-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Keebler
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Yes, that's very good.
a week or two ago, part of it was posted here. The full article was not available on line (that I could find).
What was available (sadly) seemed very accurate to what so many others have experienced/ are experiencing.
Her book is due out soon. You can read a little about it at Amazon.
posted
the remainder of the article is fantastic. i will try and type up and post full article.
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
This article is amazing, she is the author of a book coming out in June about Lyme disease that looks fantastic
In a strange twist - I was interviewed for another article that appears in the same issue of Psychology Today (not lyme related
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posted
Lyme Disease: The Great Imitator Lyme disease can masquerade as a host of psychiatric ills, confounding doctors and driving patients to question their very sanity.
1993, I spread a map across the living room of our apartment in Forest Hills, Queens, and marked a bull's-eye at Grand Central Station,
where trains come in from the 'burbs. I drew a 50-mile radius around the mark, and spent the next three months searching, with my husband, Mark, for a house. We sought top-rated
schools for our two boys, proximity to a train en route to Manhattan, and an ample yard. As chance would have it, we ended our hunt at the most devastatingly beautiful spot, a winding
country road abutting a spruce forest in the tony suburban hamlet of Chappaqua, in Westchester County, New York.
It would be the biggest mistake of our lives. If only we'd known how infected we'd get living on that land and how much skepticism we would face
as we sought treatment, if only we'd understood that we, ourselves, would be the bull's-eye. We never would have
left Queens. It took years for us to understand that the vague headaches, joint pain, and bone-weariness we initially experienced were more than just symptoms of our
busy suburban lives: Instead of receiving early diagnoses and treatment for what really ailed us--Lyme disease--our infections were allowed to
smolder, eventually becoming neurological and eluding the simple cure that could have worked at the start.
It was all so gradual. In the fall of '93, I began to feel ill. Though I never took a day off work, I functioned for years through an
avalanche of impediments. Migraines with nausea had become my steady companion. I had intermittently sore and swollen knees, and
the buzzing in my left hand was so intense my fingers sometimes formed claws. My vision, at 20/20 for most my life, had begun a sudden, precipitous decline.
Mark, meanwhile, was teetering. An avid tennis player with great coordination, he began stumbling and bumping into walls. Formerly
affable, he began exploding at offenses as slight as someone spilling water on the floor. He was an award-winning journalist with a love
of literature and a vocabulary so vast he was our stand-in dictionary. But gradually he began struggling with memory and groping for words. He
left his job as an editor after realizing, one day, that he'd spent hours trying to read a single, simple paragraph.
Our younger son, David, began to sleep--first so long that he could not do his homework or see friends; eventually, so much (15 hours a day)
that he could not get to class. Violating the strict attendance policy at his prep school but without a medical diagnosis,
he was asked to leave. Hardest hit was Jason, the elder, who suffered fatigue and shooting pains starting at age 9, the summer we took up
residence in our fairy-tale house. The doctors called these growing pains normal, but by age 16 in the year 2000, Jason was
essentially disabled. He couldn't think, walk, or tolerate sound and light. His joints ached all day. On medical leave from high school, he
spent his days in the tub. As his condition worsened and doctors at the teaching hospitals of Manhattan eliminated one diagnosis after the
next, I began to wonder about Lyme disease. Yet throughout most of Jason's decline, our pediatrician dismissed the notion out of hand. "There are too many symptoms here and he's way
too sick for Lyme disease," he said. Instead, the interpretation he came to favor was psychological: This great collapse could be in
Jason's mind. How lucky we were when he referred us to a psychiatrist, who said there was no psychiatric illness that could do this to
a child. No, he insisted, this had to be a physical illness, and the pediatrician had better go back to the drawing board. The chastened pediatrician drew 14 vials of
blood, testing for hormone imbalance, mineral deficiency, anemia, and a host of infections, including Lyme. A week later he contacted us,
baffled. Just one test, a Western blot for antibodies against Lyme disease, had come back positive--in fact, so off-the-charts that
almost every band was lit. Jason was quickly reported to the Centers for Disease Control and Prevention (CDC) as an unequivocal case of Lyme.
We had an explanation for Jason's illness and an inkling as to what might be wrong with the rest of us, at last.
Our nightmare. Had just begun. As with the quest for diagnosis, almost everything about Lyme disease turned out to be controversial.
