092 Tick Warriors with Jennifer Platt

So I would say what gets me out of bed is just knowing how much suffering there still is. I live in a small town, and I run into this older gentleman all the time at the coffee shop, and his name is Lloyd, and he has chronic Lyme. He can't get a doctor to diagnose it. He suffers terribly from arthritis. And, you know, he looks like this robust man, but he's very much hurting on the inside. And he said to me the other day, he said, I tell my friends, you're the tick lady, the tick doctor. I don't want to always have people coming up to me and telling me about how sick they are. And it's still happening.

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I find holy redemption when I put this car in drive, roll the windows down and turn up the dial. Can I get a hallelujah? Can I get an amen? Feels like the Holy Ghost running through ya when I play the Highway FM. I find my soul revival singing every single verse. Yeah, I Welcome, friends, to the Lime Voice Network. I am your host for today, Sarah Slickty Sanchez, and I'm normally here with my husband Aaron, but we have yet another snow day here in the beautiful Colorado mountains of Woodland Park, so he is running interference. And you just get me today. So welcome. This is episode 92 with Jennifer Platt of Tick Warriors. Super excited to talk to this chick. It's been in the makings for months. Today's episode is sponsored by Invita Medical in Scottsdale, Arizona. In my opinion, they have a phenomenal neurological repair program called IRAD. So you can call, you can go to invita.com or call and talk with someone. My personal care coordinator for years has been Samantha., and she is a wealth of information if you guys want to know the ins and outs of their neurological repair program. And I'm really excited to announce that we have a new sponsor, and our sponsor is tickwarriors.com. We'll be talking about the ins and outs of it later on in the show, but you can go to tickwarriors.com for safe, effective, all-natural, eco-friendly protection against ticks, mosquitoes, and other insects. They help you protect the people, pets, and property that you love, as well as your livestock. And they have graciously given us a source code. If you go to tickwarriors.com and put in the source code LIMEVOICE, you'll get an additional 10% off. And if you order this Friday on Black Friday, you will not only get the 10% off as a LimeVoice listener, you will get buy one get one. So it's a great time to buy. Buy one, get one. You can never go wrong. We have drastically increased our listeners here in the last few months. So one of the questions that we are continually getting is, hey, we don't know who you guys are, which is kind of astounding to me because we have like 100 hours almost on the air at this point. But for you new listeners, just to give you a background, my husband Aaron and I started Lion Voice 4 years ago, and I have battled chronic Lyme disease since I was 18. I got infected in 1996, went undiagnosed and untreated until, um, 2013. And when— that was the first time I had actually gotten a real diagnosis beyond chronic fatigue or fibromyalgia. By the time I actually did get that diagnosis, I'd been in bed for years. I was in a wheelchair, I was having seizures. It was a whole nightmare. Um, so Lyme has changed the trajectory of our life in so many ways. Um, We do have a 17-minute documentary at lymeboice.com called Disappearing from Society where you can see more of our story. But I want to just talk about the, the ways in which Lyme has changed our lives. So we have 5 kids, and, um, our oldest is 19. He's in New Mexico going to college, Derek. Um, our second, Kaya, she just graduated early from high school at 17 and moved out to Montana. And then, and so we only now have 3 in the house. Nate, our 15-year-old, just made the JV basketball team as a freshman, which was really exciting. Um, and then our 2 youngest are both 11 and they're artificial twins, which means, um, well, actually we call them artificial Irish-Ethiopian twins because they are not biologically related, but they're the same age and they're the same grade in school. And so that's our running joke around here. So 5 kids is a lot, just in general, a lot with our economy, a lot with meeting all their physical, emotional, spiritual, financial needs. It's, it's just a lot. But what has made life even more complicated for us is this element of Lyme. And I did not know when I had all 3 of my kids that I was fighting this illness. And I don't know how many of the special needs that we have in our house are directly related to Lyme disease. Disabilities, but, but we have a lot of them. All of our biological kids have significant learning disabilities in one or more categories. We have ADD, we have dyslexia. Two of our kids, Kai and Nathan, also have congenital Lyme, and they're both doing exceptionally well right now. Like all kids with congenital Lyme, as life events happen and puberty and moving out and college transitions, We all know that those things turn a minor issue into something bigger because you're chronically dealing with some stuff. So for Kai and Nathan, really, they're doing really well and we just work on supporting their immune systems in a powerful way as we can. So one of the other complexities that we have in our household is that our daughter Anadea has reactive attachment disorder. Reactive attachment disorder is very complicated in the sense it's similar to Lyme in the sense that it's mostly invisible. And what I mean by that is if you have a kid who has a medical need, you know, uh, they're on a feeding tube or they're in a wheelchair or they need to have a surgery, that's very visible and everyone understands that. Kids with reactive attachment disorder have experienced a lot of trauma early on in their life so they're in fight or flight all the time. There's a lot of oppositional defiance stuff happening. And for our daughter this year who started 6th grade, it has not gone well. She has been difficult. We've had them in our home for 9 years and she's been hard since day one, hour one. Um, and so in addition to Lyme, um, and chronic illness and having multiple people with chronic illness, we have this component of reactive attachment