Sunday, May 3, 2015

A Lyme Story

This month, the month of May, is Lyme Disease awareness month. During this time I'm going to be highlighting different Lyme stories, as well as sharing more of my own back from when I was on my mission...

This first one is one that I found that was published in a newspaper by a Neil Raven in 1991. It's a very cool story, well written, and gives a totally different perspective to Lyme. It's on a boy that is infected with Lyme and it imitates OCD and arthritis.

Bicycle Boy 

He was 12 years old, and every day he pedaled furiously on his stationary
bicycle for as many hours as they would allow him. He was so absorbed in his
effort that it was all they could do to get him to stop for meals. 

In fact, before he was hospitalized at a psychiatric instituition he had 
been unwilling to stop for meals, for school work, for the simple exchnages
of ordinary life. At age 12, he had lost almost 30 pounds. He looked, in the
language of the ward, cachetic, or in the language of his friends, as if he
had been an inmate in a concentration camp. 

His parents, after all the agonizing, had coaxed him into a car and 
driven him out to the facility , where they had carried his suitcase as they
walked him to the ward. And they had handed their son over to the care of
others, out of desperation, convinced that he was now beyond their help - 
their son who wanted only to pedal, to exert himself and withdraw from the
world he had once embraced with such sunny exuberance.  

The psychiatrists questioned the parents and the boy - the skeletal,
restless boy, who not so long before had been a good student, a healthy,
happy son. He had been a wonderful athlete, an exciting soccer player, but
he had had some knee problems. Over two years he had had four episodes in
which his right knee swelled enough to require treatment. 

It was after the last episode that he had withdrawn. He spent most of
his time alone in his room, fiddling with a ham radio, not tallking to his
friends or his parents. He stopped doing his homework. And then came the
exercising, the disinterest in food, the weight loss. 

At a glance, the boy reminded the psychiatrists of the young women who
suffered from that dreaded and potentially lethal psychiatric condition,
anorexia nervosa. He had that bony look, that restless hyperactivity. 
But he was male, which is unusual for anorexia nervosa patients. And he
was only 12 -- most patients with anorexia nervosa are older. It could be a
working diagnosis. But when things don't quite fit the pattern, you ask
questions. You call in more opinions. 

They called in Andrew Pachner. 

Andrew Pachner looks over to the framed photograph on the wall of his
office at the Georgetown university Hospital's neurology department. The
photo is a blowup of a single Borrelia burgdorferi spirochete - a
microorganism that bears a striking resemblance to the organism that causes
syphilis. Pachner smiles. 

The photo is one of the few clues that this the office of a physician. 
It is a tiny office, crowded with a large ficus tree. More wall space is
devoted to photographs of his four children than to his diplomas from Yale
College. Yale School of Medicine, and Johns Hopkins. There are photos of
his wife, scenes of His family cavorting among the goats and cattle on the
Maryland farm where he lives and from which he commutes daily. There are
bookcases jammed with textbooks, but it could be the office of a professor of

He recalls the day he first laid eyes on the 12-year-old bicycle boy. 
Pachner was then a junior faculty member in the Department of Neurology at
the Yale School of Medicine, living on a salary that didn't even approach
subsistence level. While the university looked the other way, all the junior
faculty members moonlighted to pay the rent. Among Pachner's stints was a
job evaluating patients at the psychiatric institute. 

Not all patients were selected by the psychatists for Pachner's review. 
But the bicycle boy was. For one thing, there were those swelling episodes
and the probable history of arthritis. 
While he was still in training, Pachner had drifted down to the Yale
arthritis clinic. Diseases of the joints might seem an unlikely source of
fascination for a doctor specializing in diseases of the nervous system, but
there was a vital connection. Diseases of both are often caused by mistakes 

that cause the immune system to turn against itself - autoimmune diseases. 

The doctors studying arthritis were happy to have Pachner around. Many
of their arthritis patients were suffering from autoimmune diseases, such as
systemic lupus erythematosus, which have neurologic complications. Pachner's
neurology expertise was welcomed.  

While Pachner was examining patients in the arthritis clinic, he became
an interested bystander to one of the most clebrated moments in medicine - 
the identification of a new disease. An arthritis specialist, Allen Steere, 
had become interested in a group of children in Old Lyme, Connecticut, not
far from Yale. The children had a curious form of arthritis that followed
the apprearance of a peculiar and characteristic skin rash called erythema
chronicum migrans, or ECM. 
Steere had described the condition in 1975. In 1982, Drs. Willy
Burgdorfer and Alan Barbour, working at the Rocky Mountain Laboratory in
Montana, pinpointed the cause of the disease. 

