An “out and about” father of two died after suffering memory problems brought on by Lyme disease, which left him struggling to remember the alarm code when he was diagnosed with Alzheimer’s.
Russell Bell, 65, of Raleigh, North Carolina, was tested for the tick-borne disease in 2016 after he also had mood swings – but the swabs came back negative.
Doctors then said the computer scientist had suffered from early Alzheimer’s after realizing he could no longer solve math equations meant for a six-year-old.
Nine months later, with his condition deteriorating “rapidly”, wife Nicole decided to take him for further tests after her brother – whose wife had just been diagnosed with the disease – suggested he had Lyme disease.
This time the tests were positive and Bell was immediately put on a course of antibiotics to ease his symptoms.
Russell Bell, 65, of Raleigh, North Carolina, was brought in for Lyme disease testing by his wife Nicole (right) after he began recurring and becoming irritable in 2016
But the first swabs were negative. The family (pictured Nicole and Russell on their wedding day) struggled for nine months as his symptoms worsened “rapidly”.
The antibiotics helped relieve his symptoms, but after 18 months of treatment they kept coming back and his mental decline continued.
His wife transferred him to a nursing home in 2019, and he died there in January after the COVID pandemic left him “bent” and “frail” after being unable to see his family for six months.
About 30,000 people are diagnosed with Lyme disease in the United States each year, says the Centers for Disease Control and Prevention (CDC).
What is Lyme disease?
Lyme disease is a bacterial disease that people get from tick bites.
Within the first 30 days of illness, an infected person will experience fever, chills, and headaches, among other symptoms.
A bull’s-eye rash may also appear around the tick bite.
Infections are usually diagnosed by observing symptoms and testing the blood for antibodies to the bacteria.
However, if the swab is taken within the first three weeks of infection, the disease can be missed because the levels of antibodies in the blood are still too low.
People who are not treated suffer from severe headaches, sagging face and dizziness, among other signs.
In some cases, the brain and spinal cord can also become inflamed, causing memory problems.
Cases caught in the early stages can be easily treated with antibiotics.
However, the infection can prove more difficult to cure when caught late due to inflammation in the body.
About 30,000 Americans are diagnosed with Lyme disease each year.
Most infections are easily treated with antibiotics if caught early. However, if treated in later stages, the disease can be difficult to cure because inflammation in the immune system leads to persistent symptoms.
Lyme disease is typically transmitted through the bite of a deer tick, which is commonly found in long grass and wooded areas.
It is diagnosed with a blood test that looks for antibodies to the bacteria.
However, if these are done within the first three weeks of infection, they can miss the disease because antibody levels are too low to detect. A study in Clinical Microbiology Reviews suggests that up to 60 percent of cases are missed during this period.
People infected with the virus initially experience fever and muscle pain within three to 30 days after the bite.
A bull’s-eye rash — medically known as erythema — may also appear around the bite site, which is usually red but rarely hot or painful.
If left untreated, infections can cause severe headaches, drooping of the face, and dizziness.
In some cases, they can also cause inflammation of the brain and spinal cord, leading to behavioral problems and memory problems.
Bell’s wife wrote for TODAY that her husband was not suffering from the telltale rash — which occurs in about 80 percent of cases.
But she said Lyme disease was one of her first thoughts about her husband’s illness in 2016.
She said: “Because Russ was very close to nature and because I knew he’d had ticks over the years, Lyme disease was actually one of the first things that came to mind when I first started dealing with the symptoms of it to address my husband’s cognitive decline.”
Describing his early symptoms, which included struggling to remember codes he’d known for years, she said: “My husband Russ, who used to pick the kids up from school every day, had come home and could hear the booming Don’t turn off the alarm.’
“I came home later that day and everything was fine.
“But I’ve noticed that Russ keeps asking questions. Forget when to pick up the kids. And he couldn’t remember the alarm code – the same one we’ve been using for years.”
After brain tests, doctors were convinced he had either suffered a stroke or had early onset Alzheimer’s – which occurs around the age of 65.
An MRI scan ruled out the stroke, which led to the diagnosis of Alzheimer’s. Bell then declined “quickly” as the treatments failed to slow this down.
After he was re-diagnosed with Lyme disease, his wife said the antibiotics “would help, and then Russ would stop taking them and refuse.”
“Some of the more familiar symptoms of Lyme disease emerged – joint pain, swelling in the knees. But cognitively he continued to deteriorate.”
When Bell was first transferred to the nursing facility, he was described as “okay” as his wife came to see him every day.
Bell was diagnosed with Lyme disease after his wife wanted him tested again. He came back positive and was put on antibiotics, which improved his condition. But his mental decline continued, eventually leading to his wife placing him in a home
Bell died in January after the COVID pandemic caused him to be separated from his wife and family for six months. Describing her loss, Nicole said, “I had lost my partner, the person I communicated with every day.”
But when the Covid pandemic hit, they were separated for six months – and only got to see each other again when he had a seizure.
“It was now September 2020,” his wife said. ‘He was bent over. The man who had once been so engaging – the life of the party – was empty.
“People asked if I thought he recognized me. I did not think. Russ died in January 2022.”
She described her loss as follows: “I had lost my partner, the person I communicated with every day.”
Nicole wrote a book about the experience called What Lurks in the Woods, which was published last October to celebrate Bell’s 65th birthday.