14 People In Massachusetts Suddenly Lost Their Memories. Could Heroin Be The Culprit?


Posted on April 15, 2017, 13:16 GMT

A week before his 23rd birthday, Max Meehan and his
boyfriend went to a party at one of their favorite gay dive
bars in the Back Bay of Boston. Max had a lot to drink. They
danced until they were sweaty and smoked too many cigarettes.
At some point, Max left the bar, met his dealer around the
corner, and bought some heroin.

Hours later, after getting home, Max went to the bathroom to
shoot up, as he had done countless times before. Drunk and
high, he passed out on the couch.

The next morning, when he tried to get up, he collapsed onto
the floor. His leg wasn’t working, somehow. I must have
slept weirdly on my leg
, he thought. Scared and in pain,
he started to cry.

His boyfriend ran in, helped him back to the couch, and asked
him what was wrong. Max stood up, only to sink to the floor
again. His leg felt paralyzed. Again the thought struck him,
as if brand new: I must have slept weirdly on my leg.
He started crying.

Some minutes later, the seemingly new thought flew into his
mind. I must have slept weirdly on my leg. He started
sobbing frantically.

Many hours and two hospitals later, a slew of tests had
failed to find a cause of Max’s leg pain and extreme
confusion. His family was terrified.

Kieran Kesner for BuzzFeed News

“He was just kind of laying in bed, wondering what was going
on,” said Max’s mom, Laura Frongillo, who was at his side at
Lahey Hospital and Medical Center, not far from her home. “It
was 21 hours really of not getting any information. It was
just really shocking and scary.”

She and Max’s sister would try to cheer him up by showing him
one of his favorite YouTube memes, “Sweet Brown.” Even though
he had no idea of his surroundings, he was still his goofy
self. “We just kept playing the video for Max, and he kept
thinking it was the funniest video ever,” his mom recalled.
“He would laugh again and again like it was brand new.”

The next day, Max saw Yuval Zabar, one of the hospital’s
neurologists. Zabar gave Max a few standard memory tests,
like asking him to draw three words and three shapes on a
piece of paper. Minutes later, Max could only remember one of
the words and one of the shapes. In another test, Zabar hid
objects in various parts of the exam room and then asked Max
to point where they were. “Sometimes he couldn’t really even
tell what I was talking about,” Zabar recalled.

“It was clear to me that he was not just confused,” Zabar
said. “This was a more specific problem — the kid was
amnestic.”

Zabar ordered an MRI scan, which highlights brain areas that
have been damaged by a lack of oxygen, or “ischemia.” Inside
Max’s skull, he could make out the gray, jello-like
silhouettes of various brain regions. But clustered near the
center were two glowing orbs of white.

Kieran Kesner for BuzzFeed News

Zabar was shocked. The spots were perfectly localized, on
each side of the brain, to the hippocampus, the
seahorse-shaped region that encodes new memories. In his 20
years of treating patients with neurological problems, Zabar
said, he had never seen anything like it.

That was 2012. Since then, Max’s case has turned out to be
the first of an alarming cluster. In Massachusetts alone,
doctors have identified 14 people with damaged hippocampi who
suddenly lost the ability to form new memories — and 12 of
them had a history of using heroin or other opioids.

Next week, Massachusetts public health officials will
officially recognize this as a “reportable disease.” That
means that for the next year, doctors will alert the state of
any new cases, just as they do for infectious diseases like
Ebola or Zika, in the hopes of collecting enough data to
figure out how many addicts are suddenly losing their
memories, and why.

Is it tainted drugs? Or an unknown side effect of the cheap
and powerful heroin alternative, fentanyl? A piece of Max’s
genetic makeup that made him susceptible to brain damage? Or
perhaps something much simpler: a tragic, if unmysterious
consequence of exposing the brain to opioids, again and
again.

Kieran Kesner for BuzzFeed News

Max grew up in the Boston suburb of Winchester, middle
class but feeling “poor” compared to his millionaire
neighbors.

His dad was an arborist and aging punk rocker who long
struggled with alcoholism. Max’s mom, a copywriter, left him
when their son was 12. Although they were open-minded and
unconventional, Winchester was conservative, and Max didn’t
feel comfortable coming out. When he got to the idyllic and
isolated Green Mountain College in Vermont, it felt like a
ticket to freedom.

