Mum's plea as tick bite forces her to miss decades of her life

One mother says a tick bite caused her decades of misery and she is now house handcuffed and bedridden.

Tracey Weeks said she only “exists” and has not been able to properly live her life since 1997.

Tracey, 48, has Lyme disease, which affects between 2,000 and 3,000 in the UK each year. She is currently at a stage where she cannot even attend medical appointments.

Heartbreakingly, she has had to miss milestones in her teenage daughter’s life as well as weddings, funerals, baptisms, and seeing friends and family as she suffers from chronic fatigue and cannot walk far.

She says she needs to make peace with the world that goes on around her and says that her story is “not just hers” as there are many others in similar positions across the country.

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Trying to raise awareness about Lyme disease, Tracey says people with their condition need research – as well as “relevant treatments to filter down to an accessible NHS level as soon as possible.”

Speak with The mirror Commenting on her condition, Tracey said, “I’ve been sick since 1997 and most of the time I’ve been home.

“The last time I was able to leave the house was in 2016 – I am now able to not even go to a doctor or dentist appointment.

“It’s a completely neglected area of ​​medicine, like mine. There is no help.”

Tracey added, “It’s like being permanently banned but without the ability to feel comfortable, bake, garden, or exercise on a daily basis – and with no end date in sight.

Lyme disease paralyzed the mother's Tracey Weeks

“One thing I think is important is that my story isn’t ‘just’ mine. There are many people in a similar situation.”

Tracey says she was bitten by a tick when she was 10 while visiting Exmoor in the early 1980s.

She remembers having “a huge, red, angry bullseye-type rash” spreading under her armpit – but at the time she had no idea what it meant, and neither did doctors, she says.

Tracey said she felt slightly uncomfortable for a week, but it was over.

The following year, she suffered from nausea, dizziness, swollen glands, abdominal pain, fatigue, and sore legs for several months, but eventually recovered.

It was in 1997, at the age of 25, that Tracey said her condition had really gotten worse and that she was “permanently exhausted”.

“The daily sore throat and swollen glands were almost constant and I got dizziness or migraines frequently,” she said.

A cold over Christmas, she says, further worsened her health, and she had periods of barely moving, numbness, pins and needles and strange sensations in arms and legs, and muscle pain.

She was doing an administrative job at the time, but says it was getting harder and harder.

When she went to the doctor, she was told she had a “virus” later called “Post Virus Fatigue”.

“The first few years that I got sick were extremely scary,” said Tracey. “My body shut down on me and no one could tell me why.”

As time passed and she had more tests, Tracey was eventually told she had Lyme disease but the idea of ​​treatment had been “turned down”.

She said that she was increasingly unable to walk and had to be dropped off at the door for hospital appointments – and had to learn to live with it.

Tracey, who lives near Taunton, Somerset, says she has been bedridden for the past few decades and has felt a little better at times.

Tracey Weeks, pictured a year before she got really poor

“It’s enough to leave the house only when absolutely necessary, such as for an inevitable medical appointment that would need to be planned with military precision to make sure I can make it, and when my parents put me in a wheelchair pushing until I can go out on my own maybe once a week or so.

“At best, I could generally go out once a week as long as I was careful about getting some rest beforehand and then recovering afterwards.”

She said she started having a bit of control over her illness in the first half of 2016, but fell behind in August of that year and has been house-bound ever since.

“I really, really need dental work, but I have to wait until I’m fit to try to see a dentist. My last appointment was about six years ago.

“The same goes for routine medical exams like swab tests or mammograms – they just don’t happen. It’s just the bare minimum.”

Tracey, who currently lives with her 17-year-old daughter, described her illness as “in a bubble of alternate reality where everything happens around you but you don’t feel part of it”.

She said, “You have to somehow make peace with the world that goes on without you. But I can’t say that it isn’t painful to miss many things that I would have taken for granted as a healthy person – many milestones in my life Daughter when her mother should have been there, see family and friends and take part in the events of her life.

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“Whether it’s a wedding or a funeral or a christening or whatever, I’ve generally got stuck in bed and missed it.”

Tracey says her parents are her main caregivers, but her daughter is also very helpful at home.

She says her bedroom has a mini fridge, mini cooker, plates and cups so she can “live” in a room in her duplex – but one day she hopes to move into a bungalow.

Tracey said her story is an example of a much bigger problem.

“I’ve never talked about Lyme. I’ve always felt the stigma acutely, as there was – and still is to some extent – the belief that it is not ‘real’, that the person is ‘weak’, or it is is a simple case of hypochondria, “she said.

“But after losing almost two and a half decades to this disease, I feel like I have to speak up.

“There are children younger than my daughter who have this terrible disease and families who are being put through the same hell as us. This has to stop. We have to make a change somehow.

“We urgently need research funding so that there is a reliable test, rapid diagnosis and effective treatment.

“Covid has shown us that the resources are there to conduct research and development treatments if the will is used enough. Why can’t this be applied to Lyme disease?”

Tracey added, “I still hope that I can live rather than just exist before I die.”

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