May is Lyme disease awareness month, and one of our passions is educating our patients, families, friends, and as far as we can reach on the importance of being preventative when it comes to Lyme disease and any other co-infections carried by ticks. In this article, I will share my personal story of living with Lyme disease and the way that impacts how I interact with my patients.
The CDC estimates 300,000+ individuals yearly are exposed to Lyme disease in the United States. Unfortunately, there is a lack of resources dedicated to researching, preventing, and treating Lyme disease. In many ways, it is an unspoken epidemic.
One of the difficult things about Lyme disease is that “you don’t know until you know, and once you know, it’s too late.” Meaning even the most empathetic individual can’t understand the complexities of having Lyme disease or one of its many co-infections unless experiencing it themselves. Our main goal is to prevent you from ever having to know!
Why Is Lyme Disease Hard to Identify?
Lyme disease has been titled ‘the great mimicker’ because it can mimic so many different disease processes. It can be mistaken for fibromyalgia, chronic fatigue syndrome, MS, Parkinson’s disease, ALS, and psychiatric disease, among many others.
Many individuals with Lyme disease will see multiple doctors without a concrete answer for their mystery symptoms. They’ll run in circles trying to convince doctors to believe their presentation of symptoms and find someone who understands that this isn’t all in their head, isn’t attention seeking, and isn’t simply ‘anxiety.’
My Story: Living with Lyme Disease
If you are a patient of mine, you probably know a little about my history with Lyme disease. And you also probably know that our family has really bad luck with vector-borne infections.
My husband Tim was bitten in 2021 and had a horrible acute infection of Lyme and Bartonella. I won’t even get into the story now of how my dad was hospitalized in 2018 for eight days with a 105 fever and encephalitis from West Nile disease or the rest of my family who also contracted Lyme during the trip in 2021 when Tim was bitten. Like I said, bad luck with vectors.
I’ve lived with Lyme disease in more ways than one over the years. I’ve been on all sides of these infections. I’ve been the patient, fighting through treatment and feeling unwell daily. I’ve been the spouse desperate to find answers for their suffering significant other. I’ve been the child labeled ‘the crazy daughter’ by my dad’s doctors during encephalitis. And I’ve been the provider working diligently to help others in similar situations and desperately seeking answers.
For me, Lyme disease was not an overnight thing. I didn’t go to bed one night and wake up with an upended life the next day. Mine was more the slow progressive worsening over time. Many of my symptoms date back to childhood, with clear times when things would get dramatically worse.
Joint pain and anxiety were some of the more prevalent symptoms when I was young. Insomnia then made its way into the picture. In high school, my chronic fatigue became debilitating after a bout of mono. And then living in mold in college topped me off.
I couldn’t shower without needing to sit down halfway through due to exhaustion and dizziness. After a shower, I often needed to lie in bed and rest because the energy to continue getting myself ready was too much. Exhaustion, brain fog, constant muscle aches, anxiety, and neurological lapses became part of my daily life.
Often I look back and wonder how I made it—finishing nursing school, working full time as a NICU RN, getting through grad school, and discovering/treating/and healing from Lyme. My ignorance early on of all that Lyme entailed prevented me from realizing the seriousness of it and kept my mind in a state of constantly needing to focus on getting through the day.
Lyme is the passion that found me; I did not find it. It’s not what I was seeking or what I dreamed would be my path. The universe, of course, had different plans. Ultimately, there was a greater purpose to be born of my struggles, and it was my unknown drive to keep moving forward.
Thankfully, though I’ve had relapses and many ups and downs, I’m fortunate to have been in a remissive state with Lyme disease for several years. Regardless, I’m vigilant about my maintenance plan to keep my immune system strong and infection at bay.
It’s well worth the little things in life that I sacrifice to maintain my health—knowing that my limit is one cocktail with dinner, maybe once per month, choosing strong lifestyle habits in my sleep hygiene, moving my body daily, hydrating well, rotating peptides, a hefty dose of support supplements, boosters with IV therapy, and choosing to forgo junk food to keep my nutrition strong.
These didn’t come with ease, but over time they have become my lifestyle, and for that, I am eternally grateful. I feel better now than I did at 18, and I feel I’ve been given a gift in my newfound perspective toward my control over my health and well-being.
With my first relapse, I was feeling quite depressed about the fact that I’d “deal with this for the rest of my life.” Since then, I’ve gained a lot of perspective on my life journey and the fact that healing is not a destination. Living a healthy life is a journey. It has peaks and valleys. It’s not a straight line up, and I’ve learned to be okay with that. It’s also not lost on me that healing is linear, and there may be times in the future when I struggle again.
Ultimately, despite the struggles that come with this journey, I firmly believe that one’s greatest struggles can come from one’s greatest gifts. That is not to undermine the difficulty and challenge many individuals face with Lyme disease. But there is certainly something to be said for perspective and gratitude.
Healing From Lyme Disease
In healing and achieving remission, I was astonished by my ability to focus, achieve, and execute all I wanted out of life.
Getting to this level hasn’t been an easy journey, but it’s always been the only way. No matter what, the alternative of not maximizing my life and opportunities is non-negotiable.
This means even when it’s hard, even when I feel defeated, even when health issues creep back into my daily life, the only way forward is one step in front of the other. Because time will pass, you can either continue to put one foot in front of the other or stay in the same place.
Related Post: The Best Diet for Lyme Disease
What To Do If You Suspect Lyme Disease?
If you’ve experienced a sudden onset of unexplained symptoms or you’re experiencing a gradual climb of chronic symptoms that don’t fit into one well-explained diagnosis, it is important to rule out Lyme disease as a root cause of your underlying symptoms. Lyme disease does not discriminate. It has been found in every US state, and it can come with a variety of other infections simultaneously.
Our passion and our goal are to have the farthest reach we can in helping people understand the intricacies of this debilitating infection.
Whether you are the patient suffering from these symptoms or a loved one perplexed by what is going on with the person you care so deeply for, Lyme disease can be an exhausting and difficult journey. It is not for the faint of heart and often requires a lengthy journey to regain health and functionality.
The first step is a proper health history, examination, and testing to rule out Lyme or other tick-borne infections. Many infections are missed as the current standard for testing is suboptimal. Lyme disease also can cause immune system dysfunction, making accurate diagnosis even more difficult.
Seeing a Lyme-literate provider makes all the difference. Unfortunately, even infectious disease specialists fall short with this particular infection. Once you receive a proper diagnosis from your Lyme literate provider, you can begin the journey towards regaining your health and repairing your immune system.
When you get the right healing, you don’t have to continue living with Lyme disease. We achieved remission, and you can, too. Reach out to us here to learn more!