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Posted by kylasrain (Member # 12031) on :
Does anyone know if OCD behavior can be a symptom of Lyme or a co-infection?

I have Lyme, babs and bart...for the past few months, my tendancy to rub my fingers on sharp corners of clothes, twist pieces of hair and sometimes pick at dry skin or scabs has gotten so compulsive that a friend asked me if I was on speed or something!

I have many sores on my scalp because I can't stop picking at the skin. Its really getting embarrassing. I have a dr.s appt. tomorrow and am a little scared to mention it for fear of losing credibility -like I'm blaming every behavior on Lyme.

Thanks for your help.

Ky [loco]
Posted by tailz (Member # 10014) on :
I have SEVERE OCD. In fact, I'm on disability for that, depression, anxiety - not my Lyme.

So far my coinfections are negative, but I don't believe them.

I can't say for sure if it is Lyme or one of the coinfections, but I promise you it is some sort of infection or combination of them - be it bacterial, fungal, or viral. I think they all work together.

I tend to pick at things, though most of my OCD behaviors are cleaning, checking, ordering, repeating ones - though I got so weak with Lyme, that I'm more choosey now about which ones I expend my energy on, and some days I can't even do those even.

Right now I have a tiny bandage on my nose. Why? Because I removed a mole that insurance wouldn't pay to remove, and it wasn't healing because I kept touching it or trying to raise the outer edges of it. With the bandage on, I can touch it all I want. You might want to try that, at least when you are at home.

But don't let any doctor tell you this is psychiatric in nature. Thoughts, obsessive or otherwise, originate in the brain - and ours is inflammed, infected, and my SPECT scan showed areas of inactivity, though I wouldn't put yourself through that.

You also might want to google electromagnetic pollution, because I honestly think this is the cause of chronic infections like Lyme - and thus, OCD. "Cross Currents" is the best book on the subject.
Posted by Vanilla (Member # 11155) on :
I have seen OCD included in a Lyme symptom list some where.
Posted by bettyg (Member # 6147) on :

checking that doors are locked at bedtime;

keeping my fingernails cut down to noting, and filing nails so nothing is SHARP that bothers me terribly. [Frown]
Posted by tailz (Member # 10014) on :
I was doing the fingernail/toenail thing, too, there for awhile. That one is actually a little better now.

I even showed that to my one doctor before I was diagnosed. He said nothing - just looked at me funny.

I even think my toes and fingers were infected there for awhile. The worst part was they didn't hurt like crazy until the next day, so I kept snipping away.
Posted by Radha (Member # 8464) on :
i have lyme and babs and do have some very irritating bad OCD habits, like i just cannot sleep on my bed unless i have picked every hair and fuzz ball off the sheets, or i must take a bite on a certain minute and have repeating thoughts that just keep repeating until i say them out loud, so thank GOd my mom is with me all the time to listen to me all day! but its terrible having to depend on someone so so much, very scarey needing someone so much!
Posted by merrygirl (Member # 12041) on :
I have had severe OCD since I was 12. I am newly diagnosed with Lyme.

I had taught myself how to "get out of my rituals" somehow and have been relatively good and off meds until Lyme cam along. I am definitely more anixous and depressed now. I do more OCD stuff now too.

I am too sick and too tired to do most of the things so in a way that helps me.

Also consider a SSRI like Zoloft. It has been great at lowering anxiety and OCD for me. I was off of it for several months (I had severe PPD) and when Lyme came along I needed to go back on it. Melissa
Posted by CaliforniaLyme (Member # 7136) on :
OCD & Lyme!!! This is why I like PAchner!
source: The Washingtonian Jan. 1991
Medicine by Neil Raven

title: Bicycle Boy

His Behavior Was Compulsive , It's Origins Unknown; Then a Good Doctor
Seemed to Make a Miracle Happen

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.
[first described in this contry by Dr. Scrimenti in Wisconsin, in 1970. -
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 brain?

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 similiar 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 initiation 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 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 treatment 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.

