Covering the Cost of Lyme

Welcome back to the Heal podcast. This is Mimi and today we have Carrie Perry and she’s the president of Sam’s Spoon. Sam Spoon’s foundation was created in 2018 to help defray the out-of-pocket expenses incurred by families affected by chronic medical conditions from Lyme disease and co-infections. Carrie is also the host of the Chick to Chick podcast and the Lyme summit, TIck Talk, which is on May 22nd, 2021. To get my detox for Lyme checklists, go to lyme360.com/detoxchecklist.

Intro and Sam’s Journey with Lyme

Mimi: Carrie, thank you so much for coming on today. I wanted to talk to you about your experience with Lyme and with your daughter, and then what you’ve done with it since then. And so let’s just, I guess, start out with that. How your daughter’s experience was with Lyme.

Carrie: Well, thank you so much for having me on. I think it’s always valuable to have some sort of a platform to talk about Lyme. Your podcast is amazing. You have great people on so I’m flattered that you’re having me on to talk about this. I was one of those moms that knew Lyme existed and knew ticks existed, but I never took it very seriously and my children love the outside, we all love the outside, so Sam was bitten somewhere between soccer practice and being a person who loves to go on hikes. I truly don’t know in order to she and she was in her junior year, it was very late going into the middle of December, so we’re talking about very late fall here in the East coast. She had a three day pounding, headache, neck pain, and just complete malaise. She had a bit of a temperature, but it wasn’t a crazy fever. It’s just similar to what so many people talk about. Like, “I just had this I-don’t-feel-good-itis for a short period of time,” and then the wheels fall off and you have no idea how to make the connections.

Like so many people who go on to feel chronic in their illness because doctors aren’t listening, that’s exactly what happened to us. I am very much of a person, I have a bit of a journalistic background and so I ask a lot of questions. I’m trying to figure things out and everywhere I turned, no one had an answer for me. Eventually, it was, again, with so many people who have a tick-borne illness are told, “It’s all in your head, this is kind of your fault because you’re not sleeping well, you’re not eating well, you’re overdoing it.” The list goes on. We ended up through me constantly talking to somebody, anybody who would listen, we found a friend of a friend who said, “You really need to go to this Lyme doctor.” I’m like, “What’s the Lyme doctor?” Through that, we found this amazing functional medicine practice that is literally six miles from my house that I really drove past thinking, “Oh, what do they do?” We ended up meeting with first round was DO and she gave us antibiotics for Sam and then it went on to be 18 months later that we were with this DO and she really was trying everything, but nothing was really working. By this point, Samantha is in college. She started her freshman year at Penn State and this girl by the end of college, maintaining a 3.8 As a pre-med in Spanish double major, she could hardly function.

Mimi: I was just going to say, “How did she do that?” Just even the reading and the memorizing.

Carrie: Yeah. I really don’t know, Mimi, because she could barely get out of bed sometimes. We ended up having her car at Penn State with a handicap placard so that she could drive to get as close to class as possible. This is a girl who played four years of soccer, three of them high varsity soccer at a high school that’s huge in central Pennsylvania and she was a track athlete. She even went to Penn relays. If anybody knows what that is, it’s a big deal at U Penn for anywhere from high school all the way up. She went to that when she was a sophomore in high school. She was always used to being on the move. Here she is completely debilitated and eventually she had to take that second semester of freshman year of college off by just taking two classes online. Because she was so sick she was sleeping 20 hours of 24 hours.

Mimi: Oh my gosh.

Carrie: I’m cutting through a lot of the crazy because I could go down the rabbit hole of all of her different symptoms, but in truth, anyone who’s listening to your podcast knows what these symptoms are. Because she had this weird pocket of fluid and the small of her back and all this back discomfort, we went to the other side of this practice to a chiropractor. I wanted her to just start getting adjusted because she’s sleeping a ton she’s must feel achy because her bones and our joints are out of whack, right? He got ahold of her and he was like, “Whoa, whoa, whoa. We need to unring a lot of bells.” That’s when the whole office kind of started talking to each other about what was going on with Sam. She went off all antibiotics at that point. She had been on 3000 milligrams of antibiotics total a day.

Mimi: Oh my God. And that was for 18 months ?

