UK woman recollects neurocysticercosis ordeal after India trip; Leander had it too

A British woman has shared her ordeal with BBC of dealing with neurocysticercosis (NCC), a parasitic tapeworm cyst that she developed after an India visit. Incidentally, this condition is a common cause of epilepsy and brain abscesses in India, and former tennis star Leander Paes was famously treated for it in 2003.

Lowri Denman, the British woman, now 42, travelled through India for three months in 2007. Everything seemed fine; she made fond memories from her travels and went back to her country, and for three years, nothing was wrong.

However, in 2010, while using the toilet at a restaurant, she passed a meter-long tapeworm with her stool. She went for a stool test but the reports were normal and she forgot about it as a one-off incident.

Another year went by, when she suffered her first seizure. When she underwent more detailed medical tests, she was diagnosed with NCC. Doctors reportedly found as many as 38 tapeworm larvae in her brain.

India’s NCC burden

Doctors reportedly suspected she contracted the infection during her India visit, as the subcontinent is infamous for its NCC burden, accounting for an estimated 34 to 50 per cent of its active epilepsy cases. The spread gets particularly severe around monsoon.

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Lowri reportedly avoided meat during her India trip to avoid food poisoning. But she says she may have unknowingly eaten pork that contained tapeworm eggs, which are microscopic, to contract NCC.

However, NCC is not necessarily caused by pork alone. Sometimes, eating contaminated, unwashed vegetables such as salads can also cause the infection, which happened in Paes’s case. The tennis star, though a non-vegetarian, did not eat red meat or pork.

Instead, medical evaluations and his own statements indicated that he likely contracted the parasite by consuming contaminated salads or sushi, which he used to eat in abundance prior to his diagnosis.

Years of suffering

Anyhow, returning to Lowri’s story, soon, she began suffering from severe headaches, seizures, and even psychosis. She was put on anti-parasitic drugs and steroids, but the large cysts that formed around the parasites in her brain caused confusion, numbness, and tingling in her body.

Her health got so bad that she had to quit her job and move in with her father. Over time, her paranoia, psychosis, anxiety, and panic attacks only kept getting worse, sending her to a neuropsychiatric hospital for six months.

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After years of treatment, the cysts in Lowri’s brain calcified, and she returned to work in 2022 with no symptoms of neurological issues. However, she will have to take epilepsy medicines throughout her life.

So, how can you avoid getting into Lowri’s condition? Here is all about NCC.

What is neurocysticercosis?

NCC is a parasitic infection of the central nervous system caused by the larvae of the pork tapeworm (Taenia solium).

How do people contract NCC?

People contract NCC by accidentally swallowing microscopic tapeworm eggs, usually via contaminated food, water, or unwashed hands. These eggs hatch in the intestine, penetrate the intestinal wall, and hitch a ride to the brain through the body’s bloodstream. Once they are lodged in the brain, they form fluid-filled cysts that are sometimes confused with tumours.

Symptoms

The cysts can cause significant inflammation and pressure as they swell and die. Symptoms vary based on the number, size, and location of the cysts, but often include:

• Seizures (the most common clinical manifestation and a leading cause of acquired epilepsy)

• Chronic headaches

• Dizziness

• Confusion

• Cognitive decline

• Memory loss

• In severe cases, increased pressure inside the skull (intracranial hypertension).

Diagnosis and treatment

Doctors rely heavily on CT scans or MRI scans to identify the cysts, alongside blood tests and clinical exams.

Treatment is highly specialized and often requires a combination of anti-parasitic medicines, anti-seizure drugs, and corticosteroids to reduce inflammation.

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Early diagnosis often plays a key role in cure. In Paes’s case, the condition was detected before it could cause major damage like in Lowri’s case. While initially it was suspected he had a brain tumour, he was quickly detected with NCC and treated non-surgically using targeted medication at the MD Anderson Cancer Center in Orlando, Florida.

He was given anti-parasitic medicines to actively kill the tapeworm larvae and shrink the brain abscess. Doctors administered steroids to reduce the dangerous brain swelling (oedema) caused by the immune response as the parasite died. Finally, he received anti-epileptic drugs to prevent seizures.

Paes responded exceptionally well to the treatment. After a brief period of hospital isolation and strict rest, he made a full recovery and returned to professional tennis within months, winning multiple Grand Slams afterwards.

Unfortunately for Lowri, despite her early detection, she had to suffer for years.