Percocets were everywhere on campus, as common as weed or
booze. He started with pills, then switched to needles
because that’s what his boyfriend did. Coming from “snobby”
Winchester, Max never thought he’d be an intravenous drug
user. “I thought it was disgusting,” he said, waving his hand
in mock distaste and laughing. After that, he said, “it
became a normal thing.”

His boyfriend broke up with him and Max fell into a
depression, and moved from injecting Percocet to heroin. His
drug use soon consumed him. He moved back to Massachusetts,
transferred to UMass Boston, and got a job waiting tables.

After two years of almost daily drug use, Max had the amnesia
spell, and his life began to spiral out of control. Unable to
remember what year it was or how to get around Boston, he
dropped out of school. He had to quit the restaurant job
after two dizzying shifts losing people’s orders and
forgetting where his tables were.

“I remember feeling, just like, intense dread, because I
didn’t know what was happening,” he said. “Because I thought
I was going to be like that for the rest of my life. It made
me act like a crazy person.”

He felt trapped in a thick fog. Some days, he remembers, he
would try to drink a handle of vodka to escape, but his brain
refused to get drunk the way it used to. Some days he found
himself home alone in his apartment, screaming.

His roommate eventually asked him to move out, saying she
couldn’t take care of him any longer. His boyfriend, who
hadn’t known about Max’s heroin habit before the amnesia hit,
broke up with him. He moved back in with his mom.

Kieran Kesner for BuzzFeed News

Max and his mom, Laura Frongillo, at their home in
Winchester.

But Max kept showing up to his doctor’s appointments. About a
month after he was first hospitalized, the doctors at Lahey
gave him more cognitive tests to see if anything aside from
his memory — like his motor skills, attention span, or
vocabulary — had been affected. The tests showed that Max’s
memory was still shot, but everything else seemed to be
intact.

“I was terrified to think of going to work and having him
being home alone,” Frongillo said. She worried he would
forget to turn off the oven, or overdose.

A couple weeks later, after getting heartfelt letters from
his mom, sister, grandmother, and two friends, Max agreed to
go to rehab for the first time. The amnesia “was absolutely a
wake-up call,” his mom said. A rehab in Connecticut turned
him away because it didn’t have the staff to deal with his
memory problem, but his mom eventually found a facility in
Florida that would take him.

Max hated rehab. The staff treated him like a child, he
recalled, and without the drugs to self-medicate his
depression, he felt “empty.” Some days, he’d sneak into
offices to call his friend, Ace.

She worried he would forget to turn off the oven, or
overdose.

They had met at a bar. Ace, a construction worker 10 years
his senior, bought Max a drink, and soon they were in the
bathroom doing lines of cocaine. “I fell in love with him,
like, immediately,” Max said. The next weekend, they took a
trip to Cape Cod. From then on, “we never left each other’s
sides.”

When Max got out of rehab, he still struggled to remember
things, and dove back into heroin. Ace was undeterred. “So
many people had just given up on me at this point, because
they were sick of me not taking care of myself,” Max
recalled. “He could handle me.”

A year later, Max’s cousin and one of his closest friends,
Louie, a 25-year-old star athlete from Cape Cod, died of a
heroin overdose. Max had “Louie” tattooed in typewriter font
on his wrist, with a red heart in place of the “o,” so that
he would have to look at his name every time he shot up. He
hoped it would help him stop. Instead, he sank into a deeper
depression and began using more often. Ace saved Max’s life
several times by giving him naloxone, an opioid overdose
antidote. Sometimes, they got high together.

Gradually over the next two years, Max’s memory improved. He
got a job at a bakery. Ace bought him a truck, made sure he
got his scruffy blonde hair cut, and kept his doctor’s
appointments.

At a visit 22 months after that one scary night, Max did much
better on his memory tests, and his brain scan no longer
showed any sign of the glowing white orbs. His doctors
thought about publishing Max’s case, but never got around to
it.

“I thought it was a one-off thing,” said Jed Barash, another
neurologist at Lahey who consulted with Zabar about the case.
(Barash has since left Lahey and is now the medical director
of a nearby hospital, Soldiers’ Home.) “In medicine, there’s
a lot of things that you come across that you see once — it
can be a fluky thing, and you don’t see it again.”

Kieran Kesner for BuzzFeed News

Yuval Zabar (left) and Jed Barash looking at Max’s brain
scan in Zabar’s office.

