My Chronic Lyme Story
Nature is one of my greatest loves.
It fills my spiritual, mental, and physical wells to overflowing with the purest form of energy, peace, and security. It provides an infinite source of the unknown, a depth to life with which at least for me, only motherhood can compete. Without it, my life wouldn’t be mine. I crave it. I surround myself with it in my home through botanical color schemes, natural materials like wood, stone, natural textiles, and wilderness-related imagery. I dress myself in its floral patterns, forest green colors, and linen and cotton fabrics. I watch it closely, lovingly, each day as I commute next to sweeping foothills.
Nature, ironically, is also the source of my chronic illness. Four years ago, during one of my first Mother’s Days out (my son was just under 2 years old), I was unknowingly bitten by a tick, and now have presently incurable Chronic Lyme Disease.
We have the most gorgeous wilderness park nearby. It sits right up against a mountain, and boasts tangles of ancient oaks, a wild camellia forest, a fragrant rose garden, a burbling stream lazily winding through the park, and a delicate Japanese garden with placid ponds. It teams with wildlife - squirrels, deer, rabbits, hawks, and more. It is so wild and beautiful, we had considered getting married there years ago.
On that gorgeous Mother’s day Sunday in May of 2019, I wandered into the camellia forest with my son, never once considering there could be something dangerous lurking in the fallen leaves on the forest floor. I reveled in my son’s wonder as we walked through this magical place together, my ankles bare in a pair of leather mules. We had a brand new mosquito crisis in Los Angeles; These new invaders (coincidentally known for biting the ankles) allegedly arrived in a tire shipment that Spring and took over the city. If that is where the tick bit me, I never had a chance to notice a tick bite, as I already had an impressive collection of mosquito bites - huge welts, actually - on my legs. Like many Angelinos, I was allergic to these novel mosquitoes from across the Pacific. Each bite would turn into an enormous and firm lemon-sized bump, hot to the touch - some so bad they would bruise after the swelling faded. The perfect camouflage for a lone tick bite.
A little over a week later, I became so sick I was afraid it’d kill me. I had what I thought at the time was the worst flu of my entire life. I waited for it to pass for days on end, my fever high and never breaking despite my efforts. My throat was on fire. I starved for a week, and I mean truly, because eating was too painful. Driven by hunger, I would eventually break down and gulp down one of my son’s fruit pouches maybe once a day, crying afterwards from the pain and swearing I wouldn’t do it again. I was a ghost in my own house - dragging myself from the couch to the bed, completely unable to parent, a wisp of a human. My husband grew worried and said he’d never seen me that sick in our 10 years together.
Completely leveled with fatigue, I finally dragged myself to urgent care, where I tested negative for Strep- the only thing they tested me for due to my intense throat pain. They shrugged and just told me I had a bad flu. I proceeded to the pharmacy to pick up an antiviral prescription. I was so sick that when they informed me that they were out of the medication because “It’s May, and no one gets the Flu in May”, I simply sat down in a crumpled mess on the pharmacy floor, my purse spilling its contents, and cried.
The woman helping me put her hand to her face in recognition of my severity and said in a hushed breath, “Oh, you really need it right now.” She called three other pharmacies and convinced the final to hold it for me. Somehow (I probably should not have been driving), I made it to the pharmacy and got the medication, not knowing it wouldn’t help one bit.
Finally, after about 7 days, I began to come out of it. I returned to work, breaking down in tears as I told my coworkers about my experience. “One night,” I told them, “I thought to myself, this is how people die of the flu.” You hear of it happening sometimes, and I was convinced it was happening to me then. I took a photo of myself that night because my face was completely red from my internal heat. I wanted to document myself in case I didn’t make it. I know this sounds dramatic, but I felt like it could take me at any moment. I had never been so sick in my entire life - not even close.
Back at work and back to life, thinking I “recovered” from the acute infection, I was unaware that a bacteria was slowly taking over my body, literally boring through my tissues and organs, crossing the blood-brain barrier into my brain and spine, infecting my joints, and changing my future forever.
It wasn’t until months later, in September of 2019, that it began to occur to me that something was really wrong. I started noticing muscle twitches in very strange places - the inside of my elbows, behind my knees, my glutes - just everywhere. I started feeling an intense numbness in my hands and feet, and started to feel a numbness that would travel from my scalp, down my jaw, and into my arms. This was accompanied by intense muscle spasms - my rib cage turning into a literal prison for my lungs. Sharp, stabbing pains that would make me audibly gasp would come and go between my ribs. My chest wall and shoulder muscles became locked in a permanent grip, making it feel as though my lungs had no room to expand. They were trapped at empty. I would breathe and still feel like I didn’t get enough air. This, I would learn later, is known as “air hunger”.
I began experiencing sleep disruption, where I would fall asleep only to have a sudden, startling wake-up with my heart pounding and in a sweat. This began to happen over and over again, all night, every night. It got so bad that I was getting zero sleep at night, and desperately resorted to alternating between Nyquil and Ambien to sleep even just a little, which I knew wasn’t healthy. My usual melatonin was proving useless, and I didn’t know what else to do.
