He became aggressive and lost his memory: how a tick-borne virus took her husband from an American woman

Nicole Bell from North Carolina told how one tick bite changed her husband beyond recognition, and later completely took him away. She shared her story with the publication Yahoo!. Next - from the first person.

Photo: Shutterstock

It was 2016, I got a call from work. The house alarm went off. My husband Russ, who picked up the kids from school every day, came home and couldn't turn it off.

I came home and everything was fine that day. But I noticed that Russ asks repetitive questions. Somehow I forgot what time to pick up the children. Then he couldn't remember the alarm code - the one we've been using for years.

Before the alarm incident, relations between Russ and me were not very good. He walked gloomy and irritable, often angry. I thought we were heading for a divorce. But now I understand that these were the very first signs of illness from a tick bite.

Russ walked a lot in the great outdoors and I knew he had been bitten by ticks over the years, Lyme disease was actually one of the first things that came to my mind when I started looking into the symptoms of cognitive decline. The point, however, is that Russ never had a fever or tick-related rash that we knew about, and a standard test for Lyme disease came back negative.

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We did a blood test to better understand what's going on with Russ. He showed nothing out of the ordinary. Tick-borne diseases like Lyme are gone. Russ went to a neurologist for cognitive testing, and his deterioration turned out to be much worse than I suspected. He could not do simple mathematical calculations, which my 6-year-old child then easily did. He was a computer scientist and electrical engineer. It shocked me. The neurologist said he either had a stroke or Alzheimer's.

The MRI showed no stroke. A PET scan revealed severe metabolic abnormalities consistent with advanced Alzheimer's disease. He was 60.

However, early-onset Alzheimer's disease is not usually characterized by a rapid decline in function without a genetic component that Russ did not have. However, he declined quickly. But after about nine months, I accepted the diagnosis—I talked to my brother Scott, whose wife had suffered from a chronic illness for many years, and she had just been diagnosed with multiple tick-borne diseases. Scott told me then: “I think the same thing happens with Russ.”

The husband was tested with a PCR test, just like we are now testing for COVID-19, which looks for the disease itself, not antibodies. Russ had three tick infections—three Bs, as they are called: Borrelia (known as Lyme disease), Bartonella, and Babesia.

Elisabeth Landswerk, MD, who specializes in the treatment of dementia and Alzheimer's disease, said untreated Lyme disease can cause "brain fog" and neurological symptoms that mirror those of Alzheimer's disease.

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We lost 15 months, but, nevertheless, there was hope. Infections are at least treatable. Which is what we started doing. And next year can only be described as a roller coaster. Antibiotics began to help, and then Russ refused them. Some of the most well-known symptoms of Lyme disease appeared - joint pain, swelling of the knees. But cognitive function continued to decline.

After 18 months of treatment, I made the most difficult decision of my life - to transfer my husband to a rehabilitation center.

For a while, Russ was fine. He received the socialization that I could not provide at home. He received good medical care. I visited him almost every day and helped with showers and stuff. This continued until March 2020. Then COVID-19 came along and I couldn't see Russ for six months.

I finally saw him when he was transferred to the hospital due to a seizure. It was September 2020. He lost so much weight, hunched over. People asked if I thought he recognized me. I didn't think so. Russ passed away in January 2022.

Throughout this time, I kept a diary. I lost my partner, the person I interacted with every day. Keeping records of my experiences was an outlet. In 2020, she wrote a memoir, What Lies in the Forest. They were published on October 23, 2021, which would have been Russ's 65th birthday.

I wanted to honor his life as well as raise awareness about tick-borne diseases. They don't always show up in their typical form, and if you or a loved one is experiencing mood swings, anxiety, or depression, I recommend that you find a doctor who is knowledgeable about Lyme disease and related conditions.

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