Living With Lyme

Medicine glass jar, capacity for liquid medicines with an open neck without stopper, isolated subject on a white background.

By Gray Zurbruegg

Editor’s note: this is a long-form piece originally printed in Field Ethos Journal 2023 Volume 1.

The sun was in my eyes. The client was in my ear. Truth be told, I was barely listening. My focus was on getting through the dust storm kicked up by the car ahead of us. 

He was one of those holier-than-thou types, with an imposing stature and seemingly jolly nature that somehow allowed folks to give credence to his behavior. But, come to find out, he’d been fired from almost every job and, using his words, “made and lost a fortune multiple times.” 

He had lots of questions. “Where’d you go to college?” was one. I shared that I’d started at Ole Miss, but had to take a semester off, then decided to transfer to UNCW. 

“Hmm. Why’d you take the semester off?” 

As if he wasn’t annoying enough, he’s now asking personal questions. But I obliged. 

“I left school to deal with anxiety. My second semester of freshman year was the beginning of sleepless nights, incessant rumination and panic attacks causing stroke-level blood pressure.” 

And then it came … the most-shocking question yet: “Would your parents be disappointed if you hadn’t gone back to school? I mean, they were the ones paying for your college, right?” 

My blood started boiling. 

I was in shock that the client, who worked with underprivileged youths, would ask such a question. I assumed he, of all people, understood the importance of openly supporting those dealing with challenging, cripplingly unfamiliar circumstances. 

I responded, “It wasn’t their decision. And if they had a problem, I would’ve started paying for college myself.” 

But my frustration wasn’t really with this guy in my truck. It was that I still didn’t know why anxiety appeared out of the blue and ruined my college experience. 

It turned out my anxiety came from a tick my roommate pulled off my back after turkey hunting one spring afternoon. There was a big red bullseye around the bite. But I was just an 18-year-old kid from the city who knew nothing about ticks or tick bites. And what I didn’t understand until recently was that Lyme disease wreaks havoc on the brain and neurotransmitter production. Anxiety is a side effect. 

I managed my health during the remainder of college and into my mid 20’s by controlling every input possible, including eating a very restrictive diet, maintaining top level fitness, and socializing very little. 

My thought was, If nothing gets too far out of whack, I should feel good, right? This worked, to the extent that I stayed inside my narrow set of boundaries, but it wasn’t an enjoyable way to live. 

And then at 25, I experienced genuine heartbreak. 

I’d moved to Baltimore for work. I reconnected with a college buddy and was fortunate to plug into his friend group. And in this group, I met a girl. Not only did I open myself up to a relationship, but I started socializing again and going out on weeknights. I was loosening  my control on life and loving it. In my world, this was a huge step. I allowed myself to be vulnerable. 

But after a few months, we had The Talk. Turns out, she just didn’t feel the same way about me. It was crushing. All the struggle to put myself out there seemed like it was for naught. The episode kicked off seven days of no sleep, anxiety, and the start of a serious depression. 

In short order, I was spinning out of control. My mind couldn’t be trusted. Waking up in the morning felt like I’d been through a two-a-day football practice. And “morning” is a stretch, it was more like 11 a.m. before I could even move. I went to a revered local psychiatrist. Bad decision. He pumped me full of psych meds without a single blood or urine analysis. 

It numbed me. I felt a little better. I fell asleep for the first time in days. But over the next five years, the wheels really came off. 

I gained 50 pounds in 24 months — all while maintaining the same workout routine and diet. Sleep was nonexistent. In fact, during a sleep study, we found that over a course of six months the longest duration of deep sleep I got was 20 minutes. Most people get hours of deep sleep each night. My body was constantly aching and sore. 

If my job didn’t allow extreme latitude and flexibility, I would’ve been fired.

Who knew that Lyme disease riddles the body and brain with inflammation and slowly shuts down important bodily functions—like metabolism? But that’s just what was happening physically. Give a healthy dose of no sleep and decreased confidence to someone with anxiety and depression, and it’s a lethal cocktail. 

My then-girlfriend, now wife, was a saint. I’m still shocked our relationship survived this period. We met on a blind date—one I almost bailed on. But my roommate at the time coerced me into going. It was fun, the conversation was easy. She was finishing her master’s in occupational therapy and exuded a warm, caring nature. However, she also picked up on the fact I was dealing with something. She said she could see it in my eyes that were somewhat sunken with dark bags. 

Yet Katie stuck by me through it all. I know it wasn’t easy. It tested her empathy, love and kindness daily. She could tell if I was having a bad day by the energy in the house when she got home. She said it felt like she was walking into a dark cloud. Sometimes I wondered if she should have just turned around. 

It was a dark period, no doubt. I was drinking too much, abusing benzodiazepines, spending thousands on stuff for fleeting happiness. Yet nothing made me feel better. Not the $2,000 suit, $6,000 watch, $500 dinners. A single 1-mg Ativan no longer worked; it took 2 or 3. An amount that would make most people drool on themselves, I was mixing with large quantities of alcohol. 

By this time I was napping a couple hours every day, only to go to bed as soon as it got dark enough not to feel guilty. I loved the winter months because the days ended earlier. I was cold and unhappy. If anything seemed like it would take additional energy, I didn’t do it. I was spending thousands out-of-pocket in search of the best doctors, searching for someone who could help me not feel like dying. I was never truly suicidal, but there was a point where dying felt like it may be easier than the course I was on. I just didn’t want to feel awful all the time.

