Emily’s Journey with Lyme Disease

Mimi McClean:
Emily, thank you so much for coming on today. I really appreciate your time. I’m excited to talk about your Lyme journey and what you’ve done with that and how you’ve started Mighty Well, so thank you so much for joining.

Emily Levy:
Thank you, Mimi, for having me and thank you for all the work that you do, giving voice to the patient community.

Mimi McClean:
Why don’t we start out with you just telling us a little bit about your Lyme journey, and then how you came to starting Mighty Well.

Emily Levy:
Thank you.

Emily Levy:
I was probably bit by a tick when I was six years old. That’s the only recollection I ever have of finding a tick on me. But it wasn’t until I was 12 years old that I also contracted Epstein-Barr virus, and then was either bit by a tick again, or it flared up some of the underlying symptoms that I had been having as a young child, and for me, that’s really when I considered starting my health journey and then it was just all these years of just unexplainable symptoms. Everything from brain fog, to being really clumsy and forgetful, to eventually not being able to feel my legs by the time I got to college.

Emily Levy:
Finally, after seeing way too many doctors, my mom got me to see a Lyme-literate nurse practitioner and she did the igenex testing and we found out that I had Lyme, and a few other tick-borne illnesses. So while it was a devastating road to get there, I was actually crying because I was so happy that I finally had a diagnosis with a reliable testing to back it up.

Mimi McClean:
What did they think you had up to that point before you got tested?

Emily Levy:
Oh geez. Well, the Epstein-Barr was confirmed when I was in seventh-grade, so a lot was blamed on that for years. But it was everything from, oh, maybe it’s a thyroid issue, maybe it’s just anxiety, depression, she’s clumsy, she’s a grandma even though it’s high school. So it’s just the things we typically hear in the Lyme community, unfortunately.

Mimi McClean:
And then once you were diagnosed, what did you take as your path to treatment?

Emily Levy:
I know for me it was so all over the place. I’ve explored everything from Eastern to Western medicine, and I’m doing very holistic treatments right now.

Emily Levy:
When I was finally diagnosed after my freshman year in college, I tried traditional antibiotics and supplements. I just couldn’t handle them. I was throwing most of them up.

Emily Levy:
That’s when I went to doing IV-antibiotics with a PICC line, and I truly credit PICC line and IV-antibiotics with slowing down the progression of the disease. Especially because, for me, the respect scan we found out that it had become neurological. So I did a PICC line on and off for about five years doing different IV-antibiotics in combination with Eastern Chinese medicine and supplements. And that got me to a certain point, but I’ve always kind of had these years of feeling really good, then years of challenges, and back and forth. And today I’m doing a lot of holistic IVs things like ozone therapy, Myers cocktails, high-dose vitamin C, B12 shots, and working with different point antibiotics and medicine. So it’s been a journey, but I definitely encourage listeners to explore all types of healing modalities.

Inspiration and Innovation for Mighty Well

Mimi McClean:
Do you still have a picc line in?

Emily Levy:
So I live with the port now, which has just been so much better for my quality of life because I’m doing IV therapy two-three times a week, versus when I was doing the picc line, it was maybe three-five hours a day of antibiotics. It’s been great for me and I wish more patients knew that they had that option.

Mimi McClean:
You just to be careful with catching sepsis or keeping it clean.

Emily Levy:
Yes. I am so hypervigilant around that and I think that’s because I’ve become like a vascular-access nerd, but I know for most people it’s quite a challenge to just maintain the Lyme and that’s part of the reason I did choose a port in the end.

Mimi McClean:
No, it’s true. Now, can you tell us a little bit about Might Well? I mean, you have so many great products on there, so for anybody who hasn’t seen it, it’s Mighty-Well.com. And how did you come to starting that?

Emily Levy:
Thank you for asking. This is definitely the child that I do not yet have.

Emily Levy:
So for Mighty Well, it was started just out of my own need when I had a PICC line and I needed something to protect the catheter and I was recommended wearing a cutoff sock by my doctors, my home care nurses. I just heard it over and over again and that’s exactly what I did. But I felt really self-conscious because not only was my line exposed and sometimes getting pulled on things like doorknobs or sleeping, but it was just really embarrassing being a college student and people looking at my medical device at times.

Emily Levy:
I had grown up in the fashion industry and around different sportswear materials and I just thought that there had to be a brand that stood for what disabled people and chronically ill people were going through. So we started out with our first product, which is the picc perfect to protect and conceal picc lines. We’ve grown into having medical backpacks, medical organizers. We’ve launched a mask even before the pandemic and really growing, not only to support patients with physical products, but a community for them as well to make sure they’re not feeling quite as lost and confused as I was.

Mimi McClean:
That’s great.

Mimi McClean:
And are there other competitors out there or is this kind of a total white space that you entered into?

