posted
If you've never read Cure Unknown: Inside the Lyme Epidemic, published this past spring by St. Martin's Press, now is your chance to receive a week's work of excerpts online, for free.
Pamela Weintraub's book, Cure, Unknown, will be featured in the Dear Reader NonFiction Online Book Club the week of December 8, 2008. To sign up and read a portion of Pamela's book, and have the chance to discuss Cure, Unknown, with Pamela and other readers, go to
"A thoroughly researched and well-written account of the disease's controversial history." --Jane Brody, New York Times
"Pam Weintraub, veteran science writer, weaves personal narrative with hard-hitting investigative journalism to bring the underground epidemic of Lyme and other tick-borne diseases up from under the radar." -Rebecca Wells, author of Ya-Yas in Bloom and Divine Secrets of the Ya-Ya Sisterhood.
"In CURE UNKNOWN, Pamela Weintraub has produced both the definitive book about Lyme disease and associated disorders and a survivor's account of a grueling medical odyssey...This is an important and unforgettable book, destined to make a lasting contribution to the field of investigative health journalism." -Kaja Perina, editor in chief of Psychology Today
"I sometimes wonder if the only investigative writers who will possess the necessary temerity to remove the white gloves and tackle these putative experts to the ground will be those, like Weintraub and the late Randy Shilts, whose personal experience demands that they follow the rocky trail that leads to the truth." -Hillary Johnson, author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
"Millions suffering from symptoms of a mysterious disease need suffer confusion and loss no longer. If you want to know the real story behind Lyme disease and how to find your way back to health, read this book." -Mark Hyman, MD, author of the New York Times bestseller, UltraMetabolism.
"Pamela Weintraub's book is compelling, clear and troubling." -Patti Adcroft, editorial director of Discover magazine
"Science journalism at its best." --Amiram Katz, MD, Clinical Faculty, Neurology Department, Yale School of Medicine
kam
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Thanks Pam W.
[ 06. December 2008, 01:59 PM: Message edited by: kam ]
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lymednva
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This book is outstanding, imo. I have heard only positive things about it from those I know who have read it, and there are many on that list.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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"Cure Unknown" is just an amazing book. I cannot recommend it highly enough. Great job, Pam!
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Tracy9
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This is great, thank you so much Pam. I think all together we bought about 20 copies and gave them to all ours and the kids physicians, family and friends, newly diagnosed lymies, and lymie friends.
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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Keebler
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-
Yes,
Thank you, Pam, for all your hard work and dedication.
An interview with Fry Lab or Clongen Lab would be of much interest to the Lyme community. As a published journalist I would think you would have an "in".
Bea Seibert
P.S. Hubby was very disappointed when Under Our Skin was not interested in his story because he was not a "success story". Would be more than willing to be interviewed by the media.
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kam
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Copy and pasted this from email I received which I assume others did too.
I did sign up but I did not get the same email that I copied and pasted here.
Dear people, earlier today I sent you information on how to sign up for free excerpts from Pam Weintraub's new book, Cure Unknown, by going to
I've just received my first message from them (see below), and there is a chance to "share your thoughts on a book forum." I hope many of you will do this. You can unsubscribe at the end of the week if you don't want to receive more emails from the Book Club. Phyllis
This week's book: CURE UNKNOWN by Pamela Weintraub
FROM THE BOOK JACKET:
'Why are all these people so desperately sick?'
When Pamela Weintraub and her husband moved their family to idyllic, pastoral Chappaqua, New York, in the early 1990s, they thought they were doing the best thing for their two young sons: open space, fresh air, lawns and woods to play in.
When all four family members began to feel unwell, they ascribed their vague headaches, joint pains, and weariness to the normal wear and tear of busy suburban life. But as years passed, their symptoms mul- tiplied and intensified, burgeoning into gross signs of disease: swollen knees, limbs that buzzed as though wired to a power grid, mood swings, extreme fatigue, and disa- bling pain.
Eventually their oldest son, Jason, tested positive for Lyme disease, and Weintraub, a science journalist, thought she had found the answer for all of them--but her nightmare had just begun.
As with her quest for a diagnosis, almost everything about Lyme disease turned out to be controversial. From the mi- crobe causing the infection and the definition of the dis- ease, to the length and type of treatment and the kind of practitioner needed, Lyme is a hotbed of contention.
