Part 1: How I Got Diagnosed With Lyme Disease

Deborah Kan is the founder and CEO of Being Patient, a journalism-driven news platform on Alzheimer’s, dementia, and brain health that she launched after her mother’s Alzheimer’s diagnosis and years as a journalist for the Wall Street Journal. She built Being Patient to translate complex dementia research into clear, unbiased reporting for patients and caregivers navigating the same uncertainty she once faced. Connect with her at deborah@beingpatient.com.

Dear readers,

This week I tested positive for Lyme disease. You may be wondering why I am telling you this, but I have learned through talking to many experts that Lyme and other tick-borne illnesses can potentially wreak havoc inside our brains. I will go into this later, but first I wanted to share how this all evolved in the hope that other people in similar situations can learn from my own experience.

Almost three months ago, I found a small bite on my stomach. I had not been hiking and was in San Francisco. I ran on roads and not through the tall grass and never found any tick on me. I now think it was highly possible that my dog could have carried the tick into our home. The bite was a small raised bump but it didn’t itch like a mosquito bite. I noticed after a week that it wasn’t really going away but rather just looked the same.

A month later, from the beach in Costa Rica, my kids asked me what happened to my stomach. The small bump had transformed into a bruise with a red area spreading into an oval shape. I didn’t have a bulls eye and honestly, wasn’t thinking at that time that it was a tick bite but rather more likely a spider bite because I know spider bites can last a bit longer.

I ignored it, as I figured it wasn’t anything too serious. The red spot was apparent and I was thinking at this point it was some sort of strange skin irritation. Two months later from the time I got the initial bite, I developed a raised red patch on my face right near my cheekbone. It looked like a hive, and it was sometimes itchy but other times not. I booked an appointment with the dermatologist, who diagnosed me with dermatitis, a condition like hives that causes red and itchy skin. He put me on a steroid cream and an antihistamine. After five days of following his advice, I noticed it wasn’t improving and even getting worse. I did what a lot of doctors fear: I turned to Claude, hoping that artificial intelligence could solve my dilemma. 

I loaded the pictures of my skin with a description of my timeline, and here is what AI told me:

Erythema migrans (Lyme disease), possibly disseminated. This is worth naming specifically because it matches your description closely — a lesion starting where a bite occurred, expanding into a red patch, and then a second lesion appearing weeks later at a distant site is a recognized pattern when the infection spreads through the bloodstream (multiple erythema migrans lesions). A topical steroid wouldn’t treat this at all, which could explain why it isn’t improving. This is the one I’d most want ruled in or out quickly, since it’s treated with antibiotics and earlier treatment is better. If your doctor hasn’t asked about tick exposure or ordered Lyme serology, it’s worth raising directly.

I booked a direct-to-consumer test on Quest and went in for a blood test. That day, I was hopping on a plane to New York and started to really fear that Lyme had been circulating in my body for months. I called a doctor friend to prescribe me doxycycline, the antibiotic most effective against the bacteria and picked it up as soon as I got to New York. I had to wait around five days to get the results of my blood test but it came back positive, which I have since learned is not the norm. Many people get a false negative result on that initial screening test because they haven’t yet produced the antibodies against the Lyme bacteria.

I have done several interviews on microbes and the brain and Lyme stood out as one of the ones that could be important to treat early. Brain fog and memory problems can occur when the disease reaches a chronic state. I called Nicole Bell and Nikki Shultek, two dynamic women who I have met through my work at Being Patient and are driving advancements in diagnostics and research. Much like my own personal story, both Nicole and Nikki were driven to work in this area from personal hardships.

Nicole Bell’s husband Russ was diagnosed in 2016 with early-onset Alzheimer’s,  a diagnosis that never added up. He was young, fit, ate well, and had no genetic predisposition. Nicole, an MIT educated engineer wired to hunt for root causes, suspected Lyme from the start: Russ was a hunter who spent his life in the woods, and she’d pulled dozens of ticks off him over the years. But an early antibody-based Lyme test came back negative. The turning point came when her doctor brother urged a retest, this time a PCR test that looks for the bacteria directly rather than antibodies, and Russ came back positive for Lyme (Borrelia burgdorferi) plus two tick-borne co-infections, Bartonella and Babesia, both linked to cognitive issues. 

Broad-spectrum antibiotics brought real but temporary improvement before the decline took hold. Nicole likens it to a forest that is already on fire, where you can quench one section but never get ahead of the blaze. Russ ultimately died, and she wrote What Lurks in the Woods to chronicle the search for his true root cause.

Bell is now CEO of a tick-borne disease diagnostic company called Galaxy. Her story is the lived version of a hypothesis researchers are now working to formalize, that persistent infection may drive some cases of neurodegeneration. Enter Nikki Shutek!

Nikki Schultek came to this work through her own body. A former pharma professional with a business degree, she fell systemically ill, including frightening neurodegenerative symptoms, shortly after becoming a mother, and only recovered after being diagnosed with Lyme disease, Chlamydia pneumoniae, and other co-infections and receiving antibiotic therapy. That experience became a mission. In 2017 she founded the Intracell Research Group to unite researchers and clinicians studying infection-driven chronic illness, then co-founded and now leads the Alzheimer’s Pathobiome Initiative (AlzPI), a global effort investigating whether infections contribute to neurodegeneration. AlzPl seeks to solve whether persistent microbes in the body and brain are a hidden driver of Alzheimer’s and other chronic diseases, and what that would mean for how we diagnose, treat, and prevent them.

In my case, I was lucky that these women were accessible to me. A simple text and phone call away, they told me what I needed to do, when and the corresponding treatment that I should follow. This was enormously helpful as I tried to navigate the testing and treatment of Lyme. It’s not so straightforward because ticks are dirty critters and potentially carry, along with Lyme, an assortment of other bacterias and parasites that can actually help fuel Lyme’s destruction. In fact, the majority of infections come with another co-infection.

Readers, I am well aware that this story is too long to tell you in one newsletter, so I am going to end by saying I will write more on the diagnostics and treatment next week. For now I am awaiting the second line of blood tests which will determine if more treatment is necessary. 

Please do pass this newsletter along to anyone who may have suffered from Lyme disease or lives in an area where there is a lot of Lyme. As I have learned from starting Being Patient, education is the best path forward to better treatment outcomes. My own apathy and the misdiagnosis from my dermatologist cost me time. Send me your questions. One tick bite has me determined to spare another person the same fate. More next week!

With hope,
Deborah