From the type and length of treatment to the definition of the disease to the kind of practitioner we should seek to the microbe
causing the infection) or whether it was an infection at all), Lyme is a hotbed of contention. It
was the divisiveness surrounding the disease that had caused our pediatrician and the specialists wed consulted to hold back diagnosis
as Jason and the rest of us became so ill.
For patients with early stage Lyme, the illness tends to be mild and a month of antibiotic treatment usually offers a cure. But for those
who miss early diagnosis, for people like us, infection can smolder and progress, causing a disabling, degenerative disease that
confounds doctors and thrusts patients into the netherworld of unexplained, untreatable ills.
The first time I met a group of severely disabled Lyme patients I spent hours listening to their stories, some of them heartbreaking,
and mourned with them their lives of frustration and pain. A month later, when I met the same patients gain, several could not
recall me. At first I was insulted. Had I been that forgettable my empathy that banal?
Then I realized: many of the sickest Lyme patients were cognitively impaired. Despite my research, despite my own Lyme disease, I still
hadn't gotten it. To this day, popular perception holds that Lyme disease is an affliction of the knees, characterized by swollen
joints and an inability to serve in tennis or descend a flight of stairs. Musculoskeletal symptoms can be a hallmark of Lyme, but the
early rheumatologists who first defined the disease had recognized just one part of the elephant - it would take more time, and a
broad array of specialists, for the widening picture to emerge.
One of the first to realize the psychiatric implications of Lyme was Andrew Pachner, a Yale neurologist who moon lighted at psychiatric
hospitals. On one such gig, he was asked to evaluate a 12-year-old boy who, prior to admission, had pedaled his stationary
bicycle constantly, barely stopping to sleep or eat. Before the start of this behavior, the boy had been an excellent, hard-working student with
a talent for soccer. But his soccer days were disrupted when he developed swollen knees and was diagnosed with Lyme
arthritis. The child was treated and seemed to get well. When his obsessive pedaling began years later, his prior Lyme was already a
distant memory, and no one saw the relationship between the two.
Except for Pachner. Given what he knew about syphilis - another spirochetal infection that gravitates to the brain and causes
neuropsychiatric disease - he wondered whether Lyme disease and the obsessive cycling might be linked. In a leap of insight, he moved the boy to Yale and began infusing him with 20 million
units of penicillin for 14 days. It was like a miracle. Within days the child started to improve, interacting with staff and
eating food. Two weeks later he returned home and went back to school.
In 1989, writing in the Archives of Neurology, Pachner, by then at Georgetown University School of Medicine, described six cases of central
nervous system Lyme disease, of which his bicycle boy was just one. Another patient, a 21-year-old man, had
violent outbursts and wild laughing, attributed to herpes virus thought to infect his brain but he tested positive for Lyme disease and treated
with antibiotics, was finally cured. A 6-year-old girl, so afflicted with vertigo she staggered, tested positive for Lyme and was treated; she, too, got well
Neuroborreliosis, Lyme disease infecting the central nervous system and brain, appeared almost protean and could be mistaken for a host
of other ills. Lyme disease was ``the new
great imitator,'' Pachner declared. Reports of bizarre complications now flowed into the medical journals. A group from Stanford
described a 25-year-old woman with hallucinations, hypersexuality, nightmares, and a rash. Scientists from Germany found Lyme could cause Tourette's. Researchers even found
a link between Lyme and the
motor neuron disease amyotrophic lateral sclerosis (ALS).
If one were to describe all the macabre presentations of neuroborreliosis, it would fill a book. But the far more common problem - the
confused state known as encephalopathy, or brain fog - was bad enough. Brain fog includes a disorienting lapse of memory, an
inability to concentrate, difficulty falling asleep, and profound fatigue.
Though my family and I were more coherent than the sickest patients, we suffered, too. There were so many ordinary things that confounded us,
hounded us, in the course of everyday life. Take our taxes, for instance every year since 1978 we had done our taxes
together, filing receipts in net manila folders, calculating the deductions, and sending it to our accountant, Irwin. But now we were stymied.
Sitting together with hundreds of receipts we had stashed in trash bags, with credit card bills and cancelled checks, we found it impossible to do the sorting. We ignored Irwin's calls and didn't do taxes for
years until my brother, a tax attorney, swooped down, demanded our mess, and took care of it for us.