Pachner thinks about the bicycle boy and says he was just one of many
cases. His eyes widen: "There are so many ways it can present. And there are
so many ways it presents that look like bad diseases, that when you identify
it and your reverse it - YOU FEEL LIKE GOD!"
Pachner finds all this humbling. He is quick to say that his insight was
built upon bricks laid by others: by Allen Steere, who identified the
disease in those children of Old Lyme; by Louis Reik, the Yale neurology
resident who preceded Pachner in the arthritis clinic and who convinced
Pachner that patients with Lyme arthritis actually had neurological problems:
by the whole stucture of the Yale School of Medicine, which fostered clinical
investigation and which alllowed neurologists to haunt the arthritis clinic.
He speaks of the subtle differences among the various strains of the
spirochete that may cause subtle differences in the damage, the signs, and
symptoms of the disease. In his laboratory, he is geting to know the
spirochete, or the "bug," as he calls it. He is fascinated by the mysteries:
Deer, for example, do not get sick, although they harbor large numbers of
Borrelia organisms. Why? "Host defenses," Pachner says. It comes back to
the immune system.
He seems driven by the will to know. He was working on his studies of
the Lyme disease patients while he was living the impoverished life of a
neurology resident, moonlighting like mad.
He never expected financial rewards from his work. Pachner's father, a
Czech diplomat before the Second World War, had fought Hitler, and after the
war he had come to America, but the best job he could get was in a factory.
The family was not wealthy. Yet they managed to send Andrew to Yale. His
widowed mother still doesn't understand what it is that Andrew does at
Georgetown. She wishes he would "be a real doctor," which is to say, she
wishes he would go into private practice. But that isn't what Pachner has in
There are still too many questions to answer.

Pachner left Yale for Georgetown in 1987, following Johnathan Pincus, the
Yale professor of neurology who had been appointed chairman of the neurology
department at Georgetown. Pinicus, author of the classic textbook Behavioral
Neurology, was able to attract Pachner offering lab space and freedom to
pursue his research interests. Pachner shows me around his laboratory, of
which he is proud. I remember how scarce lab space was at Yale, how people
doubled up and scraped by. The lab Pachner has at Georgetown would have been
considered a land of milk and honey at Yale. Several technicians work for
him, and they are busy with lab chores. He has set up an assay for the Lyme
antibodies, and a technician shows him some "runs."
The blood samples are sent in from local physicans, and some test

Although Lyme disease is known to occur in may countries, particularly in
Europe, and in 45 states in this county, the Mid-Atlantic and New England
states have an especially high infestation rate. The tick that carries the
disease, Ixodes dammini, [Ixodes scapularis] clings to deer, field mice, and
even dogs. Because the ticks are so small, their human victims are often
UNAWARE of having played host to this blood sucker, which may cling for four
to six days to an usnuspecting body.
In endemic areas such as certain parts of New England and Washington, any
patient who walks into the doctor's office with one side of his face drooping
in the classic manner of Bell's palsy should be suspected of Lyme disease.
And Bell's palsy is only one common neurologic complication.
Since Pachner's studies called attention to the many sites that may be
inhabited by the spirochete, attention has also been focused on heart
lesions, which vary from direct attack on the heart-muscle wall - myocarditis
- to an attack penetrating every layer of the heart from the inner lining
through the heart walls to its coverings -pancarditis.
Patients with Lyme disease can show up at the doctor's office with
anything from severe chronic fatigue to arm pain to a variety of palsies to
arthritis and skin rashes. Erroneous diagnoses of dementia, multiple
sclerosis, psychiatric disease, and arthritis are common, so closely can the
great imitator mimic the symptoms of other illnesses.
The diagnosis can be difficult even when the physician suspects Lyme
disease. In Pachner's laboratory at Georgetwown, blood, spinal fluid, or
joint fluid from patients with Lyme disease often fails to yield positive
cultures for the spirochete, which is difficult to keep alive outside the
body. While Pachner's laboratory has the highest-quality technicians and
antiseums, only about half the patients are positive for the antibody to the
B. burgdorferi spirochete early in the couse of the disease. And, if the
patient happens to be treated with an antibioitc before the diagnosis is
made, the antibody test may turn negative while living spirochetes are still
reproducing inside the body.
Making matters worse, antibody tests for Lyme disease may be falsely
positive in patients who have no Lyme spirochetes but who have instead
syphilis or other disease. Special antibody tests have to be done to be sure
the doctor is not dealing with a "false positive," in which the test is
postive but the patient has no Lyme disease.
Questions have been raised about the wisdom of any pregnant woman in an
endemic area such as Washington venturing into wooded areas during tick
season. Late spring and early summer are the peak times for the bites that
leave the hallmark skin rash, but patients can BE INFECTED ON ANY WARM DAY OF
ANY MONTH. There is still no clear evidence about how much risk Lyme disease
poses to a developing fetus, but in the abscence of hard data, may physicians
point to the concept that Andrew Pachner's studies implied: This spirochete
behaves in many ways like syphilis, infiltrating along blood vessels. With
syphilis as a model, few physicians feel comfortable about the risks for
mother and child infected with Lyme disease.
With its many parks running through the heart of the city, with the
C&O-Canal running into the heart of Georgetown, Washington is an area in
which the country laps up to the front door of suburban and urban dwellers.
Deer are common along the canals far into town as Glen Echo and Brookmont on
the Maryland-District line and, in Virginia, along the George Washinton
Parkway almost to Rosslyn.
Over the coming years, as Washington physicians become more aware of its
many guises, more and more cases of Bell's palsy, dementia, fatigue, and
arthritis wil prove to be Lyme disease.
And there may even be a few boys who have withdrawn from friends and
families-boys who are languishing on psychiatric wards-whose blood or spinal
fluid will wind up in Andrew Pachner's lab, registering positive.

