How ILADS Supports Lyme-Literate Practitioners Worldwide

Podcast Intro and Guest Introduction 0:00

I feel like our mission is catching up with the care that's already been happening out in the community. And so some of the ways that we're expanding on that, again, education is a key. But really, this is where I think some other research that were working on is coming in now. we're embarking on a project that is really just going to be a data mining. We're making anonymous data, I'm terrible at saying that, so that we can gather that and be able to allow and enable practitioners who are researchers to have the full scope of care, the whole scope, of research in trying to figure out what's happening with these patients.

And I think this is where Hi, and welcome to the Lime Bites podcast, where we shine a light on the misunderstood science of Lyme and other vector borne diseases, as well as the truths that many still miss. I'm Dr. Mariah Hinchy, naturopathic physician and fellow of the Medical Academy of Pediatric Special Needs. I specialize in treating chronic Lyme disease as well as other complex inflammatory conditions. In this podcast we break down what's working and what not. We share the facts that most people miss, we challenge outdated thinking, and we give both patients and practitioners the tools to heal smarter.

So let's get into it and change the way we heal Lyma. Welcome to another episode. I'm your host, Dr. Mariah Hinchy. And tonight I am so excited to have here with me and us, the executive director of both iLADS, The International Lyme and Associated Disease Society, as well as ILADF, which is the International Lyme and Associated Disease Educational Foundation. So Sarah is on a mission. She just joined these two awesome organizations last year, and she is helping to fulfill their mission and expand on their vision.

Welcome, Sarah. Please tell our listeners a little bit more about yourself and what made you want to become the executive director of these organizations. Thank you so much for having me. I'm so excited to be, to just have the opportunity to have this, use this platform to share about ILADS and ILADEF. So really briefly, I am from New York, was born and raised in Poughkeepsie and my education took me to North Carolina and took to Florida and then took back into the Washington DC region. The bulk of my career has been in health and human services and mostly in hospice and palliative care.

And I'll tell you, it's a little bit of a natural progression to come into this phenomenal community of ILADS practitioners. It just made it just a a, natural change. But I actually got interested in tick-borne illness through my father, again, you know, upstate New York. My family's all still there.

Sarah's Background and Connection to Lyme 2:53

Grew up in around a five-acre, nice hilly, wooded area that was chock full of ticks. And of course, my father, like many other folks, got Lyme disease and actually has been fortunate. He's had it several times. Most of the time, he's kind of had the typical achy joints, fever, I think only one time did he ever have the bullseye rash. But he was smart enough to know, I'm not feeling right. I am going to my doctor. And every time he is able to catch it pretty quickly until this last time, the last couple of years.

Unfortunately, this is sort of the typical story that we get to hear. He was misdiagnosed or undiagnose for a long time. Symptoms got so bad and finally he's able get the right care from the rate practitioner and got on a good protocol. And I still think years later, he's dealing with the after effects of that. And he certainly is much more, I don't want to say paranoid, but much aware, not just for himself, obviously the whole family around to make sure that they do the tick checks and they wear the appropriate clothing and do all the right things.

Maybe the good that came out of that is it's raised some awareness, at least in the community that they're in. But anyway, but that's really how I got interested in it. And through my professional networks came to iLADS, and actually about a year ago. So I've been there a little over a years now. Just like you said, I'm on this mission to bring iLADS back out into the forefront. We've never gone away, we've ever wavered in our mission, I'm not a quiet soul, so I like to shout things for the rooftop.

So that's what we're going to do. Eyelads and eyelid efforts, you're gonna hear us. You're not going be able to ignore us anymore. Well, that is great and that what is needed. I, for one, am so so happy that you are here and you kind of running the show now. so, I am excited to see what you do I've been part of this organization for a long time, over a decade. it's helped me tremendously. A lot of what I know educationally about Lyme and co-infections, I truly do. I contribute that to my years of going to these annual conferences that ILADS puts on.

So I'm just so excited to see what you do with it. Why don't you share with us your mission Sure. So for those who don't know, iLADS is a non-profit, international, there's the I in iLADS, International Multidisciplinary Medical Society, and we're dedicated to the diagnosis and treatment of Lyme and other complex inflammatory diseases. We promote awareness and understanding of those diseases through science, research, especially education. And we support physicians, scientists, research, all manner of healthcare professionals who are truly in this space dedicated to defining and advancing that excellence in that standard of care.

