of got consumed by ticks. And here in Long Island, it's also a big issue.

So help us blend these 2 worlds. Better together because you have this natural God-given talent and your brother goes down this path of having a chronic tick-borne illness or several chronic tick-borne illnesses. So walk us through what young Reece's life was like watching his brother get sick as you were developing this talent and refining this talent that you now have to help our community.

Yeah, so my brother's actually about 9 years older than me, so it's not as if I was always right by his side watching him with Lyme, but it was a big part of my childhood for sure. Him getting the intravenous antibiotics, him getting Bell's palsy, and he was bedridden for like a full year around high school. And so that left an indelible impression. I am a documentary filmmaker. I make films about social issues primarily. And so again, this issue, you know, You know, why we're talking about the Lone Star tick and alpha-gal in particular is that Lyme is horrible. It's insidious. It's this slow-moving disease that kind of catches up to you slowly. And the Lone Star tick and alpha-gal have brought a lot of attention to ticks, which I think is a good thing because it's not good how dramatic it is. But yeah, alpha-gal, you can be bitten by a tick, 2 weeks later you're in a hospital with anaphylactic shock, not being able to breathe. Yeah.

I mean, in fact, I just had a friend yesterday here on Long Island send me a text message, another news article about alpha-gal and how it's on the rise here on Long Island. So this is definitely a growing problem in tandem to Lyme. But I want to better understand how it influenced you, your brother's experience. So how old were you? You said he was in high school when this occurred. So you were just what, elementary school, a 9-year difference?

Yeah, just about. I was pretty young.

Okay. When did he get a diagnosis? Was he sick for a lot of time before he got properly diagnosed? Walk us through his journey a little bit.

Yeah, I mean, it's the kind of thing where, again, the symptoms of Lyme disease, it's not so cut and dry, especially if you're a tough teenage kid that can push through things. And so it's unclear how long. Maybe he had it for many years before it finally brought him to his knees with you know, severe pain and Bell's palsy, memory issues, and just being in bed. So he could have had it since he was very young. I'm not sure.

So I know your brother now is in Martha's Vineyard and you're in New York City. Where were you when your brother got diagnosed with Lyme?

In New York, but I think he did get it out there in Massachusetts. He went to Early college out in Massachusetts, and so, um, Western Mass near the Berkshires. So he could have gotten that there or on Martha's Vineyard trips going there growing up. Um, yeah, I'm not quite sure, to be honest.

Okay.

Yeah.

What was his treatment protocol like? Because we know once you're chronic, it's not easy. So what was that like for your brother, and how was it for you to watch and observe him get a diagnosis, get treatment, and not have the immediate response that you all thought he would have?

So yeah, I mean, it was a year or two of heavy-duty antibiotics, and at various stages and times, he tried a lot of different alternative therapies too. You know, there was, I remember the Rife machine and these other kind of things, plenty of tinctures, and he's, for the most part, kicked it in a way that it doesn't affect him day to day. But, you know, I think part of it is still with him.

Are you comfortable sharing what doctor diagnosed your brother?

I don't know. I think it was probably— I don't think it was like a Lyme-specific doctor. I think it was just a, you know, general-purpose doctor. Yeah.

So he was one of the lucky ones to get diagnosed by a traditional doctor? Yeah.

Well, I think his symptoms were so dramatic at that point and like it was clear he had gotten a lot of tick bites. And so, yeah. Okay.

If you had to guess, looking back, what was the one treatment modality that worked best in your brother's healing journey?

I think when he took it upon himself to really acquaint himself with herbs and tinctures, things like cat's claw, Andrographis, cycling that with doxycycline, That seemed to really help him where he'd do like a month on doxy, a month on herbal remedies. Yeah.

We hear that a lot, the Buhner protocol, right? The standard herbs for Lyme and tick-borne illness coupled with antibiotics. And a lot of people are generally one side or the other, but oftentimes they can be worked well together. So it sounds like that's what your brother did as well. So seeing this through and now moving forward, you're now building a successful career in being a filmmaker. Your brother's doing better and now living out of Martha's Vineyard. When did you have the epiphany of, I want to use my talents to help this community that my brother was so impacted by?