*New to the book club? Just click on the Missing Read link below for any emails you may have missed. Go to: http://www.emailbookclub.com/miss
(Today's book starts after the "Dear Reader" column.) ======================================
=====TODAY'S BOOK=====================
Today We Begin a New Book!
CURE UNKNOWN Inside The Lyme Epidemic by Pamela Weintraub (nonfiction)
Published by St. Martin's Press ISBN: 9780312378127 Copyright (c) 2008 by Pamela Weintraub
To reference this email: CURE (Part 1 of 5) ======================================
**This week's author, Pamela Weintraub, will be checking in at the forum. If you have any questions or comments about "Cure, Unknown," visit: http://supportlibrary.com/fm/guest.cfm?x=1157
INTRODUCTION 'Navigating by Lymelight'
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.
Final- ly, 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 fairy-tale 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 sug- gested diagnoses from migraine aura (the dizzying buzz of a mi- graine) to fifth disease (a swelling of the joints caused by infec- tion 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 North- ern 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, al- most 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 scien- tists 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, accu- rate blood test.
Rarely was their version of the disease seen out- side the Northeast, parts of California, and a swath of the Midwest.
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kam
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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 dif- ferent 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 concen- tration.
Brain infection could inflict a host of frank psychiatric problems from bipolar disorder and depression to panic and obses- sive-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 pro- foundly 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 be- came chronic, inexorably disseminating, and causing disabling con- ditions 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 circulat- ing around support groups, connecting some of the researchers with U.S. patents and federal or industry grants.
Other patients com- plained that university physicians consulted for managed care, mak- ing hundreds of dollars an hour dismissing Lyme diagnoses and ad- vising rejection of their claims.
The academics advanced their agen- das, the patients charged, by reporting the doctors who treated them to disciplinary boards.
As medical tribunals swept through the Lymelands, primary care physicians became ever more cautious about treating or even di- agnosing 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 antibi- otics and cured.
A young man from New Jersey was diagnosed with Lyme disease and treated with antibiotics for months without impact.
Fi- nally 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 um- brella?
Thousands? Hundreds of thousands? More?
With so many pa- tients 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 "mirac- ulously" recovered once 'Babesia' was treated.
A bacterial infection called ehrlichiosis, found in a quarter of Lyme ticks in Connecti- cut, New York, and many other places, including the South, could cause a draining, painful illness marked by fevers, headaches, con- fusion, 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 are other suspect pathogens inhabiting the same ticks: among them, forms of the rod-shaped bacterium 'Bartonella' and 'Mycoplasma fermentans,' both sometimes invoked as a cause of neuropsychiatric symptoms and chronic fatigue.
(continued on Wednesday)
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kam
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**This week's author, Pamela Weintraub, will be checking in at the forum.
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 dis- missed as delusion and nothing was as it seemed.
How had an afflic- tion so cruel and insidious gripped the underbelly of the suburbs?
How had so many patients of relative sophistication wound up vic- timized by a fight between doctors, ridiculed and marginalized as illness destroyed their lives?
What was the truth about Lyme dis- ease?
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 rheuma- tologist 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.
PROLOGUE 'Second Journey Out'
In my first encounter with Lyme I was swept from a healthy, exu- berant life to the distant, lonely shore of a controversial disease.
As the exhausted, symptomatic wife and mother of Lyme patients, one of them desperately sick, my struggle to beat back illness was ini- tially consuming.
Trapped in a new reality, I learned the complex idiom of illness, but all I really wanted was to find my way home.
My second journey through Lyme, ventured as a journalist, was far more strategic than the first.
Instead of an unwitting mother ne- gotiating a disputed diagnosis, I was a professional investigator, a science journalist--the job for which I had been trained and paid by the top science magazines in the country for twenty-five years.
My personal experience had been frightening, but as a longtime science journalist, I knew it was subjective. Subjective experience is powerful, but ultimately anecdotal.
Those trained in the scien- tific method, and those who report on it, understand that subjective experience falls far short of proof.
Proof in science means valida- tion by experiment.
Yet to be valid, the experiments themselves must be free of bias and must be of adequate scientific design.
I would have to look into all of this--carefully, and with expert input--to understand the research framing Lyme.
A journalist doesn't report only on studies, of course, but also on people--what they experience, say, and feel.
Laboratory science is rarely adequate to distill the fear and betrayal felt by patients when misunderstood.
Even when blessed with empathetic natures, biomedical scientists may not readily grasp a patient's journey through the desolate outback of a disease.
