A father of two died outdoors after memory problems caused by Lyme disease that made it difficult for him to remember the alarm code was diagnosed as Alzheimer’s disease.
Russell Bell, 65, of Raleigh, North Carolina, was tested for the tick-borne disease in 2016 after he also started experiencing mood swings — but the swabs came back negative.
Doctors then said the computer scientist had Alzheimer’s when he discovered he could no longer make math equations intended for a six-year-old.
Nine months later, as his condition was deteriorating “rapidly,” his wife Nicole decided to put him in for more tests after her brother — whose wife had just been diagnosed with the disease — suggested he had Lyme disease.
This time the tests came back positive and Bell was immediately switched to a course of antibiotics to relieve his symptoms.
Russell Bell, 65, of Raleigh, North Carolina, was taken for tests for Lyme disease by his wife Nicole (right) after he started repeating himself and became irritated in 2016
But the first smears were negative. The family (pictured Nicole and Russell on their wedding day) struggled for nine months as his symptoms worsened ‘fast’
The antibiotics helped relieve his symptoms, but after 18 months of treatment they kept coming back and his mental decline continued.
His wife took him to a residential care facility in 2019 and he died there in January after the COVID pandemic left him “bent over” and “vulnerable” 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 contract through tick bites.
Within the first 30 days of illness, an infected person will develop fever, chills, and headaches, among other things.
A bulls-eye-shaped rash may also appear around the tick bite.
Infections are normally diagnosed by observing symptoms and testing the blood for antibodies to the bacteria.
But if the smear is done within the first three weeks of infection, it may miss the disease because antibody levels are still too low in the blood.
People who do not receive treatment develop severe headaches, drooping on one side of the face and dizziness.
In some cases, the brain and spinal cord can also become inflamed, causing memory problems.
Cases detected at an early stage are easily treated with antibiotics.
But it can be more difficult to cure the infection if it is noticed late because of 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. But if treated in later stages, it can be difficult to cure the disease, as inflammation in the immune system causes symptoms to persist.
Lyme disease is usually caught by being bitten by a deer tick, which is common in tall grasses and woodland areas.
It is diagnosed using a blood test that scans for antibodies to the bacteria.
But if these are done within the first three weeks of infection, they can miss the disease because the antibody levels are too low to be detected. a study in Clinical Microbiological Assessments suggests that up to 60 percent of cases are missed during this time.
People infected with the virus initially develop a fever and muscle aches within three to thirty days after the bite.
A “bulls-eye” shaped rash — medically called erythema — may also appear around the bite site, which is usually red but rarely hot or painful.
If left untreated, infections can lead to severe headaches, drooping on one side of the face, and dizziness.
In some cases, they can also cause inflammation of the brain and spinal cord, leading to behavioral and memory problems.
Bell’s wife wrote for TODAY that her husband didn’t have the telltale rash symptom — which occurs in about 80 percent of cases.
But she said that in 2016, Lyme disease was one of her first thoughts about what her husband’s illness might be.
She said: “Because Russ was very outdoorsy and because I knew he had ticks on him over the years, Lyme disease was actually one of the first things that came to mind when I started seeing the symptoms of my husband’s cognitive decline. started investigating.’
Describing his early symptoms where he struggled to remember codes he’d known for years, she said, “My husband, Russ, who picked the kids up from school every day, had come home and couldn’t turn off the loud alarm. †
“I came home later that day and everything was fine.
“But I noticed Russ was asking repetitive questions. Forgot what time the kids have to be picked up. And he couldn’t remember the alarm code—the same we’ve been using for years.”
After brain tests, doctors were convinced he had either had a stroke or had Alzheimer’s, which strikes at about age 65.
An MRI scan ruled out the stroke, leading to the diagnosis of Alzheimer’s disease. Bell then refused “quickly,” and treatments couldn’t slow it down.
After he was re-diagnosed with Lyme disease, his wife said the antibiotics “would help, and then Russ would come off it and go.”
“Some of the more familiar Lyme symptoms came up: joint pain, swelling in his knees. But cognitively he continued to deteriorate.’
When Bell was first transferred to the healthcare facility, he was described as “okay” because his wife came to visit him every day.
Bell was diagnosed with Lyme disease after his wife wanted him retested. He came back positive and was given antibiotics that improved his condition. But his mental decline continued, eventually leading to his wife taking him to a home
Bell died in January after the COVID pandemic led to him being 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 couldn’t see each other again until he had a seizure.
“It was now September 2020,” his wife said. “He was bent over. The man who had once been so captivating—the life of the party—was vacant.
“People asked if I thought he recognized me. I do not think so. Russ passed away in January 2022.”
Of her loss, she said, “I had lost my partner, the person I communicated with every day.”
Nicole has written a book about the experience entitled “What Lurks in the Woods,” which was published last October on Bell’s 65th birthday.