Dillon’s Story: My 12-Year Journey to a Lyme Disease Diagnosis

After years of relentless fatigue, muscle weakness, and a slew of debilitating symptoms, a journey spanning numerous doctors, tests, and treatments finally led to a breakthrough. Despite consultations with various specialists and undergoing numerous examinations and therapies, no definitive answers emerged. Misdiagnoses like fibromyalgia left Dillon grappling with unrelenting pain and discomfort and even exclusive medical memberships failed to provide conclusive results. It wasn’t until exploring functional medicine that a glimmer of hope emerged. Dylan’s story underscores the importance of persistence, advocating for oneself, and seeking alternative approaches when conventional methods fall short.

Dillon’s Story

After about 12 years, I figured it out.

When I was about 19, I found myself feeling fatigued. It seemed as though, “Well, everyone is tired sometimes,” but after a few months of this off and on, bam! Every single day, all day long, I was plagued with this ongoing, relentless fatigue. I lived my life this way for a couple of years before the next step came into play.

One day at work, when I was about 22, my legs started to feel super tired, shaky, and weak in general, I sat down for a few minutes thinking, “Hmmm, this is kind of weird, maybe I’m getting sick?” After a few hours, things seemed to be going back to normal. During this time, I was doing my best to take a nap every single day as I simply could not stay awake past about noon.

I started seeing a few doctors. I would explain to them, “I’m exhausted, my legs feel shaky, my body feels weak, I can’t figure this out.” During this time, I saw a handful of them. I did a sleep study, and everything came back normal. I tried gabapentin (nerve medication), and that didn’t change a thing. I tried a vitamin regimen and that did nothing. A doctor asked me, “Do you think you’re depressed? Let’s try some antidepressants.” So now, not only do I feel terrible, but I get to be a zombie as well. I tried to mention this to family members every now and again, “You know, Mom? I really don’t feel very good.” Of course, they are as helpful as possible, but what were they going to do? I had tried IV vitamins and minerals, I tried anxiety medication, nerve medications, cellular energy supplements, physical therapy, and many many other things, but nothing had even made the slightest dent.

I put up with feeling this way, being nervous about looking weak to others, but also not having any idea what I would even say to any of them. I started to get a very anxious, uneasy feeling on a regular basis because I would find myself constantly thinking, “How can I make it through this today?” Or “I can’t do this anymore.”

I had a son and so I pushed on. Fast forward a few years to when I was 25, I had moved back to Utah and found a job. On my way to work one morning, I remember literally feeling it hit me, it felt like I had instantly caught the flu in a matter of a few seconds. My head hurt, my body was aching, I could barely stay awake, I felt absolutely awful.

I’ll never forget that day, that is the day things became the definition of chronic.

Every day after that was filled with burning muscle pain, joint pain, fatigue, headaches, skin problems, gut issues, skin issues, you name it. I started going to see doctors a lot more because I knew that something was seriously wrong. Each doctor had their own idea, “Maybe it’s your thyroid? Let’s check your levels,” – the next doctor – “Maybe you’re anemic? Let’s check your levels.”

I saw pain doctors, internal medicine doctors, gastroenterologists, a urologist, a neurologist; the list goes on and on.

I explained my symptoms to each doctor and told them how long, difficult, and painful this had been. They would run a few tests and say everything looked normal. It was easy to tell that they had no intention of continuing this journey with me.

The diagnosis I received two different times was “fibromyalgia.” They love to throw that out there when they can’t figure it out. I remember going to see a doctor who required a VIP membership. On top of the visit, lab work, etc., there was a $1,800 annual fee to see this doctor. I figured, well, this will be it, they will figure it out. After a wide array of testing, she comes up with nothing. I asked one day, “Can you test me for Lyme disease? Which she did, and the results came back, and she told me, “You don’t have Lyme disease.” I said, “Are you sure? It matches my symptoms very well.” She said yes, it’s not that.

After that doctor, I thought I would try a wellness clinic. This doctor found that I had high ferritin levels (too much iron storage – not the amount of iron in your blood, but rather the amount that is stored around different areas of your body). The doctor said, “I think you might have hemochromatosis.” I remember thinking to myself, “This is amazing, I have an answer.” So he ran the test for the gene mutation that makes up hemochromatosis, and it came back negative. My iron storage was too high, but I did not, in fact, have the disease associated with it. I spent about a year bloodletting, which lowers your iron storage, and I never did feel a whole lot better.

1.5 years after seeing that doctor, I started reading about functional medicine and how these doctors are very good at finding the root cause of people’s issues. They look at results and study symptoms on a much deeper level than most doctors do. Insurance doesn’t cover these places though, so boy was it expensive. However, I wanted to try one last time before I gave up and just lived with it. This doctor asked me, “Have you been tested for Lyme disease?” And I said yes, about 2 years ago, and it was negative. He very confidently said that a lot of doctors test for Lyme disease without realizing how inaccurate the testing actually is. Basically, after about 6 weeks and $1,200 in specialty blood testing, the doctor came back to me and said we had a positive for Lyme disease.

After 12 years, I finally figured it out.

I started treatment recently and am so grateful that I won’t feel this way forever. I would like people to know that these functional medicine doctors are amazing! I saw probably 20 doctors over about 10 years – I bet I went to at least 75 appointments and spent thousands of dollars – and this doctor found it in 6 weeks! If you think you might have Lyme disease, then please look into alternative Lyme testing. The CDC standard is not accurate enough. I was one of probably thousands of people that went on undiagnosed for no reason.

– Dillon

The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.