Initial Symptoms and Diagnosis
Lowri Denman, a 42-year-old media professional from Cardiff, experienced a severe health ordeal after a trip to India in 2007. Her first indication of a problem was the discovery of a metre-long tapeworm after using the toilet.
"It looked absolutely disgusting, like Sellotape with like little ridges in it,"
Lowri described. This was the initial symptom of neurocysticercosis, an infection caused by the larvae of the pork tapeworm, which resulted in 38 parasites residing in her brain, leading to intense headaches, seizures, and psychosis.
She is among a very small number of individuals in the UK diagnosed with this brain infection annually.
Lowri's 2007 trip to India was a three-month journey during which she avoided meat to prevent food poisoning. However, her infectious diseases consultant, Dr Brendan Healy, believes she inadvertently consumed pork contaminated with microscopic tapeworm eggs.
In 2010, three years after the trip, Lowri discovered the tapeworm in a restaurant toilet and flushed it away. Despite visiting her GP, stool tests were normal, and she felt well, so life continued as usual.
Onset of Symptoms and Hospitalization
Within a year, Lowri began suffering from severe headaches, and in 2011, she experienced her first seizure.
"I was really starting to struggle getting some words out,"
she recalled.
"The next thing I came around and I was in an ambulance and I was like 'how has that happened? Why?'"
Following hospital admission, CAT and MRI scans revealed 38 parasites in her brain.
"The doctor sat me down and said, 'right, okay, we've looked at your scans and we've found 38 parasites on your brain',"
Lowri said.
"Me and my mum were just jaws on the floor like, 'what on earth, what is that?'"
Initially, the diagnosis was thought to be toxoplasmosis, an infection transmitted via contact with infected cat feces. However, after Lowri's mother inquired about a possible connection to the tapeworm found earlier, further investigations confirmed neurocysticercosis.
According to the World Health Organization, humans contract this infection by consuming raw or undercooked pork, contaminated water, or through poor hygiene. It is extremely rare in the UK and typically occurs in individuals from endemic regions.
Initial Treatment and Period of Recovery
Lowri described the uncertainty following her diagnosis:
"At that point there's so many questions because you just don't know what's ahead of you with your health,"
she said.
"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 was hospitalized for two weeks and treated with anti-parasitic drugs and steroids. For a period, the treatment appeared effective.
During this time, Lowri enjoyed several years of good health, including a trip to New Zealand with her sister, relocating to Bristol, taking circus classes, and running half marathons.
Relapse and Mental Health Challenges
Lowri later collapsed at work, and scans revealed significant swelling in her brain around the parasites. She experienced confusion, numbness, and tingling sensations.
Consequently, she ceased working and moved in with her father in Carmarthen. Steroid treatment altered her appearance, and as her social life diminished, her mental health deteriorated.
"This paranoia and psychosis started kicking in… there was severe anxiety, panic attacks,"
Lowri said, recalling her six-week stay in a neuropsychiatric hospital.
"I spiralled a lot,"she added.
"My family were losing their mind with how things escalated. Friends were coming and seeing me in such a terrible state."
One visitor was Nicola Brown, a friend of 20 years, who was shocked by Lowri's condition.
"I walked into the room and she was essentially behaving like a child,"
Nicola recalled.
"Crawling around on the floor, hiding behind a curtain, sitting on her dad's lap as if she was five."
After the visit, Lowri swore at Nicola and told her never to return. Later, Lowri sent 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'."
Nicola described the period as frightening and uncertain.
"I just remember thinking, 'Is this Lowri now? Will we ever see the Lowri we know again?'"
Recovery and Return to Normal Life
Recovery was gradual. After hospital discharge, Lowri still felt unwell and lived with her father. She completed an art foundation course in Carmarthen and by 2018 moved back to Cardiff to pursue an interior design degree. She returned to work in 2022.
Dr Healy described Lowri's case as exceptional.
"This is the only case I've seen like this with presentation over many, many years,"
he said.
"Her case has 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."
Current Health Status and Advocacy
After years of treatment, the parasites in Lowri's brain have calcified.
"I've not had any surgery to actually take them out of my brain,"
she explained.
"Apparently they just sort of die down and they calcify basically. So at this point they are now calcified."
Dr Healy confirmed that Lowri received treatment to eliminate the eggs and is now considered to have passed through the critical phase.
Lowri has not experienced a seizure since 2017 but will remain on epilepsy medication indefinitely.
She is determined to use her experience to raise awareness of neurocysticercosis.
"What I want to do now is progress in my life and spread awareness of this disease and do something positive with it,"
Lowri 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."
Despite the challenges, Lowri retains fond memories of her time in India.
"The culture, food, landscape and people I experienced in India will stay with me forever,"
she said.