Emily Levy:
It’s a great question. So when we got started, the category of adaptive wear, which we believe Mighty Well falls into is products for people with disabilities, chronic illnesses. That category existed mainly for the elderly, or people with severe disabilities that they’re usually born with. But I found that there was really a white space for people who maybe had lived a fairly normal life, yet found themselves suddenly disabled, suddenly chronically ill, and I’ve always believed that what you wear helps you to feel good about yourself. Even on days, I didn’t feel well sometimes, doing my hair and makeup made me feel that much better.

Emily Levy:
So now there’s a few other people in the adaptive space each with their own niche, but we’re really focused on helping people, especially who have physical medical devices, like a picc line, needing a wheelchair just to get around every day. Maybe they have a diabetic monitor on them. So that’s where we try to focus, but there’s definitely other adaptive companies out there now who have different niches.

Mimi McClean:
I know one thing I struggle with is just keeping organized the supplements.

Emily Levy:
Oh yes. It’s like a full-time job just knowing what to take, when to take. Oh, did I miss that?

Emily Levy:
We invented the Mighty-Med planner to help with that because for me, for a while, even though I was chronically ill, I was still traveling all over the country, speaking about my experience of Lyme to different healthcare groups. I was like, “how do I organize 30 pill bottles to take on a carry-on flight?” So that’s a problem that we’ve heard over and over again.

Medi-Pack, Medi-Planner and Other Innovations for Lyme Patients

Mimi McClean:
So can you talk about your Medi pack? Because for me, it’s not even like AM/PM. It’s almost four times a day. When you wake up, mid-morning, mid-afternoon, nighttime, and every day.

Mimi McClean:
I found this great case that has the four slots for each day, but that’s not big enough to fit how many supplements you have to take in each of those spaces. So then I’m like, oh no, where do I put the leftover? I don’t know. It just gets so confusing that I almost just put my hands up and then I don’t even take the supplements

Emily Levy:
I’ve been there as well.

Emily Levy:
So with our med-planner, which is a smaller version of the backpack, we have a binder ring system, and you can put different sleeves that we call them and you can write on them with a dry erase marker. You can say, “these are my Monday at 12:00PM pills that I need to take.” We just really wanted it to be customizable for each patient’s individual needs, or even if the patient was a type one or type two diabetic.

Emily Levy:
At Mighty Well, we try to create all of our products, not only from my lived experience, but from our community’s experience in figuring it out. I have Lyme disease, but my friend, she may have Dysautonomia, or she may Hashimoto’s, what would she need? We try to take that approach.

Mimi McClean:
Exactly.

Mimi McClean:
What I’ve been using is a muffin pan. It has four things and then you can kind of do it for the week, so it takes you across for the four different slots times six, or whatever it is. I use that sometimes, which is kind of funny. Then I get my kids involved and I’m like, “okay, you take this bottle and you got to put one in each thing.” It’s crazy.

Mimi McClean:
So what other products do you have coming out, or do you have anything else that you’re looking into and researching?

Emily Levy:
Great question.

Emily Levy:
I’m always researching because I’m living this experience firsthand, so I’m always daydreaming about what could make our lives better as patients. Of course as a startup, we need to be really focused on where our cash is going, and our resources.

Emily Levy:
Right now, I’m really excited to share that our picc perfect that we initially came out with direct-to-consumer had such a demand from hospitals, who are also having the problem of patients pulling out their lines or needing their dressings changed early, that we’ve created an FDA-approved version of the picc perfect. And my vision from day one has always been that when patients go in for their surgery, they would leave the hospital with something to secure their catheter.

Emily Levy:
We’re in the midst of that working with different clinical trial partners. I’m so fortunate that we’ve, not only had the buy-in of other patients, but it’s healthcare professionals who are now saying things do have to be better for patients long-term, because it makes their jobs a little bit easier.

Emotional Triggers and the Ebbs & Flows of Lyme

Mimi McClean:
That’s great. Going back to your personal journey, where would you say you are? Are you a hundred percent? Are you a, B+? What would you say where you are at in your journey?

Emily Levy:
That’s a great question, and I think that’s something I actually have to ask myself every day.

Mimi McClean:
It changes, too. I know, depending on what morning it is.

Emily Levy:
Yes. Yes. For me, today, I feel like a B+, but if you asked me a few days ago there were three days where I couldn’t get out of bed, and t’s just emails from my phone that I could do.

Mimi McClean:
What would you say causes that? Have you figured out what causes it to fluctuate?

Emily Levy:
I know part of it is definitely any emotional triggers that will come up, definitely flare up my physical symptoms.

Emily Levy:
My grandparents are very sick right now. Both of them have Parkinson’s and it was literally, like, I saw my grandma the day before, my grandfather had just been admitted to the hospital, and I know that emotional heaviness took a toll on my physical body. It’s just knowing now that I have to also do the emotional work in order for my overall healing to occur.

