"My best bet was to use IGeneX."

I’m 28 years old, and I am from North Carolina. I have a background in the fashion industry. I worked for seven years for a very large retailer and was on my feet for seven+ hours a day doing the grind. And eventually, unfortunately, because of my experience with tick-borne illnesses, I had to retire from that field.

I’ve been on long-term disability for about two years now and since returning home, and being on my medical leave, I’ve really focused my energy towards raising awareness and advocating for tick-borne diseases. So, my interests are specifically in health and disability policy. And so that is kind of in a nutshell what I’ve been up to since my world has been flipped upside down in the last two years.

So, my story as a Lyme patient. It’s really hard to pinpoint when exactly it began, I can think back to my childhood and pinpoint symptoms that I had been experiencing that had just been seemingly random happenings that had been largely dismissed any time. I brought it up to a provider that now understanding the full picture of what clinical presentation can look like for all of the different pathogens that I have. I am able to think back and identify, gosh, that must have been bartonella, or that must have been Lyme, or some of the other infections that I unfortunately have. So, it started in, let’s see, gosh, 2015 is when I like to say I started my decline what I thought was a pull in my knee from a very intense game of backyard wiffle ball with my family.

I started having this knee pain and it just would not go away. I thought that I had maybe torn something or twisted it in a funny way and after having been to multiple sports medicine doctors, orthopedic specialists, it was inconclusive. There was nothing that they could figure out that was wrong with it. MRIs came back clean. X-rays were coming back clean. And it continued to persist and it started to migrate into other joints eventually. And eventually, it went from my left knee to my hands and my elbows. And I was feeling it in my shoulders, my hips, my ankles, virtually, every joint in my body was impacted. And I could not piece it together.

I started experiencing some other seemingly random things at the time that had also kind of been dismissed or excused away, like brain fog and fatigue. I was having what I now know to be right now, syndrome, where my fingers and toes would get extremely cold and start to show a purple or blue color, which was kind of concerning. But was told that it was nothing to really worry about. It was just a quirk of my body.

A lot of the things that I was experiencing like my lightheadedness, my dizzy spells, was just explained away as you’re working on your feet. You moved to somewhere that’s a very different climate at the time, I was living in Seattle Washington. And I’ve grown up in North Carolina where it is 70 degrees and sunny for most of the year. And so, I was explaining this all away as I’m not getting enough sun. Or I’m living in a different elevation, or I’m anemic. And despite, you know countless lifestyle changes, eliminating alcohol, anti-inflammatory diets, and tons of different medication, I was seeing no changes even though my doctors told me I was doing all the right things.

And so over the years, I had gone and seen dozens of doctors at some of the most prominent medical institutions across the country. And I was seeing everyone from specialties like, gastrointestinal specialists, urologists, rheumatologists, internal medicine, sports medicine, orthopedics, I mean the list goes on and on, and nobody could figure it out. But things were continuing to get worse and it got to a point where I was completely debilitated.

And I required 24/7 assistance. I couldn’t even have the strength to lift a sheet off of my body or hold my toothbrush. And so, I knew something was really, really, wrong. At that point, I’d, in 2017, I finally received a diagnosis and this was the first time that anybody had given me an answer. I was told that I had rheumatoid arthritis. And I was desperate for relief. I was in my early 20s and I wanted to be doing all the things that my friends were doing. And I wanted to continue moving forward with my career which was very physically demanding.

And so, I bought into the answer that I was given. And I immediately followed the standard protocol for autoimmune diseases which is a dosage of steroids and low-dose chemotherapy drugs, where I was giving myself injections of a low-dose chemo drug weekly. And I started to become a little more functional. But in the back of my mind, I knew that this was merely a band-aid because I was still having a lot of the same issues. I was just able to move a little better. And I eventually started working with a functional medicine doctor about two years after I received that diagnosis. And I’m really really grateful for this practitioner because she was so thorough and looked from every angle, was this a parasite, did I contract something while I was traveling, was it foodborne, was, what was happening. And so, she was looking from every angle and was just relentless and running extensive amounts of tests.

And eventually, she ran a CD57 panel which indicated that I had an active infection in my body. And from there, she said to me, you know it’s one of two things, you either have Lyme disease and tick-borne illnesses, or you have pneumonia. And you clearly don’t have pneumonia. And so, she suggested that I move forward with testing for tick-borne diseases. And she had indicated to me that the CDC recommended testing methods, like the western blot were highly inaccurate.