So, yeah, I mean, I've had a long connection with Martha's Vineyard, and my brother is there in the woods. He does landscaping and brush cutting and lumber work, and there's a real salt-of-the-earth, working-class, year-round community there. And they're often the most affected by tick-borne illness, people that work outside on a day-to-day basis. But of course, the summer crowd that goes there, you know, the presidents and the celebrities that go there, that has definitely brought attention to ticks and Martha's Vineyard. And while it's not the hardest hit area in the country with ticks, you might think it reading all the headlines that have been coming out lately. So basically last summer, 2025, was the moment I was like, I have to make this film because every store, every— Yeah, there's the film right there, Ticking Point. Every grocery store, every cafe you walk in, people are talking about alpha-gal. And some people are talking about what they can eat, what they can't eat. Some people are talking about how they prevent against it. They talk about their bites. Ticks consumed the island summer of 2025. It reached a fever pitch. And I knew people who couldn't even have an Advil that had gelatin in it, or they would go into anaphylactic shock. And I was like, I have to make this film. There was also a New York Times article, Why Is Martha's Vineyard Going Vegan? And that was a big— made a big splash. And that was also a moment I'm like, I have a connection with the community here. I need to tell this story. And the reason the island is so interesting to follow is that there's an active effort underway to fight back against ticks and to actually do something. And because it's an island, there's an engaged community, and there's resources, they actually have a decent shot. So that's what the film follows in many ways.

So a lot of people hear Martha's Vineyard and they think this is the rich, the affluent, the presidents, the famous. But it sounds like this is a mixed community where there's working class, there's affluent communities, and they're blending together and they're all being impacted by the same thing to prove that these tick-borne illnesses and alpha-gal don't care who you are. They don't care if you're rich, they don't care if you're working class, and it's impacting everybody out there. Is that accurate?

Absolutely. And in many ways, the people that come in the summer that are terrified aren't as affected because they are scared to go in the grass. They take more precautions. But it has gotten so bad that just walking to your car, you know, this past May when it was peak, May and June, walking to the car, you would get a tick. God forbid you passed by a piece of, a blade of grass, you would get a tick, a Lone Star. And it got that bad, especially this summer. And so I think ahead, you know, how bad is it gonna get next summer?

What are your thoughts on the proximity of Martha's Vineyard? I mean, it's all relative, right? You have, it's close enough, I think, to Lyme, Connecticut. I'm horrible with geography, so you can tell me if I'm wrong. But I also think Plum Island's off to there. Martha's Vineyard's up a little bit, right? But do you think that that kind of hotspot pattern is just indicative of how it's just spreading from like this epicenter out? Or do you think that's a wrong approach to this?

So I think these coastal areas, if you look at hard-hit areas with ticks, they seem to like temperate weather. Coastal areas have super temperate weather. And also, of course, the deer populations. There's a huge deer population. out there, and so the combination of the temperate weather and the deer population created a lot of factors I think the ticks really love. I mean, Lyme has been a big problem. It's been a Lyme hotspot. I think it's the number one county, Dukes County is the number one county in Massachusetts, I believe, don't quote me, for Lyme disease in Massachusetts.

Yep.

So it's always been bad, but now the Lone Star seemingly leapfrogged from, southeastern states to Long Island, I would say, first, last 5, 10 years, and then leapfrogged to Martha's Vineyard and Nantucket and Cape Cod a little bit. And so my film explores, you know, if this island community can't stop this tick, what's going to happen to the rest of New England as the Lone Star continues to spread north?

Yeah, and there's a lot of implications to that as well. Now, before we go build that out a little bit more, I believe I read something about Martha's Vineyard that they had a genetic program they were looking at to genetically modify mice. Is that ringing a bell? And again, I'm going back and dating myself.

Yeah, I'm in touch with Joanna Buchthal, who's at MIT working on this, and also Sam Telford at Tufts is a part of this. But I think actually they're gonna probably I don't know if Martha's Vineyard is gonna work out because there's so much red tape and political will to fight through to get approval from the towns, and you have to get approval from the state. And so I don't know if the modified mice will work out there, but essentially it is interesting. The idea is a genetically modified mouse that is completely resistant to Lyme. And so if it's resistant to Lyme, can't transmit it to other ticks that bite it, and that could stop the spread of Lyme disease.

But that would have zero impact on alpha-gal, correct?

Correct.

Okay, so it's a different animal. Let's talk more about alpha-gal because we hear it all over the news. We're seeing it all across social media, and so much so that these companies are now coming up with not— I guess meat that's not real, right? Genetically modified meat or fake meat to help people that have alpha-gal syndrome. A lot of people are very opposed to it. A lot of people support it who have alpha-gal. It's very charged on both sides. Can you share with us what that debate looks like and where you stand in that debate?