Mark almost burned down our house y tossing ashes from the fireplace atop bags of dried-out leaves h head moved into the garage. The pre-Lyme Mark knew to store dried
leaves outside and that hot cinders added to piles of dried leaves meant inferno and possible death; but Mark-on-Lyme did not stop to consider the consequences. Our garage was ablaze while
we blithely watched a TV show upstairs. Passers-by called the police. Our family room exuded the stench of burnt wood and plaster for years.
Brain fog was new for us formerly the family of fast thinkers. Now we were the family of stumblers and bumbles make conversation of parsing eh details of life under the
psychic din of an ocean roar I started to think of us as Dumb and Dumber.
Lyme encephalopathy was hardly undocumented. In one study, the neurologist John Halperin, now at North Shore University Hospital in Manhasset,
New York, found whit matter lesions, much like those seen in multiple sclerosis, in the brains of 7 out of 17
encephalopathic Lyme disease patients. The lesions represented brain damage. Sure, Lyme patients were not usually as impaired as those with bullets in their brains, but the brain fog,
the deficits in language and organization, the psychiatric leftovers of anxiety,
depression, and OCD, could still disrupt lives. Adults lost houses, marriages, and jobs and were compromised as parents. Children lost their childhoods when cognitive or emotional
disabilities forced them to homeshcool. The impact was major, but
neurologists often characterized such symptoms as minor, nonspecific, and vague.
The professionals finally able to understand the cognitive and psychiatric fallout of Lyme disease in patients' lives were the
psychiatrists. One of the first was Brian Fallon, whose
interest had been sparked in the late 1980's while helping a close relative overcome a serious case of Lyme. He had just finished his psychiatric residency and secured a gig as a
fellow for the National Institute of Mental Health, stationed at the New York State
Psychiatric Institute at Columbia University in New York City. The young doctor - whose kempt long hair, neat beard, and energetic demeanor
made him look like he'd marched off the album cover of Abbey Road - specialized in anxiety disorders, with a
focus on hypochondria. But news of his interest in Lyme disease had traveled through the grapevine to Lyme patients in southeast Connecticut. Some of them had developed
psychiatric disorders after having Lyme disease. Could Fallon follow up?
Fallon drove out to Old Lyme, where the disease had first been recognized, and spent the day meeting with an afflicted group. Fallon was well aware of the single-case studies and series
of anecdotes continually published in medical journals. One researcher had even
staged the psychiatric manifestations so that they paralleled the neurological disease signs recorded before: in the first stage, mild
depression could parallel a fibromyalgia-like illness. In stage two, mood and often personality disorders often emerged alongside meningitis (swelling of the brain's lining) or neuropathy (tingling or numbness from damaged
nerves). Finally, in stage three, with the onset of encephalomyelitis (inflammation of the brain and spinal cord), the clinical picture might include psychosis
or dementia.
Conducting interviews with the Connecticut patients, Fallon learned that depression or panic could worsen after the start of antibiotic
treatment, suggesting a kind of psychiatric Herxheimer reaction, an exacerbation of symptoms that can occur when bacteria are
killed. Conducting formal interviews with the patients, he found that neuropsychiatric Lyme disease and regular psychiatric disease appeared
much the same. This was of particular concern since so many patients failed to notice a rash or register positive on
standard tests. Without a correct diagnosis they might be treated with psychiatric drugs but not the antibiotics that could bring a cure.
Children with Lyme disease can be mislabeled with a primary psychiatric or psychological problem, while the roof issue might never be
addressed. Take Seth Statlendor of greater Boston. At 12, he was so ill he couldn't regularly attend school. He
bravely played soccer but felt so sick he threw up in front of his team. One doctor suggested bulimia. ``I'm a psychologist,'' his mother, Sheila Statlender, said. ``Throwing up in front
of his team and a crowd of spectators doesn't fit the profile. Bulimics purge in private.''
Seth's sister, Amy, also started getting sick. First it was a cough, something the pediatrician thought might be an allergy. But the cough
continued, taking on a chronic, croup-like quality that was not relived by nebulizers or other treatments. Finally, a
pulmonary specialist suggested cognitive-behavioral therapy for the cough. But Statlender pointed out that if you cough
throughout the night in your sleep, it's not a cough habit, which is what behavioral therapy would treat.