disorder. And the complexities of all of this are so over the top ridiculous that we've really had to change our entire lives to accommodate, um, getting our kids to the finish line and helping them launch into adulthood. And one of the ways in which we did that is by being self-employed and working from home, because when you are going to the ER X number of hours, uh, times a year or a quarter, and you have kids and you're seeing specialists, and the list does not The list goes on and on of how complicated it is. And so we've had to change our lives. And that's not an uncommon story. And Jennifer Platt is another one of those people who has changed her life, not only because her life was altered, but also because she wants to help stop the suffering. And so when we created Lyme Voice, we wanted it to be a platform where people could come. And a lot of the information you're going to hear on this show is anecdotal because that's where we're at with this illness. You will get a different opinion from every doctor you see, and you have to sit there and figure it out how to move forward for yourself. But we've expanded over the last 4 years of doing LionVoice. I mean, I've said we have learned so much and I feel like at the same time know so little. But we do have a wealth of information as far as trying to problem solve and jump those hurdles that you have to do. Mostly because we've had to do them all. We've moved, we've changed careers. Aaron is a phenomenal artist. You can check out his work at andysanchez.com. And the medium they use is wood, and they inlay— Aaron inlays, or used to before we transitioned careers, inlays beautiful stone into these gorgeous dining room tables. And their work has been seen around the world. It was, it was in Harrods of London for many, many years, and the Queen of England and the King of Spain have sat at their table. And that is something Aaron loved, that profession. He, his heart is an artist and he loves to create. And yet that job, when I had a chronic illness and we had 5 little kids, that job no longer worked for us because it required a lot of travel. Doesn't always come with health insurance. There's a lot of things that we have had to change. Um, and for me, I, um, owned a real estate brokerage in New Mexico with my brother and it's still there, Absolute Real Estate. Running strong, um, but I haven't been a part of it in over 6 years. I actually signed over my rights to the company the very first time I went through treatment in 2013 because I had not been in the office in 3 years. And so welcome to this crazy network where we are going to continue to bring you authors, speakers, physicians, and super fans who are on this journey. And I know so many of you feel so alone But please know that you're not. There is a ton of work being done behind the scenes to increase people's ability to get testing. There's legislation in the works, and Jennifer Platt's going to talk about that, the Tick Act, in this episode. So that's a little bit about us and our journey. Lyme has impacted everything. There's, there's no part of our life that has been unimpacted by this disease, and it's because of the longevity and the myriad and the amount of complexities that just don't stop. And I think one of the sad things for us this year in 2019, because I had to go back through treatment this year after being reinfected in 2018, I— 2019 did not go the way I planned. We're self-employed and we had two projects that we were planning on completing, and those are not done. And we got me through treatment. Aaron kept the house and the business running, and that was about all we did. We're kind of back in this rebuilding phase of, okay, what else do we need to do to make all these complexities work? How do we meet everyone's needs when we need extreme flexibility? Because you never know what's going to happen. So yeah, it's a hard, hard journey, but you're not alone. So I want to talk to you guys about Jennifer Platt because this episode has been months in the making and she's a phenomenal person with a phenomenal product. So Jennifer Platt has decades of experience in public health and environmental program development. She has led the creation of nationally recognized award-winning education programs and has spoken extensively to audiences of all sizes. While working on her doctorate in public health from the University of North Carolina in 2011, Dr. Platt contracted ehrlichiosis She was later confirmed to also have Lyme disease and Babesia. Her personal experience with tick-borne illnesses led her to create Tick Warriors in 2016, which, as I mentioned, provides eco-friendly tick protection for people, pets, and property. But in her spare time— this chick's phenomenal— she also founded Tick-Borne Conditions United, also known as TBCU. She's a phenomenal human being. I am so glad you're going to have her on the mic. Stay tuned towards the end. At the end is always where the depth really comes from. If that's what you're here for, that's where, that's where it is. So remember, go to tickwarriors.com for the Black Friday sale where you get buy one, get one. Enter LymeVoice as the source code for an additional 10% off. And we mentioned this before in other episodes, but when we were at the Live Lyme Conference in 2019 this year, the primary thing that every physician and researcher and patient was talking about was prevention, because this illness is so complex, so expensive, so misunderstood. And I think we're still years out from having any type of organized— an organized and effective plan protocol that's affordable and accessible to the masses. I think we're years away from that happening. So prevention is going to be your best Tick it. Enjoy this episode. For nearly 2 decades, Invita Medical Center has been leading the way with the latest in personalized treatment options designed for patients dealing with Lyme disease complex. At Invita Medical Center, they offer a team-style approach and the latest technology regarding treatment and testing at an unmatched radical love and care environment for their patients. Call to speak to one of the patient care coordinators today to learn why hundreds of patients choose Invita Medical Center each year. You can find them online at invita.com.

