"I was fortunate about IGeneX."​

My name is Emily Levy. And I’m the co-founder and chief brand officer of Mighty Well. When I’m not busy being a professional patient, I’m a dog mom to two rescues. I’ve recently become a crazy plant lady as well. And I’ve been having a lot of fun living in the ocean state going to the beach and just taking long walks and reconnecting with the earth.

My journey as a lyme patient started unsuspectingly when I was six years old. And I was bit by a tick after summer camp. Fast forward to when I was 12 years old is when I started to become critically chronically ill after also contracting epstein-barr virus. For years and years, we didn’t know what was going on with me we, went from doctor to doctor just trying to find some answers.

And finally, after my freshman year in college at the age of 19, I saw a lyme literate nurse practitioner who ordered IGeneX testing for me. And I finally got the confirmation that I had lyme and other tick-borne illnesses.

For me as a patient, it severely affected my mood, my brain, physical pain, just really tired and exhausted all the time. It often felt like I was having out of body experiences. And all of this was really alarming, especially because I was supposed to be in the prime of my life in college.

And finally, after trying almost a year of oral antibiotics and having the confirmed testing with IGeneX, my lyme literate doctor decided that a PICC line would be the best course of action for my treatment. And I went through long-term IV antibiotic therapy. And I really feel like that kind of saved my body from just going over the edge. And ever since then, I’ve been on my own healing journey. I’m now 27.

I’ve tried a variety of therapies, everything from traditional western medicine to eastern therapies, and different plant antibiotics, and different healing modalities. And you know it’s definitely a struggle, you know just dealing with being an entrepreneur and living with a disability at a very young age. But I feel like all of this has just helped me to find my purpose and my path in life sooner than later. And one of really the joys out of this whole experience of being a patient has been connecting with other people who are in the chronically ill or disabled community.

And many of them have helped to figure out some of their underlying symptoms, and quite often, they too. You know did their blood work at IGeneX and found out that it was a tick-borne illness that was wreaking havoc on their life. And now in my free time, I really just try to be a supportive friend in the fight for people who are battling tick-borne illnesses. And I really advocate for them to take control of their own health. And you know do alternative testing like IGeneX, go to doctors who, you know, are actually sympathetic to those living with lyme disease and other tick-borne illnesses.

And looking back at my journey as a patient, you know I really just wish it started with my pediatrician when I was 12, and I was having really debilitating symptoms. And I had you know very classic bartonella, like stretch mark looking things. And I had very classic babesia little red pinpoint perks on my body that migrate and move. So, I wish my pediatrician, you know knew to test for lyme disease and moreover, knew that there was very credible testing out there like IGeneX.

You know sometimes, I get angry that the healthcare system didn’t catch it sooner. Because I think, I wouldn’t still at 27 be dealing with some oftentimes debilitating symptoms. But I’m really, really fortunate that I was able to hear about IGeneX finally when I was about 19, 20 years old through my lyme literate nurse practitioner. And that really has just been a huge validator for me because so often as patients, we’re made to feel like it’s all in our head, like these symptoms, you know maybe more mental health related, or it’s some other diagnosis.

But once I had my confirmed IGeneX paperwork, I cried because I was really happy. Because I felt like everything that I’ve been experiencing since I was a little kid was just validated through this testing. So, for me, what accurate testing means as I look at different tick-borne illness patients, you know I think, I always tell them to start with traditional CDC testing.

But as someone who has experience for herself that they’re not always the most accurate, or they don’t, you know catch the disease early enough, or you know maybe our immune system’s been trying to fight it. But we’re still having these lingering symptoms. I mean that’s for me, why it’s critical to have testing like IGeneX available to patients, you know I know it’s a huge healthcare cost out of pocket.

But at the same time, I feel like without having that validation of not only lyme but quite often other tick-borne illnesses known as co-infections, you really can’t heal properly because you may not have the full picture. So, as I just mentioned how being diagnosed properly with tick-borne illnesses impacted my life. Not only was it a huge validator for me as a patient who really had been through the wringer of the US healthcare system, but it finally allowed me to get on a healing path that was congruent with the symptoms and bacteria and parasites that were actually wreaking havoc on my body.

And until we had the IGeneX testing, we didn’t really know for sure what we were trying to treat just because the standard CDC testing was, so borderline, and you know testing things like the bartonella or other co-infections just aren’t very standard. Many doctors have, you know it doesn’t even cross their mind to test for it. So, you know moreover, just having that confirmed diagnosis from IGeneX really allowed me to start a healing path that you know, I’ve had periods where I have been in remission. Or time periods when I’ve really been able to manage the disease properly because I got the care, that was actually needed in order to fight the tick-borne illnesses that I’ve been living with since a very young age.
And I love telling people about IGeneX like, genuinely, because not only have they impacted my life. But you know even just this morning, I got off of the phone with an extended family friend whose son got bit by a tick, classic, you know bullseye rash. Yet even his own pediatrician said you know, we can do the CDC testing but we don’t know how, you know, what the results are going to be because he just got bit.

So, just being able to tell people that there are other methods of testing like IGeneX, not only allows me to feel like I’m helping other people have like tangible answers, but I feel like it, actually, gives the patients hope to know that they can get to the root cause. Like for example, with my family friend, like why, her son is 12 years old and just so tired all the time. You know I also was that 12 year old who was exhausted for no apparent reason except now, we know tick borne illnesses.

So, I would say, like actually talking to people on the phone or through facetime. It’s anywhere, you know from two to six people a month that you know I just talked to you out of the kindness of my own heart, knowing that I don’t want other people to go through what I’ve been through before. So, it’s really a powerful tool, I think when someone is just starting on their path of either getting to their root mystery chronic illness or knowing that, you know it’s a suspicion that’s lyme disease or other tick-borne illnesses. And that there is testing out there that can give them real answers.

And for parting words of wisdom, I want to tell all of my friends in the fight that they are never ever alone. I know that this journey can feel very isolating and very disruptive to maybe what you thought this time period in your life would really look like, but you aren’t alone. You know unfortunately, for better for worse, you know there are quite literally millions of people out there suffering from tick-borne illnesses. And you know whether it’s connecting with groups online or just starting to tell your story, giving a voice to what you’ve been through is going to help you heal. So, best of luck to all my friends in the fight who are out there on their own healing journeys, whatever it may be, and just know that my heart is with you. Thank you.