Yeah, I've heard about these alpha-gal-free pigs and pork in the South. That's really interesting. Yeah, I mean, people— some people seem to really like it because they can reclaim the meat-eating lifestyle. Are you talking about that, like the alpha-gal-free pork?

Yeah.

Yeah, it's fascinating, and it feels like kind of one step towards some dystopian world where we have to modify our food to be able to eat it. So the Lone Star tick and alpha-gal, it's very dramatic, its effects, and it's very peculiar, and that's why a lot more science needs to go into it and research to figure out What is going on on the molecular level.

And it sounds like to me it's just a band-aid because we're not addressing the root. The root is this alpha-gal allergy, which we know very little about. And instead of putting effort and money into that, we're putting money and effort into modifying the food source to make it where these people that are inflicted with this allergy can consume it. So what you're working towards is really getting more to the root and dealing with the alpha-gal syndrome and learning more to help people overcome it. Is that, is that a fair statement?

Yeah, I mean, I don't know. I don't think there's like public dollars necessarily going into creating alpha-gal-free meat, right? Like it's— and there's not much public dollars going into any alpha-gal solutions. I mean, the people I'm following on Martha's Vineyard at the tip of the spear are— that have the support of the community. They're in national articles every single week. They have to come up with funding quite frequently, and that's the nature of public health.

So share with us what your stories are you're hearing, because you spend a lot of time in Martha's Vineyard and a lot of people there have alpha-gal. So can you pick one story that you've heard and share with our listeners what— how severe this allergy can be? Because many people think, oh, I can't have a steak, can't have a hamburger, but it goes far beyond that.

Yeah, it's— again, as I mentioned, one of the more dramatic ones was a friend of mine who mentioned he couldn't even have an Advil without anaphylactic reaction. I know many people who work in food. They make ice cream, create dairy products, and they can't go anywhere near the food that they produce. Even sometimes it's not just eating it, but proximity. Fumes are a big one with alpha-gal. Some people with alpha-gal can't be at a barbecue. The meat smoke will affect them. It's incredibly dramatic, and what's scary is how varying it is across person to person.

Yeah, we've had people tell us that they can't even go to the grocery store when they're cooking, or at various stages, because they're so sensitive to just the fumes of them cooking whatever they're cooking in the back of the grocery store. So, but I wanna learn more about what you're doing with Ticking Point, right? Because this is a really, really cool initiative that you're doing. We need more awareness. As you noted, there's really not a lot of public funds going to alpha-gal. We see a lot more public funds going to Lyme, and that's been thanks to a lot of the hard work from other groups out there that are raising awareness. And now you're doing the same for alpha-gal to help get public funds and more eyes on this to bring partnerships together to advance our knowledge of what can help people that are suffering. So how far along are you with this project, Ticking Point? And tell us what you've recorded already and some of the things you've learned while working on this project.

Yeah, so Ticking Point is a feature-length documentary, solutions-focused. It's not going to be a doom and gloom film. I'm focusing on people that are working very hard to find systemic solutions to, um, the tick crisis, especially in New England. But I plan to go down to the Southeast. Um, we're in Long Island right now.

Yeah.

And I'm looking at the efforts of the community of Martha's Vineyard, which is really— a lot of people are rising up to try and cull the deer herd, uh, do treatment trials for deer. I mean, there's a big focus on the deer because they did a study, and there's 4,000 deer on the island. And, um, a lot of the science shows that the, the— especially for Lone Star ticks— the deer is the main host of the Lone Star tick. And so it's like, you know, of course the moles, the voles, the rabbits, they don't help, the mice, but it really all comes to the deer. You can't try to find a solution without focusing on the deer as well. So, and it's controversial, but I think the community has started to come around to the idea of some drastic action. I'm following, you know, work on the scientific front and hopefully there is some progress made to learn more about alpha-gal and address ticks at large.

Reese, when you say solutions-focused, you talked about the deer, which are the animal or the host that keep these these ticks alive, right? But isn't there other angles to come at this from? So for example, if we can figure out what's causing the allergy in the human host, maybe we can tackle this from that angle as well. So the deer are one, but also identifying the biological component in the human body, and maybe there can be some solution to prevent or suppress the overactive immune system creating the allergy in the first place.

Absolutely. I met with a researcher at Yale and She— Sukanya Nadarsherman, and she is very early. I mean, I don't think you could even formally say she's looking into vaccine research, but she's interested in and following immune reactions and told me about how the guinea pig has a reaction to parasites like ticks where if a guinea pig gets bit by a tick, it'll actually just kind of spit it out.

Mm-hmm.