And it's interesting. I mean, ILADS is really the only nonprofit professional membership organization that's really focused solely on this. We are focused on tick-borne illness and we represent programs and professionals literally worldwide. Yeah, that's amazing. So as far as, you know, one of the things that I think is super important to point out is I know kind of like, and I don't want to say like old eyelids, new eyelids. But, sometimes we get stuck in ways that we think about organizations or how people may have felt like when they've attended a certain conference or whatnot.

And I, think it's just so important, to emphasize what you just said, where like all medical practitioners who want, learn about and support, patients suffering from these infections are welcome. Like this is no longer just like a, you know, like an MD club, this for all different professions that want to help everything from, Health coaches and naturopathic doctors and medical doctors, and osteopathic, doctors in PAs and nurse practitioners and psychotherapists and psychiatrists,

iLADS Mission and Multidisciplinary Care 6:54

right? Like all of these different people who frankly are just needed, you know, to be able to give patients like the holistic, well-rounded approach that's necessary to able heal from this infection. So I would say there's two key points in our mission and you just nailed both of them. I'd like to say, oh, it's all because of me coming in. It's not. I mean, I just came in at the right time and place. Our board of directors for both ILADs and ILADAF have rededicated themselves. it's happening in the community.

So I think ILADS is just now coming along with the Community. And one of the key things that the board really did in a retreat that we had late last year, I say complex inflammatory illness. That's a key thing. I mean, we're We are about Lyme. We're about tick-borne illness. But we realize that there is such a larger capacity to be learned, to train, and to provide to the consumer and the patient community. And I love that. rededication and the other party and you said this, it's all healthcare professions.

It's not just MDs or it is not natural paths. it, is truly comprehensive. And I mean, like bottom line, right? I want my healthcare practitioner to have the full scope of education and training so that I, the patient, can get the best manner of care. And truly, within iLADS, there's been this fantastic conversation that's really kind of just blown up just wonderfully in the community of, if you treated one patient you've treated on patient. So you need to make sure that, okay, so there is allopathic care to be had.

But then there's also naturopathic care to be had, and every patient is going to respond differently. You know this, you see this every day. And I think the really kind of cool thing that ILADS is coming into now is truly incorporating that multidisciplinary or interdisciplinary care, understanding that there are going be components of all sides of it that are gonna be able to help that patient. And I think that's really key. And, I'm really excited to be a part of that. But again, it just happened here at the right time I feel like.

Yeah. I know when you and I have talked in the past too, regardless of what your style of treating is, It's important to understand what other people are doing in the space. So for me, when I'm seeing a patient in Connecticut, my scope of practice doesn't allow me to do antibiotic therapy, like prescription antibiotics. I mean, by choice, I was kind of forced into learning to things the way that I do them. And I wouldn't do that if I didn't think at this point it was, in my opinion, best way. But you know, it's like, I still need to understand all of the other pharmaceutical treatments that are out there.

And I need understand how to combine them and why I would combine then. It's not just for me. So that when I have a patient coming to me and I take their history and see what they've been through, but yet they're still infected and they are still suffering. I needed to be able to evaluate if that person even had anywhere near what would be considered an appropriate treatment because you could be on antibiotics for decades, but if you're not being prescribed the right combinations for the amount of time in the dosages for whatever infections are there, you are not going to get better.

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This is how we move from symptom management to true healing. So join us in pompano beach or from anywhere in the world. Don't get left behind. Register now at lime bites.com. That's L Y M E B Y T E S. Yeah. And we really are focusing on all levels and all types of practitioners, just because, say, if you're an ND, you may also have a nurse practitioner in your practice that can have completely different point of view that will help that patient. I mean, everyone does this. They do this in their office, right?