Time and again, Fallon, an expert in hypochondria, had seen frustrated doctors dismiss medically ill patients as psychiatric
cases due to their own inability to diagnose the
disease with Lyme, the mistake was especially damaging since a delay in treatment could turn a curable, acute infection into a chronic, treatment-resistant disease.
The solution, Fallon knew, was to gather objective evidence of physical damage to the brain working with radiologists at Columbia; he found that one useful tool was SPECT (single
photon emission computed tomography) scan, which generated a moving picture
of the brain. A radioactive solution was delivered intravenously, then tracked to measure blood flow through the brain. SPECT could show
something amiss even when MRI scans appear normal. After treatment, many patients showed improvement on the SPECT scan
: Doctors can destroy patients by telling them that a true, physical disease is all in the head,'' says psychiatrist Virginia Sherr of Holland, Pennsylvania, and suicide can be a
result. In the Lyme hot zone of Bucks County, she sees a new case of Lyme
encephalopathy every week. ``I am a psychiatrist. These are not people who are referred to me because they have Lyme disease - they are sent because they have panic attacks,
hallucinations, obsessive-compulsive disorder, and depression. They are in agony - not only neuropsychiatric pain, but physical pain as well. They have never been
hypochondriacal in their lives, but that is how they are labeled. They are encephalopathic, but they have been told they are not by physicians
who wouldn't know a case of encephalopathy if they fell over it. They are physically sick, but are blamed by doctors who say: ``You belong to a cult if you think you have Lyme', or ``You
look okay to me.'''
Three decades after Lyme disease was identified in southeast Connecticut, its neuropsychiatric fallout remains misunderstood, not just by local doctors, but also by many of the
rheumatologists, dermatologists, and neurologists who defined the disease at
first patients with this controversial but common outcome, most often a consequence of late diagnosis, may negotiate arduous paths back to
health. Yet once the problem is recognized, aggressive treatment can help. Now my son Jason, the sickest in my family,
is about to graduate from Brown. His brother, David, will be a junior at Vassar. As for Mark and me, we work long, hard days as writers and editors, in a place we love, Manhattan, as far
from the tick-infested of rests of Westchester County as we can get.
Pamela Weintraub - senior editor at Discover magazine. Published in May/June 2008 Psychology Today
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Clarissa
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posted
CJ: Thanks so much for sharing the whole article (ESPECIALLY if you typed that by hand...my word!)
I'm so psyched it will be in a publication many professionals in the psychiatric industry will be reading.
posted
yep typed by hand...big job but worth it! so glad someone with enough credibility is wiiling to speak out & be heard
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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CJ - THANKS SO MUCH. Your breaking up the type was also very kind of you.
I hope you don't have to have your hands on ice for a week, now.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you CJ, as a neuro-psych suffer this article is invaluable to me. Hopefully, things are gradually swinging our way and treatment and diagnosis will improve.
Thank you again, Feelfit
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Beverly
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posted
Thank you for posting this, I really want her book.
I hope Pamela and her family are doing better.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
Excellent article. I just wish she'd added infectious disease Drs to the list of Drs who still don't understand Lyme disease.
Posts: 975 | From California | Registered: Apr 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
CJ, thank you for typing that out. You did a very good job.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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cottonbrain
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posted
many thx for the post
Posts: 1173 | From USA | Registered: Nov 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
yes. thank you and thank you for spacing it out.
not able to read all of it yet but will keep trying.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
copying this from the link someone at the bottom posted, and BREAKING IT UP GALORE due to long solid block text !!! uffda
discovered when getting into this, it's SAME article CJ typed from scratch!! fyi, it's in whole sentences vs. being broken up except a couple areas for emphasis of what she was discussing. betty ...
Introduction: Navigating by Lymelight
Chappaqua, New York, 1993-2000
Starting in the early 1990s, after we moved from a city apartment to a wooded property in Westchester County, New York, our family began to get sick.
At first the illness was subtle: The vague headaches, joint pains, and bone-weariness seemed par for the course in our busy suburban lives.
But as years passed, the symptoms intensified and multiplied, burgeoning into gross signs of disease.
My knees became so swollen that I descended the steps of my house while sitting. Swallowing my food, I choked.
My arms and legs buzzed--gently at first, but then so palpably I felt like I was wired to a power grid.
A relentless migraine became so intense I spent hours each day in a darkened room, in bed.