And so if you can create some kind of capture that immune reaction in a bottle and somehow allow humans to be able to reject ticks, that could be really powerful. And also looking into the alpha-gal on a very molecular level and figure out what's going on there and can we counter that. But that's, you know, many years away. Any kind of vaccine or anything like that would be a long way away.

What are your thoughts about SAAT therapy? S-A-A-T. And I forget what it stands for. If you remember, if you could please share. But a lot of people in our community have said it's been great They've been able to heal or cure their alpha-gal syndrome with SAT therapy. We've had some guests who have told us that. And then other people say they've done it, they've had high hopes, and it hasn't helped them at all. So it seems to be a mixed bag when it comes to feedback on that therapy.

What is SAT therapy? I haven't heard of it.

Oh, it's basically a tool that they put these little acupuncture needles in your ear, in the pressure points. And it's very targeted. That was created by, I believe his name was Solomon, the doctor who created it. So it's SAT, the first S is for Solomon. And it's acupuncture, but it stimulates the appropriate nerves, I guess, that resets the immune system to not react to the alpha-gal protein. And that's the general idea behind it. It's not enough science, not enough research. It works for some, but not all. So I think that's kind of like our first, you know, dipping our toe in the water idea to what is actually causing this and how can it help people.

Yeah, I've heard a lot of successful stories anecdotally about acupuncture. So it's good you bring that up. I've heard about biomagnetics helping out and You know, there are definitely alternative therapies we need to look into. So, and that's something I hope to include in the film, but it's also, you know, the systemic levels. Like how do we make sure that less people get bit by ticks? Because if you can reduce the number of bites, we don't need to find all these, you know, various solutions.

Sure.

Like the goal should be going back to the beginning and it's very difficult to try and prevent tick bites because it's such a systemic problem. But there are things we can do. ecologically. Um, you know, controlled burns is another topic of, um, something I know has been explored in more depth in the South and the Southeast. And, uh, there's barriers to implementing, implementing that in the Northeast where we have such a high density of homes, but, um, incredibly important to clear out moist areas, leaf litter, uh, for preventing ticks as well. So it really will need a holistic solution. to try and get at the root cause of ticks. And of course deer are a big one and, um, leaf litter, brush, I believe. I mean, you know, none of this is necessarily like, you know, peer-reviewed proven, but, um, you know, I can say you, you find some leaf litter at— we were just at Rich's, uh, house flagging and—

Tick magnet over there.

I saw, I saw, you know, 50 years of leaf litter stacked up 30 feet away from his driveway and there we found a lot of ticks there. So they thrive in those moist environments.

But I think burning has— there's opposition to burning, you know, people are opposed to that. When it comes to deer, I'll never forget this, probably was about 5 years ago, we had an initiative to bring out state sharpshooters from New York State to the East End. So you're more of like the Hamptons area. Where we are right now in Rocky Point, Brookhaven Township, had a massive campaign against the elected officials to say, don't kill the deer, from animal rights advocates, right? And it was such an aggressive campaign that we had influenced the policy out east because it was such a coordinated effort to stop it. And it never moved forward because of that component. So I think although there might be solutions, there's always going to be these political opponents like you're seeing in Martha's Vineyard, like we saw here with the sharpshooters. So even that is going to be, I think, a hard course because of all the different views that are strong opinions on either end.

So that's what makes it an interesting documentary too.

Yes.

You know, like, and I think 5 years ago you would have asked the community of Martha's Vineyard, are you ready to bring sharpshooters on the island? Most people would say no. You know, I like, you know, I like the deer. I like to see them in the yard. They're beautiful creatures. But now I think a lot of people would say tick problem has gotten so bad, I don't care. Let's get rid of them.

Yeah, I think that's a very sound argument. And I think, you know, from both fronts, when you have that side of it Where you're looking at the root, which is how can we stop ticks from biting people, when you also focus on the middle step, which is doing tick checks. Because if you can catch the tick on you before it bites or even at an early stage, you might be able to prevent illness including alpha-gal. Although it's debatable. And I'm curious, what is— are there any estimates out there from an attachment time standpoint for a Lone Star tick to bite you? Is it instantaneous or is it debatable like Lyme where they say it could take, you know, 24 to 48 to 72 hours, et cetera? Well, from—

again, I'm no scientist myself, but from what I've learned from the experts I've been around. As far as alpha-gal, you know, unfortunately there's no minimum amount of time necessarily it needs to be attached, they think. So you could get it in theory instantaneously from a transmission of its saliva, which is scary.

Yeah.

