“I always said I’d been bitten by a tick – yet they didn’t take me seriously”
A widow’s story of years without a diagnosis, of despair and the shadow of Lyme disease
In 2005, a woman lost her husband; to this day, she remains convinced that his death was caused by a tick bite several years earlier and the resulting, untreated Lyme disease. Although a definitive diagnosis was never made, the wife believes that all the signs pointed to this, based on the symptoms, medical history and the deterioration in his condition over the years.
The story is particularly harrowing because the woman herself had previously suffered from Lyme disease, so she knew the signs of the illness all too well. Yet she was unable to get help for her husband.
“I knew exactly what that rash meant”
The family had already been affected by Lyme disease. The wife’s condition went undiagnosed for years before she finally found the right doctor and received long-term treatment.
“I’d read a great deal about Lyme disease. I’d looked up the symptoms, the progression, everything. So when I saw that inflamed, spreading rash on my husband’s thigh after the tick bite, I knew straight away that something was wrong.”
The tick bite occurred in 2001. The bite site became inflamed, and according to his wife, characteristic erythema migrans – one of the best-known early symptoms of Lyme disease – developed. This rosette-like, spreading redness is often sufficient in itself for a clinical diagnosis of Lyme disease.
However, her husband did not want to see a doctor.
“I asked him to go, but he wouldn’t listen to me. He said it would go away.”
From flu-like symptoms to complete immobility
Over the following months, more and more symptoms appeared.
At first, he had flu-like symptoms: lethargy, weakness and general malaise. Later, neurological and joint symptoms followed. The man became increasingly fatigued, grew weaker by the day, and his muscles began to waste away.
“He gradually broke down. He had less and less strength. At first, he simply found it harder to move, then he could barely stand up.”
By 2004, his condition had become critical. He was confined to a wheelchair, then became completely immobile.
“In the end, he had to wear nappies. He was completely worn down.”
“I told everyone about the tick bite”
The couple went from doctor to doctor. Neurological examinations, various departments and tests followed one after another. According to his wife, they mentioned the tick bite and the earlier symptoms every single time.
“I told everyone the background. That a tick had bitten him. What the mark looked like. What symptoms he had. But for years, Lyme disease wasn’t even seriously considered.”
It was only later, in a neurology department, that a Lyme test was carried out.
However, the result did not provide a clear answer.
“They said they couldn’t say for certain, but it might be a possibility. However, without a definite diagnosis, he didn’t receive any treatment.”
This remains a source of deep pain for the widow to this day.
Lyme disease or multiple sclerosis?
The wife is convinced that her husband had so-called “MS-like” symptoms. Neurological complaints similar to those of multiple sclerosis can also occur in Lyme disease, as described in the medical literature.
Complications of Lyme disease affecting the nervous system may include:
- muscle weakness,
- gait disturbance,
- paralysis,
- sensory disturbances,
- chronic pain,
- cognitive problems,
- severe neurological deterioration.
In some cases, the symptoms can be so similar to those of multiple sclerosis that it is difficult to distinguish between the two conditions.
“There were people with MS in our family and among our friends. I saw exactly the same symptoms in them.”
To this day, she does not know whether her husband actually had Lyme disease, whether the infection triggered an MS-like condition, or whether another, unrecognised neurological disease was the underlying cause. One thing, however, she feels certain of:
“We never got an answer.”
The truth did not come to light in the rare diseases ward either
As his condition deteriorated, the man was transferred to a department specialising in rare diseases, where further investigations began.
The family hoped that the cause of the severe symptoms would finally be revealed.
However, there was no time left for that.
“He died two weeks later.”
Without a diagnosis.
“Don’t wait years”
To this day, the woman regularly reads articles, patient accounts and research on Lyme disease. More than twenty years have passed since the tick bite, but the questions remain.
She feels that if his medical history had been taken seriously earlier, perhaps everything would have turned out differently.
“Anyone in this situation should see a Lyme disease specialist. Don’t wait years. I trusted the doctors, and in the meantime, time passed.”
Why is early detection important?
Lyme disease is a bacterial infection spread by ticks. If detected early, it can usually be treated effectively with antibiotics. However, if left untreated, in some cases it can affect the nervous system, joints and other organs.
Diagnosis is often not straightforward:
- lab results are not always clear,
- symptoms may resemble those of other diseases,
- and patients often go undiagnosed for years.
This is why a detailed medical history, documentation of the tick bite and recognition of early symptoms are particularly important.
This story is not a substitute for a medical diagnosis or expert opinion. It presents one family’s personal experience – and the pain caused when questions remain unanswered forever.
(C) Lyme Borreliosis Foundation