But they did see it again. In early 2015, a
41-year-old man and his wife came to Barash’s office. The
man, who had a history of heroin use but claimed to have been
clean for years, was having trouble remembering. His problems
had started one weekend when his wife and kids were out of
town. When they called him to check in, he seemed confused,
repeatedly asking why the kids weren’t in school.

He went to the ER, getting basic memory tests, an EEG, and an
MRI, but the doctors found no explanation. They sent him
home. Eight weeks later, the family came to Lahey for a
second opinion, saying he was still struggling even to
remember the rules of board games.

Kieran Kesner for Buzzfeed News.

When Barash looked at the man’s brain scans, he was shocked:
The hippocampi were two brightly lit orbs in a sea of gray —
just like Max’s.

“I was like whoa, this is like, really weird,” Barash said.
“At that point, I suspected something unusual was going on.
You can see one thing. Once you see two you start getting
suspicious.”

Barash, whose laid-back demeanor underplays his desire to be
taken seriously in the world of research, ran the images by a
neuroradiologist at Lahey, Juan Small, to “make sure I wasn’t
seeing things.”

Then Barash, Zabar, and Small started asking their colleagues
at the hospital to flag potential cases, and found two more.
One was a 33-year old woman who had come to the hospital the
year before with severe memory deficits after being revived
from a heroin overdose. The other was a 52-year-old woman who
had been found unconscious and had lingering breathing
problems. Both women tested positive for opioids and other
drugs. Both had the same glowing orbs in the center of their
brain scans.

When chatting among themselves, the three doctors dubbed the
new syndrome “CHIAS,” for complete hippocampal ischemic
amnestic syndrome.

“It was kind of a joke,” Barash said, describing how silly it
felt to name a syndrome that they still weren’t completely
sure was real. He was worried the name sounded too much like
“Chia pet.” Zabar said it sounded too much like “cheese.”

The hippocampi were two brightly lit orbs in a sea of gray —
just like Max’s.

In November 2015, Barash notified the Massachusetts
Department of Public Health about Lahey’s four amnesia
patients. The state, concerned with its booming opioid
epidemic, quickly took action.

“West Nile virus may not have been recognized for another
year if a doctor in Queens hadn’t called a health
department,” said Alfred DeMaria, medical director of the
Massachusetts Department of Public Health’s infectious
disease division. “We’ve had essentially a doubling of opioid
overdoses in the past several years — fatalities. That was on
our mind.”

Three months later, DeMaria sent out a letter to the state’s
board of registration of medicine, blasting the inboxes of
neurologists, radiologists, and emergency room physicians in
Massachusetts to ask if anyone had seen more of these bizarre
cases. Barash and his colleagues started getting responses
within hours.

“It was people who had seen one or two of these cases and
didn’t know what to make of them,” DeMaria said. “It wasn’t
until they got the note that a light bulb went off that maybe
there was something more.”

When Mara Kunst, a radiologist from Holy Family Hospital, saw
the alert, “I breathed a sigh of relief,” she said. She had
seen two cases in the fall of 2015.

Neurologist Chun Lim was doing his weekly shift at a
Boston-based rehab facility when he came across a middle-aged
man who tested positive for opioids and didn’t have any idea
why he was in the hospital. “He could not retain any new
information,” Lim said. Other doctors had assumed his memory
loss was caused by the shallow breathing that comes with
overdoses, but Lim was highly doubtful. Although studies had
found that respiratory arrest is more harmful to the
hippocampus than other brain areas, Lim’s own research had shown that the damage would
very rarely occur on both sides, and would most often affect
other areas of the brain as well.

“When they came out with this call, my patient fit it
completely,” Lim said. He later realized that another patient
he’d seen who’d overdosed on opioids and anti-seizure
medications also fit the pattern. “Never before had I seen
the patients that were described here.”

Kieran Kesner for Buzzfeed News

Max takes a walk through a nearby reservation where he
used to hang out with Ace.

As news of this mysterious new syndrome spread in the
scientific community, Max hit a new low, reeling from the
deaths of two family members in as many years.

First there was his cousin Louie. Next was his father, who
died of his alcoholism at the age of 54.

By October of 2016, Max was falling apart. “I just lost any
motivation to change and better myself,” he said. “I really
allowed it to have its grip on me.”

One night, while his mom was away on a business trip, Max’s
stepdad and stepsister found him unconscious in his room on
the third floor of their Winchester home. An ambulance took
him to the ER, but Max insisted on going home. At 6:30 the
next morning, he got up and went to work. He called his mom
and apologized, telling her not to fly home early from her
trip. “He talked me into believing he was okay,” his mom
said.

