An ‘outdoorsy’ father-of-two died after memory problems triggered by Lyme disease that left him struggling to remember the alarm code were diagnosed as Alzheimer’s.
Russell Bell, 65, from Raleigh, North Carolina, was tested for the tick-borne disease in 2016 after he also began having mood swings — but the swabs came back negative.
Doctors then said the computer scientist had early onset Alzheimer’s after finding he could no longer complete math equations meant for a six-year-old.
It was nine months later with his condition declining ‘swiftly’ that wife Nicole decided to take him for more tests, after her brother — whose wife had just been diagnosed with the illness — suggested he had Lyme disease.
This time the tests came back positive, and Bell was immediately switched onto a course of antibiotics to alleviate his symptoms.
Russell Bell, 65, from Raleigh in North Carolina, was taken for tests for Lyme disease by his wife Nicole (right) after he started repeating himself and became irritable in 2016
But the initial swabs came back negative. The family (pictured Nicole and Russell on their wedding day) were left struggling for nine months as his symptoms ‘swiftly’ got worse
The antibiotics helped alleviate his symptoms, but after 18 months of treatment they kept coming back and his mental decline continued.
His wife moved him to a residential care facility in 2019, and he died there in January after the COVID pandemic left him ‘hunched over’ 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 every year, the Centers for Disease Control and Prevention (CDC) says.
What is Lyme disease?
Lyme disease is a bacterial disease that humans catch from tick bites.
Within the first 30 days of illness an infected person will suffer fever, chills and headaches among others.
A ‘bulls-eye’ shaped rash may also appear around the tick bite.
Infections are normally diagnosed through observing symptoms and testing the blood for antibodies against the bacteria.
But if the swab 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 get treatment go on to suffer severe headaches, drooping on one side of the face and dizziness among other signs.
In some cases the brain and spinal cord can also become inflamed, triggering memory problems.
Cases caught in the early stages can be easily treated with antibiotics.
But it may prove harder to cure the infection if it is caught late because of inflammation in the body.
About 30,000 Americans are diagnosed with Lyme disease every year.
Most infections are easily treated with antibiotics if they are caught in the early stages. But if they are treated in later stages it may be difficult to cure the disease because inflammation in the immune system leads to symptoms persisting.
Lyme disease is typically caught through being bitten by a deer tick, which frequent long grasses and woodland areas.
It is diagnosed using a blood test that scans for antibodies against the bacteria.
But if these are run within the first three weeks of infection they may miss the illness because antibody levels are too low to be detected. One study in Clinical Microbiology Reviews suggests up to 60 percent of cases are missed in this period.
People infected with the virus initially suffer fever and muscle aches within three to 30 days of being bitten.
A ‘bulls-eye’-shaped rash — medically termed an erythema — may also appear around the bite site, which is typically red but rarely hot or painful.
If infections are not treated they can lead patients to suffer 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 which leads to behavioral difficulties and memory problems.
Bell’s wife wrote for TODAY that her husband did not suffer the tell-tale rash symptom — which appears in about 80 percent of cases.
But she said that in 2016 Lyme disease was one of her first thoughts for what could be her husband’s illness.
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 looking into the symptoms of my husband’s cognitive decline.’
Describing his early symptoms where he struggled to remember codes he’d known for years, she said: ‘My husband, Russ, who picked up the kids from school each day, had arrived home and wasn’t able to turn the blaring alarm off .’
‘I got home later that day and everything was fine.
‘But I noticed Russ asking repetitive questions. Forgetting what time to pick up the kids. And he couldn’t remember the alarm code—the same one we had used for years.’
Following brain tests doctors were convinced he either had suffered a stroke or had early onset Alzheimer’s — which strikes at around 65 years old.
An MRI scan ruled out the stroke, leading to the Alzheimer’s diagnosis. Bell then declined ‘swiftly’ with treatments failing to slow this.
After he was re-diagnosed with Lyme disease, his wife said the antibiotics ‘would help, and then Russ would come off them and decline’.
‘Some of the more well-known symptoms of Lyme came up — joint pain, swelling in his knees. But cognitively, he continued to decline.’
When Bell was first moved to the care facility he was described as ‘ok’ with his wife coming to visit him every day.
Bell was diagnosed with Lyme disease after his wife wanted him to be retested. He came back positive, and was put onto antibiotics which improved his condition. But his mental decline continued eventually leading to his wife moving 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 struck they were separated for six months — and only able to see each other again when he had a seizure.
‘It was now September 2020,’ his wife said. ‘He was hunched over. The man who had once been so engaging—the life of the party—was vacant.
‘People asked if I thought he recognized me. I didn’t think so. Russ passed away in January of 2022.’
Describing her loss she said: ‘I had lost my partner, the person I communicated with every day.’
Nicole has written a book on the experience titled ‘What Lurks in the Woods’ which was published on Bell’s 65th birthday in October last year.