The first time Lowri Denman knew something was wrong was when she made the horrifying discovery of a metre-long tapeworm after going to the toilet.
“It looked absolutely disgusting, like Sellotape with like little ridges in it,” said the 42-year-old from Carmarthen.
It was the first symptom of neurocysticercosis, which left Lowri with 38 parasites in her brain causing extreme headaches, seizures and psychosis.
She is one of only a handful of people in the UK who are diagnosed with the brain infection each year, which is caused by the larvae of the pork tapeworm.
After spending years regaining her health, Lowri wants to turn her ordeal into something positive by raising awareness of the condition.
Lowri, who works in media, went on a three-month trip around India in 2007. This is where her doctor – Dr Brendan Healy, a consultant in infectious diseases and microbiology – believes she picked up the infection.
Lowri made the decision to avoid meat for the trip, hoping it would help her to avoid food poisoning, but Dr Healy believes she inadvertently ate pork that contained microscopic tapeworm eggs.
It was not until three years later, in 2010, that Lowri discovered the tapeworm when in a restaurant toilet and flushed it down the loo.
She went to the GP but stool tests came back satisfactory and she was feeling well so life continued as usual.
Within a year she began getting terrible headaches.
Then, in 2011, she suffered her first seizure.
“I was really starting to struggle getting some words out,” she said.
“The next thing I came around and I was in an ambulance and I was like ‘how has that happened? Why?’”
A hospital stay, CAT scan and MRI scan followed and Lowri was told to come in for the results.
“The doctor sat me down and said, ‘right, okay, we’ve looked at your scans and we’ve found 38 parasites on your brain’,” said Lowri.
“Me and my mum were just jaws on the floor like, ‘what on earth, what is that?’”
Initially they thought it was toxoplasmosis, an infection spread through contact with infected cat faeces.
But then Lowri’s mother asked if her seizure could be linked to the tapeworm she had discovered a year earlier.
After further investigations she was finally diagnosed with neurocysticercosis.
According to the World Health Organization (WHO), humans are infected by consuming food such as raw or undercooked pork, water contaminated with tapeworm eggs, or through poor hygiene practices.
It is exceptionally rare in the UK and cases are almost exclusively seen in individuals who have migrated from endemic regions.
“At that point there’s so many questions because you just don’t know what’s ahead of you with your health,” said Lowri.
“The panic of what’s next, what am I going to have to deal with, what medication am I going to go on, can I go back to work?”
She stayed in hospital for two weeks, and was put on anti-parasitic drugs and steroids.
For a while, the treatment seemed to have worked.
She had several years of good health where she was able to go on a trip with her sister to New Zealand, move to Bristol, take circus classes and run half marathons.
But then she collapsed in work.
Scans found huge swellings on Lowri’s brain around the parasites.
Following the collapse she became confused and started experiencing numbness and tingling in her body.
From there, Lowri ended up giving up work and moving in with her dad in Carmarthen.
She was put on steroids that altered her appearance and, as her life became smaller, she began to feel low until her mental health collapsed.
“This paranoia and psychosis started kicking in… there was severe anxiety, panic attacks,” Lowri, who spent six weeks in a neuropsychiatric hospital, said.
“I spiralled a lot,” she recalled.
“My family were losing their mind with how things escalated. Friends were coming and seeing me in such a terrible state.”
One of those people who visited was Nicola Brown – a friend of 20 years.
Having not seen Lowri for a month, Nicola was left stunned by her deterioration.
“I walked into the room and she was essentially behaving like a child,” recalled Nicola.
“Crawling around on the floor, hiding behind a curtain, sitting on her dad’s lap as if she was five.”
She said when the visit ended Lowri swore at her and told her to never come back.
Lowri later sent her a text message.
“It essentially said, ‘Thanks so much for coming to visit. You’re going to see me on the news tonight. The police are after me’.”
She said it had been a scary and uncertain time.
“I just remember thinking, ‘Is this Lowri now? Will we ever see the Lowri we know again?’”
Regaining full health has been a long road since then.
After coming out of hospital, Lowri was still “in a bad way” and moved back in with her dad.
“I didn’t feel myself at all, I didn’t look myself in the slightest, I didn’t want to go out,” she said.
From there Lowri completed an art foundation course in Carmarthen, and by 2018 felt strong enough to move back to Cardiff and did an interior design degree.
She eventually returned to work in 2022.
Lowri’s consultant, Dr Healy, said Lowri was a once-in-a career patient.
“This is the only case I’ve seen like this with presentation over many, many years,” he said.
He said her case had been discussed by many leading experts in the UK and the US.
“I wouldn’t expect to see another case like this during my career – and there’ll be many infectious disease consultants across the country who will never see a case like this, that’s how rare it is,” he said.
After years of health struggles, the parasites have now calcified in Lowri’s brain.
“I’ve not had any surgery to actually take them out of my brain,” she said. “Apparently they just sort of die down and they calcify basically. So at this point they are now calcified.”
Dr Healy said Lowri had received treatment to “kill all the eggs and happily now seems to be out the other end”.
She has not had a seizure since 2017 but will remain on epilepsy medication for the rest of her life.
Lowri, who now lives in Cardiff, said she was determined something positive comes from her ordeal.
“What I want to do now is progress in my life and spread awareness of this disease and do something positive with it,” she said.
“You don’t know what’s around the corner… I’m happy to be alive and healthy and fit again and I never take that for granted.”
Sourse: BBC