You come together as a team and talk about the care of a particular patient, And I always love, especially in my hospice days, I would sit back and watch the interdisciplinary team talk. So you would have the medical director talking, but then the nurse and the social worker and counselor and everybody would bring a different perspective. This community is no different. Your ultimate goal is still the best care for that patient. And so everybody's going to bring different perspectives. I know we'll talk a little bit more about some of our signature educational offerings, If you sit in our fundamentals course,

Education Programs and Patient Resources 13:02

you as an MD are going to get a very different perspective than someone who is an osteopath or someone is a nurse practitioner or even a physician's assistant. But I feel like everybody needs to have that minimum bit of education under their belt, even just to be part of that conversation. So I'm so glad that there are folks like you who are doing that and are getting the full scope of care. Yeah, I'm very, very passionate about if you're going to treat something, you really need to understand the basics.

You have to know the foundation, the pathophysiology, and just the basic mechanism of actions of everything to be able to figure out how to treating your patients because this is very different in different individuals. Can you share with us some of your, like, what steps is iLADS taking to improve the understanding of tick-borne diseases in general? And, you know, What research programs do you have going on in advanced education and things like that? That's a great question and really is the crux of why we exist today, I feel like.

I mean, first and foremost, we recognize the pivotal role that education has in the medical community. So again, our ultimate goal is for all healthcare professionals to leverage all the information that we can possibly lean to them and make a positive impact on their patients' lives. And so one of those key things, I think, that's sort of a sweet spot for Eyelids, as I mentioned, our vector-borne illness fundamentals. That's a one-day course. We offer it once a year at our scientific conference, and it's set up in different modules.

It runs the It runs the entire scope of identification of all the ticks that are out there, all of the different diagnostics, testing, different kinds of treatment, including herbals and pharmaceuticals and all different components and doing some grand round-style case studies. And then the other signature component that I think is a wonderful offering that ILETS has is our Physicians Training Program. And this is actually something that I can, I'll get off on a tangent talking about this. I want to really blow this out of the water because I think this really, again, where the sweet spot that ILADS can have.

And calling it a physician's training program might be a little limiting. It's a whole course of shadowing a practitioner and there's learning, there is online learning. There's Grand Rounds style, webinars, and then there, like I said, just hands-on learning that you get to have with the practitioner. And we have NDs and MDs that are our preceptors and I want to be able to expand that to many more different levels of care. Because again, like a nurse practitioner is going to get a wonderful perspective that's going be very different than say an MD, but they shouldn't miss out on that opportunity.

So those are really our two key signature offerings. But then beyond that, we offer a whole host of webinars on demand learning. We do seminars and then of course our scientific conference that we offered every year. So far, we've talked about the professional avenues. I know that ILEDS has quite a following by laypeople and patients. So when you're talking about these webinars, are these things that patients would have access to? That's a great question. First and foremost, I do want to make clear that we are a medical society.

So, but that doesn't, I mean, we're a unique community of members that are successful only because of the care that they give to those patients. And so we really haven't make an effort and I'm expanding that effort to reach those patient, reach these consumers and really let the webinars that we offer. We offer at no cost. to the patients we offer on our website, a whole host of really just FAQs and articles and all kinds of different levels of learning. And I would say that the biggest key that we do offer, and I want to be able to expand on this, we're starting to do some collaborative efforts with other organizations that already have some fantastic online learning, so ILADS doesn't need to reinvent the wheel.

Let's just share to a broader audience some of these webinars and some these virtual offerings that we have. We understand that the patient population is desperate to seek answers. I mean, if you've walked in their shoes, you understand the challenges that they have and they are They're probably even more robust in their research than some folks in the medical community because they're desperate to find answers and they are desperate too, to seek out a practitioner, hopefully an ILADS practitioner to be able to get those answers.

So they come to us organically and we want to able offer at least some basic information. But on the other side of that, I want to be able to offer some resources. So no, maybe we don't have all the answers for them, but I don' want leave you high and dry if you're coming to us asking, well, how do I pay for some of this treatment? Or what's out there in my area to find a provider? those we can help with as well. And I want to be able to expand on those kinds of opportunities. We have a provider search on our website.

If you just go to ilads.org and there's a little provider-search button, you can search by geography, by clinical background. You can make that a more robust site to offer. It's obviously a great benefit to ILADS members, but the bigger benefit is to the consumer, and then in addition, be more educational opportunities to So in addition to these in-person conferences for a medical practitioner and with the physician's trainings, and I know there's a fellowship program in the works and all of that, how additionally does iLADS work with medical community to enhance patient outcomes, better outcomes for patients in need?