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Welcome, welcome, welcome to this latest episode of Lyme Voice, and I am here with the lovely Jennifer— well, lovely Dr. Jennifer Platt.

Thank you so much. It's great to be here today.

Yeah, we're excited to have you. We've been in the talking for months and months, um, but finally we're able to connect.

Yes, it's been quite a while, but there's some really great things going on in the world of tick-borne diseases and advocacy. So it's actually a perfect timing because I can fill you in on some of the latest stuff going on in the halls of Congress.

Awesome. Okay. So give us a little 4-minute background of your story and how you came to be a part of the whole Lyme Warrior journey, fighting for your life club no one wants to be a part of.

Right. Okay. I'm here today because back in 2011, I got an, I thought, obscure disease called ehrlichiosis. And that is from the bite of the Lone Star tick amongst other ticks. And it was absolutely debilitating. I just, it just came on really suddenly. I felt so bad. I felt like would need to call an ambulance or something. And it was really, really bizarre. And I was very lucky that I had a— I went to an urgent care and they recognized it very immediately as probably being tick-borne. And I started taking doxycycline immediately. And then the tests that they had that came back a few days later confirmed it. Several years later, I did some follow-up testing and they found evidence of both Lyme and Babesia. So we don't know if it all happened at the same time, if it had been there and something— one of them activated the other. We really just— we just don't know. There's so much more to learn in the, in the world of ticks and the diseases that they're transmitting. But I was lucky. I had a healthcare provider that was extremely aggressive in treating it. And I remember her saying to me— wow, what a benefit— yes, she said to me, she said, if we don't be really aggressive right now, you can have long-term issues that just always are with you. And I, because I was mentally, I was really hesitant to be on antibiotics for so long, and for me that was months, several months. But in the end, I, I got a lot better. I still have some memory issues, but we don't know if that's still— if that's Lyme coming back on occasion. Is it stress? Is it perimenopause? Who knows? Maybe it's all of it. But, um, but overall, I, I am fairly healthy.

How, how long do you think it took you to kind of recover from that acute case?

It was— I, I pretty much don't remember about 3 months. So it was, I would wake up in the morning, I had a 2-year-old at the time, and I would wake up in the morning, get up, take him to his daycare provider, and I would come back home and pretty much sleep. And that was it. It's just extreme fatigue and no energy at all was my biggest symptom.. And I just pretty much lost that much, several months on my calendar, middle of working on my doctorate in public health, which is the ultimate irony, right? Because you're public health, you know, ticks are bad. And even so, you just don't understand what somebody is going through until you've seen a loved one or experienced it yourself. And that was my biggest takeaway, really, is that out here you look normal. And I can remember people around me, just me trying to convey to them how horrible it was, but this is a normal, you know, normal face and body. And it's— it was very illuminating. Yeah. Wow.

So you took your background in public health. And decided, just gonna make a trajectory change in my life here to help stop the suffering.

Yeah, um, I had actually done some work with my local health department a couple years, 2 or 3 years after that, and was doing some consulting for them. And I live in Chatham County, North Carolina, which is known amongst many healthcare or public health professionals in the area as being tick central for the state. It's very much a hotbed of tick-borne diseases. And we did a survey to find out what people were doing to help prevent exposure. And shortly after that, I had been working for a startup that um, didn't end up going. You know, they had to shut down. And I decided at that point if I was ever going to do my own thing, step out. And it was a perfect opportunity because for me, I've spent my career in the environmental field. I've always tried to make choices that are good for the environment, that are safe for my family and my child.. And I was driving down the road one day and said, maybe it should— maybe if I start my own company, it should have to do with ticks and it should be eco-friendly. And that's where I came up with Tick Warriors. And I pulled over. I remember I was driving down the road and I pulled over to see if anybody else had that URL. Nobody had it.