Carrie: 18 months. That was to combat two strains of Lyme that we received that information from IGeneX labs, but then she had also gone through having Babesiosis and with that, she had Malarone and pulse Dapsone. She did eradicate the Babesia, but she could not get rid of the Lyme. We knew that the antibiotics weren’t really working, so we just stopped everything. She went into a complete AIP diet, no gluten, no dairy, no night shades, you know the list. A month later that would have been the beginning of February. She said, “I just don’t feel any better at all,” So we went and did another test, a food sensitivity test to see what was really causing her more issues and there was a ton and, I mean a ton of foods, talking like shrimp and strawberries and spinach.

Mimi: Like everything that she’s eating, that’s happened to me.

Carrie: Yes.

Mimi: Literally kale, almonds, avocados, coconut, everything I ate, it was like everything that was a super food I was allergic to.

Carrie: That’s exactly what was happening. She made this list of red no, I can’t eat, orange maybe once in a while, and then green was, I can eat any of this. We formulated a triangle in the kitchen, this is an advice I have to give to people. Formulated a triangle in the kitchen where if you put your arms out at any given span, you’re either hitting the refrigerator for what you need, or you’re hitting the countertop for something that’s there, a fruit or a vegetable, or maybe a cabinet or something that you would have some of your pantry items. This is why you’re not going into where everybody else has their food and you’re looking at it going, “I can’t have this, this, this, and this.” Psychologically, it makes you feel better about what you can eat. We started on that path and she felt maybe a little bit better, maybe she was now not sleeping 20 hours, maybe it was more like 16.

Mimi: Yeah. Giving up so much you’re like, “Wait, I’m giving up so much and I’m still not feeling better?”

Carrie: Absolutely. Psychologically, it was draining her with she’s losing her social, which she basically barely had anyway and she’s sleeping and she feels horrible and she looks horrible. She looked awful. Her skin color was awful. I was working at a television station at the time as a correspondent and it was a lifestyle show and I said, “I really want to do a 30 minutes on Lyme disease.” That’s what kind of kicked off my Tick Talk. I had talked to a bunch of different people and I found out that I had a friend that literally lives two miles from me, right outside my development, who had Lyme. He had really bad neuro Lyme. He thought also that he had Alzheimer’s and I contacted him and I said, “I had no idea that you had this.”

He said, “Yeah.” I said, Well, what did you do? How did you get unstuck? What the heck?” He’s like, “Actually I did hyperbaric oxygen therapy.” I’m like, “You mean that thing that Michael Jackson did?” He’s like, “Yeah.”

Mimi: Like the scuba divers do?

Carrie: Right, right, and athletes obviously but I just had this vision of Michael Jackson laying in a clear colored coffin. I ended up contacting the same place that was about 45 minutes away from us and with the support of Sam’s doctors, we started that. I tell you, Mimi, it was, and I just recently looked back at her journals because she kept all of the journals from the time she didn’t go back to school, starting in that January, all the way through to 38 of her 40 dives. Then her journals stopped because that’s when her life kind of-

Mimi: Returned to normal. She had time to move on.

Carrie: Yeah, she was no longer looking at all of the things that were kind of improving sort of, whatever. She was like, “I’m going to go live my life and not open up my journal.”

Mimi: 38 dives. Two hours each time or a hour each time?

Carrie: About. About. It’s 90 minutes and she did 40 dives.

Mimi: 40 dives.

Carrie: During that time she is on proper supplements. She is on this anti-inflammation diet and the other further restricted foods and she’s doing these dives and we would book end them, so we would start with pulsed electromagnetic field mat, so she’d lay on that mat for about eight minutes. That speeds up all the red blood cells, so it’s like putting them in the HOV lane and all the red blood cells collect oxygen. Now she goes into the chamber and the chamber gets cranked to a certain depth. Each time she goes in, she gets deeper and deeper. But when she’s in, the timer doesn’t start for 90 minutes until she reaches the depth of the dive she’s supposed to be at, so it could be more like an hour and 45 minutes that she is laying in that chamber. Then she comes out and she does the far infrared sauna for about 10 minutes to sweat out toxins. She did that Monday through Friday for eight weeks.

Mimi: Did you commute every day?

