The Lyme Wars: Meet The Players

05/02/2017 06:32 am ET Updated Jun 01, 2017

Whether you know it or not, there has been a fierce battle — called “The Lyme Wars” by everyone from The New Yorker to NPR to Dutch scientific researchers — for at least a decade. Lyme disease arguably is politicized as much as AIDS was when it emerged in the 1980s, and the warriors for the most part fall on one of two sides.

First, a disclaimer: Given that many news stories like this one present the there-is-no-chronic-Lyme opinion authoritatively, without discussing counterarguments and without stating any inherent financial or other conflicts of interest, I will state up front that as someone who has lived with long-term, progressive damage to my health from Lyme disease, my bias is that chronic Lyme disease exists. It exists in my reality and in my body, and it has responded mostly favorably to various treatments that not all patients can access or afford. And so the purpose of this essay is to offer an overview of the two sides—those who say there is no such thing as chronic Lyme disease and the countless thousands who live with it and the medical practitioners who treat them. Other articles sometimes present these patients as mentally ill people who believe they have a physical illness but do not, and many of these articles describe doctors, nurses and other healthcare providers who opt to treat Lyme disease patients rather than rejecting them or giving them psychiatric medications. Let it be known that the opinion of this author, based on 20 years of experience with Lyme disease, believes that the latter group is inverting the Hippocratic Oath, “first do no harm” into a perverted new mantra to “first do harm” to patients with this condition. It’s not new. This was done to HIV/AIDS patients in the 1980s, and to black men with syphilis for a 50-year period before them.

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Team Chronic Lyme is made up of patients who have been diagnosed with Lyme disease and have received or are seeking treatment for it, along with medical practitioners who believe these patients would benefit from extended antibiotic treatment. The friends, family and others who support these patients also fall on the side of Team Chronic Lyme. The International Lyme and Associated Diseases Association represents medical professionals who treat Lyme disease, and among high-profile individuals who live with the affliction are musicians Avril Lavigne (below) and Daryl Hall, actor Ashley Olsen, author Amy Tan, reality television stars Yolanda Hadid (formerly Foster) and Ally Hilfiger, Hadid’s children Bella and Anwar, and others, including Kris Kristofferson, whose previously diagnosed fibromyalgia and the Alzheimer’s disease that was stealing his mind away were discovered to be due to late-stage/disseminated Lyme disease. (Read Dana Parish’s interview with Kristofferson’s wife Lisa about how effective treatment brought him back from the brink.) Both during the last week of April, singer Shania Twain and television personality Kelly Osbourne reveal that Lyme disease derailed their health and their careers. Osbourne has said Lyme disease “almost killed me.”

Those who believe in chronic Lyme disease typically advocate on behalf of individualized, patient-focused care and are puzzled about why treatment is denied to sick people, and particularly to those who have been diagnosed via positive CDC-recommended Lyme disease blood tests. They site evidence from peer-reviewed medical journals that documents and discusses multiple strains of Borrelia burgdorferi bacteria that may cause Lyme disease but may not be detected in currently available tests; “persister” bacteria that appear to be immune—at least in a petri dish—to standard antibiotic treatment; shape-shifting Borrelia that change from the standard “swimming and drilling” corkscrew form to those that live in colonies inside protective biofilms to those that form a cyst-type shell and go dormant during Lyme disease treatment. The science behind all this is highly complex and equally contentious.

Team Chronic Lyme’s battle in the Lyme Wars at this time is to secure public funding to research and develop improved Lyme disease tests, to research Lyme disease pathology so that it can be better understood, treated, and one day cured.

Some have compared the Lyme disease epidemic to the HIV/AIDS epidemic. I am one of those people, and I do so even having grown up in the 1980s and 90s as a gay man. Lyme disease is that serious. (I forgive you if you take offense to that and think it can’t possibly be true. It is true, and if you have difficulty believing it, then please at least read the comments readers who live with Lyme disease have posted on a few of my other articles.)