So my job was not just understanding the science, but also reporting back from the front, from the cul-de-sacs, split levels, and toy-strewn yards of the suburbs, where patients got sick and endured the illness itself.
The more people I interviewed, the more I realized that the distance between the scientific studies and the patients' lives was vast.
Peer-reviewed articles dismissing the Lyme patients' mental im- pairment as "mild," for instance, did not remotely capture the ex- perience of having a brain infection--the angst of falling behind in school or feeling perpetually foggy and confused.
A young woman forgot how to dial home on her cell phone and found herself strand- ed.
A boy did his math homework each night, but by morning his knowledge was a blur.
The clinical language of many studies made Lyme fatigue seem minimal, while patients crashed with an exhaustion so profound they could not sustain employment or care for their children and homes.
Memory loss calibrated in percentage points was presented as mere annoyance in the studies, but it translated, in patients' lives, to hours spent navigating local highways, lost in their own neighborhoods, or forgetting a frying pan on the stove and setting the house ablaze.
A programmer could no longer hold codes in his head--an office manager could not keep files straight.
kam
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or those of us who need more spacing in order to read. The previous writings are on lymement in general under Cure Unknown emails.
As I interviewed patients, I found they were often most disabled by the very problems mainstream studies had tossed out as too subjec- tive or vague to count as Lyme disease.
Headache, fatigue, and mental confusion were just too broad, too general, to be of rele- vance in actually diagnosing Lyme disease, the Infectious Diseases Society of America (IDSA) said in its 2006 guidelines.
These symp- toms were the same as those found in chronic fatigue and the pain syndrome, fibromyalgia, the Centers for Disease Control and Preven- tion added--how could you tell the diseases apart?
Unless a patient had measurable 'signs' of Lyme disease--the very ones used to define it in mainstream studies, like swollen knees, heart inflammation, and quantifiably damaged nerves--the mainstream experts wouldn't concede that the patient had the infection at all.
A contentious tug-of-war over what a Lyme patient looked like had spurred the battle from the start.
Because those doctors first describing the illness were trained in rheumatology and dermatology, the objective signs they recognized included swollen joints and the classic Lyme rash.
Later, neurologists joined the team, adding such specialty-specific signs as encephalitis or meningitis (swelling of the brain or its lining) and nerve damage.
As these signs of disease intensified, according to such experts, so did antibodies in the spinal fluid and blood.
The view was at loggerheads with the experience of the sickest of the patients, who lacked the sanctioned signs and failed the des- ignated tests.
Falling outside the mainstream construct they de- faulted to Lyme doctors, mostly ensconced in the suburbs.
In this alternate Lyme universe, 'symptoms' like confusion and fatigue, along with partially positive tests, were factored into the equa- tion, serving as justification for treatment with antibiotics, often for months on end.
Rejected as false by main-stream medicine, said to have fibromyalgia, chronic fatigue syndrome, or simply de- pression by the Centers for Disease Control and the National Insti- tutes of Health, the patients nonetheless sought treatment for the only thing they felt they'd been exposed to--Lyme disease.
After treatment with antibiotics, many eventually got well.
Did these people really have Lyme disease? Were they actually sick? Did they 'count?' Those were the questions swirling around the Lyme debate.
On one side of the equation are people like C. Ben Beard, Ph.D., chief of the Bacterial Diseases Branch of the Division of Vector- Borne Infectious Diseases of the CDC.
"These people are very sick, and we feel great compassion for them. Their lives have been de- stroyed," Beard says, "but based on their symptoms, we're just not convinced that they have Lyme disease."
Seeing things differently are physicians like Brian Fallon, a psy- chiatrist and director of the Lyme and Tick Borne Diseases Research Center at Columbia University.
"Patients without objective signs can still have symptoms of Lyme disease--cognitive problems, fatigue, joint pain, mood swings," he states.
"Because those symptoms weren't objectified early in the history of the disease by the specific spe- cialties first involved, many doctors still think they don't count," he says, but they do.
"There are other ways of defining illness and objectifying signs and symptoms of disease."
"If a doctor asks the patient whether he's tired and the patient re- sponds, simply, 'yes,' without any detail, there is nothing objec- tive to report," explains Harold Smith, a Pennsylvania physician who treats Lyme disease.
"But if the practitioner asks for objective in- formation, he can elicit it: Does sleep restore you?
Is your sleep associated with drenching night sweats that soak your hair and pa- jamas?
Does it take days to recover from raking a twenty-foot patch of your yard?