And so a tick check may, with, in the case of alpha-gal, may not make a difference or help because if it's bitten you, it may be too late. And Lone Star ticks are, they are a super tick. They reproduce at twice the rate of deer ticks. They are super fast. They will seek you out from your carbon dioxide emissions, and they will even, they will bite you and then they will let go and they will find another place in your body. They'll bite you multiple times sometimes.

I didn't know that.

So they are like, it is out of a horror movie.

Deer ticks don't do that, correct?

Not that I believe. Not that I know of at least, right. Deer ticks are, you could think of them as like the dumb tick. They're hanging out, they're waving their arms, they grab onto you, and then they, they lumber up your body slowly and then they'll bite. And you, you know, you— there's a lot of time, and unless it's a tiny nymph, you know, if you have any smarts around it and you're aware, you can get it off you hopefully before it bites. But the Lone Star, you're, you're, you're up against a much harder foe, and that's why, uh, alpha-gal has been a big concern. And the Lone Star also carries Rocky Mountain spotted fever, tularemia.

It can Not always.

It's not that likely but they can carry it.

Well, I think it's more prevalent than we think, tularemia.

Yeah.

Because we're not testing for it. Dr. Cipriani told us earlier that it's not even part of the standard tick-borne disease panel.

Yeah.

But yet it's something that is carried by the Lone Star tick which is exploding across the globe. So I think we need to test for it more and maybe it's not as prevalent as Lyme or alpha-gal but I think it's more prevalent than we think it is when we're saying there's 2 or 3 cases on Long Island that we're hearing now. That's a different podcast and a different story, right? So the other piece of this I wanna talk about is we're here today because we had you out shooting footage for your documentary. It's coming out soon. Well, I think it's gonna be—

It's gonna be a while.

A little bit, right?

But you can be a part of the process if you'd like. You can go to tickingpointfilm.com. And right now this is an independent documentary. I'm fundraising. I have a fiscal sponsor, the Martha's Vineyard Film Festival, and I'm accepting tax-deductible donations. You can be a part of the film. You know, we're having conversations with film industry veterans and we are welcoming support. We've got a dream team. The co-director of A Quiet Epidemic, The Quiet Epidemic, is Lindsay Keyes. She's—

We love Lindsay.

She's a supporter of the film and helping me on it as a producer. And it's got legs, no pun intended. That's so Scary.

So, but what else? Are you looking for anything else? Obviously donations would be, you know, incredibly helpful because this is a project of yours that you're putting your passion into and your time because you are still working on other projects, right? You're still doing your day-to-day job as well in addition to this. Is that accurate?

Yeah, I do general video production, a lot of documentary, some commercial work as well. So this is, you know, I'm hoping to make this project close to full-time in the coming months and spend time in the Southeast with ranchers who have alpha-gal and follow the hunting season, especially on Martha's Vineyard where, you know, they're making a concerted effort, but other places in New England as well. And yeah, I need support to get full-time on the project, so any, any help would be incredible. Or just spread the word. I'm also happy to talk to people that have a story to share that would want to share their experience with tick-borne illness, alpha-gal in particular, or Lone Stars. And you can reach out through the website, tickingpointfilm.com, and I'd love to hear from you.

Great. So in addition to funds and in addition to stories, it sounds like you're looking for stories of alpha-gal patients more across the nation versus just here in New York and in Martha's Vineyard. So anybody listening should reach out if they want to share their alpha gal story. We've had plenty on the podcast. We can certainly point you to a lot of people through the podcast and that we just know personally.

And people that are doing something about it, whether even if it's at a very small community level, people that are, you know, coming together to fight back against ticks and say, hey, we're going to raise awareness, we're going to create these initiatives. You know, that's what I'm focused on.

So that means Candace and Debbie of Two Alpha Gals, who are good friends of ours, have you linked up with them? They're amazing. I have.

I've sent a few emails with them. Yeah.

Yeah, so they're, they're 2 great advocates. They've been in this space for a while. But I want to geek out a little bit, and I know there's another podcast interview that people can listen to that Rich has done with Dr. Cipriani, but here today we had you on recording a lot of footage for your documentary of Dr. Cipriani and her husband, and they were doing a ton of tick drags here on Long Island, and it blew my mind. I mean, I live here, I've heard the stories, I know about alpha-gal syndrome, I know about the Lone Star ticks, I've been bitten by a Lone Star tick, and it's aggressively ran at me when I picked it off out of fear and dropped it. It came running at me. So yet I know all this, but I was shocked to see how many alpha-gal ticks are here. I mean, we found how many? I mean, just if you can share with everybody what we found today and what the results of their work were.