Carrie: Every day it was 45, 50 minutes up and back. In the beginning, she couldn’t drive because she had a really hard time driving even locally. She had to put her GPS on every time cause she forgot how to get home.

Mimi: That’s crazy.

Carrie: Yeah. She started then driving by herself. Next thing you know, she did underwater treadmill because like I said, she was an athlete and she needed to get back moving. As soon as she started feeling better, she started doing the underwater treadmill, which was really good, obviously, psychologically for her too, because she’s jogging. The kid hadn’t jogged. Her goal was, “I want to make it to the end of our driveway to get the mail and not feel like I got to stop.”

Mimi: Right, yeah. I know how that feels.

Carrie: Yeah. That’s crazy. After that she was kind of in remission and that was that or did she kind of get her. Her remission was really solidified that December actually on her birthday. We started in January of that year and it took almost a full year of full throttle focus on her health and wellness. She did go back to Penn State her sophomore year and she maintained the way that she was eating. It was a fat grocery bill for a college student, but that’s okay because she had learned how to cook her food. She’s pretty remarkable, truly, because a 20 year old is learning how to cook her own food and doing it well. That’s how she ate.

Mimi: Wait, were you the person, I can’t remember it was you that I was talking to about their child going back to school and they had to get an app. They had to work with the school to do how they were eating. Was that you guys? I can’t remember.

Carrie: It wasn’t us, but I can imagine that if it was a kid who needed to be on the meal plan or something that you had to do something, but there’s a Trader Joe’s and a Whole Foods right around.

Mimi: Right. She had a kitchen in her place?

Carrie: Yeah. She had a kitchen, she lived with six other girls and they would smell her food and be like, “What are you making today?” They loved it because she’s a very good cook. I’m not going to lie.

Mimi: Lots of veggies and good for you food.

Carrie: Yeah. At that point, she was still eating lean meats, like some fish and some chicken but since then, she’s really become much more vegetarian/vegan and the way that she eats. But here we are, Samantha graduated from Penn State last May during pandemic season, during COVID season, lockdown season. She ended up wanting to continue to pursue what she was doing with yoga, because I forgot to mention along the way, she decided that she was going to start yoga because she felt like that’s what she needed to do to build her strength and to mentally prepare for college again so she would have stress relievers and really learn how to be mindful. Of course in pure form, she ends up getting her first level of teaching and then she ends up being a teacher at Penn State, a yoga instructor.

Mimi:Oh, that’s great.

Carrie: Yeah. That made her, then once she graduated, she was like, “I want to do something with yoga for the next year as a gap year,” so she’s been in Costa Rica teaching yoga.

Mimi: Oh, good for her. That’s perfect with COVID it’s not like you’re doing much here. So from that, I think you started Sam Spoon because of what we all know that nothing is covered, right?

The Financial Burden of Lyme

Carrie: Yeah. Yeah. When Sam got, well, I was very much ready and I had been doing stuff with Project Lyme. I was a Pennsylvania ambassador for them, and so Tick Talk actually was with Project Lyme at the time. Then I recognized that in Pennsylvania and really, even more locally here, there were so many sick people and they really couldn’t afford to get well. They just didn’t know where to turn. We have an organization in Pennsylvania, but it doesn’t focus on giving grants and things like that. I just felt like in six months we spent and in only six months because remind you, she was sick for much longer, but in just six months we spent $25,000 on our child. Who can do that? Really?

Mimi: I know. It’s hard.

Carrie: If you have multiple people in your family, they can’t.

Mimi: The problem is at least she got better afterwards. A lot of people spend that money and they don’t even get better afterwards because they go down a rabbit hole that didn’t work for them because every time something might not work for that person. You started the charity now, how do you determine who gets the money and where are they put it?

Carrie: Yeah. One of the things that was important for us is that we wanted to keep any money that we received in Pennsylvania. Even if it was a local, another organization that did grants, we were honoring where they wanted it to be. It can be really restricted even into the county that we wanted in Pennsylvania. Having said that, we also recognize that if we get any national support, we can open it up to someone outside of Pennsylvania. We have it sort of segmented to try to be really good about how our money is disseminated towards people. We have grants that have gone out to Pennsylvania and people outside of the state because we received money from Subaru Corporation through Subaru Share the Love. Then we have all the different events and different things that we’ve done here in Pennsylvania.