Mm-hmm.

Right there on the side of the road. The birth of the company. Yes, and I was able to team up with a local manufacturer that had already been making an all-natural repellent for about 15 years. And I can, I'll tell you about that more in a little bit. But that manufacturer was right in my hometown. So it's been meant to happen.

Yeah.

Okay.

So tell us about Tick Warrior. And one of the things Aaron and I keep coming back to, and you and I talked about the this beforehand. When we were at the Live Lime Summit recently, that was what everyone kept coming back to, is prevention, prevention, prevention. And it is so, in a sense, hard to wrap your mind around the fact— and Aaron was actually just saying after speaking with you, he said, you know, I've kind of had this like underlying attitude that, that like we've already been here and dealt with this so it's over. And he said, not consciously, but there was so much talk about prevention and how important it was that he said for him, he realized, oh my gosh, like, this is on a whole new level. We're in this for the rest of our lives. Like, there— we're not— it's, it's a matter of time before public awareness catches up. But how do we protect ourselves and our kids in the future? And then when you're dealing with kids with neurological issues and inflamed, uh, inflamed sensitivities and all the gut health stuff, knowing what to do and knowing what to pick and use seems like a lose-lose sometimes. So I'm so excited that you've brought this holistic perspective to the prevention side. So tell us what you guys are doing in the products that you have.

Okay, I'm so glad to, to have the opportunity because for me, um, and many people, I feel like if you can't— I've had so many people that are sick come up to me and say, I don't go outside anymore. Yeah. And if you can't go outside, what is life? I mean, it's just, it's innate in us to want to enjoy the outdoors. And with people that are trying to avoid exposure to ticks, it's so important to do the prevention piece. And I think you're right, it's only really becoming understood that, um, how important that is. And with Tick Warriors, what I really try to educate people is that we do have safe and effective means, options to do that. As you know, I'm sure, in the, the world of green products, we've all had problems with the first generation of a product where we're all so excited about going out and getting whatever it is that's available, only to be dismayed that it just doesn't work quite as well as it should. So with Tick Warriors, we've got a host of products that are not only safe, but they are effective. And therefore we have people, pets, and property.

So yes, people, pets, and property.

Yes, that, you know, it's a great alliteration, but it also is important to think about a holistic perspective of protecting yourself your loved ones, and where you're going to the extent that you can. So with that, what I'll do is I'll just spend a few minutes covering each of those areas, and if you have any more questions, we can go into it. As you know, we've all been conditioned for people— we've all, I think, almost universally know that using repellent is the first line of defense. And historically, the repellent products have been for your skin. Over the last few years, they've started coming out also with repellent products for your clothes and your shoes, right? So as with anything, there's a whole spectrum of options available, from toxic and more chemical, long-lasting options to non-toxic that are more environmentally friendly products. And my manufacturer has been making the, one of the main go-to repellents on the market is based, the base of it is from the wild tomato plant and it's called undecanin, but the product itself is this, I don't, you know, if you can see the video while you're watching today, it's called BioUD and it's in an orange bottle. All of our products are on our website as well at tickwarriors.com. The, so the, the BioUD product, which is based, made with the wild tomato plant, is fantastic. It works on your skin and your clothes. So, you know, most repellents that you work, that you use on your skin, you don't want to use them on your clothes because they're going to be too oily. And then vice versa, there are repellents out there now that are usually permethrin-based that people use on their shoes and their clothes. Yeah, they do last multiple washings, but you sure don't want to get that on your skin, and you don't want to be wearing those clothes when you're sweating, because then we've seen studies in the military personnel where they actually found permethrin very small amounts in their sweat. So, um, I tell people if they're going to go with that option to please be aware of that. But our product, on the other hand, is a nontoxic alternative, and it is for both your skin and your clothes. Big— biggest difference is that you want to treat it like sunscreen, so you reapply it every couple of hours because, okay, it's, you know, it's just— that's just what you got to do to make the lasting protection. And we have another similar product as well that is, um, it's called Bite Blocker Extreme Sportsman, and that also is a repellent for your skin and your clothes. It tends to be more oriented towards children, and it's, it's all based on personal preference. I use the regular orange bottle on my child, um, The, the one caveat is if you accidentally got it into your eyes, it might sting a little bit, but it's my preference to use. And you know, if you get sweat in your eyes, it's gonna sting. So yeah, problems with my, my child. So those are the, the two repellents, and like I said, they work on your skin and your clothes. So that's the first line of defense.

