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SOUND OFF SUNDAY: Chicago Tribune Medical Writers – Part of the Flat Earth Society?

20 Dec

On December 8,  the Chicago Tribune ran a story on Lyme disease that was so poorly researched and reported, and well just plain one-sided,  that Lyme patients and advocacy groups were calling for retractions, apologies and the firing of the two reporters. It also ran in the
 Los Angeles Times, as both newpapers are owned by the Tribune Company.

 Trib reporters Patricia Callahan and Trine Tsouderos cherry-picked their way through science in their article entitled “Chronic Lyme Disease: a dubious diagnosis.” They have a habit of going after disease treatments at odds with mainstream medicine, as they wrote a similar article on autism last year as well as many others targeting anything outside of the mainstream box.

Red flag No. 1 is that Tsouderos only recently began writing on medicine and science. Prior to that she was the Trib’s………………wait for it ………………………….. food writer.  On her official Chicago Tribune bio she writes: “I have covered Hurricane Fran, Tennessee Walking Horses, Oprah, Jennifer Lopez’s (now defunct) relationship with Ben Affleck, cupcakes, freak bikers and the honeymoon suite at the Ritz.” 

The way in which Callahan and Tsouderos wrote is more appropriate for a blog. It surely wasn’t researched medical journalism. It was pseudo-journalism so on-sided that they obviously made up their minds before beginning their “investigation.” Whereas true medical journalist attribute facts to scientists, Callahan and Tsouderos simply used their own voices to lambast and ridicule physicians treating chronic Lyme disease and their patients.  

The reporting was so appalling that Callahan and Tsouderos were taken to task by other medical journalists on Knight Science Journalism Tracker, a website for peer review of science journalism.  The topic is brilliantly debated on this website.

Callahan and Tsouderos basically call many fine physicians charlatans. One in particular, Bernard Raxlen, MD, a psychiatrist in New York City, has saved the life of two people I know who had been thrown to the curb by other physicians. One Orange Park, Florida, mother said an advanced case of Lyme made her son so psychotic, that it wasn’t until the fifth month of aggressive intravenous antibiotics perscribed by Dr. Raxlen that they once again were able to see the son they once knew. 

Another patient was the only person, from what I can tell, who had her letter to the editor response printed in the Chicago Tribune. The initial publication of her letter online deleted the very name of the doctor who she attributed to saving her life – the one much maligned Dr. Raxlen in the article. It took many phone calls and emails to get Dr. Raxlen’s name put back in her letter.

The reporters also mocked those physicians who prescribed more than a few weeks of antibiotics to their patients as continuing to treat them for financial gain when there was no scientific evidence that prolonged antibiotic treatment helped. They held up medical establishments such as Johns Hopkins as evidence.

At a recent presentation of the Lyme disease documentary Under Our Skin at the University of North Florida, however, David Chinoy, MD, spoke about his year-long antibiotic treatment he received while being treated for Lyme at Johns Hopkins. Dr. Chinoy was a well-respected cardiologist in Jacksonville before getting bit by a tick right here in Jacksonville that sent him into a Lyme disease tailspin and forced retirement. Dr. Chinoy said he “was in bed for a year and in my easy chair for another year” and in the third year he started coming back to life.

Most Lyme disease patients have been all but abandoned by main stream medicine. If one has their Lyme disease diagnosed immediately upon acquiring it, a few weeks of antibiotics usually takes care of the offending bacteria. But those who have carried it with them longer, a few weeks of antibiotics may as well be a few weeks of aspirin. The complexity of Lyme disease is mind-boggling. Even infectious disease physicians will tell you that. And in most cases, patients don’t simply have Lyme disease; they have a host of other bacteria as well that were carried by the tick or other vector that bit them.

Here’s the rub too – doctors treating Lyme disease with long-term antibiotics are universally accused of putting the population at risk for anti-resistant bacteria. But nothing is ever said about dermatologists who treat acne with more than a year of antibiotics. So Lyme disease patients are to be deprived of what could cure them?

Dr. Raxlen refers to those like Callahan and Tsouderos as “the flat Earth society.” They know what they know and refuse to look at the facts otherwise.  They can be likened to those medical colleagues who ridiculed Drs. Barry Marshall and Robin Warren who received a Nobel Prize for their discovery that the bacteria h. Pylori causes peptic ulcers. For more than 100 years physicians believed they were caused by things such as stress and spicy foods. 