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Collaborations, Global Reach, and Expanded Focus 20:18

And now I'm making them available to practitioners and patients everywhere. Lymecore Botanicals, herbal medicine you can trust from a doctor who lives this work. Learn more at LymencoreBotanicles.com So I'm a huge proponent of partnerships and collaborations. And just like I mentioned, I don't want to reinvent the wheel. There's some phenomenal education happening out there in this community. No, iLads has not cornered the market on that. We have obviously some great offerings and I feel like if we could mandate all practitioners take it, but I would also say, again, if you're trying to get the full education to give the best care for the patient, you need to seek out all manner of education.

So I feel like ILADS is, we have this ability to be able to share education and opportunities that other folks are offering and be to showcase ILEDS members who are doing those kinds of educational opportunities. Again, it's all boats rise with the tide. And the other part of the collaborations, I mentioned some other organizations are doing some great webinars, some greater education. We're working with Project Lime right now to offer some monthly webinars. There's a series that they do that we are helping to promote, and again, offer to a wider audience at our scientific conference in 2023. Again we're going to work with them in 2024. We're working with MAPS, which is the Medical Academy of Pediatric Special Needs.

It's a phenomenal group that focuses on, gosh, I would say infant through adolescence that we've been able to partner with and we're doing it again. I want to be able do more of those kinds of partnerships with other groups, be it specific to integrative medicine, to a specific state or specific region, or However, we can collaborate. The ultimate goal is to be able to get that education and be to able get the right care to that patient. So, any which way we're getting the word out and being able offer more opportunities, then I think it's a win-win.

Yeah, I love that iLads is partnering with MAPS, my other favorite organization. And I mean, it's just great, you know, instead of instead, of everyone trying to like, kind of do their own little thing. It's, just like look at all these stages, right? That like it, like MAPS is just another stage for iLADS, and iLaDs another, stage from MAPPs. And you, know again, its really like getting the education, getting, the information, Getting the message out there, You know and you could have, people that are new to Mapps, And they're there because they want to learn about autism spectrum disorder, or pans and pandas, Or you fill in the blank with like the special needs topics.

And it's like, you know, they might not even realize at first, like how much of a role Lyme, Bartonella, mycoplasma, all of these infections actually play. This interaction between just, for example, these two organizations is huge for spreading awareness. So I just love that. Absolutely. And I'm always open to new suggestions and new conversations, because you know, it was a happenstance conversation that has now led to a wonderful partnership. We're doing the same thing in North Carolina with the North Caroline Integrative Medicine Society.

Same kind of thing. It's just a conversation, that's leading to there's some great synergy to be had. how can we help each other to be able to help your members, help our members and help the clinicians who are not members yet of either organization? I mean, that's kind of the key, right? You want to not only be to take care of clinicians providing the care who our ILADS members or MAPS or both, but beable to reach the ones who aren't. I always call them iLADS curious, but you want to take that initial step, take an action to do some education and then realize what a phenomenal community this is and how much we have to offer.

And so as the name says, iLADS takes this a step further globally. So can you comment a little bit on how iLaDS is affecting the global lime? This blows my mind. So the Eye and Eyelads, I mean, hand it to the founders of the organization from day one to make this international. And it's amazing to watch this grow. I'm mean we're in 21 countries, including Canada and the UK, and we are constantly getting new members asking questions from all over, from Turkey, Iran, all of Africa. And they're having the same issues, I think, that maybe the U.S.

was maybe 20 years ago. Their governments are fighting with them that Lyme doesn't exist or, you know, here's the protocol to use and you get two days of antibiotics and that's end of the story. And the clinicians themselves are desperate for answers. So they come to ILADS to be able to get that education, to get that training and so really where we sit it is again it all comes to to the the land of education I feel like we offer again our scientific conference but we also this year in April of this here we're offering a European conference in Munich.

to be able to come to closer to those practitioners who need that. I'm hoping we are able do that on a more often basis. Thanks, COVID. But I think the last international conference we had was 2019. So 2019 to 2024 seems like a big gap. We're going to try to do a better job of getting out there more. But then in addition to that, this is really where ILADEP, the educational foundation, can come in because we offer grants and scholarships to a lot of international folks so that they can make it to the conferences, so they the online on-demand learning and that they can actually come to the US or Canada or wherever they want to be able to participate in the physician's training program or fundamentals.