It turned out that Steere's young patients had an arthritis caused by a 
spirochete. Unlike bacteria, spirochetes are not easily grown in the
laboratory. The standard way to study a microorganism is to grow it on a
special broth, a culture plate. But spirochetes, like exotic zoo animals, do
not live long outside their native habitats. Once outside the body, they die.
The human body makes antibodies to the organism , which makes diagnosis
possible, but the antibody tests can be tricky, and occasionally misleading. 

The world's best-known spirochete is Treponema pallidum, which causes
syphilis. The one that causes Lyme disease would prove to be an even bigger
problem than syphilis in some ways, because people could not avoid it by
abstemious behavior. 

It was a spirochete that awaited children as they ran through the
Connecticut woods, doing what their parents thought was healthy and good. 
The spirochete was carried by forest animals, and it waited for the
unsuspecting, anyone who cared to enjoy the great outdoors: hikers, pregnant
women toting little kids, fishermen, gardeners, and farm workers. It was the
tick-borne spirochete that causes Lyme disease. 

The bicycle boy had had his first attack of Lyme arthritis in 1982, two
years before Pachner discovered him pedaling away on the psychiatric ward. 

Pachner was aware that syndromes similar to Lyme arthritis, syndromes
suspected to be caused by an infectious agent, had been described in Europe,
and he knew these syndromes often included some neurological features,
usually a form of radicular pain , whcih radiates down an arm or a leg. 
Radiculitis meant the trouble was in peripheral nerves, which flow to and
from the spinal cord out to the extremities. 

But none of the these arthritis-related European syndromes involved the
central nervous system. None of these European syndromes caused complex
behavioral changes, and no connection had ever been drawn between an
infectious arthritis and any sort of neurological disease that might affect a
person's behavior. 

In order to cause a behavioral change, a disease has to affect the brain
directly and in a widespread fashion. Various forms of vasculitis -
inflammation of the small blood bessels - can do this. Autoimmune diseases
can do this. But none of the infectious-arthritis group of diseases were
known to be capable of involving the whole brain. Focal lesions can "stroke
out" particular functions, causing paralysis, speech deficits, or sensory
loss, but the entire brain must be involved for memory deficits,
disorientation, or obsessive behavior to occur. 

Clearly, what was going on in the bicycle boy was amore than a simple
radiculitis: in which only a single nerve root would be affected. 

By 1982, physicians in Connnecticut had been alerted to the possibility
of Lyme arthritis, and the boy's first attack of knee pain had been treated
with a form of tetracycline. But two years later, when the boy started to
withdraw from life, started to become a behaviour problem, his physicians
made no connection between his psychiatric symptoms and his earlier episodes
of arthritis. "Lyme arthritis" was a disease of the joints or, at most, of
the skin and the joints: nobody had any basis for suspecting a connection
between the knee and brain disease - except perhaps for Andrew Pachner. 

Working in Steere's clinic, Pachner had begun to uncover neurological
symptoms and findings in his Lyme arthritis patients. Another neurologist,
Louis Reik, who had preceded Pachner in the arthritis clinic, had passed on
his suspicions that the Lyme patients might have more than simple radiculitis
complaints. But it was up to Pachner to push ahead with his observations. 
Pachner connected the symptoms of the European patients to the new, more
diverse symptoms he was seeing in the Yale clinic. Reading through the chart
of that 12-year-old boy, Pachner began to get excited. 

Could this boy have an infection that affected not just his knee but his
brain as well? The organism identified as causing Lyme arthritis was a
spirochete. Syphilis was a spirochete, and what syphilis could do to a brain
was well-known. It could cause dementia, bizzare pain syndromes, a whole
variety of symptoms so diverse that medical students are taught to think of
syphilis as the "great imitator".  

Syphilis mimics many diseases because it can affect so many organs:
heart, brain, joints, nerve, eye. Wherever blood goes, syphilis can go. 
Syphilis can cause a vasculitis of the small blood bessels in the brain, the
eye, almost anywhere. Could this new spirochete, this borrelia burgdorferi,
be as strange and protean in its manifestations as the "great imitator"

Could it be, thought Pachner, that this bicycle boy has Borrelia in his

If the spirochete that causes syphilis can enter the body through genital
tissues, multiply, migrate to small branches of the vascular tree, migrate
through the thin blood-vessel walls, and set up house in the brain and
nervous tissue, and in heart tissue and aorta, was it so farfetched to
believe that the Lyme spirochete might do something similar? 