Sam’s Spoons Organization and Funding Approach

Carrie: Deciding who gets it, every year around mid-October, you can go onto Sam’s Spoons, any of our Facebook or our Samsspoons.org and you can see that our applications will open and then anybody can go on. It doesn’t matter what age you are. We have zero restrictions on ages. You go on and you’ll see, it’s just a bit of a form to fill out. We just want to know what’s going on with you. But in truth, we do not make you show a boatload of, “These are all the bills. This is what I have,” because I just feel like that’s sort of prying for people. They’ve already been through enough and we know that when they go to doctor, after doctor, they’re bringing stacks of information, proving their illness. I just felt like if you’re reaching out to us and you have not been well, and you can show that you have had this much illness and this is your doctor’s name, we’re cool with it.

We have a committee that is outside me. I don’t get involved because sometimes I know some of these people. I don’t get involved and we have a great committee of others within Sam’s Spoons that really pour over these applications and then they make the final selection. So this year we had 13 grants that we gave out.

Mimi: At this point, they’re kind of just reimbursing what they’ve done or are you kind of guiding them what they should be doing in the future?

Carrie: We do not guide them. Some have asked, “I’m looking for a doctor in this area.” Again, we basically just want to provide them with financial relief to help them get well. We don’t feel like we can do much to say where you go, what you do because what if we tell them to go this place and then that doesn’t work either? I don’t want it to backfire.

Mimi: Mm-hmm (affirmative).

Carrie: Honestly, Mimi, I feel bad for these folks. Some of them have really high credit card debt, some of them it’s, “I can’t even afford to get the supplements for the next two months.” If that’s where the money goes, if it goes to pay off the credit card debt incurred because they’ve been so sick and because they’ve had to pay out of pocket, that’s fine. Everyone gets anywhere between $1,500 and $2,000.

May 22nd Tick Talk Event

Mimi: Oh, that’s great. That’s awesome that you’re doing this. Your Tick Talks that you’re doing, which is coming up May 22nd, I believe?

Carrie: Yes, yes.

Mimi: It’s going to be Facebook Live this year since it’s not in person. What year is this been?

Carrie: This is number five. I can’t believe it.

Mimi: Number five, wow. So you started Sam spoons after you started this?

Carrie: Yes. Yeah, I did. The first several Tick Talks that I did, the first two that I did were basically partnering with Project Lyme and then when I started Sam’s Spoons, we had the first one that was with Sam’s Spoons was at Dickinson College, which is my Alma mater, and I was able to bring in some folks like the CEO of LL Bean, who they went in and did an amazing program with all of their employees. He’s a graduate of Dickinson who’s a friend of mine. He’s a friend of mine too. We have another friend of mine who is actually with IDEXX, which is where so many veterinarians give all of the diagnostics over too to look for tick-borne illnesses and then some, so we had them. It was really important for me to have that presence kind of combining the combination of my education, the people that I know that can really help folks, and what we do with Sam’s Spoons. Then last year we had to go virtual so we just did the best that we could and we had a virtual basically via Zoom, and that kind of closes you off because you had to sign up for it. This year it’s better because if you’re following us on our Facebook page, boom, it’s live and it’s all day long.

Mimi: Oh, that’s great. If you don’t make it, is it recorded that they could put their email in and get the recordings or …

Carrie: Yeah. Basically, the Stream Yard platform is what we’re using and Stream Yard will connect to Facebook, LinkedIn, and then also YouTube. It will be sitting on the Sam’s Spoons YouTube page, and probably we’re looking to see how we can extract it meaning if I can go ahead and say, “All right, I want Dana and Dr. Phillips, Dana Parish, and Dr. Phillips chronic one isolated into one of the presentations and then it sits by itself,” I might be able to put it back on to samsspoons.org, on my website. But I think the best thing for people to do will be able to find it on YouTube if they can’t watch it. It’ll be there after May 22nd.

Mimi: Who do you have speaking this year?