There's an ongoing dialogue that we want try to meet those needs of folks literally worldwide. I want be to do a better job of reaching them and being able serve their needs as well as those in Yeah, that's great. So and then also just recently, right, iLADS has expanded from just focusing on tick-borne or vector-born disease, and now they've expanded into looking at most of the other chronic complex inflammatory diseases. So obviously, you know, this is going to include COVID and mycotoxin illness and other environmental toxicants that can cause ongoing inflammation.

Tell us more about that and kind of what the plans are. So that is a key component, I think, of ILAD's moving forward, is that inclusion of that language of complex inflammatory illness. And again, this is the non-clinician talking to the expert here, right? The public is now understanding that the microbiome, the gut microbiomes, hey, that might be something that affects it. You've been doing it for years. This is not new. Realizing that, you know, again, mold in the home and some of these sensitivities that these patients have, this is a not a new moment for folks.

And I feel like IELTS is now catching up with, our mission is catching with the care that's already been happening out in, out the community. So some other ways that we're expanding on that again. Education is the key. But really this where I think some research that were working on is coming in now. We're embarking on a project that is really just going to be a data mining opportunity for practitioners. We are making anonymous data, I'm terrible at saying that, so that we can gather that and be able to allow and enable practitioners who are researchers to have the full scope of care, the whole scope research in trying to figure out what's happening with these patients.

And I think this is really where that going beyond Lyme disease, and it's an interesting transition, I thing, for this organization because we do still focus on tick-borne illness, but as you know, it is so much more. And we are just scratching the surface of that. And actually, one of the ways that we are showcasing that is in our fall scientific conference this year, our working title is redefining Lyme disease and the fusion of science and practice. So we have our roots. We're not straying too far from them, but we're widening that world.

and being able to incorporate so much more into the care. And I'm sure there are patients who are, I mean, you know this again, who were dealing with so many things that you just have to systematically handle each symptom, handle every component one at a time. This is complex, complex inflammatory illness. I means, this is where it originates, where this comes to. Again, i think iLADS is in this wonderful sweet spot that through presentations, through seminars, the webinars that we're really able to tap into the expertise of you, you guys that are out there in the community doing that work and sharing it with other folks so that all patients can really benefit from it.

Yeah, no, I think it's great. I'm so happy to hear this because, you know, from all of our conversations, it is like, Lyme and co-infections are an inflammatory disease and that inflammation is going to, break down all the sort of systems of the body and create different symptoms in different patients. But then also like all these other things that we have going on in the world, like for example, COVID, mycotoxin illness, toxicants, just in general, they're going to all increase the inflammation, right?

And increase this sickness. And it's like, well, of course we can't treat the underlying tick-borne disease without addressing all of these other things. So I think it always, or at least for several years, it has been part of iLADS. I just think that it is not necessarily been in the titles, It's definitely always been there. And again, most of what I know even regarding those subjects are content that I've learned from attending these iLADS conferences and webinars.

Conference Experience and Research Standards 31:08

Well, and it's funny, I think iLaDs is the, we are the epitome of just working quietly behind the scenes and we've been doing it for years. It's not new, but I'm new and I want to be able to shout it from the rooftop. So no, this is folks who've been doing this for years. I mean, you, who have been an iLads member for so many years have come to conferences, have experienced that education. No, it's. Well, darn it, we need to let more people know that this is happening. Stop being so quiet about it.

Yes, I agree. So what can someone expect, like, let's say, attending the annual scientific conference? What would a medical professional expect to leave with? Exhaustion. from so many days of so, many things. And again, I say that as the non-clinician and going to my first conference last year, but now truly, we launched the conference. We always have on the first day that fundamentals course and it's set up into modules and actually teasing it out a little bit, We're gonna try to transition into more of a, fundamental fundamentals and an advanced fundamentals.