Emily Levy:
I have been sharing that I had a really difficult year. I probably got COVID in February when I was living in New York City. My husband had just come back from an international flight. I had probably about a year where it was just difficult to drive, it was difficult to look at screens. It really felt like when I first remember getting super sick as a kid. Just dealing with all that, being back in the IV center, is something that I need to balance with being an entrepreneur that I think it’s only given me a newfound respect for what our community goes through.

Mimi McClean:
What would you say to anybody whose newly diagnosed with Lyme? Looking back on your journey, what do you think has helped the most? What’s low-hanging fruit for somebody to kind of approach first to help them with their healing.

Emily Levy:
That’s a great question.

Emily Levy:
First, I want people to know it’s not all in your head because, for me, as a young woman, I just felt like I wasn’t believed, or I was dismissed a lot of the time. I would highly recommend you use the resources that the global Lyme alliance has put out to find an approved Lyme-literate, doctor, nurse practitioner, holistic healer. Start seeing someone who believes in the disease. I feel like it’s pretty low-hanging fruit. Even if it’s a six-month wait to get to see that person, just start to connect with other people going through chronic illnesses, whether it’s listening to podcasts like this or becoming your own best advocate in whatever way that is.

Emily Levy:
Even if you’re just going into your first appointment with the binder of all of your blood work or everything previous doctors had told you. I find that the more that I can be prepared, the less scattered I feel when I finally have that precious time with a healthcare provider.

Reiki Practices, Home Saunas and Other Innovations Emily Uses

Mimi McClean:
Now, is there anything that you could say or that you could do from home? Did you see any quick wins? If it’s eating, if it’s saunas, is there anything that’s kind of your go-to thing to kind of help you feel better?

Emily Levy:
That’s a great question.

Emily Levy:
Right now I’m super into my home sauna. I got one of those sauna mats. It was expensive, but it was definitely worth it. It was like probably $300. Whenever I feel inflammation in my body, I’ll just spend 30 minutes in the sauna.

Emily Levy:
I also do a lot of just work on myself with sound bowls I became a Raiki practitioner, listening to meditations and just repeating those over and over again. You can heal yourself is now what I believe on so many levels, that by the time maybe you introduce the antibiotics, or you introduce the more Western methods of treatment, the mind and the body are working together.

Mimi McClean:
Yeah. It’s totally true.

Mimi McClean:
We don’t, in our Western culture, really appreciate the emotional connection. If you are holding onto a lot of toxic relationships and toxic events from the past in your life, you’re not going to get better.

Mimi McClean:
I feel like if you haven’t addressed that, save your money from going to these expensive doctors, because that really needs to be dealt with. There are so many great things, even online now. Different programs that you can do. The Amy Shares program, there’s just so many different programs that you can work on, like EFT, emotional tapping, and that really needs to be dealt with and being able to let that go. Because if you’re holding onto anger, that is hurting you. You’re not even hurting the other person that did the harm to you. It’s hurting you. That most likely doesn’t even go in their radar that they’re affecting you.

Emily Levy:
I didn’t know any of this, I guess I’ve been on my Lyme journey for about eight years now, formally knowing I have Lyme, and it was really only the last two years where I started to learn that there is a connection there. Once I started to be able to let some shit go, I had less pain in my body. It was really amazing to see. It’s taken lot of hard work and looking at things in the eye that we all try to bury, but once I was able to do that and confront my own anger, they say Lyme likes sugar, but I think Lyme likes anger too.

Mimi McClean:
It totally likes sugar, likes alcohol, likes gluten. It likes, like you said, anger.

Mimi McClean:
No, it’s totally true that you have to, kind of, address that emotional piece almost first. I think we’re taught that you have cancer, you’re going to go kill cancer. You have Lyme, you’ve got to kill the Lyme. You just got to go out and you’re going to go get medicine that’s going to make it go away. That’s not what this Lyme journey is.

Mimi McClean:
It’s about, what do you need to do to get your body to heal itself? And if that’s getting your gut right, if that’s getting your eating right, or if that’s letting the toxic crap out of your life, if it’s either your cleaning supplies, if it’s a bad relationship, anything toxic has to leave your life immediately. Really looking at every aspect of your life in order to get better.

Emily Levy:
I’m so glad that you’re talking about this and bringing it up because no one was talking about it when I was first researching how do I get better? I’m really fortunate that last year I went through a ketamine psychedelic healing program.

Mimi McClean:
I did that, too.

Emily Levy:
The healing that I immediately felt from going through a six-week program, I just wish more Lyme patients knew about this and that there are now programs that are within reach and that are legal.