Carrie: We have a good group. I’m so excited. I mix it up every year and make it a little bit different. Leading the day off at 9:00 AM is going to be Chris Turnpaw and he is with Turnpaw Health and Wellness here in Mechanicsburg, Pennsylvania. He’s amazing. Chris has talked all over the country. We haven’t quite defined his topic because he is so brilliant, he has talked about so many different things, but rest assured he will be pretty amazing. He always talks about how we can make our immune system far better to be able to fend off many illnesses, COVID, tick-borne diseases, you name it. After that. We have also Brooke Geahan who’s with The Heal Hive.

Mimi: Yep. She’s been one of my podcasts. Yeah, she’s great.

Carrie: She is so great. I think it’s really exciting to be able to present to people something like bee sting therapy and I don’t think a lot of people understand it.

Mimi: She healed herself from it.

Carrie: She totally did. That’s another good story is not everybody’s healing path is the same. I think it’s really interesting to learn from other people who’ve done something that is really off the beaten path. So I’m really excited-

Mimi: And it’s not as expensive so if you’re kind of on a budget, it’s a good way to go.

Carrie: It really is. It totally is. Then we’re also going to have Brandy Dean with Ride Out Lyme.

Mimi: Oh good, great.

Carrie: Brandy is actually going to be talking about round two in that Brandy has also had Lyme, which is why she started to Ride Out Lyme to support the Dean Center in Boston but Brandy is going to share something that’s been really hit her hard, her family hard, and that’s their son, Finn. Finn has been newly diagnosed with a tick-borne illness and she’s going to be talking about what it is like to be the mother and also having healed with Lyme and then how she is healing their son. That’s a good conversation because that’s going to be good for parents who are struggling with six children at home.

Mimi: Yes.

Carrie: We also have Dr. Sue Eisen, who is a chiropractor, but she is the creator of Tick Talk Naturals and she’s going to talk a lot about herbals and other remedies that have been really powerful treating her Lyme patients and also her COVID patients, so a lot of crossover there. We also have Christa Nannos. This chick is amazing. She is an actress, a writer, a producer. She is a Lyme warrior and you’ve got to check her out on Instagram, C-H-R-I-S_T-A N-A-N-N-O-S, had to get that correct. Check her out on Instagram and Tik Tok, because she tells her story in the best ways. It’s through humor, but really great information.

Mimi: Oh, that’s great.

Carrie: I love her because she brings a lot to the table. She’s also working on a documentary and a book. Then last but not least, certainly not the last and least is my dear friend, Dana Parish and the amazing Dr. Phillips will be on to talk about Chronic, their book that is just red hot with so much information. I read that book in like two days. I could hardly put it down.

Mimi: I know and there’s a lot in there. There’s a lot of good science, there’s just a lot of good information.

Carrie: Well, and Dr. P basically shares what he does and he states, “Look, this might not work for everybody, but I can give you some of the secret sauce.”

Mimi: They both have had Lyme, so …

Carrie: If they’ve been dying to get in with Dr. Phillips and they just need to get it a tidbit of what he does to treat patients, he’s got a lot of that information in there. The two of them together are a powerhouse and their book is phenomenal. It’ll be a very big, robust day of learning.

Mimi: That’s great. That’s awesome. Anybody, May 22nd, tune-in to it’s it’s under … What Facebook? Is it under …

Carrie: Sam’s Spoons. Yep. It’s from 9:00 AM to 4:00 PM Eastern Standard Time.

Mimi: Awesome. Okay,

Carrie:  I’m just so grateful that you have a podcast like this and you have people like us on to not only talk about what we do and why we do it. I hope that it just makes people feel a lot better and less alone when they hear all the different stories. Sam’s Spoons is an organization that embraces everybody throughout the country. We’re not just about Pennsylvania, so I encourage everybody to check out what we do because we’re just here to help. That’s it. I’m a mom who learned kind of by baptism by fire and I thought I’m one of the lucky ones, my daughter is thriving. I didn’t even tell you that I have my other kids that were sick because we only talk about Sam, so that’s a whole other day some other time, but I’m just grateful that she is well and so that’s why it’s so important to me to be able to have this foundation and help other people.

Mimi: That’s awesome. Well, thank you so much for your time.

Carrie: You’re welcome. Thanks for having me on.

Learn more about Tick Talk by clicking HERE.

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