You’ll often read that Allen Steere, MD, is credited with “discovering” Lyme disease. Actually, it was a housewife in Lyme, Connecticut, Polly Murray, who discovered that something was making her family and many others in Lyme seriously ill.  She was relentless in her quest to pinpoint the offender, and she was also written off as a wacko housewife by the Public Health Department as someone with nothing better to do than cause trouble. She was a smart cookie though and did her homework. After more than a year, she took her findings to Allen Steere, MD, at Yale, who listened. You can read her story in her book “The Widening Circle: A Lyme Disease Pioneer Tells Her Story.”  (Woe to those who underestimate the determination of a mother to find the cause of her child’s illness.)

The bottom line on the Chicago Tribune story is that it should have stopped dead in its tracks on the editor’s desk.  As well, there hasn’t been one word from the paper addressing the story that caused an  influx of angry letters from around the nation. ONE letter to the editor was printed from a patient. None from the advocacy groups or other medical journalists. These were all posted online  in various places as “unpublished letters to the editors of the Chicago Tribune.”

Callahan and Tsouderos should not be allowed to continue as medical writers
for the newspaper. 

 

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Jesse Ventura’s Gonzo Journalism

18 Oct

Jesse Ventura has been a Navy Seal with Top Secret clearance, a professional wrestler, a bodyguard for the Rolling Stones and the 38th governor of Minnesota.  Now he’s begun his second year as host of “Conspiracy Theory,” a show on TruTV (very high on the dial) where he “will hunt down answers, plunging viewers into a world of secret meetings, midnight surveillance, shifty characters and dark forces.”  According to TruTV, the first episode drew 1.6 million viewers, a record for a new series on the network.

The second season premiered Friday night with an investigation into Plum Island, a tiny island off the tip of Long Island, New York that houses a federal biological animal research testing facility that is believed by many to be the main birthplace in the U.S. of Lyme Disease and West Nile Virus.  Much of what Ventura “uncovers” has been known for ages and especially common knowledge among many Lyme Disease victims.  While the show is very informative in a zealous and dramatic manner, the entire subject of Plum Island is so extraordinarily complex and byzantine that Ventura could only hit the highlights.

Ventura focuses on Erich Traub, a Nazi scientist of the highest levels recruited by the U.S. government to run the Plum Island facility and its animal experiments. Before coming to America, Traub was ordered to research germ warfare viruses for the Soviets.  In 1949 he managed a daring escape to Berlin and ultimately came to the United States. Traub was part of  the top-secret Project Paperclip, a program near the end of World War II where the U.S. and the Soviet Union raced to recruit German scientists for postwar purposes. They were supposed to be only small bit players in Nazi activities, however, the U.S. military went overboard and recruited more than 2,000 Nazi scientists, many with dark Nazi track records. They were given full U.S. citizenship and never brought to trial.

The history of Plum Island is so rife with clandestine operations that one brief show can only begin to tell the story.  It was initially established by the Army to research ways of destroying Soviet farm animals and worked with bacteria and viruses that can be passed from animals to humans. There is overwhelming evidence that Traub conducted experiments of injecting diseases in ticks for release into the environment.  Through the years there has also been an enormous amount of focus on security breaches, especially during Hurricane Bob in 1991.  In his show, Ventura talks with a man who witnessed workers at one time placing duct tape over door seals to keep potential viruses and bacteria from escaping.

Ventura also makes a surprise visit to New York Congressman Tim Bishop whose district contains Plum Island. He says he believes what he’s been told that no experiments take place there where diseases can be transferred to humans. Then Ventura makes another surprise visit, this one to Dr. Roger Breeze who ran the Plum Island lab in the ’90s. Now that it has been taken over  by Homeland Security, he’s one of the head honchos overseeing it. He tells Ventura he knows nothing about Erich Traub which is dumfouding given that he’s considered the godfather of Plum Island. But he also contradicted Congressman Bishop and said that they do in fact conduct experiments that can affect humans.

The most amazing admission, however, was that he says any workers who go inside the lab where they conduct Foot- and- Mouth disease testing and experiments leave with the virus in the back of their throats and that is why there has been a long-standing policy that they cannot own any animals it might affect or go to places such as the zoo or circus.

Dr.  Breeze also played dumb about the “Montauk Monster,” a bizarre creature that washed ashore near Plum Island that many believe to be a product of the lab. Ventura investigates a subsequent creature that also washed ashore that did not seem to garner national attention like the first  one.

The truly scary development, however, is the plan to relocate the lab to Manhattan, Kansas in the middle of tornado alley.  Couldn’t  one  bad tornado put all those animal diseases airborne in the middle of livestock country?

To learn more about Plum Island, I highly recommend Michael C. Carroll’s book Lab 257: The Disturbing Story of the Government’s Secret Plum Island Germ Laboratory.

You can also view “Conspiracy Theory with Jesse Ventura” online here with divided in three parts. One   Two   Three

Mother Warriors in the Lyme Disease War Zone: Part III

13 Oct

Pamela Weintraub has done what no other Lyme Disease sufferer has been able to do – make her voice heard and respected by the medical community on a scientific level.  She is our hero and our biographer; her story is our story.