Yeah, Dr. Cipriani, I, I still call her Monica, but she's going to be a doctor maybe by the time this podcast comes out. Um, her, her, her PhD that she's working on, as I understand it, is about correlations and finding patterns in alpha-gal patients and trying to identify lifestyle factors or other factors that might be leading to people having different reactions, which is exactly the kind of research that we need because we still don't know, we don't know someone's risk for alpha-gal and that's a huge issue. And so doctors that are familiar with alpha-gal, God bless them because there's not many, Mm-hmm. they don't know what to tell a patient when they say, I got bit by 1 tick, I got bit by 100 Lone Star ticks. They don't know what to tell the patient if they're gonna get alpha, you know, serious alpha-gal, no alpha-gal, or maybe mild. So it's important work. But yeah, we were out today. We found a lot of Lone Star ticks. And, you know, you're finding less dog ticks out this season, especially in Martha's Vineyard. I can't speak to Long Island, but there was a big drought out in a lot of Massachusetts this summer. I went out with Dr. Sam Telford of Tufts, and he and his wife Heidi, Also tough, they were looking for deer ticks to test in the lab. They couldn't find almost any. And this is like May, this is early June.

When you'd expect to see them, that's the season for them, right?

We only found Lone Star ticks, a handful of deer ticks. And what's interesting is that, you know, effects of changing climate effects that could be bringing the tick further north, it may not be so simple as, you know, as climate changes, whether it warms or any other factors, is gonna lead to more ticks. ticks because if, if a changing climate means hot and dry, well, the deer tick may not no longer be that much of a problem because the deer tick needs a lot of moisture and it was so dry, it was a big drought, we weren't finding any deer ticks. And so what if this Lone Star tick is not only, you know, it's like pushing the deer tick out of the way? It's possible 5, 10 years from now if we're seeing a lot more drought that the deer tick and Lyme may not be as much of a problem. So That is how dramatic things have been changing with the rise of the Lone Star tick coming up from the South.

Sorry, so are you saying that the Lone Star tick is more resilient to heat than the deer tick?

It's fine going out on the lawn. That's the other thing. Again, we could talk, we could do a whole podcast just about horrible, how horrible the Lone Star tick is because deer ticks you could never find typically in like a shortcut lawn and now a Lone Star tick will be fine in a shortcut lawn in the heat and the dry. Uh, dry air.

So, um, so when you tell people, watch out, cut your grass low, it still does help. It still helps with deer tick, but it doesn't help as much with Lone Star ticks.

It still helps with Lone Stars. And honestly, frequent cutting of grass is really effective. So frequent cutting of grass, I've just seen anecdotally, really helps. You say, oh, I haven't cut the grass there, you flag, you'll find a lot of ticks. If you've recently cut grass, it does help a lot. But, um, but yeah, the Lone Star tick is really making its way up and bullying the dog tick and deer tick out of the way from what it seems. I mean, I'm sure there's a ton of other factors at play that we're not privy to, but yeah, it's, it's a, it's a serious issue. It can carry a bunch of illnesses in addition to alpha-gal, which is an allergy. And that is what my film is about, is the rise of this tick, what it means about the ecology we've created in suburbs and the American environment for the past 50 years and the people that are working to stop it.

Yeah, what I'm hearing is the Lone Star tick is even more resilient, has even more armor than the deer tick, right? So it sounds like it can live even, even in more circumstances than the deer tick, which is scary. But help us understand some of the diseases that they can carry because some overlap and some are different. So you have like STARI, you have ehrlichia, Rocky Mountain spotted fever, Alpha-gal is one of them. What are some of the ones people should be on the lookout for with the Lone Star tick?

Again, I'm no, I'm no, uh, expert, so, uh, we should bring on a certified Lone Star tick expert or ask Monica, uh, Dr. Cipriani.

Um, don't worry, Rich has already done that, so that's gonna be, uh, another episode.

Yeah, if you want to hear more about the, the verifiable, you know, research-proven, um, facts about the Lone Stars, listen to that episode. Um, but Yeah, I mean the big ones are Rocky Mountain spotted fever and tularemia and STARI as you mentioned and then alpha-gal which is an allergy, not like a disease or an infection.

We had read a few, maybe it was about a year ago, I'm losing track of time, but we had read an article that when you zoom out about alpha-gal and you think about the Lone Star tick, there were some studies that suggested other ticks may transmit it as well. Have you read that, and what are your thoughts on it?