Ketamine Treatment and Her Experience with It

Mimi McClean:
Some of the ketamine programs are actually covered by insurance. I think you’re the only person I know that has gone through it for Lyme.

Emily Levy:
Really? I mean, it was the biggest thing that helped me in the past year and a half.

Mimi McClean:
It resets the bar, as my neurologist said. I remember for the first time smiling during my ketamine treatment, like I see the light at the end of the tunnel and coming out it was really hard. I think I got sick, I slept for 24 hours and I vomited for 24 hours. But when I woke up it kind of reset that pain, calipered the pain in your brain.

Emily Levy:
Thank you for sharing that, too, because I’m like, “who can I talk to this about?” Because it is still relatively new and only approved in some states, but, just your point, what it did for my pain levels is like nothing else I’ve ever experienced. It even helped me to get off of my nerve pain medication.

Mimi McClean:
My neurologist made it an analogy. She said that what happens is when you get Lyme, your line, or the threshold, that your body can stand pain or emotional baggage gets super low. What ketamine does is kind of resets the bar back up to where it should be so that it’s not heightened. Your limbic system becomes so heightened, it’s like a PTSD, and your body thinks it’s still struggling from Lyme or thinks it’s still being attacked. The ketamine kind of recalibrate it, or resets your limbic system, your nervous system.

Emily Levy:
I love that explanation and that definitely rings true for my experience, because I think it’s not talked about enough, the connection in between chronic illness, and for us specifically Lyme, and medical PTSD.

Emily Levy:
I didn’t realize just every time I had to go back to the doctor, or I had to refill a prescription, or access my port, the subconscious feelings that were brought up for me. I haven’t had any anxiety attacks or these crazy flare-ups since I went through that program, so let’s keep talking about it as people within our community.

Mimi McClean:
There’s a sense of peace, you have a new sense of peace. At least I do from it. It might not make you completely better, but it gives you enough runway to then be able to be like, “okay, now I can take my vitamins. Now I can get out of bed to get a walk. Now I can go take a shower. Now I have the energy to call the doctor I’ve been meaning to call to then go on my next step.” It just gives you more bandwidth to keep going forward.

Emily Levy:
Oh yeah, it was the total reset and I was just able to re-approach my healing, almost like a boxer, getting ready for another round of the fighting. For a while I was like, “I am so done with all of this. I’ll take my supplements, but I’ll just be living with chronic pain the rest of my life.” But I finally feel like some of that weight has been lifted off my shoulders and it’s allowed me to, not only to be a better partner to my husband, but I feel like a better business partner to my two other co-founders.

Mighty Well’s Cofounders and The Company’s Future Goals

Mimi McClean:
Now, are the other co-founders other people that went through Lyme that you met on your journey?

Emily Levy:
So my two co-founders are my best friends.

Emily Levy:
Yousif, he and I met in college and he was first my boyfriend, and now we’re married. He has been my caregiver really since I was first diagnosed. Well, we only started dating maybe six months before I got diagnosed and he didn’t leave my side, which was really amazing. He even knows how to hook up my IVs. I also do IVIG therapy, so he’s like my little home care nurse now, in addition to being my husband and my business partner.

Emily Levy:
Then, Maria Gomez is our other business partner. She was also one of my best friends at college. She would help me shower when I first got my picc line, she would help me with my brain fog, just all of these things that I’m so fortunate that both of them a`re in my life. They both came from family entrepreneurship backgrounds and we all met at Babson College, which is a very business entrepreneurial school.

Mimi McClean:
That’s a great school.

Emily Levy:
Although I’m the one with the chronic illness, I’d say they’re my two biggest caregivers besides my actual home care nurse.

Mimi McClean:
That’s great. Well, this, Emily has been amazing. I really appreciate your time. Is there anything that we haven’t covered that you would like to cover?

Emily Levy:
I’m just so glad that we got to talk about an array of products that we physically make, but then, products that have helped both of us to heal. I would love if anyone has other ideas for things that they need to make their lives better to share with us. We have a community called Friends in the Fight, where we just want to highlight other patient stories. Send us your journey and we’d love to help make your life a little bit better, too.

Mimi McClean:
That’s great.

Mimi McClean:
Anybody who’s listening, it’s Mighty-Well.com, to check out their products. If you don’t have a picc line, there’s clothing there, but also having the, the planner is great. But thank you so much. I really appreciate it. I wish you the best of luck.

Emily Levy:
Thank you, Mimi. Thank you for all that you’re doing for our community. And I can’t wait to see who you have next on your show.

Mimi McClean:
Thank you.

Mimi McClean:
Each week, I will bring you different voices from the wellness community, so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back.

Subscribe now and tune in next week if you want to learn how I detox. If you want to check out my detox for Lyme checklist, go to Lyme360.com/detoxchecklist. You can also join our community at Lyme 360 warriors on Facebook and let’s heal together.