My husband, Mark, an avid tennis player with great coordination, began stumbling and bumping into walls.
Formerly affable, he began exploding at offenses as slight as someone spilling water on the floor.
He was an award-winning journalist with a love of literature and a vocabulary so vast he was our stand-in for the dictionary.
But slowly he began struggling with memory and groping for words. Finally, ground to a halt, he left his job as editor in chief of the newsletter, Bottom Line Health one day after realizing that he'd spent hours trying to read a single, simple paragraph.
Our youngest son, David, began to sleep--first so long that he could not do his homework or see his friends; eventually, so much (fifteen or more hours a day) that he could not get to class.
Violating the strict attendance policy at his prep school, he was asked to leave.
Hardest hit was Jason, our oldest, who suffered fatigue and shooting pains starting at age nine, the summer we took up residence in our fairytale house in the woods.
The doctors called these ``growing pains'' normal, but by age sixteen Jason was essentially disabled.
He couldn't think, walk, or tolerate sound and light. His joints ached all day long. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom, drifting in and out of consciousness while hot water and steam eased his pain.
As his condition worsened, as all sorts of lab tests came back negative, a raft of specialists at New York City's top teaching hospitals suggested diagnoses from migraine aura (the dizzying buzz of a migraine) to fifth disease (a swelling of the joints caused by infection with parvovirus).
Each diagnosis elicited a treatment, but none of them worked.
``What about Lyme disease?'' I asked.
``There are too many symptoms here and he's way too sick for Lyme disease,'' responded the pediatrician, who declined to even test for it.
But by 2000, with answers still eluding us, the pediatrician drew fourteen vials of blood, testing for hormone imbalance, mineral deficiency, anemia, and a host of infections, including Lyme.
A week later he contacted us, baffled. Just one test, a Western blot for antibodies against Lyme disease, had come back not just positive, but off-the-charts reactive.
Jason was quickly reported to the Centers for Disease Control and Prevention (CDC) as an unequivocal case of Lyme disease.
When the head of infectious disease at Northern Westchester Hospital put his imprimatur on the diagnosis, we had an explanation for Jason's illness and an inkling as to what might be wrong with the rest of us, at last.
Our nightmare had just begun. As with the quest for diagnosis, almost everything about Lyme disease turned out to be controversial.
From the length and type of treatment to the definition of the disease to the kind of practitioner we should seek to the microbe causing the infection (or whether it was an infection at all), Lyme was a hotbed of contention.
It was the divisiveness surrounding the disease that had caused our pediatrician and the specialists we'd consulted to hold back diagnosis as Jason and the rest of us became increasingly ill.
For patients with early-stage Lyme disease the illness tended to be mild, and a month of antibiotic treatment usually offered a cure.
But for those who slipped through the cracks of early diagnosis, for people like us, infection could smolder and progress, causing a disabling, degenerative disease that confounded doctors and thrust patients into the netherworld of unexplained, untreatable ills.
Despite the effectiveness of early treatment, withholding therapy had become increasingly common as a battle royal over Lyme's essence spilled from medical centers and clinics into the communities where people got sick.
The same doctors who routinely doused acne and ear infections with years of antibiotic often would not prescribe even ten days of such treatment for Lyme unless proof of infection was absolute.
Meanwhile, the few doctors willing to treat the sickest patients with longer-term or higher-dose antibiotics could be called up for trial by medical boards, putting their practices and licenses at risk.
The war over Lyme had raged for twenty-five years when it swept us up in its madness.
On one side of the fight were university scientists who first studied Lyme disease, initially writing it up in medical journals as an infection of the joints.
The disease they described was caused by the spirochete Borrelia burgdorferi and transmitted to people by the bite of a deer tick.
It was hard to catch and easy to cure no matter how advanced the case when first diagnosed.
Late disease was rare, these academics said, because Lyme was recognized easily through a bull's-eye rash and a simple, accurate blood test.
Rarely was their version of the disease seen outside the Northeast, parts of California, and a swath of the Midwest.
To the horror of these scientists, the circumscribed disease of their studies had been hijacked by ``quack suburban doctors'' who saw Lyme everywhere, from Florida to Texas to Michigan, invoking so many signs and symptoms that they included every complaint under the sun.
These heretical doctors, the scientists charged, were dispensing antibiotics like water, all the while raking in money from patients too deluded to realize they didn't have Lyme disease at all.
