061 How Help Funding For Lyme Disease Treatments

People I reach out to on social media who I say, hey, would you donate your supplements? And they say, oh, I'm in such a bad way and I can't, I don't know. And I say, hey, here's the link for the grants. You know, you can see if you qualify to get a grant. We can help you. Those people's response, I'm so I'm in such an awesome position to be able to offer help for people. I know what, I know what that is. I've been there. So that I can help people because of this program, to me, that's, that's awesome. And I mean, that's not even handing somebody money. That's hope. Yeah. So that's kind of my favorite thing at this point.

Congratulations, Lyme Fighter! Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, educate, and encourage you on your Lyme journey to wellness. Together we will fight. Together we will heal. Together we will live. Here are your hosts, Aaron and Sarah Sanchez.

Sanchez. Sanchez.

Sanchez. Hello everyone, welcome to another episode of Blind Voice, where fighting is a mindset, healing consists of choices, and living is the outcome. Every week we talk about fight, heal, live, and today's guest is definitely a fighter. She has been dealing with chronic Lyme for at least 10 years and neurological issues for that long as well. Even though Stephanie doesn't have a lot of physical strength, she has done something amazing with her recycling program. And what this is designed to do is to help people to go through treatment. And why we decided to speak with her today is because we love her fighting mindset. This is something that each one of us can fight as well. Now let me explain. When you give, it is extremely good for you. It's extremely good for your heart. It's extremely good for your spirit. By giving others hope, it produces hope in yourself. And I think this would be a great opportunity, something that easy that any one of us can do. All the details to get a hold of her are listed on the show notes. So feel free to look those up, or you can go to Line Voice and you should be able to find that information there. Hope you enjoy.

Wishing your doctors could communicate and come up with a cohesive plan specific to your medical needs and genetics? At Invita Medical Center, they offer a team-style approach, giving you the opportunity to heal. In addition to a commitment of providing radical love and care for their patients, They are strategically located in sunny Arizona because Arizona offers the best integrative medical laws in the country. Call today to speak with one of their patient care coordinators. You can find them online at Invita.com.

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Welcome, welcome, welcome to another episode of Lyme Voice. We have very special guests with us today from the Ticked Off Foundation, and if you are not familiar with the Ticked Off Foundation, they're an incredible organization that is focused on helping adults in crisis from Lyme and other tick-borne diseases. We'll be talking with Stephanie Winning, and Stephanie developed a program called Recycle for Lyme and is partnered with the Tick Off Foundation. And the beauty of this recycling program is that anyone can participate. Even if all you do is spend your money on supplements, you can send in those supplement containers and funding will go to help other patients. And so we'll be talking more about that. So Stephanie has been battling central nervous system Lyme disease for over a decade. And she developed her own personal recycling fundraiser and then ultimately partnered with Tick Toff Foundation to create Recycle for Lyme. So Stephanie, tell us a little bit about your journey with Lyme and how in the midst of all that you came up with a recycling program. It's just amazing to see what you were able to do while going through such an intense struggle.

Well, thank you. I got sick when I was 26. That was 2006. And when I first got sick, I thought it would be a quick thing and I could get back to my life. I was actually installing hardwood floor at the time, but instead I became rapidly more and more disabled. I had all kinds of bizarre symptoms. I actually went blind in an eye for a while. It was very exciting times. I happen to be very fortunate to have family who supported me, especially my mom. But after she quit her job to care for me and she remortgaged and she spent her life savings and she maxed out all her extensive credit— oh gosh, yeah, we, we still needed help. And, uh, I have a large family and some of them helped me as they could, but nobody could compete with the demands of my care. We actually stopped counting many years ago when my debt reached $250,000. And I have always been independent and searched for solutions, and I was pulling my hair out, and I looked for all kinds of crazy fundraisers. We've done, like, selling coupons and all kinds of stuff. So I spent a lot of time online, being not very mobile. And in 2014, I found TerraCycle, which is a recycling company that's out of New Jersey that awards cash to charities in exchange for traditionally unrecyclable items. While I didn't have a charity at the time and I didn't know anybody who did, I absolutely love recycling, and I loved how much easier it was asking for trash from everyone who wanted to help me. Yeah, so by 2016, I had exhausted every single lead I had on a charity that offers grants to Lyme patients for treatment, and I was really frustrated, and I was about to scrap all of the collections that I had going. I mentioned it to my mom, and she assured me that I had everything in place and that I should just keep looking. So I did. And I reached out on Facebook asking if anybody knew of a charity that donated to Lyme patients for treatment. Someone mentioned the Ticked Off Foundation, and I'd never heard of them. So I went to their website and I called their number, and after 2 rings, miraculously, somebody answered. And I actually had reached Greg Kirk, the founder of Ticked Off Foundation. When I explained the program to him, he was really excited, and he said he had just actually officially started the charity. He had been doing the music fest previously, but he had been looking for additional ways to fund grants for Lyme patients in crisis. Yeah, right in that moment. And, uh, after another logistics phone call, Recycle for Lyme was born.

Wow.