Pamela Weintraub is a nationally acclaimed science writer and editor, and her recently published book CURE UNKNOWN – Inside the Lyme  Epidemic won the  American Medical Writer’s Association prestigious award as the best book of 2009. It lives up to its billing as a “groundbreaking investigation into the medical history, patient experience and brutal political war over Lyme Disease.”  As well as a science researcher and writer, she’s a Mother Warrior whose entire family contracted Lyme Disease. She’s worked tirelessly since to bring to light the scientific and political ramifications of a disease that is being swept under the rug along with its victims.

In my first issue of MD News Jacksonville magazine, Weintraub,  shared an insightful essay on how the Infectious Disease Society of America (IDSA) was politically skewing the diagnosis and treatment guidelines of the most prevalent vector born disease in the U.S. – Lyme Disease. 

Congress recently asked for a state-of-the-science evaluation of Lyme disease by the Institute of Medicine (IOM) that  resulted in a workshop that Lyme advocacy groups throughout the nation are boycotting. Their stance is that what’s being offered by the Institute of Medicine is a one-sided, biased regurgitation of the Infectious Diseases Society of America’s point of view coupled with the IOM refusing to allow speakers of comparable scientific weight to counter the IDSA viewpoint.

Yesterday Pamela Weintraub put a human face on Lyme Disease with her talk to the Institute of Medicine’s panel. According to the California Lyme Disease Association’s website, “It was a stirring speech that brought a standing ovation from the audience, and spirited discussion from panelists.”

Below is the text of her remarks. I urge you to read through to the end as Lyme is not just a disease of the Northeast. A well-respected Jacksonville cardiologist  told me he without dispute acquired Lyme Disease at Guana River State Park and it “put him in bed for a year, in an easy chair for a year, and another year of trying to get himself back to normal.”

The Human Face of Tick Borne Diseases
by Pamela Weintraub

Lyme disease entered my life in 1993, when my husband Mark, our two sons, and I moved to Westchester County, New York. At the time I was, as I am now, a science journalist specializing in biomedicine for the national consumer press. Our lovely property in the hamlet of Chappaqua abutted a spruce forest, and we reveled in our new contact with nature—there were deer, squirrels, raccoons, mice and all sorts of other animals and birds. From that point on, we all became increasingly sick.

First there were headaches, joint pains, and an inexplicable weariness. With time, the symptoms intensified and multiplied: My knees became so painful that I had to sit down to descend the stairs in my house on my bottom, one step at a time. I developed dysphagia: I had so much trouble swallowing that I literally choked on my food. I developed peripheral radioneuropathy: My arms and legs buzzed, gently at first, and then increasingly painfully until it felt like electricity was running through me. The headaches became relentless. My eyes were painfully sensitive to light. I spent hours each day in a darkened room, in bed.

Meanwhile my husband, Mark, an avid tennis player, began stumbling and bumping into walls. He was an award-winning journalist, but he began struggling with memory and groping for words. Increasingly cognitively impaired, he was forced to leave his job 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 that he could not get to class. In the end he was sleeping 15 hours a day. Hardest hit was Jason, our oldest, who suffered profound fatigue and shooting pains starting at age nine, late in the summer of ‘93. The doctors called these ―growing pains‖ normal, and my son, though often fatigued, tried to keep going. Then in 1998, he developed a huge erythema migrans rash over his torso. I called the doctor’s office and was told not to bring him in—since it wasn’t in the shape of a bull’s eye, it wasn’t Lyme, they said. After that rash, Jason became increasingly ill, and never seemed to get well. By 2000, at age 16, he was functionally disabled. He couldn‘t think, walk, or tolerate sound and light. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom, drifting in a mental fog 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 to parvovirus. Each diagnosis elicited a treatment, but none of them worked. “What about Lyme disease?” I asked from time to time. “There are too many symptoms here and he‘s way too sick for Lyme disease,” responded the pediatrician, who told us he felt it was all psychological. Thankfully the psychiatrist we ultimately consulted –an academic scientist who literally wrote the book on child and adolescent psychiatry—disagreed. At his insistence, the pediatrician drew fourteen vials of blood, testing for hormone imbalance, mineral deficiency, anemia, and a host of infections, including one tick-borne disease — Lyme. A week later he called to tell us that just one test, a Lyme Western blot from Labcorp, had come back positive, with eight of ten bands highly lit.