There are corresponding physical exam findings to go with such answers, including loss of muscle bulk, lowered body tem- peratures, slow heart rates, and abnormal hormone levels, among many others.
These impairments can be objectively measured and, with the right treatment, reversed."
Yet even patients with 'accepted signs' of Lyme disease, with the exception of the rash, don't qualify for treatment unless they have positive blood tests to back them up. And the fuzziness of the test- ing opens another can of worms.
One part of the problem stems from the lack of a direct test for Lyme disease.
There's simply no way to learn whether a patient is currently infected because as Lyme progresses, spirochetes leave the bloodstream and gravitate into solid tissue.
This obviously makes it exceedingly hard to culture living organisms through an ordinary blood test.
Instead of detecting infection in blood directly, there- fore, doctors test for Lyme's fingerprints--the antibodies formed in the spirochetes' wake.
Manufactured by our immune systems to try to fight the infection, Lyme anti-bodies are detected as literal bands on a test known as the Western blot.
Because these antibodies can linger even when infection is gone, they indicate exposure at some point in the past, but do not confirm that infection is active at the time.
Another part of the problem stems from the imperfect antibody pat- tern chosen by the CDC and other experts to indicate a so-called positive.
The pattern of Western blot bands endorsed by the CDC was determined by analyzing blood from a group of classic Lyme disease patients, those with swollen knees and measurably damaged brains and nerves.
The test, therefore, reinforced the mainstream presentation of a disease with measurable signs while excluding patients who had only subjective complaints like exhaustion and pain.
Yet the Western blot pattern endorsed by the CDC has been subject to furious debate ever since it was voted in amidst a firestorm of protest at a conference in Dearborn, Michigan, in 1994.
The pattern was determined by matching antibodies in human blood with a strain of 'Borrelia' from Europe, ignoring the full range of proteins ex- pressed by some 100 strains in the United States.
Of the many an- tibodies expressed, just ten were deemed diagnostic.
Chosen statis- tically, these included some so common they were found widely in the population while excluding others specific only to Lyme disease.
It's beyond dispute, moreover, that patients with confirmed Lyme infection can fail the test for a host of reasons: Antibodies can stick to proteins in human blood, preventing them from floating free to interact with the test.
And when patients with undiagnosed early Lyme have been treated with antibiotic for something else, like an ear infection, that treatment may be insufficient to cure the Lyme yet suppress the antibody response to it forevermore.
Even Immune- tics, the company that manufactures the blot, selling it to Quest and LabCorp, has found that alternate Western blot banding patterns turn up more real Lyme disease patients, and are more precise.
The bottom line is this: Patients with the Lyme disease 'signs' that mainstream experts say count--the swollen knees and frank meningitis --often pass the test with flying colors.
Patients suffering mostly from the so-called 'symptoms' of Lyme disease, the fatigue and con- fusion, often fail.
Like a castle on a hill surrounded by a moat, the mainstream definition of Lyme disease is a monument to itself: It houses within its impervious walls patients who fit its paradigm, leaving the rest clamoring for recognition at the gate.
The more I looked into it, the more I concluded that the very scaf- folding of Lyme science was flimsy as a house of cards.
Take the simple issue of how many Lyme disease patients get the famous rash.
As I read through years of literature in medical journals, including the early work, I found the estimate ranged from 40 to 90 percent.
The different statistics resulted, largely, from entrance require- ments for the studies themselves.
Where the rash was required for diagnosing Lyme in a given study, authors invariably concluded that most patients had the rash.
Where patients were diagnosed based on other factors, for instance, positive blood work, the percent with the rash dramatically fell.
The more I investigated, the more I started to feel that Lyme was not so much a disease as the definition of a disease--a complex calculus that compensated, clumsily, for all that was still unknown.
One could be infected with the Lyme spirochete, 'Borrelia burgdor- feri,' one could even be sick from the infection, but if one did not fit into this or that statistical group or have this or that presen- tation, one would not have "Lyme disease."
I thought the mainstream scientists would be offended when I broached my interpretation based on my read of the medical journals. But instead, to my utter shock, most of them agreed I had pegged it right.