Yeah, we started collecting for two programs. So the first was Garnier's personal care packaging, which is hair care, skin care, and makeup packaging, and Tom's of Maine oral care and deodorant packaging program. And we actually launched on my mom's birthday in April of 2016. These programs are fantastic, and anyone who bathes can help. We got salons involved.

If you bathe, you qualify.

Exactly. We got, we got salons to help, we got dentists to help, I bugged everybody in my family. I told people, hey, when you think of me, think of trash. And they were, you know, it's my humor, they were entertained. And then people nationwide signed up and it was great. And but we wanted more. Yeah, yeah. If there's any single waste stream that Lyme patients create, we all know it's pill bottles, vitamin bottles, supplement bottles. I had at one point saved them because I saw all those videos, you know, videos that people make that they save all their stuff and then they dump them out on the floor.

Yes.

Yeah, I thought that was great. But then I kept having so many that I was like, oh, this is dumb. I'll just recycle these. But that was many, many years ago. Anyway, in April of this year, 2018, we were really surprised to find that Twin Labs was offering exactly the program we were waiting for. And with the addition of their vitamin and supplement packaging program, Recycle for Lime growth has exploded. Hundreds of patients and doctors and health food stores and supplement reps and businesses are collecting all across the continental U.S.

Explain how simple it is for people to use, because what's it The beauty of this is it's simple to do, even if you are homebound. All you have to do is mail it for free, like you're not paying shipping, you're not paying anything. It is so easy for anyone to use.

That's correct. So all you have to do is go to the website, you sign up, you can see which programs are available, you can click on them and download a PDF and print that out. I have mine posted in our bathroom, one in the medicine cabinet for the oral care and deodorant packaging program, and the other behind the closet door for the hair care, skin care, and makeup packaging. And I post those flyers so that everybody in my house knows what's recyclable. Nice. And then when we accumulate the required weight, I, I'm the big generator of vitamin and supplement packaging in this house, so I take care of that by myself. But when we accumulate the required weight for the hair care and skincare and makeup packaging, it's 11 pounds. For the oral care and deodorant, it's 5 pounds. And for the vitamin and supplement packaging, it's 2 pounds. You just put that in a bag and then put that in any old box you have laying around. Our Amazon boxes have never been happier. They come in the house, they go right out.

Nice.

Yeah, and you just want to package it and make sure it isn't shipping— I'm shipping, sorry— it isn't dripping, because if they drip, they won't ship.

Ah, okay.

Yeah, but other than that, all you do is you put it in a box and you take it to your local UPS drop-off. The label— I'm sorry, I skipped a step. You have to go on the website to request a label., and then we will receive that, generate you a label, and email it back to you. You can print that out, put that on your package, and show up at UPS and drop it off. And that's it. It's totally, totally free. And so many people are approaching their doctor's offices, for instance, and saying, hey, will you do this? And doctors are signing on board in droves to help. And the amount of vitamin and supplement packaging, if you can imagine what you create and generate as a patient, think about a whole doctor's office of people. I mean, they, they make pounds and pounds of pounds. And for the vitamin and supplement packaging program, every single pound is a dollar that funds a dollar in grants for Lyme patients in crisis.

So it's— that's incredible.

It's a huge impact, and it's something that you were throwing out anyway, and your trash is someone else's treatment. It's— it— to me, it's profound. I never really imagined that in the shape that I'm in, I would be able to affect the kind of change that I'm seeing happening right now. Wow. I, I feel really— I feel really blessed to be involved.

Sounds silly, but no, it doesn't.

I talk to people every day that are just like, this is awesome. And I'm like, wow, because initially when we did the personal care packaging and the oral care, I thought anybody who bathes can help, it would go crazy. And the growth that we're seeing now, it— like that initial startup pales in comparison to this. I mean, so many people across the country are collecting and then encouraging other people to collect, and they're sharing it on social media. It's just, it's growing so quickly. I can't— I, I get to— I get the benefit of seeing all the social media, so yeah, it's mind-boggling to me.

For nearly two decades, Invita Medical Center has been leading the way with 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.

Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm going to 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 ask 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. I mean, we all spend so much money on supplements and you're right, you're just throwing it away. I mean, it's benefiting your body, but the fact that something else could come from that. It just creates more— I don't know, it's a very simple way to create hope for other people. But it's more than that because it's just turning— I don't know, I always love situations where something that's really sad and unfortunate, like spending hundreds and thousands of dollars on supplements can be at times, to have that turn out to something good. That's just so exciting to me.

Yeah, I've actually physically experienced holding supplement containers and them getting emptier and emptier and just the stress of knowing I had to replace it. And where was the money going to come from? And now I hold them and I get excited when they get lighter. Yeah, this is going to help somebody else. This is great. And not only does it help patients, but it's also helping the businesses who are participating because they're using it in conjunction with their promotions. And saying, hey, if you bring in your Recycle for Lime donation, we'll give you 10% off or free supplement, or they have all kinds of different promotions running. And then the, just the sheer support for the program has been absolutely staggering. And on social media, people from Canada and people from the UK and people from Australia have been reaching out and saying, Hey, can we do this? We want to do this. And I cannot bring myself to tell them no. And so instead of telling them no, I took a look at it and TerraCycle exists in all of those countries. So, wow. Yeah. So what I'm doing currently is talking to charities in those countries that specifically charities that fund grants for Lyme patients for treatment, so that those people reaching out to me now can do Recycle for Lyme in their countries.