The patients had other things, the scientists said: sometimes mental disorders, but also chronic fatigue syndrome and fibromyalgia, illnesses with no known cause or cure.
On the other side of the fight, far from the ivory tower, the rebel doctors and their desperately sick patients insisted that Lyme and a soup of coinfections caused a spectrum of illness dramatically different from the one the scientists described.
Knees didn't always swell and the rash (rarely a bull's-eye) often wasn't seen.
Instead the patients were mostly exhausted, in chronic pain, and dazed and confused.
The mental condition they called ``Lyme fog'' robbed them of short-term memory, stunted their speech, and crippled their concentration.
Brain infection could inflict a host of frank psychiatric problems from bipolar disorder and depression to panic and obsessive-compulsive disorder (OCD), they said, and Lyme could trigger autism or be confused with amyotrophic lateral sclerosis, known as Lou Gehrig's disease, or ALS.
Because their illness differed profoundly from the disease described in textbooks, because it often eluded blood tests, the patients went undiagnosed and untreated for years.
As they struggled for answers, once-treatable infections became chronic, inexorably disseminating, and causing disabling conditions that could never be cured.
If treatment was to work at all, the heretic Lyme doctors said, it required high-dose antibiotics, often in combination or delivered intravenously, sometimes for months or years.
The patients, for their part, tried to comprehend why the academics dismissed their cases as false.
The scientists were promoting an impossibly narrow version of Lyme disease to protect their early work and secure a windfall from Lyme-specific patents, some patients believed.
A flow chart entitled ``The Wall of Money'' began circulating around support groups, connecting some of the researchers with U.S. patents and federal or industry grants.
Other patients complained that university physicians consulted for managed care, making hundreds of dollars an hour dismissing Lyme diagnoses and advising rejection of their claims.
The academics advanced their agendas, the patients charged, by reporting the doctors who treated them to disciplinary boards.
Whatever the motive for such reports, the resulting investigations had an effect.
As medical tribunals swept through the Lymelands, primary care physicians became ever more cautious about treating or even diagnosing Lyme disease for fear of becoming targets themselves.
Stepping into the breach, a few doctors--
Ed Masters of Missouri, Charles Ray Jones of Connecticut, Ken Liegner and Joe Burrascano of New York
--went to the mattresses for the patients, but with the Lyme war so brutal, thousands of cases were missed.
Lyme or not Lyme? Diagnoses could get mixed up. Dueling brain tumor stories make the point.
A young woman from Australia went hiking in California. From that trip on her health declined.
She eventually experienced such pain, disorientation, and inflammation that doctors thought she might die.
She returned to the U.S. for treatment, and neurologists in Manhattan diagnosed a brain tumor.
They actually operated, but when they opened her up, there was no tumor. It turned out the young woman had Lyme disease. She was treated with antibiotics and cured.
A young man from New Jersey was diagnosed with Lyme disease and treated with antibiotics for months without impact.
Finally he was sent to a local medical center, and further testing was done.
Doctors discovered a brain tumor and operated to remove it. The boy from Jersey, like the girl from Australia, got well.
The more I investigated, the fuzzier the whole thing seemed.
Doctors and labs report more than 23,000 cases falling within the CDC's circumscribed definition for Lyme disease each year--a number the CDC estimates is 10 percent of the total such cases in the United States.
At more than 200,000 new cases a year, Lyme had become one of the fastest spreading infectious diseases in the United States.
But how many bona fide Lyme disease patients fell outside that umbrella? Thousands? Hundreds of thousands? More?
With so many patients failing to see a rash and the blood tests so equivocal, it was impossible to say.
The line blurred still more because other ticks and infections contributed to the epidemic called ``Lyme.''
Babesia, a malarialike disease of fevers, headaches, sweats, and profound exhaustion, was almost as prevalent as Lyme disease itself in many areas.
Patients sick for years despite aggressive treatment for Lyme disease ``miraculously'' recovered once babesia was treated.
Ehrlichiosis and anaplasmosis, found in a quarter of Lyme ticks in Connecticut, New York, and many other places, including the South, could cause a draining, painful illness marked by fevers, headaches, confusion, and occasionally a rash.
Many an ``incurable'' Lyme patient had been found to have this second, lurking infection; such patients were treated with doxycycline and generally got well.