That night, his grandmother, who had come stay with them to
keep an eye on Max, heard a bang from upstairs. It was Max’s
head slamming against his headboard — he had overdosed again.

Max’s family staged an intervention, begging him to get help.
When he refused, his grandmother and his aunt, Louie’s mom,
went to the courthouse to get him forcibly committed to a
hospital. The police arrested him at the flower shop where he
worked.

“I was so sad, but I was also so relieved about it at the
same time,” his mom said. “Obviously if he was overdosing two
nights in a row, he was a danger to himself. It was awful.”

Max was placed in involuntary custody at Bridgewater State
Hospital, which the Boston Globe has dubbed “a
medium-security prison masquerading as a mental health
hospital.” He was there for just under a month, including for
his 27th birthday.

While there, Max got so bored that he finished his first book
since the amnesia event: The World According to Garp,
which follows a man struggling to become a writer. He stole
it from the library, and read its 600-odd pages cover to
cover.

Kieran Kesner for Buzzfeed News

Max in his old room on the third floor of his family’s
home. Fearing an overdose, his mom now makes him sleep on
the second floor.

In January of this year, Barash and DeMaria published a paper for a CDC report, assembling
14 cases that clearly fit the mold first set by Max. They had
all showed up in emergency rooms in eastern Massachusetts
between 2012 and 2016, and 12 had a history of opioid use.

Whenever Barash talks about what could be going on here, he
invariably mentions the “frozen addicts” of 1982. That’s when
California doctors reported a cluster of seven heroin
addicts who suddenly developed symptoms eerily similar to
Parkinson’s disease. Their bodies were stiff and rigid, their
movements spastic and uncontrolled. After some detective
work, doctors discovered that the addicts had all been using
a synthetic opioid that had been contaminated with a toxin
that mimicked Parkinson’s.

When Barash and Zabar had first searched the literature for
any examples of hippocampal damage similar to Max’s, they
found only a handful of scattered case reports: a couple of cases involving cocaine use,
one case from Korea involving carbon monoxide poisoning, and one person who
had brain damage brought on by the flu.

The cluster of new cases in eastern Massachusetts, which
began with Max’s case in 2012, appears to be growing in step
with the nationwide opioid epidemic. Opioid overdoses have
quadrupled in the last 15 years, driven largely by a rise in
heroin use and, more recently, by fentanyl, an opioid
50 times more powerful than heroin. In
Massachusetts, where overdose rates have doubled since 2012,
75% of people who died of an
unintentional overdose last year had fentanyl in their
system.

Some doctors, including Lim, believe that fentanyl could be
driving the rise in amnesia cases. “The only thing that seems
to parallel this is fentanyl use,” Lim said.

The cluster of new cases in eastern Massachusetts appears to
be growing in step with the opioid epidemic.

Others aren’t so sure. “There’s a lot of people using
fentanyl and there’s only 14 of these cases,” Barash said.
It’s more likely, he said, that the drugs these patients took
were contaminated with some sort of toxin that specifically
targets the hippocampus.

There are lots of other theories. Perhaps some people have a
genetic predisposition that makes them sensitive to something
in the drugs. Maybe repeatedly using fentanyl, which causes
severe respiratory depression, could weaken the sensitive
hippocampal neurons over time, making them especially
vulnerable to an overdose. Someone even sent Barash a paper
about a cluster of people in Canada who developed amnesia
after shellfish poisoning, suggesting maybe there was a
common thread in the structure of the toxin involved.

Or perhaps there is no mystery. An opioid overdose causes
severely slowed breathing. With thousands of people in
Massachusetts now using opioids, perhaps these unlucky few
lost oxygen for just enough time to damage the sensitive
hippocampal cells, leaving the rest of the brain unscathed.

“I would fully expect this to happen with respiratory
depression or respiratory arrest from opioids,” said Gary
Franklin, a research professor in neurology at the University
of Washington. In 2005, Franklin was the first to report that people could die from overdoses due
to prescribed opioids. “If they think that something
extremely special is going on here, like one of these drugs
did something very targeted, I don’t think so.”

Lim, Barash, and DeMaria all dismiss this idea, arguing that
if it were true, far more of these cases would have been
reported before. “From a purely statistical standpoint,” Lim
said, “having a whole series of these cases makes me think
there is something else going on.”

