An autoimmune disease stole this man’s memory. Here’s how he’s learning to cope

“My year of disintegration” is how a desperate Christy Morrill described the nightmarish months during which her immune system hijacked her brain.

So-called autoimmune encephalitis attacks the organ that makes us “us,” and it can appear out of the blue.

Morrill went for a bike ride with friends along the California coast, stopping for lunch, and they didn’t notice anything unusual. Neither did Morrill until his wife asked him how it happened – and he forgot. Morrill was going to get worse before he got better. “Unbalanced” and “struggling to see the light,” he wrote as the illusions took hold and the holes in his memory widened.

Of all the ways our immune system can run amok and damage the body instead of protecting it, autoimmune encephalitis is one of the most unfathomable. Apparently healthy people suddenly fall into confusion, memory loss, seizures, and even psychosis.

But doctors are getting better at identifying it, thanks to the discovery of a growing list of culprit unwanted antibodies that, if found in blood and spinal fluid, make diagnosis easier. Every year, new causative antibodies are discovered, said Dr. Sam Horng, a neurologist at Mount Sinai Health System in New York, who has treated patients with multiple forms of the mysterious disease.

And while treatment today involves general ways to fight inflammation, two major clinical trials are underway aimed at more targeted therapy.

It’s still delicate. Symptoms may be confused with psychiatric or other neurological disorders, delaying appropriate treatment.

“When someone has new changes in their mental state, they get worse and if there’s some sort of bizarre quality, that’s something that raises our suspicions,” Horng said. “It’s important not to miss out on a treatable disease.”

With early diagnosis and care, some patients make a full recovery. Others, like Morrill, return to normal daily functioning, but struggle with lasting damage – in his case, lost decades of “autobiographical” memories. This 72-year-old literature student can still recount facts and figures learned long ago, and he creates new memories every day. But even family photos can’t help him remember crucial moments in his own life.

“I remember that Ulysses was published in Paris in 1922 by Sylvia Beach. Why do I remember this, which is no longer of any use to me, and yet I no longer remember my son’s wedding?” Morrill asks.

Encephalitis means the brain is inflamed and symptoms can range from mild to life-threatening. Infections are a common cause and usually require treatment of the underlying virus or bacteria. But when that is ruled out, an autoimmune cause should be considered, Horng said, especially when symptoms appear suddenly.

The umbrella term autoimmune encephalitis covers a group of diseases with strange names based on the antibody that fuels it, such as anti-NMDA receptor encephalitis.

Although these are not new diseases, it received a name in 2007 when Dr. Josep Dalmau, then at the University of Pennsylvania, discovered the first culprit antibody, sparking a search to learn more.

This anti-NMDA receptor encephalitis tends to strike younger women and, one of the strangest factors, is sometimes triggered by an ovarian “dermoid” cyst.

How? This type of cyst has similarities to certain brain tissues, Horng explained. The immune system can develop antibodies that recognize certain proteins from growth. If these antibodies enter the brain, they can mistakenly target NMDA receptors on healthy brain cells, causing personality and behavioral changes that can include hallucinations.

Different antibodies create different problems depending on whether they primarily hit the memory and mood areas of the brain, or the sensory and movement regions.

Overall, “some facets of personality appear to be altered,” Horng said.

Therapies include filtering harmful antibodies from patients’ blood, infusing healthy antibodies, and high-dose steroids to calm inflammation.

These cyst-related antibodies sneakily attacked Kiara Alexander in Charlotte, North Carolina, who had never heard of this brain disease. She’d brushed aside a few oddities—a bit of forgetfulness, a pause of a few minutes—until she found herself in an ambulance with a seizure.

Perhaps dehydration, the first hospital concluded. At a second hospital, after a second attack, a doctor recognized the possible signs and ordered a lumbar puncture which detected the responsible antibodies.

As Alexander’s treatment began, other symptoms intensified. She has few clear memories of her month-long hospital stay: “They said I would wake up screaming. What I remembered was like a nightmare, like the devil was trying to get me.”

Later, Alexander would ask her about her 9-year-old daughter and ask when she could come home – only to forget the answer and ask again.

Alexander feels lucky to have been diagnosed quickly and able to have the ovarian cyst removed. But it took him more than a year to fully recover and return to work full time.

In San Carlos, California, in early 2020, it took months to determine the cause of Morrill’s sudden memory problem. He remembered facts and spoke eloquently, but lost memory of personal events, a strange combination that prompted Dr. Michael Cohen, a neurologist at Sutter Health, to send him for more specialized tests.

“It’s very unusual, I mean extremely unusual, to just complain about an autobiographical memory problem,” Cohen said. “We have to think about unusual disorders.”

Meanwhile, Morrill’s wife, Karen, thought she detected subtle seizures — and one ultimately occurred in front of another doctor, helping trigger a spinal tap and a diagnosis of LGI1 antibody encephalitis.

It is a type more common in men over 50 years old. These unwanted antibodies disrupt the way neurons signal to each other, and MRI scans showed they had targeted a key memory center.

Morrill, who had spent his retirement guiding kayak tours, could no longer safely get in the water. He had stopped reading, and as his treatments changed, he became agitated by frightening delusions.

“I completely lost my mental capacity and collapsed,” Morrill describes.

He used haiku to make sense of the incomprehensible, and months into treatment, he finally wondered if the “drugs going through me” were really “putting out the fire.” Rays of hope?

The Autoimmune Encephalitis Alliance, a nonprofit organization, lists about two dozen antibodies — and counting — known so far to play a role in these brain diseases.

Clinical trials, offered at major medical centers across the country, are testing two drugs now used for other autoimmune diseases to see if reducing antibody production can relieve encephalitis.

Greater awareness of these rare diseases is essential, said Alexander, of North Carolina, who has researched other patients. “It’s a terrible feeling, feeling like you’re alone.”

As for Morrill, five years later, he still mourns decades of lost memories: the family reunions, a year spent studying in Scotland, the trip with his wife.

But he’s making new memories with his grandchildren, is back outside and leading an AE Alliance support group, using his haiku to illustrate the journey from his “unraveling” to “the present is what I have, the sunrises and sunsets” to finally, “I can maintain hope.”

“I’m coming back to a real time of fun and joy,” Morrill said. “I wasn’t aiming for that. I just wanted to be alive.”

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.