Added to the triad of Lyme-babesiosis-ehrlichiosis/anaplasmosis are other suspect pathogens inhabiting the same ticks:
among them, forms of the the rod-shaped bacterium bartonella and Mycoplasma fermentans, both sometimes invoked as a cause of neuropsychiatric symptoms and chronic fatigue.
Finally, a series of newly discovered spirochetes inhabiting a diversity of ticks have been shown to cause a ``Lyme-like'' disease, including the classic Lyme rash, in regions overlapping with and extending way beyond traditional Lyme zones.
The upshot: an illness that was a ringer for Lyme disease--except that sufferers didn't test positive because they weren't infected by the same spirochete as the one causing Lyme disease.
With so many cases of true Lyme disease falling short of the CDC definition, and with emerging infections, real and potential, at the periphery of the hostile debate, chaos reigned.
In all the Sturm und Drang, anyone who fell ill could get caught in the mania.
Sure, there were those diagnosed with Lyme disease who did not have it.
But the more contentious the fight became, the more doctors were targeted for diagnosing outside the CDC definition or treating beyond official guidelines, the more the balance shifted the other way.
All you had to do was live in our neighborhoods and meet our families, our children, to grasp how many had waited months and years for diagnoses that should have been rendered swiftly, missing the window of opportunity for early treatment and cure.
Adding insult to injury, so many of those who were missed, like our son Jason, had textbook-perfect cases of classic Lyme disease in proven Lyme zones.
They, too, were denied. First thousands, then hundreds of thousands, perhaps a million or more fell victim to the war over Lyme disease, getting so sick they were incurable, as the fight raged on.
I was a patient and a mother, but also a science journalist when my family was swept up in the Lyme war.
The winds of that war carried us far from normal reality to a twilight zone of double-talk, an inside-out world with layers of obfuscation, where disease was dismissed as delusion and nothing was as it seemed.
How had an affliction so cruel and insidious gripped the underbelly of the suburbs? How had so many patients of relative sophistication wound up victimized by a fight between doctors, ridiculed and marginalized as illness destroyed their lives?
What was the truth about Lyme disease? Would I discover the answers in Lyme's past or from present-day scientists toiling at the workbench, far from the maelstrom of the fight?
Because I was sick myself, my job as a journalist was complex.
Some of the experts I interviewed would have deemed me suspect had they known my status, so I strived to draw the line between my life and my job.
I attempted to do that which was almost impossible in Lyme: to lead a double life and inhabit two worlds.
In the first I was one of the chronic patients, in the midst of a suspect illness.
In the second I was a science journalist, discussing, with equanimity, the notion that patients like me were false.
``You cannot argue on the basis of anecdote and individual case history and speculation,'' Leonard Sigal, the New Jersey rheumatologist and Robert Wood Johnson Medical Center professor, insisted when I asked him about our ilk. ``This way lies madness. Where is the evidence?''
On the beat I looked for evidence, but within myself I felt what Sigal doubted taking hold. Without antibiotics I was sick but with them I was getting well.
As I fought Lyme in my life and struggled to restore my family's health, the questions and contradictions haunted me.
For the mother and patient, Lyme was an albatross, but for the science journalist, it was the story of a lifetime.
I couldn't walk away from it, not when it devastated my family, not when it inhabited my woods.
Copyright (C) 2008 by Pamela Weintraub, All Rights Reserved. *************************
CJ, thanks so much for finding this but ALL THE TIME it took to type it up in full text !! a real labor of love !!
when i started breaking this up, i thought it was SOMETHING ELSE OTHER than what you typed above ... then bingo; same article.
with my neuro lyme of 38 years, i do have troubles with sentences being broken up in the middle; so this way i could COMPREHEND it all.
she wrote an outstanding article here! *****************************************
unfortunately, her paragraphs are going to be long, SOLID BLOCK TEXT in it making it hard for neuro lymies to comprehend. my personal observation. betty
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
i did NOT type this; someone posted a link and i was looking at majority of links on author's site and saw this LONG, SOLID BLOCK TEXT which i couldn't read.
so copied it over here as it looked like it might be interesting; it was as i broke it up into full sentences.
cj, it was nothing personal against ALL YOUR HARD WORK AND TIME SPENT; i just can't read sentences broken up all over ... just can not comprehend things after 38.5 yrs. with chronic lyme!
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