Finally the head of infectious disease at Northern Westchester Hospital weighed in: In retrospect, he said, Jason had probably been misdiagnosed for years. I will never forget the way he phrased his grudging diagnosis: “I‘ll give it to you,” he said, as if we had earned some coveted prize that others, whose confusing arrays of multi-system ailments could be explained in some other way, would never get. Unaware of the political turmoil over tick-borne disease, I didn‘t yet understand how rare it was for a doctor like him to diagnose late-stage Lyme disease in New York State. Jason was treated with eight weeks of intravenous Rocephin, but when he didn‘t get well, the Lyme diagnosis was revoked, and that doctor, too, consigned him back to psychiatry.

The situation would stretch any one’s credulity: Our formerly straight-A, basketball-playing son, after contracting Lyme disease, being misdiagnosed for years, and finally receiving antibiotic therapy for two months, had now developed a bizarre, unrelated psychiatric disorder whose symptoms were, coincidentally, exactly the same as those of Lyme disease. Perhaps it is possible to believe this kind of explanation when served up by experts talking about other people‘s children; but it is the rare parent who would accept this decree for a child of his or her own –especially when your psychiatrist has never seen a psychiatric disease like this in his life. My husband Mark and I, by now both quite ill now ourselves, faced a choice: Accept this unlikely story and give up on our son‘s future, or find one of the Lyme doctors said to treat more aggressively, in opposition to the mainstream views we had followed for years to the current, tragic state of affairs.

So in the summer of 2000 we bundled our boy into the car and headed up to New Haven, and the practice of the embattled pediatrician, Charles Ray Jones. Dr. Jones examined and tested Jason and told us he was so sick because he had contracted not only Lyme disease, but two common co-infections that ticks carry —babesiosis and anaplasmosis. Epidemiologically, it seemed like a reasonable call, given the many vacations we’d taken on Martha‘s Vineyard and Cape Cod, where babesia was rife. Dr. Jones treated Jason with standard doses of doxycycline for anaplasma and Lyme disease, and with mepron and zithromax for babesia. Two weeks later –after years of freefall—our son got out of the bathtub and began throwing a basketball around the family room. Two years later he was playing varsity basketball for his high school, and today he is a graduate of Brown University and earning his MFA in film.

Although my book, Cure Unknown, is in part a memoir, its focus is really what I found after I had dealt with my family’s health problems sufficiently for me to sit back and peer through the eyes of the investigative and skeptical science journalist I had been for decades before Lyme swept us away. For almost eight years, from 2000 to 2008, I interviewed patients, the Lyme doctors treating the sickest of them, and dozens of academic scientists, including most of those at the forefront of research and many speaking at this forum. My journey as a patient was contextualized by all this research, and often confirmed. For instance, I met large numbers of patients with classic, incontrovertible presentations of Lyme disease who, like Jason, would probably have been cured with early treatment, but who were instead diagnosed late, often very late, in the game. Routinely, patients that I interviewed reported going to their primary care doctors with the tick in hand and being told to throw the tick away and return only if symptoms emerged. Many patients told me of doctors who insisted a Lyme rash had to look like a literal bull‘s eye. Patients reported going to doctors with a tick bite, early flu-like symptoms, and sometimes even an erythema migrans rash, and being told to wait for a positive test before they could be treated. When patients tested positive, a significant percent were told they could still not be treated for Lyme disease until they developed gross objective disease signs like swollen knees or inflamed nerves—in other words, until they had advanced into the late stage of disease, when treatment was more likely to fail. Other patients with known exposure and signs and symptoms of Lyme disease failed to test CDC positive on their Western blots.

 Take me: I had a positive ELISA and four CDC positive bands plus two additional Borrelia burgdorferi proteins, outer surface proteins A and B. Six bands in all, and the lab was Stony Brook. Still, I had to step outside the bounds of the medical mainstream to find a practitioner who recognized this alternate band pattern as Lyme disease. Patients in the South could have the trademark rash and objective disease signs –but they would be told there was no Lyme or clinically comparable Lyme-like disease in their state, and be turned away. Such patients, in aggregate, constitute what I think of as the chronic Lyme population: They had bona fide Lyme disease that would have been cured with early treatment. Instead of getting that treatment, they were diagnosed months or years too late. They were eventually treated for late stage Lyme disease in accordance with the Guidelines of the Infectious Diseases Society of America. And they failed the treatment.

Completing the community of patients covered by the meeting today are the coinfected—those with babesiosis, anaplasmosis, ehrlichiosis, or some other tick-borne infection. If you look at tick surveys from around the United States these diseases in ticks are widely reported, and they are well-known as human diseases, yet primary care physicians almost never consider or test for them, if indeed the possibility of Lyme itself is seriously considered. I think a real effort needs to be made to determine the whole suite of possible diseases patients with Lyme may be carrying—because having an unknowable, undiagnosable illness can be very much part of the patient experience on the ground. Patients like Jason can be very sick, and their disease can be refractory specifically because it isn‘t just Lyme disease. As a group, these patients can be very ill.