Then one day I ran into an old friend while shopping in Georgetown. After about 10 minutes she asked if I was ok. “It’s like you have ‘fuck off’ written across your forehead,” she said. It was such a quick, accurate read that I was a bit shocked and defensive. But she was right. My energy was totally off. Finally, around January 2020, my close friend’s wife, an up-and-coming physician asked if she could do some blood work. I figured a fresh set of eyes couldn’t hurt. The bloodwork came back… .

She said, “We have some real problems here. Inflammation is off-the-charts. Literally, I’ve never seen such high levels. You have telltale markers of a prolonged mold exposure or… Lyme disease.” 

“Lyme? Can’t be. I’ve been tested four times over the last decade.” 

She offered to call a top Lyme treatment specialist on my behalf, who happened to live close by in Annapolis, Maryland. A few weeks later, as I filled out the new-patient intake form, I thought, “Here we go, another $1,000 out-of-pocket. That should put me around $30,000 now.” I was skeptical because the specialist didn’t take health insurance, as insurance doesn’t cover his non-FDA-approved techniques and tests. But the appointment could’ve cost $5,000 and I’d have paid it. I was desperate and slowly dying. 

He ran more blood work using a German testing system. As he entered the room about 20 minutes later, he said, “You have Lyme Disease.” 

“But I’ve been tested!” 

What he explained is that the current FDA-approved Lyme test can only pick up acute infections within six weeks of being bitten by a tick. It’s a broken test because Lyme has a way of hiding in the blood. Thus, the reason for my multiple false-negative results. 

We started treatment immediately, coinciding with the start of COVID-19. Fortuitous timing? Absolutely. The treatment regimen included blood transfusions, lipid and ozone IVs, antibiotics and much more. As the Lyme dies, its cellular membrane breaks down, releasing more poison into the bloodstream. The actual scientific term is “herxing,” short for The Jarisch-Herxheimer Reaction. 

After this, as if you’re not already feeling bad enough, it gets much worse before it gets better. During the herxing, I felt as if I had a combination of the flu and arthritis: body aches, joint pain, energy depletion and occasional nausea. Fortunately, the pandemic lockdown allowed me to stay home, receive treatment and slowly recover. 

But after a decade-plus of searching and two full years of treatments, I’m Lyme free. Now, we’re remediating all of the damage. As part of the remediation, I’m injecting myself with a total of 12 shots per week. The injection regimen is primarily aimed at maximizing my output—energetically, physically, romantically. 

I’ll likely never have kids, but we’re trying. To assist, I’m injecting myself twice weekly to help stimulate sperm production. Without Testosterone Replacement Therapy (TRT), at 34, I’d have levels comparable to a 70-year-old, so I give myself two testosterone shots each week. This helps regulate mood, weight, muscle mass, complexion, sleep … Needless to say, it’s important. 

Despite exercise and TRT, I still couldn’t lose weight. I’ve been diagnosed with metabolic trauma. My metabolism simply doesn’t burn beyond a minimal baseline. So, we started an experimental diabetes drug that’s off-label usage helps with weight loss by speeding up my body’s glucose metabolism. After four months of usage, I’m down to 205 from 225 peak. It’s amazing to regain my physicality. I can now see my old self in the mirror again. 

Also, my physical recovery from working out is hindered because I’m starting in deficit. As the doctor said, “80 percent may be your new 100 percent.” So, each weeknight I inject myself with a peptide cocktail to help muscle recovery and growth hormone production. Then there’s the weekly B12 shot to help with energy and general inflammation. And the occasional Toradol shot for joint inflammation spikes. 

But inflammation damage in my brain is permanent. 

We’re treating the brain damage with intravenous ketamine. Next to testosterone, ketamine has had the largest impact on my recovery. The therapy helps stabilize my mood, depression and sleep. It’s also been shown to re-stimulate damaged neural pathways. 

In my first ketamine treatment, tears were flowing down my face … I had an immediate and deep bodily feeling that it was going to be helpful. Having never experienced this before I’ve learned that there’s actually a term for it: Interoception is the perception of sensations from inside the body. As a silver lining to all of the treatment, especially ketamine, I’ve become very attuned to my body-brain dialogue. 

It’s taken a village to piece me back together. I’m no longer just surviving. I think I’m close to thriving—something I’ve not felt since my teens. It’s not an easy state to maintain and it takes constant effort, but it’s now actually achievable. Yet I’m suspicious of it. It feels too good to be true. I keep wondering when I’ll start experiencing morning fatigue again… or when I’ll start retreating to the couch instead of wanting to socialize with folks … or when I’ll stop sleeping through the night. 

But today I have more tools to deal with life’s curve balls. I’ve assembled a team of doctors, therapists, family and friends that I can call on to help. And I’ve learned to wholeheartedly appreciate the periods of grace and health. It’s an ongoing testament to fortitude and dogged perseverance. 

Lyme Disease is a killer … of people … of livelihoods … of friendships … of families … of opportunities and of dreams. My hope is this article will shed light on something many know little about. 

If you happen to read this while going through hell, just keep going. There’s light on the other side. Trust me. I’m there.