So we're going into that next stage of fundamentals for folks. And then, and while we do that, we have other tracks going on at the same time on Thursday, Friday and Saturday and Sunday of this year. So it's multiple days, multiple tracks. You are saturated with information by the time you leave there. And it is darn near impossible to get to every session. Of course we record everything and everybody who goes to the conference gets the opportunity to have those recordings and be able to listen to them.

But I think maybe as important, not more important but as with the actual sessions and the presentations, is the networking that everybody gets to do. I mean you're in the trenches day to day, you are seeing patients, but it is so good to a step away from your office, as we all know, take a breath, a breather, and network with colleagues, ask the tough questions. And I remember walking down hallways and actually hearing Well, hey, I've got this patient that they're presenting with this, this and this.

I'd be treating them with, and what do I do? And getting three or four perspectives just in a little circle of folks in between sessions. So there's a huge networking component that I think can only happen when you come together in person. And we all kind of stop at that until we actually show up and realize just how important that is for ourselves and for this community. And then in addition, it's great to be able to have the exhibit hall where you've got some fantastic providers of all kinds of products and services that serve this community.

And here's where, again, I think whether you in your practice decide to use a particular product or service, It's good to know what's out there. There's some really cool things that are out Maybe you don't know about it or you're curious about to learn. This is the opportunity to do it. I mean, everybody is there for one reason, to to share and to grow. And so what a great opportunity. You don' have to leave with anything, but you can definitely be able to get to have all that information. And just getting the business cards of colleagues, getting, again, the networking, and of course the all-important CMEs.

We want to make sure that we give you all those things to go home with. So I'm not kidding. When you go for that, you're exhausted. It is what a phenomenal opportunity, I feel like, to get all that you can. And I will say, I think this past year we had as many non-ILADS members attend the conference as ILADs members. And that was a key important point that I brought home that we still have some room to grow. So I want to encourage obviously the ILads members to come year after year. Submit an abstract or presentation.

It's a great opportunity to showcase your learning. If you have a publication, if you're doing research, and if have something unique, absolutely showcase that with this group. But also share with those non-ILADS members. That's, I think, the more important thing to be able to get those folks, you know, to those butts in the seats to learn and be to share and grow this community. There's definitely a saturation, but I think it's a healthy saturation. And what I say to my friends and colleagues who are new, it is like learning a new language.

But once you learn it, then you get it and you understand it. You can converse in it right? But in the beginning it can be overwhelming, just like anything new is. So I think coming and coming year after year, you just absorb everything. And then the exhibit hall is wonderful. Whether you choose to use certain modalities or not, Lyme disease patients are some of the most tenacious, resourceful patients. on the planet. And they do just as much, if not more research than their clinicians do. They have a lot of questions.

Most of my patients come in with a notebook with several pages of question for their appointment. It's so important to stay up to date on all of the different modalities and adjunctive therapies and testing. everything else that's out there. And I think that you guys do a really great job of including all of these industry experts, but also vetting them because there's also some things out that aren't necessarily on the up and up. So it's just nice to have that sort of comfort level that like, if they're at ILADS, they were there for a reason.

And I'll tell you one interesting thing. Going through this process last year, the program committee that vets the abstracts and all the presentations that come in, I mean, we have a pretty rigorous process. I'm not going to lie. It's pretty impressive. What's interesting I found is folks will submit abstracts for research that might not be new, and the program committee will really scrutinize that and go, well, what's new out of this? We already know this. We've had this presentation already, or they can find that somewhere else.

we need to see what is new and what really is. A cutting edge is kind of here. a little overused, but it does sort of fit in this instance. And it was wonderful to see that process like, oh yeah, they're really taking this seriously and they pour over those abstracts. Many times we would go back to the potential presenter to go, okay, we need to get more information. We need get updates. What new are you putting out there? We want to know what makes this appropriate for this topic. And it really is, I think, what kind of sets us apart and why we actually call it the Scientific Conference.

There's lots of great education out there. We offer webinars, but it might not be appropriate for the scientific conference. So it's a wonderful process to actually sit and wade through so that really, yeah, we're putting forth is really the best. That's great. So also though, like, ILADS has treatment guidelines, right? We haven't even talked about the treatment guidance. And I forget who the first author was, but I know Dr. Back in the early 2000s, or was it late 90s? Late 90s, early 2000s. And I know that this has been revised and whatnot, but how does ILADS work with researchers and medical providers to kind of like keep those research guidelines up to date?

