I Experienced Bizarre Neurological Symptoms For Years Before I Finally Got A Diagnosis
In 2012 I went on the third camping trip of my life. I had never really been outdoorsy; I was always more of a city person. After that trip, I had a flu that would come and go for months. My health really started to decline after that trip.
My journey to a diagnosis was scary and frustrating.
One day, while I was blow-drying my hair, I noticed a huge bald spot on my head that showed up overnight. At that point, I'd already been having some food sensitivity and immune issues, and my primary care provider had recommended I see an integrative doctor.
This doctor diagnosed me with alopecia, which is an autoimmune disease that causes hair loss. During that visit, he also did additional testing and found that I had celiac disease, another autoimmune condition.
From there, I cut gluten out of my diet, feeling hopeful that this was the key to alleviating all of my symptoms. But unfortunately, it wasn't a magic fix—in fact, I began to experience additional issues. I started having joint pain, brain fog, light and sound sensitivity, and all these other weird symptoms that would come and go. Some days would feel more manageable, but other days were unbearable. The joint issues became so severe that there were times I couldn't walk up the stairs of my home or even get out of bed.
I was starting to get desperate.
Based on my doctor's recommendation, I decided to try the autoimmune paleo diet. This did help a bit—I had a little more energy, clarity, and some of my skin issues started to clear up. But other symptoms kept getting worse, especially the neurological challenges (brain fog, short-term memory issues, light sensitivity).
After that, I was diagnosed with Hashimoto's disease, another autoimmune condition that affects thyroid function. I thought this explained my lack of energy, so I started taking medication for my thyroid. Again, it did help a bit, but some symptoms kept creeping back in. I went through this for about two years.
I remember sitting in my doctor's office, weeping. I didn't understand what was wrong with me. I couldn't work; I couldn't even drive because I would forget how to get home sometimes. I just felt worthless. My doctor said the only thing he hadn't tested me for yet was Lyme disease. I told him I seriously doubted it could be Lyme, considering I'd only gone camping three times in my entire life, and I never went hiking. But he decided to test for it anyway because we were running out of options.
When the results came back, I was positive for Lyme.
My doctor thought there was a good chance my other autoimmune conditions were also triggered by the Lyme, like a cascade. It was a lot to take in. I went through a bit of a grieving process, considering what this new diagnosis would mean for my life. But at the same time, I felt relieved to finally have some more answers.
I started working with a Lyme specialist right away. It turns out a tick bite had set all of this in motion. Also, before getting Lyme, I think my gut health was in pretty bad shape. I'd been living in an apartment that had mold, and I was constantly getting sick and taking antibiotics. So I think my body wasn't in the best place to begin with, which may have given the Lyme disease the opportunity to wreak havoc.
From there, I tried every natural treatment imaginable for the next three years: heavy metal detoxes, herbal supplements, ozone therapies, and IVs. During that time, I got about 70% better, then I hit a bit of a plateau. So I had to do something big from that point, and I ended up trying stem cell therapy using my own stem cells—and that's what finally sent me into remission. I did that treatment in September 2016, and it took about 10 months to fully kick in, but I've been symptom-free since 2017.
Life after my health journey.
I definitely still do a lot to keep my body and immune system healthy. I have to be mindful of the autoimmune conditions that I continue to have, but I've been able to live a pretty good life by knowing my triggers.
I still have to be very strictly gluten-free because of my celiac, which is always challenging, especially when I'm traveling or eating out. I'm really sensitive to mold, so if I stay somewhere that has mold, it can definitely set off some symptoms for me. I also make sure my thyroid health is optimized, and I do regular labs to check in.
Carving out time for rest is also a big thing for me. Before I got sick, I was always busy, and I definitely think that affected my health. Something that I've learned from my journey is that if I'm feeling tired, it's OK to slow down—I don't have to do everything, and sometimes it's better to rest and nourish my body, to make sure I can stay resilient.
How living with chronic conditions has affected my mental health.
My entire health journey was a challenge to me physically and mentally. From the start, even having to go gluten-free was difficult. It didn't seem like a big deal at first, but when you go through that process, you realize how much of your old life you have to mourn—you can't just go anywhere with friends and order anything off the menu, you have to plan things out meticulously. There's a loss of freedom that comes with these kinds of lifestyle shifts.
You can’t judge someone’s health status based on how they look.
And, of course, with any invisible illness, it's difficult because you may look fine on the outside—but no one realizes how sick you are, how miserable you feel, or how much energy it takes to even shower or change your clothes. So a lot of time, people don't believe you, which was really challenging for me. Some friends would only see me on good days because those were the days I would actually have energy to meet up—and they were a bit judgmental, which was very depressing. Thankfully, other friends were supportive, but I think that's a misunderstanding that still exists with chronic illness.
At one point during my recovery, I had trouble walking, so I ended up getting a handicap decal for my car—and I would get the dirtiest look from people. I think it's important for people to understand that just because someone isn't in a wheelchair doesn't mean that person isn't struggling with their mobility or experiencing other challenges. That experience certainly made me grow as a person because I realized you can't judge someone's health status based on how they look.
Where I'm finding the positives from my journey.
For anyone living with a chronic condition, I believe mindset is so important. Trusting that your body can heal and that you can get better is so crucial—at least this way of thinking is what ultimately got me through my journey. Even if your diagnosis is something incurable, that doesn't mean you're not able to live a full life.
Personally, I feel like I'm a lot healthier now—even with all of my autoimmune conditions—than I was before I got sick. I feel like my life is more aligned, and I'm doing the right things for my body rather than pushing myself beyond a breaking point.
I've been able to share lessons from my own experience to hopefully help others, as well. Since I was on a strict meal plan for my autoimmune conditions, I put together a meal plan for myself. After doing this successfully, I decided to turn it into a cookbook and a meal plan online so other people could use my framework if they're in a similar situation.
This work is a celebration of the idea that even after chronic illness, you can take your experience and do something great—even help others in the process.
Ultimately, I believe it's so important to maintain hope—and you can have a pretty awesome life once you do find your right path to healing.
Erika Schlick is a nationally recognized cookbook author and blogger as well as an IIN Certified Health Coach. She began her trail to health in 2012 after becoming chronically ill with Lyme Disease, Mold, Heavy Metals, and multiple Autoimmune conditions. What followed was a five-year journey toward remission through various treatments including stem-cell therapy and lifestyle and dietary changes. Once a licensed Architect, Erika found her calling and passion in helping others heal from chronic illness and autoimmune diseases. She shares her journey and tips for healthy living on her blog, The Trail To Health. Erika lives in Los Angeles, CA, and enjoys cooking, spending time with her fiancé and two French Bulldogs, and traveling the world.
The Trail To Health is a place of health and healing through healthy living and clean eating. It’s a resource full of answers, recommendations, and information about all things health. Author Erika Schlick shares her delicious and simple paleo and gluten-free recipes in her cookbook, Wandering Palate, and her blog, as well as healing strategies for autoimmune diseases, Lyme and chronic illness recovery as well as the latest health trends. It’s a trusted resource for readers looking to stay healthy and happy on their very own Trail To Health. Erika works with a limited number of coaching clients privately which you can learn more about her services and offerings on her website, thetrailtohealth.com