Mark Klempner of Boston University reports his cohort of chronic Lyme patients was as impaired as those with congestive heart failure or osteoarthritis and more impaired than those with type 2 diabetes or a recent myocardial infarction. Brian Fallon of Columbia reports pain equivalent to post-surgical pain and fatigue as severe as that seen in M.S. Patients can suffer stabbing, boring, shooting pains in their arms and legs, or impaired vision and hearing from damaged nerves. They can suffer heart damage. Even more devastating, especially to students and knowledge workers, are the cognitive and memory deficits. Testing hundreds of such patients, New York University neuropsychologist Leo Shea found specific deficits in concentration, short-term memory and processing speed. Fallon has objectified these impairments by tracing them to blood flow and metabolism deficits in the brain. Some scientists have called the impact of these impairments mild, but that does not remotely capture the experience for the patient herself —the angst of falling behind in school or feeling perpetually foggy and confused. Many patients report getting lost while driving around their own neighborhoods. Many patients have told me they could no longer remember enough to perform the detailed tasks of their jobs.

For me, the fatigue was the worst of it –during the years I had Lyme disease, I collapsed in a heap every afternoon while my children were in school, my exhaustion overwhelming and profound. Sure, there are studies that minimize these types of “subjective” symptoms as being almost irrelevant. But just because you can see evidence on the outside –for instance the rash or joint swelling– doesn’t mean the devastation on the inside can’t also be measured in a reliable fashion or shouldn’t be given primary weight as perhaps the most important and clinically relevant outcome of all. Unresolved Lyme and tick-borne disease can be a nightmare for parents, who bear the heartache of watching their children suffer along with the sense of helplessness and despair that comes from a medical community all too quick to dismiss their complaints: Take it from me. My two boys are better now, but both lost their childhood to Lyme and tick-borne disease. After a child has been allowed to slip through the cracks of early diagnosis and treatment, the stage is set for isolation and alienation as the child drops from clubs, sports teams, friendships and often, even school. In the wake of the child‘s decline, schools often push psychiatric interpretations, foisting inappropriate labels and discipline or help. When the child doesn‘t respond to wrong-headed strategies, the schools may accuse parents of poor skills in parenting or even Munchausen by proxy, a diagnosis that has been called into disrepute by top experts in psychology and psychiatry, but still manages to rear its head as an accusation where mothers and Lyme disease are concerned.

What a chasm I found between the patients I interviewed and some physicians at teaching hospitals in the northeast. One well-known academic told me that virtually all Lyme patients are diagnosed early these days, and for the rare one who slips through the cracks to late stage disease, treatment response is guaranteed. “If the patient doesn‘t respond, he never had Lyme disease,” the doctor said. When, during grand rounds or training sessions, such doctors suggest the patients are bogus –malingerers too wimpy to handle stress, middle-aged suburban women with somatoform disorder, or hypochondriacs in search of the disease du jour– they have poisoned the chance of timely diagnosis by predisposing front line primary care physicians to seek psychiatric explanations first. With early treatment off the table, such patients wander from family doctor to clinic to teaching hospital, from one specialist to the next –and then off the grid.

 My family found our way to doctors who diagnosed infections clinically and treated empirically, all the while using modalities for symptomatic relief of chronic disease: These were the best of the Lyme doctors. They treated our babesiosis and addressed our Lyme relapses and, over the course of years, brought us back to health. We found them compassionate and responsible, but being the patient of such a doctor is stressful: He or she may be under investigation, and rarely takes insurance for fear of being profiled as an outlier and then delisted and further stigmatized, making the financial burden on the patient intense. Other patients default to outright quackery: dangerous chemicals and mixtures; lethal levels of heat applied to internal tissues; risky doses of salt. Today, some patients are spending life savings on trips to India for a black box therapy said to be based on stem cells. A Diaspora of the desperate and broke, many of these patients have come to the end of the line.

It is hard enough to be sick—but to be so sick for so long and also be a suspect—to have your physical pain, your integrity, your very sanity called into question as you travel the medical landscape begging for help, well, let me tell you, that is a crushing course of events. In most other diseases, the sick person can focus on being a patient—on following through with treatment to try to get well. No one suggests the cancer patient is factitious, or the heart patient a sociopath. But in Lyme and tick-borne disease, the brutality of such rejection on top of real physical illness has traumatized the patient community writ large. No wonder patients are in such turmoil.

The three largest patient advocacy organizations have staged a boycott of this forum because they say it is biased against them. To quote their press release, they “remain skeptical that the process will lead to a true understanding of the patients’ needs.” The history of the patient experience has robbed them of faith that anyone in government will understand their pain or address their plight.