Second line is. You can go to tickwarriors.com for safe, effective, all-natural, eco-friendly protection against ticks, mosquitoes, and other insects. They help you protect the people, pets, and property that you love, as well as your livestock. And they have graciously given us a source code. If you go to tickwarriors.com and put in the source code LIMEVOICE Lime Voice, you'll get an additional 10% off. And if you order this Friday on Black Friday, you will not only get the 10% off as a Lime Voice listener, you will get buy one get one. So it's a great time to buy. Buy one get one, you can never go wrong.

And like I said, they work on your skin and your clothes, so that's the first line of defense. Second line is for your pets, right? We have people, pets, and property. So for your pets, another very popular product out there that we've all been taught and educated on using is the topicals and the collars that are like, you know, the Frontline, etc. And a lot of people are very happy with those. My challenge personal, um, concern is a lot of times those don't work until the tick actually bites the animal, right? Meantime, the tick hops aboard the animal— it's not literally, so they can't hop— but the tick climbs, is on the dog, and then it comes inside and it will go on to the humans. And I love it. I always laugh, and then I think you had told you and Aaron this before, but I always laugh when research tells us something that we know. And I recently was at a symposium and the title of the talk was, pet owners have a higher likelihood of getting a tick-borne disease. So, yes, we know that, and now it's been proven. So you want to keep the ticks out of the house. And for dogs, for pets, what we have is a product called Ticks Off, and their little tagline is "too slick for ticks," which is fantastic. I love it. It is a product that you rub into their fur once a week, and it actually keeps the ticks from latching onto the fur. So made by a brilliant horsewoman out in California. She said to herself, if the ticks can't get on the dogs, then they can't come inside and get on the humans, right? Yeah, right. Prevention. Yeah. Um, it's the Holistic Veterinarians Association. Love it. It is all natural ingredients and it's, um, I, I The first question people often ask is, is it oily? And it's not. It's very similar to a conditioner, but it's just enough. They don't get, you know, they don't leave a residue behind if they hang out on your furniture or the carpet, but it keeps the ticks from being able to latch on with their little hairy—

That's huge.

Yeah.

Yeah, that's a big deal.

Mm-hmm.

So you had said one of the things that so intrigued me about this company was you were just talking about your background in, uh, your PhD and how you wanted to bring quantifiable evidence to products that you created. So give us like a 2-minute synopsis of what, what that process has been like for you. Yep.