One thing they all agree on: Addicts with mental confusion
show up to ERs all the time, and some unknown number of them
likely have damaged hippocampi. Next week’s announcement from
the state health department should help researchers get a
more precise count. Officials will now be systematically
monitoring all reported cases and looking for common links,
such as what drugs they’re using, whether naloxone was used,
or how long they were unconscious.

With so few cases, it’s not at all certain that they’ll find
clear answers. “The reality is that science and medicine,
they’re messy. You see a lot of things that don’t necessarily
get answered. You have to live with that,” Barash said. “But
would I be satisfied if we don’t find the answer? No, I
wouldn’t be satisfied.”

To Franklin, however, all this attention on the mysterious
cluster misses the far more important public health issue.

“The bigger point is that people overdose and then they go
back into the community and keep doing it, because they’re
not reporting it and nobody’s paying attention to these
people. And then they overdose again and they die,” he said.
“Don’t you think that’s a bigger picture than these sort of
rarified findings?”

The four original amnesia patients who went into Lahey
reflect this sad reality. The 41-year-old dad died less than
a year later. The two women eventually lost contact with the
doctors. Only Max is still around.

Kieran Kesner for BuzzFeed News

Photographs of Max and Ace.

When Max got out of Bridgewater, at the end of last
year, he and Ace tried to cut down on their drug use.
Especially Ace. “He wanted so badly for this to not be in our
lives anymore,” Max said.

This January, Ace went to Florida to do asphalt construction
projects, like he had many times before. But unlike years
past, he went with an older crew who didn’t use drugs. The
plan was that when he returned, he and Max would get an
apartment, get a dog, get married, and get sober.

But two days before Valentine’s Day, Max got a phone call
saying that Ace had died in his sleep. He’d been found in his
bed with empty baggies in his pockets.

“He was the best friend I’ve ever had,” Max said, crying. “I
don’t even know what to do now that he’s gone. It’s so fucked
up. I just got so used to him being there for me. There was
nothing I could do that would make him leave me. He was so
gonna be there for the rest of my life.”

One day in early March, Max’s mom came home from work and
went upstairs. She pushed open the door to Max’s room and saw
him lying on the floor, face gray. It was the first time she
had seen him after an overdose.

His mom immediately told her husband to call 911. She grabbed
the naloxone, which she kept on a bookshelf outside of Max’s
room, fumbled with the first one, and eventually stuck the
second one up his nose. The ambulance got there while she was
still on the floor, holding Max.

“It was the scariest thing I’ve ever seen in my life,” she
said. “That feeling, I carry it with me, all the time.”

Kieran Kesner for Buzzfeed News

Max shares a recent Instagram post showing his fiancé’s
name written in stones where he will be buried once the
ground thaws.

On March 23, Max went to his first appointment at Lahey in
three years. He sat slumped in a chair in the exam room,
wearing a tiny ace of hearts charm around his neck for Ace,
and a small silver fishing hook for his dad.

He coasted through his cognitive tests, reciting words back
in order, drawing shapes, and rattling off dozens of words
that began with the letter “F.” But he told Zabar he still
struggled to focus on bigger tasks, like reading books or
writing. He had managed to finish a book. He wanted to go
back to school.

He told him about Ace, his crushing depression, and his new
therapist. He told him he was still using, but buying his
drugs from a different dealer since the amnesia episode. He
didn’t want to go back to rehab. Instead he was trying to get
clean with ayahuasca, a powerful psychedelic drug that’s
being studied for treating people with
PTSD or addiction.

The next day, we talked about his habit. Since Ace died in
February, he said he’s done heroin maybe three times, instead
of daily; the stakes are much higher now, without Ace around
to revive him from an overdose. He couldn’t quite say that
he’s ready to quit, but kept repeating, “I want to want to
stop.”

If his mind fog ever clears, he’d like to write a book about
everything that he’s been through. “I want to show that it
happens to normal people,” he said. “But I can’t write a book
yet because I don’t have the resolution or whatever. I want
to be able to tell people, ‘I made it out alive.’” ●

Azeen Ghorayshi is a science reporter for BuzzFeed News and
is based in New York. Her PGP Fingerprint is 9739 9DAE 607E
A66A 3683 AC20 E34B D2A0 8899 74C4

Contact Azeen Ghorayshi at Azeen.Ghorayshi@buzzfeed.com.


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