It has been almost 35 years since Polly Murray reported the strange set of symptoms in her town of Lyme to the Connecticut Department of Health. Back in 1976, Murray noted the loneliness of her journey, but decades later, new patients travel the same lonely path as if Murray had never paved the way. Too many of us still spend years seeking help for what was, in the beginning, incontrovertible and classic Lyme disease, only to reap the whirlwind of late diagnosis and failed treatment—even in the most endemic areas of the United States.

In interviews with hundreds of these patients, I found that relapsing-remitting illness was an overriding hallmark of the chronic disease. Use of antibiotics was overwhelmingly the strategy patients preferred for fighting back, though which drug might work for which person was highly variable, suggesting a scenario that is outrageously complex. I myself had a relapsing-remitting illness. I was infected for some seven years before diagnosis. I was treated and seemed to get better, but every time I stopped antibiotic treatment I relapsed like clockwork over the course of two to three months. I went through draining cycles of relapse followed by retreatment for four years before the recovery was sustained. Can we really dismiss this common experience as coincidence or a psychiatric disease? I‘ve heard it said that all Lyme patients want are more antibiotics, but that isn’t true. Patients just want to get well, and any therapy that cures them would be embraced. No reasonable person would ever argue that the answer sought by future science should be endless antibiotic treatment for years on end—even if infection remains chronic at low level, as the evidence suggests. To help these patients, medicine must acknowledge their pain. And science must deal with the complexity.

 Anyone who follows bioscience knows what’s happening out in Seattle, where the medical pioneer, Dr. Leroy Hood, is building data-driven P4 medicine –the personalized medicine of the future that any patient group this varied needs. As Dr. Ben Luft suggests, only a systems biology approach can target the full spectrum of infections, strains, and immune cascades for every patient involved. We are long past the point where we can keep telling patients that they themselves are deluded because the science is state-of-the-art when, clearly, their diagnosis and treatment come from the century past. Yet hearing this bald assertion is part of the patient experience, too. Of course it gets them upset. We’ve all gotten stuck. We have academic scientists embroiled in a broad, dumbed-down fight with patients over the issue of chronicity while a revolution in bioscience has reframed the questions we need to ask.

I’ll end with a paraphrase of Tolstoy: Every early stage Lyme patient is pretty much the same, but each chronic patient takes a singular journey of one. For many years, this discomfiting fact has undermined the patient narrative. But with the advent of proteomics, genomics, and other 21st century tools, with greater powers of vision, the story told by bioscience and the story told by patients might finally converge.

Part II: Mother Warriors in the Lyme Disease War Zone

8 Sep

Daryl Hall, of the famous singing duo Hall and Oates,  likened Lyme Disease to “a  roving gang of street germs.” Hall contracted the Lyme bacteria and several co-infections from the bite of a deer tick, as most people do. 

Daryl Hall

The disease hit him hard and he found himself having to cancel concert dates. He also found himself in the unlikely position of becoming a national voice for Lyme Disease as he discovered the byzantine world of trying to get treated.  

Lyme Disease is now one of the most politically charged issues in the medical community. The debate crescendoed to such a point that in 2008  Attorney General Richard Blumenthal of Connecticut, where the Infectious Disease Society of America is headquartered, ordered an anti-trust investigation that found serious flaws in the group’s process of writing the Diagnostic and Treatment Guidelines in 2006. It also found  unreported financial conflicts of interest.  

The guidelines have a far-reaching impact in the medical community as many physicians use them to determine treatment.  Insurance companies also use them to deny care. Over and over. Which is downright scary considering, next to AIDS, Lyme Disease is the fastest growing infectious disease in the United States and the No.1 vector borne disease.  

Lyme Disease in the United States was first discovered in Old Lyme, Connecticut by a Mother Warrior: Polly Murray.  Without her persistence, doctors may have never identified what was making so many in her town sick. Vilified initially as ‘a doctor chaser,’ in 1971 Murray set out on path of information gathering to explain why her family, as well an increasing numbers of children in Old Lyme, were coming down with identical mysterious symptoms. When she approached the health department, her doctors told her she was simply stirring up trouble. Doctors initially deemed it all in her head when they couldn’t identify the cause.  She continued to dig and survey neighbors without interest from the medical community. As the circle of victims widened, she got media attention and her path finally led her to a Allen C. Steere, MD, a physician at Yale.  Steere listened.  