So we, uh, you know, it was one of the very first questions I asked the manufacturer about. I wanted data on effectiveness of products, and because when I was looking around for manufacturers, I couldn't get them to tell me anything beyond anecdotal. And that was actually— this is a sample study that was done on the BioUD. And, uh, I'll send, you know, I think you always have links at the end of your podcast. Yeah, for sure. I'll send some links to the studies. But this is one of the, the studies that came out that showed the BioUD. They compared it to DEET and to permethrin. So you have this, you know, side-by-side comparison of the 3 products, and it works equally as well. So thank you for the reminder on that. I always try to, when I can, find evidence of effectiveness. Now with our property products, I worked with the manufacturer to develop— he has been using a form of the products on other pests like cockroaches and ants and has really good luck. So we took that base and adapted it and started using it for control of ticks. So we do say it's our Tick Warrior sprays, the yard sprays, are, you know, they target ticks, but they also work on other things like mosquitoes, chiggers, fleas. That's so important. So Tick Warriors is 3 years old now. So what we've started doing with that is we started out by doing some manufacturer-level testing, and now we've been doing— we've had 3 years of field testing of the effectiveness of the property. Wow. I can show you just real quick what they look like. This is the— we've got 2, and they're designed to complement each other. A lot of people just have a yard. Right, with grass. So we have a yard spray that's for yards and spraying your grass. And what that does is it will kill everything that it comes into contact with pretty much within 20 minutes at the most, but it's safe enough to spray around children and pets. That is the active ingredient, is a soap and then it has some other inactive— it has some inactive ingredients, coconut oil and lauric acid, which is a coconut derivative, citric acid, which is vitamin C. So there's a, you know, complement of an ingredient. Everything is food grade. So it— I— it's— we have many clients, and I'll never forget one time I had this lady who was out in the yard around her her kids were running through the yard, and then here comes the dog and the cat, and they're all running around, and it was great because there's no dry time required and it works great around, you know, safe to spray around kids. And then the, the complementary product with that yard spray is our pest control, and this is for the natural areas. The reason— and leaf litter wooded borders. So that's where the ticks really hang out, right? Like, yeah, areas almost definitely. And the pest control will kill whatever ticks it comes into contact with, as well as those other, the other pests I mentioned earlier. But it also has an ongoing residual, so it lasts for up to a month. Maybe longer in some cases. Every property is a little bit different, but what we have here in general is people have a grass yard right around the house and then they have wooded borders, you know, so we're not exactly urban, not always rural, so to speak, but it's kind of a hybrid. And so those two products work together off of each other to really control the pests. And I will say, just jump in real quickly here, um, back to the literature. Most of the literature that you're going to see online is directed towards control of the deer tick, the black-legged tick. Okay. And that this is, you know, obviously not a real tick, but it shows you in general kind of what it looks like. Um, you know, it's the very common tick that is known to carry Lyme disease. The tick that we have growing and its behavior is very different. So, the Blacklegged Tick just tends to hang out on the grass or in the leaf litter and wait for a prey to come by, right? So, it's doing this thing where it's got its arms, legs out, and it's questing, very passive. On the other hand, the new tick in town that people are really learning about— not new at all, but there's a growing amount of education online about it— is the Lone Star tick. And that tick that has the white dot. This lady right here, because this is the female adult with the dot, is extremely aggressive. They did some research out of Old Dominion where one of the premier tick researchers figured out how to wire an electrode to the tick and get the response. And they were able to detect response in the Lone Star ticks to CO2, which we emit and animals emit, from as far as 100 feet away. So, it senses the CO2. It also has rudimentary eyes.. It can sense motion and heat, and it comes, and it is extremely fast. So that changes the game on control. And it's kind of, you know, I've often thought it's a good thing you can't see them because sometimes you really might not want to go outside. But like I said, it's about protecting yourself, and it's about being smart. Marriage. So with the people, pets, and property, I feel like that's a trifold approach to really give yourself some good tools to help yourself.

Yeah, I like that a lot. Um, I felt like finding your guys's product actually made us feel good about doing what we were doing because it's like we've been continually like, if we use too natural of product and it doesn't work And there's always this balance of not being obsessive and crazy, but being protected and understanding what we're all up against and realizing how quickly it can change the trajectory of your life. And it's like, oh my gosh, this is huge and it's not going away.

And doing it without feeling like you're poisoning yourself, you know, right? Like tiny, tiny doses of really bad stuff. Um, now that said, I do want to tell you there are some very simple other things that people can do. So, of course, we all know that there's, I think, 3 that I want to leave you with. Is that, you know, the first one is, of course, doing daily tick checks, maybe even a couple of times a day, right? And check your soft areas. That's where the ticks like to go. Armpits, thighs, groin, behind your ears, your neck. You know, the ticks, they'll go to the softest area they can get. So that's, you know, very easy prevention practice. The second, and this is counterintuitive, but if anybody leaves this conversation with one thing to remember, it is throw your clothes in the dryer when you get home. After you've been outside, the impulse is to throw your clothes in the washer, right? Right, but we know that ticks can survive in water. The Lone Star tick can survive for up to 80 days in water. So, but heat kills. So throw the clothes in the dryer for 10 to 15 minutes on high, and you're— if there's any ticks that got onto your clothes, that's going to kill them, right? It's very simple practice. And then, of course, is is just taking the time to— after, you know, if you do get a tick on you, is to use very fine-point tweezers, pull straight up, and, you know, you wait, wait, wait till it releases, and then to keep that tick in a bag.

And so if you need it later on down the road to look at, you have it. Awesome. I'm glad you said that. I like starting to itch just having this conversation. I'm like, oh God, they're everywhere.

It's true. And we, you know, I'll talk a little bit about our nonprofit and everywhere we go, there's such a need for education. And Beth Carrison and I who co-founded the nonprofit Tick-Borne Conditions United, Our vision is to see a world where we're not so terrified of ticks all the time and every little tickle. You know, when tick season really kind of starts up, and I say starts up, I mean, ticks are pretty much out year-round in a lot of places. Don't think that in the wintertime you're safe. But, you know, especially I know when the lion stars come out and the is going to depend on the time of the year and the temperature, of course. But when they start getting really active, every little tickle— was that a tick? Was that a tick? Right? But we want to see a world where everybody's not so terrified all the time.