Yeah, I think there have been reports of a deer tick bite potentially giving you alpha-gal. I mean, it's, it's, uh, it's not as if the Lone Star tick has some, um, kind of, you know, magic silver bullet that just gives us alpha-gal. It has to do— it's complicated. It's, it's a molecule in its saliva that interacts with our immune system. And so, I mean, other ticks have saliva too. I have heard that it's not just the Lone Star tick that can give you an alpha-gal reaction. A lot more research needs to be done about what's going on there.

You know, on that note about research and having to know what really is happening, people ask Rich and I all the time, when should I be worried? Is it me? Is it the tick? What makes one Lone Star tick different than another? Is it that one tick has alpha-gal, the other doesn't? Like with Lyme, you hear that tick is pure, it doesn't have Lyme disease. That tick has Lyme, it's been infected. But it's not that cut and dry with alpha-gal, right? It's kind of like a different paradigm there.

Yeah, again, I would refer you to Dr. Cipriani, Monica's podcast with Rich, because this is exactly the research she's looked into. And while nothing I think at this point is definitive, we're gonna need double-blind controlled studies, placebos to drill down on what's really going on, It's unfortunately complicated. I wish I had a clear-cut answer, but it has to do with the patient's allergic response. I mean, you could maybe make a guess that if someone already has a lot of allergies that are severe, they might be at a higher risk. I don't know. I mean, it's— one thing we do know is the number of bites you get is not going to help.

Yeah.

I mean, if you get like, if you get a tick bomb of Lone Star larvae, hundreds, your risk is going to go up for alpha-gal versus just getting one tick bite. But that doesn't mean the one tick bite can't give you alpha-gal also.

Yeah, I want to pose a question to you that I posed to Dr. Cipriani while we were dragging ticks earlier because I thought this for quite a while and I'm not sure if it's sound and I love getting other people's feedback on some of these ideas. Do you think that it's possible more people than we think have had both Lyme and alpha-gal at the same time? I mean, look at Rich. His yard is infested with ticks. We've been debating for the last 5 years whether he's a tick magnet or whether it's really just him checking for ticks. And, you know, we've proved today, thanks to Dr. Cipriani, that it's really his yard is infested and that's why he's a tick magnet. So we can consider that debate closed. Now, because of that— that's a joke, of course, from previous podcast episodes here— but considering that, do you think that people that are sick with Lyme and also suffering from an alpha-gal allergy are trying to treat Lyme, but maybe some of those treatment modalities, some of their diet is causing more inflammation because of the alpha-gal response? and making it harder to overcome Lyme, and it's sort of the seesaw of alpha-gal and Lyme making the healing journey far more difficult than it has to be.

That's interesting. I'm sure it's possible. I mean, there's not a ton of overlap necessarily in the symptoms other than, you know, you could say general inflammation, and people with alpha-gal have heard them talk about brain fog, which you get with Lyme, things like that, but certainly you hear people out, and when you're talking with, people you meet out in the street or at the park, and they're saying, well, you know, can't you just take doxycycline and that will get rid of alpha-gal? It's like, no, it's completely different, as we're talking about. It's an allergy. So, I think there could be some, you know, cofactors there that are not good. You definitely don't want both at the same time, I'll tell you that.

Talk to us about the efficacy of the tests, because like with Lyme, we know the tests aren't great. You know, the standard 2-tier, the modified 2-tier, et cetera, of the Western blot we thought was more accurate. We learned from the work of Dr. Horne that it's even less accurate. If you've had ever— if you've ever had one doxy and you think you have active Lyme, the odds are 5% you're gonna test positive. So it's just god-awful. How accurate are these panels to test for alpha-gal? Because again, you're testing for an allergy. It's not a direct definitive test. So what are the odds if you have alpha-gal that the test is actually gonna show you have alpha-gal?

So this is an interesting one because, yeah, the Lyme— prevailing Lyme test that we have is like 50 years old. It was created in like the '70s. Like, we need a modern Lyme test. And there are— I think there's companies and there's people working on that, and there is a lot of promise there because we need accuracy and we need timeliness. You know, we want to be able to know if you got bit a few days ago, ideally, did I get Lyme? Um, and so with alpha-gal, there is an antibody test, and what I've learned, heard from the clinicians on Martha's Vineyard, which is right now a huge alpha-gal hotspot in New England, is people are so focused on this antibody test for the antigens. Is it the IgI antigens?

Yeah.