In her book  The  Widening Circle:  A Lyme Disease Pioneer Tells Her Story, Murray wrote: “They were spirited, like archaeologists who’d unearthed an intriguing artifact, some bit of pottery that promises even greater riches will surface with just a few more turns of the spade. I certainly shared their enthusiasm. On the other hand, I’d been “in the field” for a while, and I knew it wasn’t going to be easy to figure everything out so fast. Whatever this illness was, it was complicated, in that it involved so many systems of the body, and my instincts told me it was going to elude definition for some time to come.”     

Ultimately Steere and gang identified the causative agent of the disease as the spirochete  Borrelia burgdorferiOne would assume  nearly 40 years later that technological advances would have found the perfect diagnostic test as well as a magic bullet to kill the bacteria. In actuality, we’ve hardly progressed. What has happened in the ensuing years is mind-boggling.  

Dedicated physicians in the Northeast found themselves treating Lyme Disease patients full-time as the reports of their care was shared with others who were ailing. They never set out to become Lyme physicians, but the patients kept coming in droves. They were learning together what treatments worked by trial and error. These are the doctors who would become known as “Lyme literate ” or LLMDs. Patients were desperate for relief.  The standard blood test to identify the Lyme bacteria isn’t anymore sophisticated now than it was then.  It’s wrong at least 50% of the time and the CDC says it should not be used for diagnosis, but rather clinical observations. But doctors continue to use it.  

As physicians continued their dedication to these patients, they would be astounded and terrified of what came next. Slowly, one by one, physicians with full-time Lyme Disease practices were being investigated by medical boards and having their licenses pulled.  And patients were as terrified as their doctors.  What would happen to these patients if they had to go back to doctors unfamiliar with Lyme who told them what they really needed was a shrink? The insults patients endured seeking treatment was humiliating.  

There soon grew an underground communication buzz between patients to identify physicians who treated Lyme. To this day, patients and Lyme Disease advocacy groups do not post lists of known Lyme physicians.  On message boards, physicians are referred to by initial only, such as “Dr. C.”  Patients are very protective of the doctors for fear they will get caught up in the witch hunt. And many have.  

I didn’t know all this when my daughter’s diagnosing physician told me she couldn’t treat her. I was such a Lyme neophyte. She was a Side B physician and knew treating a Lyme patient could draw unwanted attention to herself.  I asked who she would recommend, and that’s when I learned that LLMDs in the south were few and far between, most especially pediatric LLMDs.  And those up north had waiting lists of a year. One year? There were plenty of fine pediatric infectious disease physicians in town, but they were likely to use the inaccurate blood tests to dismiss her.    

The doctor sent me home to research Lyme Disease and with some information on having my daughter tested. Since I had never heard of Lyme Disease, I began by looking at the symptoms and writing hers that matched on the back of an envelope. When the envelope was full, I simply stopped. She had 95% of the symptoms listed. Many of them started subtly when she was around four-years-old and escalated or added symptoms as the years progressed.

Very Pronounced Bullseye Rash

To my knowledge, my daughter never had the telling bullseye rash that 50% of patients get. That’s proof positive one has Lyme, even when blood tests still show up negative.     

 

My daughter was tested three ways:  

1)   The standard Lab Corp blood test called the Elisa, incorrect more than 60% of the time.

2)   A test by IGeneX  in California  performs the Western Blot that is 96% specific only if the person is making antibodies. If not, they use the PCR to check for it in DNA.

3)   The Q-RIBb  (Quantitative Rapid identification of borrelia burgdorferi ) test by Bowen labs in Florida where they bacteria is flourescent stained and observed through a Darkfield microscope. They actually photograph the Lyme spirochete in the blood samples.  (Called a spriochete because of its corkscrew-like shape, similar to the syphyllis bacteria.)

#1    Negative
#2   Probably
#3   Definitely  

I wasn’t clear why we were doing all these blood tests if the diagnosis was supposed to be a clinical one anyway. Even the CDC said that was the way to go. What  I learned, however, is that blood tests are done to appease insurance companies and to use it as back up documentation in case the tests come back positive.  

The doctor assured me my daughter had Lyme, and surprised me as well by announcing that she would take on my daughter as a patient after all.
I was over joyed as here I had a physician a mile from my house who personally understood Lyme and who could treat my daughter immediately. She wasn’t an infectious disease physician, but she was a trained pediatric hemotologist who decided to change the focus of her practice chronic diseases after contracting Lyme herself.  

There was one caveat:  she told me I needed to understand that she would “never ever go to court to testify for me.”  That was it? No big deal. Who was saying anything about needing to go to court anyway?  

Oh, how that one little statement would come back to haunt this Mother Warrior as our Lyme journey continued, deepened, and became downright bizarre.  

