As part of our LiveTalk series, Being Patient spoke with Nicole Bell, author of What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness, about her husband’s unexpected Alzheimer’s diagnosis—and how Lyme disease became be the prime suspect.
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 exercised, ate the Mediterranean diet and wasn’t genetically predisposed to the disease.
In Nicole’s book What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness (Oct. 2021), she chronicles her and Russ’ journey to uncover the root cause of his early-onset Alzheimer’s — and their search for effective treatments for what might have triggered his illness: Lyme disease.
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 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 infectious microbes like Borrelia burgdorferi (the bacteria that causes Lyme disease) and Alzheimer’s 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.
Being Patient spoke with Bell about her husband’s early symptoms of Alzheimer’s and why she suspects that Lyme disease could have caused her husband’s symptoms of dementia. The following is an excerpt of the LiveTalk.
Being Patient: Tell us about Russ’ early symptoms of Alzheimer’s.
Nicole Bell: His first symptoms were all mood-based. 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.I just attributed it to lifestyle changes. We had two young children. Russ had gone into early retirement to be Mr. Mom. I figured maybe that just [wasn’t] the right move.
I encouraged him to go back to work but he didn’t want to do that. His personality changed. I thought we were going to be headed for divorce because it was just getting combative and not a happy 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. That was when I realized that something more sinister was at play.
Being Patient: What led you to think that his symptoms could be caused by Lyme disease?
Nicole Bell: When I realized he was having cognitive issues, [I started searching] on Google. One of the things that came up was Lyme disease. Another thing that came up in my searches was exposure to heavy metals.
We did a lot of shooting. One of our biggest hobbies was sporting clays and you get exposed to a lot of lead. He did a lot of reloading of lead pellets. I was worried that maybe his exposure to lead was leading to cognitive decline.
Being Patient: What made you think in the first place, ‘What could possibly have caused these symptoms of Alzheimer’s?,’ and to search for the underlying cause of his illness?
Nicole Bell: It just didn’t make any sense. 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.
He was very healthy. He had no comorbidities. He ate a Mediterranean diet. He exercised. All the things they say to do for brain health he was doing them. It didn’t seem to make sense and I kept looking for answers.
Before we got the diagnosis of early-onset Alzheimer’s, Lyme disease was my first thought. 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. I had him tested at the first doctor that we went to and he tested negative. We got thrown off the trail and that was when we went to neurology and got the diagnosis of early-onset Alzheimer’s.
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Being Patient: How did you eventually find out that Russ did in fact have Lyme disease?
Nicole Bell: I kept pushing for a long time. I went to multiple neurologists and they kept really giving me no answers. 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 to 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.’
The CDC (Centers for Disease Control and Prevention) recommends a methodology which is the standard two-tiered test that looks for the immune system’s response to the bacteria. The problem is when you’ve had a chronic infection for a while, your immune system is suppressed. You may not produce enough antibodies to actually trigger the test. In order to test positive, you need to have five bands of these different antibodies on the test, and Russ only had one, so he was considered negative.
My brother convinced me to have him retested with a specialty lab. Instead of an antibody-based test, this was a PCR-based (polymerase chain reaction) test looking for the actual bacteria itself. It looks for surface markers on the bacteria just like what we do for COVID. With that methodology, he actually tested positive.
Being Patient: What type of treatments did Russ receive afterwards?
Nicole Bell: He had Lyme and two co-infection. In addition to Borrelia burgdorferi, which is the bacteria causing Lyme. He also had Bartonella henselae and Babesia duncani, both of which are common co-infections in Lyme disease and can lead to cognitive issues.
We went on a very broad spectrum course of antibiotics, and we had lots of ups and downs. 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.
But I think over time, we really just couldn’t get ahead of some of the decline that occurred. I had mentioned heavy metals earlier, and some of the treatment for that led to additional challenges. I liken it to a forest that’s on fire and you’re trying to quench a portion of it. We couldn’t get ahead of it and he continued to decline cognitively.
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org