** NOTICE: In accordance with Title 17 U.S.C. Section 107, this material
is distributed without profit to those who have expressed a prior interest
in receiving the included information for research and educational
Posted by tailz (Member # 10014) on :

I was not 'classic' anorexic as a teen - I didn't make myself throw up - I didn't make myself lose weight - I didn't take take laxatives or diuretics. I also didn't miss periods.

But I wouldn't allow myself to GAIN weight. I did this through diet - and grueling exercise, pretty close to this boy. ONE HOUR every night of vigorous repetitive exercises and/or aerobics. Like 50 to 100 of each exercise (situps, toe touches, etc...) - one right after another. Sometimes jogging. I used to blow the yearly school fitness tests away.

I almost got burned with an anorexia dx though, back in junior high school.

I weighed 78 lbs in 7th grade, 81 lbs in 8th grade and 84 lbs in 9th grade. I was 5'4". But when the school nurse had recorded my weight in 8th grade, she had accidentally recorded it as 101 lbs, so in 9th grade when I weighed only 84 lbs, it looked like I had lost weight - close to 20 lbs in one year. This caused some trouble because, when the nurse called my mom, she told the school I did exercise too much. I got in trouble in junior high for studying too much, too.

I eventually stopped watching my weight though after I got married. I actually weighed less after I stopped watching my weight, than when I had been watching it.

But that's what doctors (and probably my family) were thinking when I dropped to 88 lbs last year - they thought I was losing weight intentionally, and I wasn't.

I think anorexia nervosa is honestly a young girl's instinctive attempt to kill her infection. The reason I believe girls suffer from anorexia more often than boys is because their hormones are ideal for parasitic reproduction.
Posted by listenswithcare (Member # 10719) on :
There is a psychiatrist, Virginia Sherr, MD who got Lyme herself. She has a website of information on Lyme - much of it relating to the neuro-psychological components of disease. OCD is definitely one of them.

Here is her site:

Posted by kelmo (Member # 8797) on :
Do a search here on's everywhere!!!
Posted by kylasrain (Member # 12031) on :

I DID do a search on OCD and not much came up. Most were not really connected to the OCD symptoms I described, which is why I posted. I swear I'm not THAT lazy [Wink]

Posted by kylasrain (Member # 12031) on :
Cool website. Thanks Robin.
Posted by kelmo (Member # 8797) on :
Oh golly, I wasn't being sarcastic, I was just waxing silly!! I'm sorry it didn't come across that way!

I thought for sure that if you did a search on OCD you would get the maximum 300 hits.

Everyone's OCD is a little different. My daughter has her own little routines. I'm not even sure I know all of them. I only know that I have to keep disinfectant wipes handy.

It's gotten better with medication, treatment, and maybe the two years of therapy helped. She started this issue a couple of years before the lyme diagnosis.

All best
Posted by kylasrain (Member # 12031) on :
Thanks Kelly:)

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