END OF PART II

Mother Warriors in the Lyme Disease War Zone

5 Sep

In her New York Times best seller, Mother Warriors, actress Jenny McCarthy writes of the courage of mothers dealing with their children’s autism and fighting back against a medical system that has all but abandoned them. Mother Warriors are women forced to take matters into their own hands for their children or be sentenced to having to sit back and watch them suffer as the medical world shrugs.

A number of years ago, when I was producing the Children’s Miracle Network Telethon,  the mother of one of our “Miracle Children” on whom I was doing a video made a statement that never left me. She was describing the torment of watching her 12-year-old son have excruciating headaches that made him vomit. The doctors said nothing was wrong, he probably just didn’t want to go to school. The dad made him go to school even when he was throwing up. Deal with it. The doctors refused to do a CAT scan until the mother’s relentless insistence wore them down. The results: a tumor the size of an orange in the base of the son’s skull. Surgery immediately.

“A mother knows,” is what Ann Ford told me that day. A mother knows her child better than any other human being and she knows when something is wrong. If it hadn’t been for Ann Ford’s refusal to let the physician dismiss her son as a malingerer, he would have been dead in no time. As it was, they weren’t even sure he would make it through surgery. The physicians ordered him immediately to the hospital and watched in amazement as John and Ann Ford left with their son Joey. “We’ll be there in two hours,” John said. “First I want to take my son home and apologize to him for not believing him and pray for his survival.”  Those prayers worked as Joey recovered wonderfully.

I know many of these Mother Warriors; I am one myself. They are the mothers of children with Lyme Disease

They are mothers who have often taken their children to twenty or more doctors before receiving a diagnosis of Lyme Disease.  By that time the children are so sick that they have missed an inordinate amount of school and the school board truancy employees are calling. They scour the internet to connect with other Mother Warriors for support, information, advocacy and how to find a physician who is “Lyme literate.” And sometimes legal help. They are mothers who have learned to take a deep breath every time a well-meaning (and sometimes not so well-meaning) person remarks “But she doesn’t look sick,” rather than saying, “And you don’t look ignorant.”  They are the mothers who are  bone weary tired after nights up with children crying, “Mama when will the pain stop? When will someone figure out how to help me?”  followed by days of working full-time jobs while calling home constantly. In between, they keep daily and hourly calendars of their children’s symptoms and pain levels, administer meds, keep track of missed homework, deal with the a school system that is dropping hints that maybe what the child really needs is a shrink, and ignore friends and family when they see Johnny in one of his rare good moments and admonish mom that she better make him get his butt up for school in the morning. And sadly, they are the moms who increasingly have to make the tough call to cut contact with those friends and family members who make the situation worse with overt negativity and disbelief that their child is even sick. Where once these mothers tried to explain everything to those who questioned, they now try to not engage in the subject for fear of where the discussion will lead. And they become isolated in their Lyme world because there is rarely any time, energy or money for anything else.

I never forgot Ann Ford’s “a mother knows” comment when I was seeking answers for my own children’s illness. It sustained me when some in my own family didn’t.

I tried everything to find relief of the pain for my daughter who was about 12-years-old when the worst of it hit, the same age as Ann’s son Joey was.  After hospitalization and no diagnosis other than a bad case of cytomegalovirus, her pediatrician referred me to a physician in town who dealt with chronic pain proclaiming she was the person who could help her. But she was out of the country for a month and that meant 30 more days of daily pain and wailing.  The chief of pediatrics at the hospital asked my daughter if she thought she had some weird disease, or she just wanted the pain to stop. “Just stop the pain,”  she begged. He then referred me to a craniosacral therapist when I was more than willing to try alternative therapies.  After a number of treatments the therapist was concerned my daughter needed something ‘more’ and we were referred to an acupuncturist and myofacial pain therapist. This woman, Shannon Goossen, was able to help relieve my daughter’s pain so much that I was joyous with relief that we had finally found the answer, even though she warned that Hayden’s symptoms were some of the worst she had ever seen. Unfortunately, even with great progress, after four or five treatments, Shannon raised concern too that “something else was going on like a virus or allergy” and she needed to see a physician.  By that time the physician was back in the country.

We went to see the physician and within 20 minutes  she told me “You have a very sick little girl. I think it’s Lyme Disease and it’s one of the worst cases I’ve seen.”  When asked why she thought so, the doctor told me she had all the classic symptoms and more, and the doctor herself had it, so she knew. Okay, what now?  The doctor took me through the tests and treatments options. When I asked her what as a mother I could do to help my daughter, these were her exact words: “Quit your job and stay home with your daughter for six months even if it means you have to sell your house.”

Damn. This Lyme Disease was some serious stuff.

But it was when the physcian told me she wouldn’t treat my daughter that I began to learn about the politics of Lyme Disease and how it was spawning a whole new crop of Mother Warriors.

  

END OF PART I