Lyme Disease

On June 1, 2020, I woke up to the room spinning, with a headache that made me feel like my head was going to burst at the seams and a brain fog that clouded both my thoughts and memory. I didn’t think too much of it at that exact moment, so I put on my shoes and went for a run thinking I was just dehydrated or had one too many glasses of wine. It wasn’t until I fell and stumbled during this run that I knew something else was wrong.

From this day forward, I began a medical journey that I wouldn’t even wish on my worst enemy. It began with some simple blood tests, which led to some larger tests including Brain MRIs, Spinal Taps, etc. Although there were things along the way that didn’t add up (some atypical Brain MRIs, spinal tap results), it was chalked up to “getting older” and most of my issues were psychosomatic. This comes after being tested for Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome, ALS, migraines, depression, Lupus, etc.

I’m not gonna lie, there were definitely times over the past 2 years when I started doubting myself and thinking maybe it was all in my head. But things got worse. I started getting so exhausted that a simple task like changing my bedsheets required me to sit down and rest, I tore the plantar fascia in my left foot, weights that I usually lifted became too heavy and I found myself not being able to focus when watching tv or reading a book. Less than 2 years ago, I was running the Chicago Marathon and now I can’t even change my bedsheets without getting tired?

It was thanks to my wonderful massage therapist that I found my current Integrative Functional MD. She’d always ask me about my medical journey and one day she suggested I go see her doctor who found her breast cancer before any other doctor had found it. If anyone knows me, you know I had to try. And that I did.

January 2022. Up until now, none of my doctors ever put all of my symptoms together, but by the grace of God, one finally did. Lyme Disease. Lyme disease is a bacterial infection you get from the bite of an infected tick. Symptoms of the initial infection go beyond the well-known “bullseye” rash and can include fever, headache, chills, fatigue, muscle and joint aches, and swollen lymph nodes. If the infection isn’t treated, symptoms can worsen to severe headaches, arthritis and severe joint pain, dizziness, nerve pain, and memory issues, among others. If caught early, many cases can be treated successfully. But if like me, you don’t know you have it, things can become much worse. 

It all finally made sense. After my diagnosis, I thought through my entire medical history. I realized that I had actually had a lot of symptoms — I just didn’t know they were symptoms. I was sick all the time. I had random injuries and diagnoses. I had joint problems, especially on the left side of my body. I was in my early 30s, too young for my knees and feet to hurt so much.

I finally had a name for the face of the devil I was battling. As relieved as I was to finally have a diagnosis, I was also overwhelmed knowing that this journey will be neither easy nor cheap. Mind you that in the state of Illinois, there are fewer than 20 LLMDs (Lyme Literate Medical Doctors) to begin with. Trying to get in to see one of these doctors is a battle in itself. And then the cherry on top is the fact that insurance companies do not work with or support Lyme treatment. Get this – in order to be seen (in a timely manner) by an LLMD, I had to first commit to a $5,000 membership (per year) fee before being seen. I know what you may be thinking because I thought the same. But if these doctors are spending on average 1-2 hours/patient a day and not receiving any funding from insurance, this is the only way these doctors can practice medicine. I’ve never felt so hopeful and discouraged at the same time. 

I can only speak about my first month in treatment. I paid the hefty $5,000 fee and had my first appointment which lasted 4 hours long. 25 vials of blood, 2 urine samples, 1 saliva/DNA sample, 1 prescription antibiotic, 8 supplements later I have already spent $5,500 in my first month of treatment… and this is only the preparatory phase for the more aggressive treatment to come.

The famous proverb, “health is wealth.” This is my new goal. Not another marathon, not another degree, not another house. At this very moment, health is my ultimate goal. Health is our greatest wealth and asset. A healthy body gives me the strength and energy that help me to achieve better results in every aspect of my life. Being able to sleep at night, walk without pain, eat and enjoy food is the main meaning of happiness. My overall health and well-being—emotional, mental, spiritual as well as physical— will always be my number one priority. Without it, nothing else matters.

Caroline Gajzler is the co-founder of Chicks Fighting Ticks.

This microblog post was a featured post in #slowchathealth’s #microblogmonth event. You can search for all of the featured posts here. Please do follow each of the outstanding contributors on social media (including Caroline Gajzler, the author of this post) and consider writing a microblog post of your own to be shared with the global audience of slowchathealth.com

Pair this blog post with the following:

How can we #stopSTIgma? Changing the conversation around sexually transmitted infections (STIs) by Ina Park

(Podcast) Patient Zero: Lyme Disease via NPR

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