(continued on Friday)
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Thanks for posting this here. I'll be posting the first chapter and other excerpts from the book on a new blog I am launching on Psychology Today --and in addition to the excerpts, I'll be covering the new stuff not in the book.
kam
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-------------------------------------------------------------------------------- From: [email protected] Reply-to: [email protected] To: [email protected] Sent: 12/11/2008 11:11:30 P.M. US Mountain Standard Tim Subj: NonFiction Book Club-Cure-5
CURE UNKNOWN Inside The Lyme Epidemic by Pamela Weintraub (nonfiction)
Published by St. Martin's Press ISBN: 9780312378127 Copyright (c) 2008 by Pamela Weintraub
To reference this email: CURE (Part 5 of 5) ======================================
**This week's author, Pamela Weintraub, will be checking in at the forum. If you have any questions or comments about "Cure, Unknown," visit: http://supportlibrary.com/fm/guest.cfm?x=1157
(continued from Thursday)
What was Lyme disease? That was a question I asked a lot.
There was the official disease definition used to train our pediatricians, our family physicians and internists.
But as I conducted my interviews, the scientists themselves told me the definition was limited and flawed.
Lyme or not Lyme? With so many possible infections, known and unknown, tick-borne and not tick-borne; with tests so equivocal; with each patient's genes and immune system so variable; with the possibility of side effects from the antibiotic treatments them- selves; and with diagnostic guidelines statistically determined and then artificially narrowed to eliminate all the vagaries, it seemed impossible to know.
It was the dispute over the disease definition--between those who sought to narrow it and those who sought to broaden it--that formed the first part of the Lyme war.
The conflict was distilled for me in a 'Philadelphia Inquirer' story about a patient named Amy, who had experienced chest pains, heart palpitations, dizziness, and vision problems.
First, she was diagnosed with Lyme disease and treated, and got well. But a few years hence she fell ill once more, this time reporting extreme weakness and intermittent jabbing muscular pain that waxed and waned.
Amy sought the help of five neurologists, four internists, and several infectious disease doctors, cardiol- ogists, and neuroophthalmologists, to no avail.
Finally, a rheuma- tologist sent her to Drexel University's Center for Behavioral Medicine and Mind/Body Studies, which focuses on symptoms that are "medically unexplained." After treatment there, the "Inquirer" re- ported, Amy felt much better, "not because her symptoms are gone, but because she has learned to cope."
The article sparked the ire of Massachusetts Lyme disease patient Alan Stone: "We in the Lyme patient community are only too familiar with having our symptoms explained away as stress, or hysteria, or otherwise 'in our head,'" he wrote.
"Until today's physicians can put their egos and arrogance aside and become comfortable with the idea that current medical technological capability is picayune com- pared to the virtually infinite variety of problems that nature can produce, long-suffering individuals like Amy will be the worse off for it."
The counterpunch to Stone came from Professor George E. Ehrlich, M.D., of the University of Pennsylvania and chairman of the Expert Advisory Panel on Chronic Degenerative Diseases for the World Health Organization (WHO).
"What is described may be many things," Ehrlich wrote of Amy, "but it's not Lyme disease." Alan Stone's letter, in particular, he added, "echoes the scientifically erroneous claims of some women who received silicone breast implants:
'I am the evi- dence.' We would all be better off without the patient advocacy agencies that have sprung up for chronic Lyme disease, fibromyalgia, chronic fatigue syndrome, and other fictitious illnesses..
.As Leon- ard Sigal, a real Lyme disease expert, states, 'The romanticism of practice by anecdote, speculation, and "my experience" is not a viable alternative to the rational practice of evidence-based medicine.'"
Skeptical of chronic Lyme disease as an explanation of ongoing symptoms, Sigal often diagnosed such patients as having fibromy- algia, a pain syndrome, instead.
But wasn't fibromyalgia the very diagnosis that Ehrlich now threw in the wastebasket as bogus, along with chronic Lyme?
While rheumatologists put stock in the fibro- myalgia diagnosis--and say it can be treated--many experts, for instance, Ehrlich, contend it is a sham.
A survey by the New York State Legislature found fibromyalgia to be the most commonly re- ported misdiagnosis experienced by patients before being success- fully treated for Lyme disease.
The exchange in the Philadelphia press caused such a ruckus that it reached the desk of Lyme disease patient Miguel Perez-Lizano across the country, in Battle Ground, Washington.
Perez-Lizano decided to alert Geneva-based Lee Jong-wook, Director-General of WHO. "A doctor claiming to be chairman of the Expert Advisory Panel on Chronic Degenerative Diseases for the World Health Organization has made biased and serious misrepresentations to the American public in a major newspaper," Perez-Lizano complained in his letter.
