Carolyn’s Lyme Disease Journey
By Carolyn Mukai
My strange health problems began the summer following graduation from college. The last few months of my college career were a whirlwind of lacrosse games, parties, awards, speeches, research projects, and painting on canvases that were significantly bigger than me. I was running purely on peanut butter and adrenaline as I wrapped up an amazing four years of school.
I was really looking forward to having nothing to do that summer. For the first month or two I enjoyed sofa surfing, music festivals, and for the first time in my life – not having a plan.
That August, shortly after my 23rd birthday, I started having debilitating vertigo and panic attacks. I had weeks of intermittent fevers and just feeling “off.” I had some food sensitivity testing done that came back with over 10 different foods that my body was highly reactive to. Something was clearly not right.
To add insult to injury, it was time for me to take my first major career steps, and I was in no shape to do so. Nonetheless I applied for all of the lab assistant jobs that I could find on monster.com and Craigslist. After all, I didn’t major in chemistry for fun. But I felt physically awful and uninspired by the jobs I was coming across.
I started having intense mood swings and excruciating, stiff neck pain. I was highly sensitive and would burst into tears at the drop of a hat. I thought if only I could secure a job and find an apartment I’d surely feel better.
I woke up the morning of my first interview that September feeling dazed and confused, for a lack of a better phrase, but canceling the interview was not an option – I needed that job! I felt feverish, had difficulty speaking and even experienced altered depth perception. So onward I went. Unsurprisingly, the interview was a disaster.
That day was the culmination of the weird symptoms I had been experiencing for the previous month. I left the interview and had a full blown panic attack in my car, right there in the parking lot. My sister Emily came to get me and drove me home, where I proceeded to lose my ability to speak even further. Emily kindly offered me 30 chlorella tablets to help detox my body and I soon realized I had lost the ability to swallow, as I spit them right back out. My body shook violently with chills and I was hysterical. What was happening to me? My body and brain felt possessed, and I felt as though I no longer had any control.
For the next couple of weeks, my symptoms would disappear by morning and resurface in the evening in an endlessly cyclical fashion. I went to neurologists and infectious disease specialists and neither had an answer for my collection of symptoms. My mom, who also happens to be a skilled internal medicine doctor, had a sneaking suspicion that it was Lyme disease. But both the neurologist and infectious disease specialist insisted that it was not Lyme disease, as my test came back negative, I couldn’t recall having a tick bite, and I didn’t have the characteristic bull’s eye rash.
Over the following months, I began to conduct my own research. I implemented a strict anti-inflammatory diet that consisted only of vegetables, the highest quality meats and grass-fed butter. There was a very short list of foods that didn’t trigger my symptoms, and some of my favorites (ugh, did I miss ice cream!) unfortunately didn’t make the cut. I was desperate to feel better and indeed this strict diet improved my symptoms by about 50% initially.
But I was still off. I was fatigued, depressed and had no stress tolerance. My digestion was completely thrown off. It felt as though my intestines had forgotten how to move food through me properly. Not to mention I was losing weight, and not in a good way. My menstrual cycle was non-existent. I had developed multiple chemical sensitivities and had become a human mold detector. I needed more help.
I began seeking out functional medical practitioners on the east coast, where they tested me for Lyme disease a second time, using a more sensitive test. Finally, almost a year after my acute illness, I had a confirmed Lyme diagnosis. I will never forget the day that I found out. I was heartbroken and overjoyed all at once. On one hand, I finally had a name for my collection of symptoms. On the other, I knew that Lyme wasn’t something that could be dealt with so easily. It would be a long and convoluted road to recovery.
After much contemplation, I decided to seek a naturopathic approach to my care. I found a wonderful ND in San Diego that specialized in Lyme treatment, and offered a unique blend of alternative and conventional antibiotic therapies. I felt like I was getting the best of both worlds, and finally had someone to guide my journey back to health. Soon, I began to see bits and pieces of myself coming back to life despite the huge hit to my gut bacteria from the multiple courses of antibiotics. I found solace in the alternative therapies included in my treatment, such as herbal tinctures for detox and probiotic therapy to support my body as the antibiotics did their thing.
Eventually, the antibiotics began to do more harm than good. I couldn’t expose any of my body to sun without ending up with severe burning pain all over my skin (the antibiotics I was on, and that were flooding my bloodstream, reacted negatively with the sunlight). I decided it was time to move on to the next phase of my healing. If the bugs weren’t gone after six months of multiple types of heavy-duty antibiotics, I joked that I’d rather keep the bugs. So I moved on to essential oils of herbs like oregano, thyme, and tea tree, which are known for their wide array of potent antimicrobial, yet restorative compounds. I followed a specific protocol monitored by my naturopathic doctor for another four months until I could slowly reduce and then discontinue the dosing all together.
Along the way, I discovered that there’s so much more to healing than eating a perfect diet or taking the right supplements. After a while, my perfect diet made me sick. It became an obsession, and isolated me from my family and friends. I began to realize that I let Lyme define me, and that I was suffering in large part because of post-traumatic stress of coming down with the disease. The second, and arguably most important phase of my healing was addressing the mental and emotional consequences of having Lyme disease. It was a slow process but eventually I rewrote my inner dialogue around the disease so that it would no longer define me, which helped me to regain trust in my body and complete my healing.
My friends and family were pivotal in this second phase of healing. My sister Emily and her partner Erica were extremely supportive throughout the course of my illness and were so accommodating to my dietary restrictions. I would consistently depend on my friends Drew and Rose who had graduated with me and lived near by. We had a small little family between us that included frequent visitors from college who had since moved out of the area. I also had an incredibly accommodating job working for an inspiring alternative medicine practitioner.
At the time, I was in a long distance relationship with my boyfriend, Daniel, who lived in British Columbia, Canada. Despite the distance between BC and my home in Southern California, his support was unwavering and his understanding of my unpredictable mood swings still amazes me. I have since joined him in British Columbia to pursue my naturopathic medical degree.
Being healthy is about having purpose, connection, belonging, and feeling safe in the world. When I came down with Lyme, suddenly the world was unpredictable and scary. This idea was perpetuated by the fact that for the first time in my life, my future was also unpredictable and scary. I was no longer in a predictable college setting, where I had been very successful. I had to figure out how to be successful all over again in unchartered territory and in a career path that I knew would not satisfy my purpose.
Had it not been for Lyme disease, I’m not sure that I would be on the path I’m on today. My illness and my support network helped me navigate a very uncertain time in my life. Part of me believes that my body very literally rejected the path I was on and redirected me to my current path.
I’m now studying the medicine that gave me back my life, and I have a much deeper respect for my body than I did prior to all of this. I’m healthier, happier and more balanced than I could have ever imagined three years ago. While I still maintain a healthy diet, my definition of “healthy” has changed to include my mental and emotional well being as well. Thankfully, that now includes the occasional ice cream cone with the ones I love.