Wow. So you guys actually go in and offer training because prevention is the focus of the Tick-Borne Conditions United. And you guys actually go in and will train physicians, which I thought was such a valuable— if you— because there are medical practitioners. I got, um, a message this week from a nurse practitioner saying, where do I go for testing? How do I get training on what to do? I'm seeing huge numbers of people with very similar pain, fatigue issues, I need to know how to treat them and train them.

And so that's fantastic that you guys offer that. Yeah. And we have on our website a brochure for Tick-Borne Conditions United and the website, you know, tbcunited.org. And we'll include that in the link as well for you. But on the website, it gives an overview. So we really at TBCU, it's education, research, and advocacy. And education was the very first reason that we knew we needed to start it, was to educate not only patients and the general public, but especially healthcare providers, because there is such a dearth of knowledge, of understanding. A lot of times their information is 10 to 15 years old. They won't listen to their patients. You know, I mentioned the conditions that I have, and Beth Carrison, who co-founded TBCU with me, has a condition called alpha-gal syndrome. Yes, that is the allergy to red meat caused by the tick— a tick bite. And so especially with that syndrome, condition, allergy, disease, whatever you want to call it, it is life-altering. And people don't understand it. And healthcare providers— I often call it Lyme 2.0 because it seems to be very similar issues where patients are told it's in their head, they're told they're crazy, and the healthcare providers say that can't possibly be an allergy to red meat, which turns the state of knowledge of science on allergy science on its head. I mean, Dr. Scott Commins out of UNC says one of his favorite, favorite lines is alpha-gal breaks all the rules. So everything that healthcare providers have been taught about allergies is out the window with Alpha-gal syndrome. And actually, another link I'll send you is Beth and I are doing a webinar in December, a free webinar through another nonprofit called FARE, Food Allergy— Food and Allergy Research and Education. And that'll be a free webinar available on Alpha-gal syndrome. We're doing that with Dr. Tina Merritt, who who not only has Alpha Gal herself, but she's an allergist and she sees a lot of patients in Northwest Arkansas. Wow.

Yeah, yeah, you are like, uh, when we were prepping for your interview, Aaron kept calling you, um, advocate extraordinaire. He's like, this chick is all over the place. That's very flattering.

Thank you. Which leads me to my next people that are so passionate about it.

And we have so much to do. Yeah, I know. Well, and it's so fascinating to see how people's backgrounds all come together and shape their advocacy work and what they're able to do. So, tell us, you are a part of in some capacity the Tick Act. So, tell us what is— what that is and what has just happened recently.

Okay, great. So, that leads into another aspect of what we're doing at TBCU, which is the advocacy and so important, as we all know, to really get more attention on ticks and tick-borne diseases. So, the backstory to the Tick Act is that Congress developed or made a requirement in their 21st Century Cures Act that was passed several years ago to have a federal tick-borne disease working group.. And that group started back in 2017 meeting, and in 2018 they made their first report to Congress. So they're working on their second report to Congress now, but out of the first report to Congress came many excellent recommendations on funding needs for education, surveillance, research, medications, related to Lyme disease and then many other tick-borne diseases. So, they— several congressmen and women have been working on getting this before Congress, and there's a major bipartisan initiative that is going on out of the Senate first. We have Senators Collins out of Maine and Smith out of Minnesota, and they came together and created the Tick Act. And last week, they had the presentation of the Tick Act before the Senate HELP Committee.

Okay.

They renamed it the Kay Hagan Tick Act. Right. Which, as you may have heard, Senator Kay Hagan, who happened to be from North Carolina, contracted Powassan virus back in 2016. And she never recovered. Um, it was, it's very tragic. She passed away last week. Yeah, about 4 days before this act was slated to go before the Senate Health Committee. In that act, they are asking for about $100 million in funding to do the research and the education and testing, surveillance, like I mentioned, all those recommendations that came out of the report to Congress. So right now, it's been approved by the HELP Committee. It was unanimous in the Senate, and they'll take it to the full Senate soon. They're looking for more co-sponsors. So anybody who's listening who is from Georgia, Utah, North Carolina, We're encouraging them to write their senators and ask them to co-sponsor it, especially those states, because it is bipartisan. We're— our next on our list is some Republican congressmen that we're trying to get to be co-sponsors. And then after it goes through the Senate, there's also a bill making its way through the House. That's where we are with the Tick Act right now.

