In 2016, Nicole Bell's husband suddenly began experiencing cognitive decline. But the early-onset Alzheimer's diagnosis that followed just didn't add up.
In 2016, Nicole Bell’s husband suddenly began experiencing cognitive decline. But the early-onset Alzheimer’s diagnosis that followed just didn’t add up. The more she dug, the more confident she became: the real culprit behind Russ’s Alzheimer’s symptoms and eventual death could be Lyme disease. Bell is the author of What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness.
For Nicole Bell, her husband Russ Bell’s diagnosis of early-onset Alzheimer’s was inexplicable. Russ was young and otherwise fit and healthy. He had no comorbidities, he exercised, ate a diet optimal for brain health, and wasn’t genetically predisposed to the disease.
“It just didn’t make any sense,” Nicole told Being Patient in a November 2021 interview, around the release of her book What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness. “Every marker that I could find, I had him tested and he tested negative. It’s just the way I’m wired. I’m an engineer and I’ve worked with lots of really complex systems. There’s always a reason. There’s always a root cause.”
In Nicole’s book What Lurks in the Woods, she chronicles her family’s journey to uncover that root cause of his apparent Alzheimer’s — and their search for effective treatments for what might have triggered his illness: tick-borne infections, including Lyme disease.
Can Lyme disease cause Alzheimer’s?
“Before we got the diagnosis of early-onset Alzheimer’s, Lyme disease was my first thought,” Nicole said. “My husband was a hunter. He was constantly in the woods. He did all the landscaping in our property. I had personally pulled dozens of ticks off of him, and he had lived all over the country, including the northeast, southeast, the west, all over.”
However, the very first doctor the family went to following Russ’s cognitive decline symptoms tested Russ for Lyme. The results: He was negative. “We got thrown off the trail,” Nicole said, “and that was when we went to neurologist and got the diagnosis of early-onset Alzheimer’s.”
Despite decades of research, the answer to the underlying cause of Alzheimer’s remains elusive. But scientists are increasingly recognizing the complexity and heterogeneity of the disease: There are likely multiple factors that can trigger the beginnings of Alzheimer’s, and rather than being one singular disease, and experts say it probably consists of different subtypes.
So, researchers have been exploring the disease’s possible causes with fresh eyes. While the search for a definitive link between Alzheimer’s and infectious microbes — like Borrelia burgdorferi (the bacteria that causes Lyme) — has been inconclusive so far, experts are calling for more attention and resources devoted to exploring whether bacteria and viruses could lead to Alzheimer’s in some patients.
One thing the scientific community does know for sure: Bacteria and viruses are capable of changing our brains, sometimes permanently.
How Nicole Bell first knew something was wrong
“His first symptoms were all mood-based,” Nicole said of her husband when his condition first began to surface. “He became depressed. He became irritable. He became, frankly, kind of nasty, and we were arguing all the time, which wasn’t characteristic of our relationship. Then in 2016, I realized that he was starting to have memory issues. He would forget the code to the house alarm. He would forget the time to pick up the kids. He would constantly lose his keys.”
This is when she first knew something serious was unfolding. At this point, Nicole started searching Google for information about what might be causing this cognitive issues. One of the things that came up, she recalls, was Lyme disease.
Another was exposure to heavy metals. At this point, she said, she was exploring every option. “We did a lot of shooting. One of our biggest hobbies was sporting clays and you get exposed to a lot of lead,” she said. “He did a lot of reloading of lead pellets. I was worried that maybe his exposure to lead was leading to cognitive decline.”
Solving the Lyme disease mystery
She went down the path of exploring heavy metals as a cause of Russ’s early-onset Alzheimer’s symptoms. And despite that Russ had tested negative for Lyme, she didn’t give up on that theory either. But eventually, a neurologist diagnosed Russ with early-onset Alzheimer’s. With no other obvious causes, Nicole said, she accepted the diagnosis.
However, something still didn’t add up: Russ didn’t have a genetic predisposition to early-onset, and without that genetic component to the disease, his decline should not have progressed so rapidly. Nicole felt there was more to the story.
“I went to multiple neurologists and they kept really giving me no answers,” she said. “I had pretty much given up and I was starting to get all of our affairs in order and trying to figure out what to do. Then my brother called me. His wife had been having health issues for years, had been to doctor after doctor, and they had finally figured out the root cause of her illness, which was Lyme disease and three different co-infections. My brother’s a doctor, so he started researching and he just said, ‘I think this is the reason for Russ’ decline as well.'”
Nicole’s brother convinced her that Russ should get another test for Lyme — this time at a specialty lab.
“Instead of an antibody-based test, this was a PCR-based (polymerase chain reaction) test looking for the actual bacteria itself,” she said. “It looks for surface markers on the bacteria just like what we do for COVID. With that methodology, he actually tested positive.”
What they found, she said, was that he had Lyme (caused by Borrelia burgdorferi) and two other tick-borne co-infections, caused by Bartonella henselae and Babesia duncani. Both of these are common co-infections found alongside Lyme disease, Nicole said. Both can lead to cognitive issues.
“We went on a very broad spectrum course of antibiotics, and we had lots of ups and downs,” she said. “He did start presenting with joint pain and other things later. A lot of those symptoms started getting alleviated with the antibiotic treatment. There were times when we were very hopeful. He started to do better. His cognitive performance seemed clearer.”
Over time, however, Nicole said the decline had already taken too much of a hold. “I liken it to a forest that’s on fire and you’re trying to quench a portion of it,” she said. “We couldn’t get ahead of it and he continued to decline cognitively.”
Watch the full LiveTalk and read a transcription here:
What Lurks In the Woods: A Family’s
Story of Alzheimer’s and Lyme Disease
My mom had a rapid decline after her diagnosis of Lyme disease. We had taken her to the doc numerous times and her neurologist kept saying it was her Alz causing the sudden decline. They refused to test, only offering to add meds and up her dosage. Only later that week when she developed Bell’s Palsy in her face and we called an ambulance because we thought she was having a stroke, did anyone bother to look for the infection. I am convinced they took years off her life due to this. If you feel something is not right, keep digging!! Sometimes, you have to push very hard in order to make them listen.
Thank you for this article. As a Hospice Social Worker I had two female patients in their mid to early 40’s who did not get treatment for Lyme disease (one may not have known they had it, one patient did but did not seek treatment). Both passed away tragically. I’m so sorry about your husband. This article and I’m sure your book will help others.