And so my best bet was to utilize a private lab like IGeneX who specializes in tick-borne diseases to get the most accurate results. And I ordered my testing. And it was the day after my bilateral hip replacement surgery, I was 26 years old. And I learned that this was the missing piece of the puzzle that it was tick-borne illnesses all along. This was a really overwhelming finding for me. It was a great sense of relief because I finally felt validated in everything that I had been experiencing.

It was piecing everything together. It was connecting the dots. All of these things that I thought were not connected at all that were just so random and so weird that were happening to me, it all made sense. And I had kind of a false sense of hope thinking you know, gosh, it’s just something I can fix with antibiotics, which I’ve come to learn now that it’s a lot more complicated than that.

But I was really lucky to get that accurate diagnosis. And eventually, I was directed to work with a Lyme literate doctor because I learned pretty quickly actually that week that I was in the hospital. We had asked for an infectious disease specialist to come in for a consult. And you know I had my results plain as day. And even after explaining everything, and here it is, here’s the missing piece I figured it out.

Now I just need to treat it. She looked at me, and said, I’m sorry, there’s nothing I can do for you, which now I’ve come to understand is part of a bigger problem. And it’s not her fault. Her hands are tied. There’s a lack of clinical education but there that kind of set the tone for what the next few years would entail for me as far as having to seek out practitioners who are Lyme literate and understand the complexities of tick-borne infections.

And that’s also why I’m so passionate about raising awareness and trying to drive change for this community to help others understand that this is such a complex issue. And we have a huge opportunity to advocate for better testing to advocate for better treatments and availability of therapeutics. And just to get recognition that Lyme and tick-borne infections can be chronic and persistent, and they can be really debilitating. And that you know, no one should have to suffer the way that so many of us have had to suffer.

And so, I’m really passionate about raising awareness about this and advocating for change. Because this is an illness that impacts over nearly half a million Americans every year. And you know my belief is that’s under reported. So, there’s a huge population of individuals who are suffering.

And so, utilizing testing like IGeneX is a great way for people to piece together what’s really going on that maybe they’ve been through the ringer. Like I have, have been told it’s all in their head, or they’re not connected, or there’s excuses for everything.

So, what I love about IGeneX testing is that it is going to give patients that validation that everything that they’ve been experiencing is real and is not random, and help them to move forward. So, that they’re able to find the proper care and improve their condition as well. Okay, hold on. I’m going to read for a second.

Let’s see when I had been newly diagnosed I think that what I wish I had known was just how difficult the terrain is to get proper care for this illness. So, as I mentioned I had kind of had this false sense of hope that, oh, it’s just Lyme. I can treat it with antibiotics. I can get, you know I can get this behind me. I can put this behind me. There’s means to an end and boy, was I wrong.

And you know I know so many patients that I speak to also have that feeling. And it’s like, they finally have the missing piece and then there’s an uphill battle after that, just trying to get them the right care. And so, for someone who’s been newly diagnosed, I want them to know that there’s an incredible community available to support, you know both emotionally. And there are so many wonderful organizations that offer financial resources for patients who may need assistance with accessing care or even just to access testing.

And this is a great community to lean into because we can learn so much from each other since unfortunately, the information is not readily available to us the way that it should be. And so, I think it’s important for patients to really lean into this community because there are so many people who are willing to help. Let’s see. Let’s see it.

So, I heard about IGeneX because it was recommended by a functional medicine doctor who I was working with. And she helped me understand that the western blot and other widely accepted testing options are just highly inaccurate. And so, IGeneX has a great reputation of specializing in tick-borne infection testing, and is definitely a more accurate option for a patient to choose. And let’s see being properly diagnosed with tick-borne diseases impacted my life because I finally felt like everything was connected. Everything I had been experiencing that the dots were being connected.

I felt like, for the first time, I was really validated with everything. I had experienced everything that I had been told to excuse or I had been dismissed on. And it allowed me to finally access the right kind of treatment because unfortunately, what I had been doing before with my misdiagnosis was doing a lot more harm than good. And I would recommend IGeneX to a friend because it has an outstanding reputation for being an accurate source for tick-borne disease testing.

And they’re based right here in the United States. And so, it is probably the best option for patients to choose who are looking for something that is a somewhat local laboratory. And they know that they can rely on the results to be most accurate. And let’s see, oh, any words of wisdom.

Be your own advocate. That’s the most important thing. Unfortunately, even in medicine with people who are experts in the field there is going to be human error that’s just the nature of it. And so, trust your gut and continue to advocate for yourself. Don’t settle for the first answer that you get continue to push forward until you feel most comfortable with the diagnosis that you’re being given with a course of action for treatment. You should be working with your providers as a true partnership.

And if it doesn’t feel like the right fit, you need to continue to move forward and find a provider who you truly feel like is the best support for you.