And how do you see that shaking down? Like, how long before your average person battling Lyme disease is going to feel some of these shifts? Like, how many years do you think we're away from that really impacting the overall journey?

That's a great question. Great question. I feel like already the ripples are starting with the second round of the Tick-Borne Disease Working Group. There's, in addition to, you know, attention on Lyme, there's also increasing awareness on a lot of the other tick-borne diseases. So, we're starting to, you know, the tide is starting now in terms of getting more attention on ticks, on tick-borne diseases. Researchers are starting to to understand that there's so many questions and it's a really important area, and some putting together proposals for funding. And then I would say the nonprofits as well are working more and more to, to focus on education. And as far as actual funding through the act itself, of course the act has to get passed and then it has to get funded in the next budget round. You know, so it's, yeah, 1 to 3 years out. But the attention is absolutely increasing right now. More and more people— there have been more news articles this year on not only, um, you know, Lyme disease but also a lot of other conditions including Alpha-gal syndrome. There was a segment on Dr. Oz about that recently. Powassan unfortunately got in the spotlight due to the senator's passing. And I think, you know, just more and more attention is out there.

What do you see? Where do you see the average Lyme patient 20 years from now? So in the year 2040, what is it going to look like, do you think, to go through Lyme treatment as compared to how it is now?

Well, in our ideal world, there will be a set of protocols that physicians have and they know for dealing with patients, any patient that presents with weird symptoms that are unexplained. And also before that, in 20 years, physicians are going to know what kind of ticks are in their area, what kind of diseases the ticks are transmitting. They have that on their radar and that tick-borne illness is something that is in their language, in their understanding, in their reality. And what, you know, when they have a patient, there's good testing out there for them to actually be able to diagnose but also they understand the symptoms. So if there's still a gap in the testing— hopefully there's not— that they're not able to immediately diagnose it from the test, they're still able to start treating. Yeah, there are effective medications out there to treat that. If antibiotics are still one of the main go-tos at that point, that there's not a stigma around antibiotics anymore. And then also realizing that it can take a while to treat. You know, I had a Lyme literate medical doctor say to me, he said, treating Lyme is a lot like tuberculosis. And we were trained— he was, you know, over 50. He said that seems to be the breakpoint in the medical training is that you understand it can take a long time. We're talking a couple of years sometimes to treat tuberculosis, and tick-borne illnesses can be like that too. Absolutely. And so, you know, I envision that doctors have a grasp of what it's going to take and that there's a whole suite of options that people can use that are effective. So natural remedies, other creative remedies that we haven't even thought of.

Jennifer, where do you get your energy from and your enthusiasm to keep going and advocating? Can you leave us with what is inspiring you at the moment, or an author that you're reading that keeps you going?

So I would say, um, what gets me out of bed is just knowing how much suffering there still is. I— and I live in a small town, and I run into this older gentleman all the time at the coffee shop, and his name is Lloyd, and he has chronic Lyme. He can't get a doctor to diagnose it. He suffers terribly from arthritis, and, you know, he looks like this robust man, but he's very much hurting on the inside. And he said to me the other day, he said, I tell my friends you're the tick lady, the tick doctor. I don't want to always have people coming up to me and telling me about how sick they are, and it's still happening, you know. So knowing that we have good tools and that through things like the Tick Act, we have things, options on the horizon.

That's what keeps me going. Thank you for sharing that with us.

Yeah, the suffering is immense. It is. It is. And I know I was one of the lucky ones, so I am really grateful to have the opportunity to try to make a difference on others and others' with others every day.

Awesome.

Thank you so much for being here, Jennifer. Thank you for the opportunity. I, I'm so glad to have met you and look forward to continuing to work together in the future.

Yes, thank you. Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm gonna read a review that recently came in. This is from Carolyn, and she says, thank you so much for writing your book. It has become the means by which I have explained Lyme to my 4-year-olds. They asked for it to be read as a bedtime story over and over again and love that the mama birdie does yoga and juicing like their mommy. I can't thank you enough for writing this book. It has helped my family so much. You can find it today at Amazon.com. Little Bite, Big Trouble. Disease is contrary to life.

Therefore, wherever disease exists, life must also fight to exist. Good job fighting, Lyme fighters.

Keep it up.

We'll see you next time. LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. Okay, Lincoln? Okay. The medical information on Lion Voice is provided as is without any representations, warranties, expressed or implied. Okay? Okay. Lion Voice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay?

Okay.

If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast.

Got it, Lincoln? Got it.