And so, because it gives you this score, and it's actually like very— it's a hard number. It's not necessarily, oh, you might, or you— it's like a hard number, and it goes up and down, and people like to track it and they say, you know, it's helpful for people if they're really allergic to meat from alpha-gal and they have a high number and it comes down at the subsequent test. They'll be like, okay, maybe I can reintroduce cheese and see if that works and I'm not allergic to cheese anymore. But I think also people may fixate on the number.

Yeah.

And some people can have high numbers and it doesn't mean that they have an allergy at all. And there was a a study that looked at random blood samples not related to tick-borne illness from a bunch of the top states that where tick illness, especially alpha-gal, is present, Lone Star ticks. And, you know, states like, um, again, don't quote me, but states in the Southeast, there were a couple that had numbers where 1 in 3 people, 1 in 4 people in these blood samples had alpha-gal antigens detected. And that doesn't mean by any means that they are allergic to red meat or mammalian products. It doesn't work like that. But it's complicated. You can have high numbers and no reaction. But it just goes to show that a lot of people probably are exposed to larval lone star ticks all the time and don't even know it and are bit and have these have a reaction that they don't know about.

And why they don't know and it doesn't bother them, but it bothers somebody else, we still don't know the answer.

We don't know and we need to know that. And yeah, Dr. Cipriani-Monaco, who I'm following in the film as well, like her work is really integral to that and it's important people are looking into that.

What are some good resources, Rhys? Like we know other people have told us, I think it's alphagalinformation.org. Dr. Scott Commins, who's one of the leaders in the space, he's contributed a lot to that website about accurate testing. So if your doctor isn't aware of what to test, you can go bring him that website and he can share, you know, people, people can read that to learn more. What are some resources, websites, etc., that you recommend for people to learn more about alpha-gal?

Yeah, I recommend the Alpha-Gal Alliance run by Sharon Forseth. She has some great information. She was one of the first people to like demand action, legislation, awareness about Alpha-gal, and she's made a huge impact and has a lot of resources. She literally, you know, she had bad alpha-gal, and she just looked into— she read all the papers herself and put together resources. Yeah, Dr. Scott Commons has a podcast that is really worthwhile to listen to if you have— if you want deep dive questions about alpha-gal. I think it's called Questions We Ask. And the Tick Boot Camp podcast, if you've ever heard of it, is really—

Who are those guys? I don't know.

Yeah, worthwhile checking out.

Some weirdos in a basement, I heard. I don't know.

Yeah.

But I want to follow up with, where can people learn more about Ticking Point, right? Your feature documentary that you're working on. I know it might be a couple years before it's out because this is gonna be a solutions-based documentary, but people are excited. They want to learn more. They want to stay up to date. How can they track you? Where can they follow you on social media? And what's your website for people to go check out?

Yeah, so the website for the project is tickingpointfilm.com, and I don't have an Instagram yet for the project, but my Instagram is @reece.robinson. And I have a teaser up on the website. You can take a look at that and just see what the project is about. And there's a mailing list that would be A great way to stay abreast of everything going on with the film is signing up for the mailing list at tickingpointfilm.com.

If people wanted to learn more about your work and other projects you've worked on, where can they go see some of your talent and film-producing efforts in other areas beyond The Ticking Point?

Yeah, so my website is reece-robinson.com. I have my kind of portfolio up there. The other public health project that I worked on is called The First Wave. It was a National Geographic film where we were filming in a hospital not too far from here, Long Island Jewish Medical Center. We were filming there during the first 3 or 4 months of COVID Oh, wow. In March, April, May 2020, and following doctors and nurses as they, dealt with these, this early, you know, early days of this scary disease. And we were capturing the chaos in the hospitals. No one, you know, the doctors were doing the very best that they could with the resources and knowledge they had, but then the patients were incredibly strong that we followed in the film. So that film is called The First Wave. You can watch it on Hulu. Believe it or not, it's actually somewhat uplifting because, you know, it's a testament to the human strength and human spirit under, you know, a really trying time.

Rhys, we're gonna have to have you back on right before this documentary launches so we can help you build some momentum. We need to get this documentary to be seen by everybody. I'm afraid that by then this is gonna be even worse of a problem. So we need to put our efforts together. We need to pull the community just like we have in the Lyme community. And we need the same energy behind alpha-gal that we do Lyme. And we're committed to help you do that. We can't thank you for everything you're doing to help our community and the tick-borne illness community. And we certainly love to have you back. And thank you again for joining our TIP Bootcamp podcast.

Thank you, Matt. Everyone wear your long pants and tuck your socks.