So that's a really great thing. I think this was one of ILAAD's shining stars. So the most recent one, ILAAAAD guidelines that are out there are from 2014. Dan Cameron, Betty Maloney, and Lynn Johnson. are the authors of that one. And they, you know, reading the historical components of this, that was some effort to be able to get that out and share it with the public. It is still up on online's website. Actually, we are looking at the potential of doing an update on it. I mean, 2014 was 10 years ago now, and the care for the patient has progressed since then, or has it?

Guidelines, Research Updates, and Closing Remarks 39:28

This is one of the things that they're really wanting to look at is from what's in those guidelines, is that still the standard of care? Let's scrutinize that again. And so we're just starting to how we want to do it, what do we wanna look at. The board is really taking a working, you know, roll up your sleeves and really try to look that. So, coming back to the research question of that, I mean, the guiding principle obviously is found in those guidelines, but we wanted to make sure that the results that's out there And the research that folks are doing right now, can it be used to update the guidelines?

Can it used be able to further that patient care? There's some wonderful research happening. ILADS members are going it, non-ILADs members doing it. And I actually want to be to showcase that research and be beable to offer that to not just members but to the the public at large. So if you go to the Eyelids website, you'll see just a really robust website full of publications and research and such. And I want to be able to curate that in such a way that, A, makes sense to a clinician as well as the patient consumer.

Just like you said, they're more tenacious in doing the research, so we want be to able offer what we have out there. Again, showcasing those Eyeliids members. through our website, through a monthly newsletter that we send to all manner of folks. We offer that to the public as well as to clinicians. Be able to show, here's what's happening, Here's some research, early feedback on this. Here are publications, and just offer this smorgasbord of learning through research. And the guidelines are a key component of that.

Yeah, they're very helpful. It was one of the first things when I joined iLADS that I, it was like I had it printed out and kind of like on my desktop as my little Lime Bible. Yeah. So, and ilad.org is the website. ilads. org, actually, forward slash events. And you can see, you see all the information. We still have the submit abstracts up. so you're welcome to, if you are a practitioner and you have a topic you want to submit, send that and we'll hopefully get registration up and the next couple of months, which will of course have, you know, the preliminary program and agenda and some of the things that we're offering.

Wonderful. Yeah. So Sarah, anything else that you would like to share with our listeners? So I think the one big thing that I want to be able to is from the ILA-DEF side, this is again how we help make sure that practitioners can get education, that research is happening, and that we can offer opportunities to the patient, to consumer, the public. It's through the Education Foundation, it's a 501c3. All donations are welcome, tax deductible. We are always looking for grants to get to organizations so that they can grant out funding to folks.

And we're expanding the scope of that as well, so be sure to go to iladef.org. or go to eyelads.org and there's an eyeladf button you can click right there. But that's really, we don't receive any government funding. We rely solely on philanthropic support and every donation counts, I say from the penny on up to, you know, work. We're welcoming, you know, the million dollar donation. So anybody, anybody ready for that? So, but that, that really is a key to the success of, of ILADS and ILADEF is being able to get those donations from folks to be able pay it forward.

Absolutely. Anything else you would like to share? Always go to ilads.org, go our social handles, iladz.lime, or on Instagram or Facebook. We're always wanting to grow this community. I humbly offer myself, if you have a question, If you had any kind of comment or suggestion, I'm always looking for collaborations and partnerships. Always feel free to reach out and email me, squillen at ilades. org. past year is just a tiny example of all the wonderful things that are yet to come. I'm sure it is.

And thank you so much for joining us. It's always a pleasure to speak with you. Well, and thank for offering this wonderful platform to be able to share not just iLADS, not only me talking, but share fantastic practitioners and experts and wonderful, wonderful opportunity. Thank you for doing this. Yeah, it's my pleasure. I'm on a mission, like I say, to talk about Lyme and vector-borne disease to anyone and everyone who will listen to me. Thank you so much. Absolutely. If this episode gave you an answer, brought you new insight, or made you think differently, subscribe to the Lime Bites Podcast and share with someone who's ready to take control of their healing journey.

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