Might it enter the body through a break in the skin caused by an insect
bite, the way malaria does, enter the blood stream, and multiply first in a
knee joint causing arthritis, and then wreak havoc years later in the brain,
as syphilis has been known to do? 

Not having an answer, not having solid evidence or similar cases, Pachner
could not voice his suspicions to the boy's parents. He spoke instead to the
psychiatrists and asked them to transfer the boy to Yale - New Haven
Hospital. The parents were told simply that there was a chance the therapy
at Yale could help their son. They were willing to try anything.  

When the boy arrived at the hospital, he was taken to the neurological
ward . Pachner met his parents and explained that he believed there might be
a connection between their son's previous bouts of arthritis and the problems
that had landed him on the psychiatric ward. But Pachner could make no
promises--they were in unchartered waters. 
The boy's parents did not know what to say. Their son's strange course
had been so baffling, their odyssey through the psychiatric wards so bizarre,
they could accept anything. They had no choice but to hope that Andrew
Pachner was correct. 

On the neurology ward, Pachner did a lumbar puncture on the boy, 
inserting a needle into the midline of his back, passing it between the
vertebral bones to the fluid-filled sac called in which the spinal cord floats.

Examining the fluid, called cerebrospinal fluid, or CSF, Pachner noted a
profusion of immune cells called lymphocytes. Now he knew he had something. 

Patients in Europe who had neurological symptoms following arthritic disease
showed similar findings in their cerebrospinal fluid. Those lymphocytes might
be the marker for the presence of the borrelia spirochete. Pachner ordered an
intravenous line started on the boy and 20 million units of penecillin to be infused
daily for fourteen days. 

There was no reason to expect sudden response or improvement. If
Pachner was right, if the boy's current depression and compulsive behavior
were attributable to a brain infection with the spirochete Borrelia, then the
intitial infection dated back two years, to his first episode of arthritis. 
A long standing, deep-seated infection like that could not be expected to be
resolved overnight. 


Within days of the intitiation of therapy, Pachner recalls, "his
behavior changed." 

The parents were speechless . Even now, Pachner finds it difficult to
describe the sensation of watching those first changes in the boy.  

"It was like-" Pachner searches for a word, shakes his head, then finally
says, "a fairy tale. That's all you can say ." 

The boy was discharged. Pachner watched him leave with his parents. 

Two weeks later, the boy arrived with his parents at Pachner's clinic. 
He had gained weight, but more important, he was talking again, was more
outgoing, and had gone back to school. Within months the boy was back
playing soccer and he was doing his homework. The transformation, or the
reclamation, was complete. He was back to normal. 

In the process, the understanding of the disease that had been called
Lyme arthritis had expanded. The disease was no longer limited to the
joints. It would henceforth be called Lyme disease, a disease of many
organs, including the brain. IT WAS THE NEW GREAT IMITATOR. 

Pachner has reported this new disease in many guises. A 21-year-old man
with a history of violent outbursts, confusion, and wild laughing was thought
to have a herpes-virus infection of his brain; treated for Lyme disease, he
returned to normal. A 55-year-old woman who had gone to her doctor with a
facial droop was cured after a diagnosis of Lyme disease led to early
tratment with intravenous penicillin. A 37-year-old man with fatigue, a sore
throat, joint and muscle pains, and facial-muscle paralysis who was thought
to have multiple sclerosis was found to have Lyme disease, and all symptoms
resolved . A 61-year-old man with double vision who was thought to have a
brain tumor was treated for Lyme disease with only partial improvement,
probably because his disease was too advanced to be cured. And a
6-year-old girl suffering from headaches, knee pain, and tingling in her toes
- and later from vertigo and staggering - was apparently cured after
treatment for Lyme disease followed positive studies of her blood and
cerebrospinal fluid...

*The Washingtonian Jan. 1991 Medicine by Neil Raven*

If you want to read the rest of this story click here.

Otherwise I find this story amazing. It makes me appreciate my Lyme symptoms more. I can't imagine how crazy I would feel if I just wanted to sit on a bike all day long! I shutter to think where I would be. It makes me that much more appreciative for what we know now, and where it still isn't much, I can get the help that I need. And I'm grateful for that.

-The Lyme Warrior