Specifi- cally, he pointed out, Ehrlich had asserted a WHO affiliation while disparaging as "fictitious" three diseases--chronic Lyme disease, chronic fatigue syndrome, and fibromyalgia--all recognized by the National Institutes of Health.
The affiliation, wrote Perez- Lizano, "gives the impression that WHO endorses these views."
About a month later, Perez-Lizano received a response in the mail. "We perfectly understand your concern," wrote Dr. Tikki Pang, WHO's Director of Research Policy and Cooperation.
Pang assured Perez- Lizano that WHO would be contacting Ehrlich "to ensure that in the future no reference is made to his relationship to WHO."
The debate over Amy and other persistently ill patients diagnosed with Lyme disease rages on: Are these patients sick because they are hypochondriacs, because their Lyme disease has triggered an immune reaction (or unexplained syndromes like fibromyalgia), or because the spirochete, 'B. burgdorferi,' lingers on?
This question gets to the heart of the second part of the fight over Lyme. Can infection persist after standard antibiotic treatment of a month or two?
Do some patients need longer courses of antibiotic treatment at higher doses to beat the illness and get well?
As I made the round of interviews, I found few mainstream research- ers who felt antibiotic treatment always eradicated infection in late-stage, long-untreated Lyme disease.
The question, rather, was this: Following standard treatment for late-stage Lyme disease, was persisting infection the rare exception or the frequent rule?
And if infection lingered, was it now so dormant or sequestered that anti- biotics, which target reachable, actively dividing organisms, could- n't help--or were the wrong antibiotics being used?
Beleaguered by the battle, the National Institutes of Health had, in 1998, launched three Lyme studies to resolve the debate over treat- ment:
In 2007, all the results were in, but most experts cited the studies selectively, depending on their points of view.
The first study, conducted by Lyme's hard-liners at Tufts, a group pushing an autoimmune theory of the disease, showed extra treatment did no good, none whatsoever.
A second study from the middle-of-the- roaders at Stony Brook suggested an advantage to the extra treat- ment, but hedged their finding with qualifications galore.
A third treatment study, out of Columbia, showed improvement in memory and fatigue--but after the treatment stopped, improvement in memory was not sustained.
Why the mixed response? Was ten weeks' treatment sufficient for the body but not the brain--or was the antibiotic, in the mode of some psychiatric drugs, altering neurotransmitters only as long as it was actively in use?
Each expert had an opinion, based on preconceived notions, but since the question hadn't been asked 'experimentally,' no one had 'evidence' for his or her stance--no one really 'knew.'
Swept into this vacuum of knowledge were the patients. I had person- ally met hundreds of individuals saddled with diagnoses of chronic fatigue syndrome, fibromyalgia, coronary artery disease, and multi- ple sclerosis who, when treated with antibiotics for Lyme disease for months on end, finally got well.
Some patients shared my person- al experience: On the medicine they were fine, but off it they felt unwell.
Scientists said such anecdotes were the problem with Lyme-- that testimonials weren't proof. But for me, the journalist on the beat, the anecdotes assumed more relevance once the disputed nature of the research was revealed.
Given all those shades of gray in Lyme disease, why was diagnosis (yea or nay) in our doctor's offices usually so absolute?
The dev- astating consequence of untreated Lyme was undeniable and uncontro- versial--mainstream studies themselves documented, again and yet again, that some 20 percent of those infected for more than a year never got well.
Given the dismal outcome, the whole-body pain, the confusion, and the fatigue, why weren't we giving our children, our soccer moms and soccer dads, a few weeks of early treatment when cure was almost certain, in other words, the benefit of the doubt?
Hardcover: Today's read ends on page 14.
Monday we begin the book DADDY NEEDS A DRINK by Robert Wilder.
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Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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Pam,
I get an error when trying to subscribe.
I am assuming I need to wait until the first post before being able to subscribe.
So, please let us know when you have added your first blog.
Thanks, Katherine
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Thank you Pam for making this available. I have already read the book and bought an additional copy for family members. It is nice to have it available online for those who cannot afford to purchase it.
Thank you so much for all you have done for us.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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shazdancer
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Member # 1436
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The book-of-the-week club has now moved on to a new book, but you can still the posts by going to
and clicking on "Non-Fiction Club" under the current offering. The forum stays on the website for quite some time.
Pam, many thanks for dropping by the forum. I hope you'll go back and answer the last question and leave any final comments about the future of Lyme. As I said, your remarks will still be there for others to read.
Best,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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