Driven insane by your own immune system: One woman's terrifying story reveals how rogue particles in your brain may trigger mental illness

By John Naish

PUBLISHED: 17:26 EST, 29 April 2013 | UPDATED: 19:09 EST, 29 April 2013

The first inkling of trouble was when Liz Oldershaw became uncharacteristically scatty. ‘I arrived at the gym one day with nothing in my kit bag,’ says the 24-year-old.

‘At work, assisting my Dad, who is a company accountant, I would be in the middle of a spreadsheet and suddenly forget what I was doing. One day, I didn’t even recognise the cleaner we’ve had for 15 years.’

Over the next few weeks, Liz experienced more of these incidents, then she suddenly descended into such a severe psychotic state she had to be put into an artificial coma to stop her tearing her own eyes out.

Frightening ordeal: Liz Oldershaw's mental illness left doctors baffled until experts at Oxford University were able to diagnose the cause

Her devastating mental disintegration left doctors baffled. Fortunately, experts at Oxford University were able to diagnose the cause from a simple blood test.

The bright and ambitious psychology graduate from South Brent, Devon, was not cracking up — her body’s immune system was attacking her brain.

Researchers believe that every year, hundreds of other victims of mental illnesses, such as post-natal psychosis, schizophrenia and encephalitis (inflammation of the brain) may have the same treatable physical cause for their bizarre and frightening delusions. It might also be linked to epilepsy.

Significantly, a blood test taken in GPs’ surgeries would be enough to diagnose it and treatment could be as straight-forward as steroids.

When Liz became ill, she was terrified. ‘I started to see faces in corners and feared I was schizophrenic,’ she says.

A few weeks after her symptoms began she collapsed during a seizure and was taken to Derriford Hospital in Plymouth.

‘They examined me and sent me home, saying they would monitor me with check-ups,’ she says.

But back home, she had another, more severe seizure. She was rushed back to hospital, where her condition rapidly worsened over the next two weeks. She suffered increasingly frequent seizures and horrifying hallucinations.

‘I was plagued with visions of the devil, of descending into hell and of being god-like,’ she says. She thrashed about wildly trying to tear out her tonsils and eyeballs. That’s when doctors put her into the protective coma. 

A battery of scans had revealed Liz’s brain was seriously inflamed, but tests of her blood and brain fluid could not explain why. Two-and-a-half weeks after her first seizure, the results of a key blood test came back from the specialists at Oxford University — her blood showed the presence of an antibody called NMDA.

Liz was suffering from anti-NMDA receptor encephalitis, a disease identified in 2007 and until now thought to be extremely rare.

A rogue antibody produced by her immune system was destroying her brain — in a similar way that rheumatoid arthritis, another auto-immune disease, attacks the joints.

Recovery: Liz is training to be a volunteer for the Encephalitis Society, to raise awareness of the condition

She was immediately given heavy doses of immune-system suppressing drugs, including powerful steroids. In a further attempt to clear the antibody, she was given donor plasma (the liquid part of blood) via dialysis. In all, she received 40 pints of plasma.

After 14 weeks, Liz was finally roused from her induced coma, looked at her father and said: ‘I love you.’ It was the first step on a long road to recovery that still continues two years on.

At first, Liz could not walk or write. Her memory had been wiped: she couldn’t remember the illness and had only patchy recollections of her four years at university.

But while her condition was once considered a rare medical quirk, investigators believe immune disorders may be causing far more mental illness than imagined.

When researchers led by Dr Belinda Lennox, an honorary consultant psychiatrist at Oxford University’s department of psychiatry, began blood-testing patients with psychotic symptoms in her clinic two years ago, they found that 6 per cent had the NMDA antibody. ‘We are broadening this research and examining another 240 patients across the country,’ she says. ‘We then want to conduct a large controlled trial, to establish that treating these people with steroids is better than using anti-psychotic drugs.’

The steroid drug treatment shows early promise.

It’s not known what causes the body to create the NMDA antibody, but it should automatically be considered dangerous, says Dr Lennox. ‘You don’t see it in healthy people.’

At the moment it takes at least a fortnight for the blood test to produce results. ‘This certainly should be speeded up to improve diagnosis. The earlier the diagnosis the better because the antibodies can wreak irreversible physical damage in the brain.

‘If patients with these antibodies have had the disorder for a long time, it is harder to treat.’

Dr Lennox and fellow experts suspect many psychiatric illnesses may be caused by this antibody.

Last year, experts on infectious disease at St Michael’s Medical Centre in New Jersey reported on a 25-year-old woman suffering from postnatal psychosis — a severe form of postnatal depression — who had the NMDA antibody.

When they treated her with the immune-suppressing drug rituximab, her symptoms resolved. A year later she was still healthy.

The idea that psychological problems might be linked to the immune system might be novel, but it is well known that certain infections can also have a psychological effect on the brain.

As Dr Tim Nicholson, a clinical lecturer at the Institute of Psychiatry, King’s College London, points out: ‘Syphilis is the classic example. It is strongly linked to brain disintegration and dementia.’

Only last month, researchers suggested the herpes simplex type 1 virus that can cause cold sores, along with other viral or bacterial infections, might also cause memory decline.

It may be the infection itself that causes the problem — or, the culprit may be the body’s immune response to the infection.

However, the focus is on mental illnesses caused by auto-immune problems rather than infection.

The strongest evidence relates to the NMDA antibody’s ability to attack the brain and cause encephalitis, but scientists are finding reasons to believe that this antibody may also be the culprit behind significant numbers of other conditions, says Dr Nicholson.

‘The antibody is also being found in patients with epilepsy and schizophrenia.’

Earlier this year, a German study of 121 patients with schizophrenia, published in the respected journal JAMA Psychiatry, found 10 per cent had raised levels of the NMDA antibody.

But the auto-immune link may not stop with NMDA. ‘There may well be more antibodies out there that can attack the brain in similar ways, causing mental illnesses. We have only just started to look for them,’ says Dr Nicholson.

‘The interesting question is whether only a small percentage of people with mental illness are affected this way or whether it is a significant proportion. ’

For now, campaigners are anxious to highlight the risk NMDA can have in causing encephalitis.
As Ava Easton, chief executive of the Encephalitis Society, says: ‘More research and awareness is important because swift diagnosis and treatment can prevent long-term disability and, in some cases, death.’

Meanwhile, Liz Oldershaw is still working towards a full recovery. Last week she took her final dose of steroids, though she’ll need small doses of an immuno- suppressant drug for years to ensure the antibody doesn’t return.

She’s exploring a return to academic psychology and is training to be a volunteer for the Encephalitis Society, to raise awareness of the condition and its auto-immune link.

Liz says she’s been blessed by the support of her family, especially her sister Sarah, who is her carer, and her boyfriend Tim.

For information on encephalitis and support, contact the Encephalitis Society, encephalitis.info, tel: 01653 699599.