A woman who contracted Lyme Disease from a tick bite has shared videos of her extreme fits after the NHS told her that she was beyond help.
Stephanie Todd has had to give up her university course, can no longer look after herself and has terrifying tremors and seizures four years after she went to the doctors with a rash and flu.
Now, she said the NHS can no longer help her, so in desperation has shared a video of her seizures to raise awareness about the condition and her fundraiser .
The 22-year-old from Thornbury in South Gloucestershire said her dream is to get treatment at a specialist Lyme Disease clinic in Washington DC in the United States – and has set up a fundraising page to get support.
She said her life took an unexpected downward turn at the age of 18, before which she was just a normal teenager.
“I was a very average teenager who loved going out, walking, art and philosophy,” she said.
After her A-levels, she was accepted onto a textile design degree at university, but before then, something strange happened to her.
“I developed flu, and a rash on my chest that was dismissed as ringworm by my doctor,” she said.
“I ignored the symptoms and it eventually went away. Little did I know this was the classic start of Lyme Disease. If I had the proper treatment at this stage I would not be as sick as I am today,” she added.
Steph went to university, but began gradually to feel more and more unwell. She experienced exhaustion, migraines, shakiness and nausea, but carried on as best she could.
Then her thyroid began to be affected, and she was diagnosed with hashimotos disease and hypothyroidism.
“In my second year, my body simply crashed – my immune system broke down and a test revealed chronic immunosuppression,” she said. “I developed chronic pain, tremors, muscle spasms, double vision and heart palpitations.
“I was housebound and then bedbound. Doctors labelled this as ME and fibromyalgia. The simplest tasks became insurmountable – showering, cooking, reading. Somehow, I still completed my second-year studies,” she added.
Then, after five diagnoses that all proved incorrect, the seizures began.
The first seizure happened when Steph made every effort to get to see The Cure at Hyde Park – but she never got to see the band because she collapsed.
“I had full body convulsions that lasted an hour,” she said.
“The episodes continued. I had another in Paddington Station a month later which left me paralysed from the waist down for a week.
“None of my doctors could work out what was causing it. Lyme seizures can look a lot like regular seizures, or can be localised to my stomach, chest, arms or legs.
“I went to my first lecture of my final year in a wheelchair and managed half a day,” she added.
Steph’s dream of finishing the third year of her degree was over – she had to move back home to Thornbury to be looked after by her family.
At this point, her seizure episodes happened every day – often many times a day.
“My condition was deteriorating rapidly, and still no doctor could pinpoint the issue. I was determined to find out what was wrong with me,” she said.
Eventually, doctors made the diagnosis. That rash and flu she had four years ago at the age of 18 was actually caused by a tick, and she had contracted Lyme Disease.
Because it went untreated, it was now deeply embedded in her central nervous system – she had late stage neurological Lyme Disease – neuroborreliosis.
There was treatment to take the edge off her symptoms. “After some conventional treatment for Lyme, my seizures slowly began to stop,” said Steph.
“My pain lessened and I felt generally less dizzy and unsteady. With this, I regained some independence,” she added.
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