Memory loss and speech slurring followed. I found myself barely able to function at the office. One day I looked so dead in a meeting, multiple people called or came to my office afterwards to check on me. I would count to five only to forget what number I counted to in seconds. I was trapped in a hellish nightmare of no sleep, pain, weakness, numbness, fear, memory loss, and more.
I went to my GP, where he assured me it was just anxiety. I went to a neurologist, who assured me it was just anxiety. “Hormones can do crazy things!” they both said. Unfortunately, this is a common occurrence for 51% of the population.
Finally, one night, the symptoms became so intense, I became worried that I might be experiencing a heart-attack. I decided to go to the ER, where after much worry and waiting, they took a look at my existing Thyroid condition and said “You just have anxiety.”
A couple months passed as I deteriorated. My knees so sore I could barely make it up or down the stairs. My muscles so weak I could not hold my son. One morning, I couldn’t lift my spoonful of cereal, and I decided to go to the ER again. As I was being processed in the intake room, a nurse looked at my chart and said, quite annoyed, “You already came here 6 weeks ago for the same thing?!” I meekly said “Yes…” She informed me that they wouldn’t be able to do anything more for me today than what they did for me the last time. I began crying and simply said “I am just really scared”.
Thankfully, the attending Physician was nearby and heard this exchange. When she came to see me after getting some blood work (normal) and an EKG (normal), she said, much to my relief, “Has anyone checked your brain?”. Finally, someone was doing something, anything, to help me. She ordered a CT scan, which, thankfully, came back normal, but she did demand and write an order for me to go see a different neurologist. The feeling of someone taking me seriously as I panicked in my own body was such a relief.
Finally, after finding a persistent, albeit kooky Neurologist who requested all the tests, I got an answer. I sat in her office on January 3rd 2020 (Yes - right before the global pandemic) as she flipped through my most recent blood test results. She stopped sharply as she got to one page, looked up at me and said, “Well you’ve got Lyme Disease - did you know that?!” No ma’am, I did not know that. She exclaimed, “You have to be treated immediately!”, as I beamed because I thought that meant my troubles were over.
I left the office overjoyed at having gotten a reason for my suffering, but not knowing what 9 months of undiagnosed Lyme Disease meant. Not knowing that the spiral-shaped bacteria Borrelia burgdorferi had disseminated through my whole body by then. Not knowing there was no known cure for it at that point, and that there was so much controversy around treatment and even diagnosis. Not knowing, then, that it meant I’d be living with it for 4 years and counting. I did learn, however, that I was incredibly lucky it was only 9 months undiagnosed. Many Lyme sufferers spent 5, 10, 15 years either undiagnosed or misdiagnosed. Lyme is known as “The Great Imitator”, mimicking MS, Fibromyalgia, and more. Many medical professionals outside of the East Coast are convinced Lyme isn’t even in their area, so they do not test for it.
After four years, two of them on two separate antibiotics, I am worlds better, though certainly not cured. With the similarities Long Covid shares with Chronic Lyme and other post-bacterial and post-viral infections, thankfully, more funding and more research has been poured into Lyme Disease. In the grand scheme of things, I consider myself lucky that I got it now, as more information has been discovered about it in the last four years than in the previous decade. I closely watch Lyme related news on breakthroughs in testing, a possible vaccine for others, and hopefully, a cure.
In the meantime, I am dealing with remissions and relapses, having just come out of a bad four month relapse right now. A positive aspect being I have become extremely connected and in tune with my body, intimately knowing its’ limits, its cues, it’s signals that I need to slow down or get rest and go inward for a bit. I have become very comfortable with pulling back and resting when needed.
Slowly, I am building up the courage to go back to the place where it all began. To my own disbelief, I haven’t been back since that beautiful day in May. Imagine, a fierce nature-lover who is a little bit scared to step on grass, and a lot-a-bit scared to wander in the forest!
I think that right now is time. I think that is an action I will take to reclaim my courage, and to stop living from a fear-based space with the wilderness, my oldest friend. It is time to shift my limiting beliefs of “I can’t go in nature or I’ll get sick again” to “I can enjoy nature fully by taking simple precautions.” With a pair of knee high riding boots, socks, and a tick check afterwards, I can traverse this stunning landscape with openness and love in my heart.
To my chronic illness kindred out there…
What is a limiting belief you repeat to yourself? Write it out on paper, and see if you can re-frame it from a place of hope, action, and power. Notice how the shift makes you feel.
Example - “I’m all alone in this.” can shift to “I have the power to be my own advocate, to educate myself, research, and to find some solutions to help me feel the best I can right now. I can share what I’ve learned with others who have the same illness, and I can turn to that same community for help and support.”
Know that you are not alone, and there is always a community available to you. Whether in blogs or on social media (Reddit, TikTok, or there is a new Chronic Illness feed on Bluesky!), within documentaries and books, or in person like Meetup or other support groups, there are always people who truly understand.