Wow, that's so cool.

Yeah, I'm, I'm pretty excited about it.

Oh, that's so incredible. Wow. Stephanie, tell me one of your— I know you probably have a lot of them, but you guys, the Ticked Off Foundation, is very hands-on and really helps to to meet people where they're at. And so sometimes I know you guys pay utility bills and sometimes you help fund some treatment level different things. Tell me about like one of your favorite stories or like something that you've gotten to see come to pass because of the recycle funds that are coming in.

I'm immediately thinking of just someone, people I reach out to on social media. Who I say, hey, would you donate your supplements? And they say, oh, I'm in such a bad way and I can't, I don't know. And I say, hey, here's the link for the grants, you know, you can see if you qualify to get a grant, we can help you. Those people's response, I'm in such an awesome position to be able to offer help for people. I know what I know what that is. I've been there so that I can help people because of this program. To me, that's, that's awesome. And I mean, that's not even handing somebody money. That's hope. Yeah. So that's kind of, it's my favorite thing at this point.

You're right. It's so much bigger than just money. In a sense, you're handing them hope. And I know at times, I mean, we've been on this journey. I was sick for 17 years before we even figured out what I was dealing with. And there have been so many times where we needed help. And when someone is able to help you financially, but when they're able to come alongside you and just say, hey, we see where you're at, like, that is validating. And I feel like that's what your guys' program does because it meets someone where they're at. And Aaron and I are constantly looking at the Lyme community and saying like, okay, how do— where are the needs and how do we fill them? Like, what are the biggest needs? How do we meet those needs? And it almost always comes down to funding.

Yeah, that's been my experience. And I couldn't imagine— I've— there's so many charities out there that offer funding for testing. And research, and that's valuable and very needed. But there's such a gap for people who need to pay their electricity bill or are going to get kicked out of their house or actually living in their car. Yeah, right. Because, because they're so sick and they can't work and they can't get any help and they don't have families that— there's some people out there that don't even have families that believe them. Right. And to be able to help those people and afford those people, if they can, a way to help themselves and others. I think that that's empowering. And it— I could say, I don't, I don't know how to say this, it, it could afford you a will to live if you're too discouraged. I mean, myself, I always was someone who I worked and I took care of other people. And to not suddenly find myself in that position where I couldn't do that anymore was one of the most crushing things that I experienced with being so ill. So even if you're so sick and you really can't, you can't drive, I don't drive. You can't drive and you can't drop the package off, can't even get out of bed to get a box. That's okay. You can still be incredibly and intensely valuable by making a video or sharing a post or telling a friend or telling your caregiver, hey, don't throw those vitamin bottles out. They're getting recycled. And better yet, they're getting donated. And that's another thing that I love. That's huge. Did recycling— could recycling get any better?

No, it's just it. Yeah, it's amazing. I love it. I love it. Thank you so much. Okay, so where do people go to order their labels and get signed up? What is that website?

So it's one page on the Ticked Off website. So it's tickedofffoundation.org/recycle-for-lime, and the signup form is on that page. The label request form is on that page. All of the PDFs for the collection programs are on that page. There's also our social media. We have a Facebook page, a Facebook group where we meet and talk and share strategies and ask questions. And we also have Twitter and Instagram. So anywhere you are, we can meet you where you're at, as you so eloquently said.

Awesome. And if anyone has a company or wants to get it like set up with their physicians that they see, do they contact you guys directly? Like, do you guys have a commercial kit or a physician kit? Or how does that work? Or is it very grassroots? You just get them to comply? What's the procedure for that?

Hi, I'm Stephanie. I would be doing that. I've done all the outreach. If somebody's not comfortable approaching their doctor who they see on a regular basis and saying, hey, I want you guys to do this in your office. That's totally fine. They can give me the information and I will approach their office. You generally want to talk to an office manager and make sure that the collection is acceptable and, you know, that they have a place that they can put it in their office. And we also have some, a couple materials that they can include in emails and send out to their patients because Recycle for Lyme is nationwide. It's the continental US. They can even send this information to their whole email list. Anybody that says, for, you know, for example, order supplements for them, they, their patients can do it where they are in the continental US.

Oh, so perfect. Awesome. Stephanie, thank you so much for being here with us today, and we are so excited about what you're doing and are looking forward to coming alongside you guys.

We are I'm so excited for your help. This is great. Thank you very much.

Wishing your doctors could communicate and come up with a cohesive plan specific to your medical needs and genetics? At Invita Medical Center, they offer a team-style approach, giving you the opportunity to heal. In addition to a commitment of providing radical love and care for their patients, they are strategically located in sunny Arizona because Arizona offers the best integrative medical laws in the country. Call today to speak with one of their patient care coordinators. You can find them online at Invita.com.

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. 'Kay, Lincoln? 'Kay. The medical information on LymeVoice is provided as is without any representations, warranties, expressed or implied.

Okay?

Okay. LymeVoice 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.