Some states in which Lyme disease has taken a tremendous toll on their residents, including my home state of Virginia and neighboring Maryland, have passed legislation that requires doctors to disclose to their patients that Lyme disease tests frequently return false negatives, and that those who test negative may carry Lyme disease and require treatment. Connecticut, where Lyme was first noted, passed a law in 2009 to protect doctors who treat Lyme disease patients from persecution by the state medical board; Vermont followed in 2014, and in March of this year, Iowa passed a similar law. And last year, the Massachusetts legislature adopted a law requiring state health insurers to cover the costs of extended antibiotic treatment for Lyme disease after a contentious battle with Governor Charlie Baker, who vetoed the original law and rewrote it in such a way that would exclude Lyme disease specialists from such coverage. Baker is a former CEO of a Massachusetts-based health insurance company; his veto and rewritten legislation were overturned by the state legislature.

Tangent: George W. Bush also was treated for Lyme disease while he served as President of the United States, and some have speculated that the condition received unconventional, aggressive treatment not available to most Americans. It is not known whether Bush has experienced lingering symptoms.

Team No Chronic Lyme is made up primarily of medical doctors—especially those who treat infectious diseases, rheumatology, and neurology—as well as most medical boards under the recommendation of the U.S. Centers for Disease Control and Prevention, which follows the guidelines of the Infectious Diseases Society of America (IDSA), and medical insurers.

The CDC and the IDSA oppose long-term treatment of Lyme disease with antibiotics for several stated reasons, including that:

  1. They claim there is insufficient evidence (many say “no good evidence,” but in my queries none has ever qualified this statement) of persisting Lyme disease, or that persisting strains may cause ongoing infection;
  2. They claim that treating patients with long-term antibiotics poses health risks to those patients;
  3. They claim that doing so poses a high public health risk because of the growing preponderance of antibiotic-resistant “superbugs.”

Medical boards in most states and in Canada follow the CDC’s diagnostic and treatment recommendations, and in the case of Lyme disease the CDC defers to the IDSA’s 2006 treatment recommendations, even though these recommendations were removed from the federal Agency for Federal Research and Quality’s National Guidelines Clearinghouse last year for having been outdated, in need of review, and therefore in violation of federal NGC regulations. The IDSA, for its part, appears to treat Lyme disease differently than all other infectious diseases, having produced videos to “debunk” the notion of chronic Lyme disease on its website. No such videos appear to have been created for any other disease of focus, including Ebola, Influenza or Zika.

While CDC representatives rarely discuss Lyme disease publicly (with exceptions), IDSA officials are consulted by the media, such as in a recent VICE News story that attempts to “debunk” chronic Lyme. This story hinges on a primary Team No Chronic Lyme argument—that Lyme specialists, also referred to as Lyme-literate medical doctors, are all snake-oil salespeople who prey upon vulnerable patients. Curiously, Paul Auwaerter, a member of Team No Chronic Lyme, who is presented as the voice of reason in this VICE article, states that “there is a scarcity of data” that Lyme disease infections may persist—even though he co-authored a 2016 Frontiers of Microbiology article that describes how Lyme-causing Borrelia burgdorferi bacteria can morph into forms that survive typical antibiotic treatment, and which seeks to find new combinations of antibiotics that may kill these “persisters.”

The story gives little space to opposing points of view and, more egregiously, it does not disclose that Auwaerter, the expert featured in the story that proclaims “most doctors” dismiss chronic Lyme disease, is a member of the Infectious Diseases Society of America board of directors, or that the story’s sponsor, MedPage Today, may have financial conflicts of interest and actually shares a publication title with the IDSA. The story also does not disclose that this expert has a financial stake in denying the existence of persisting Lyme disease, as his published journal articles require—“P. G. A. has served as an expert witness in malpractice cases related to Lyme disease.” From a website dedicated to expert witnesses:

Most experts who testify are paid at rates comparable to the normal fees they earn from other assignments. You can bet the question of the expert’s fees ― if not brought up by the lawyer retaining you ― will come up in the course of the the other side’s cross-examination. If the amount is out of line, the judge or jury might just conclude that the expert is being paid more than usual in an effort to “sway” his or her testimony. For example, if a dentist typically generates fees of $150 per hour, s/he will generally charge something similar per hour for taking on a matter as an expert. Were the dentist to charge $500 per hour, how would you as a juror react? (You’d probably conclude that the witness was being paid an extra $350 per hour in an effort to buy the testimony.) However, it is not all that unusual for the expert to be paid slightly more for appearing at trial, than doing ordinary office work. (Doctors typically charge more for performing an hour of surgery than for an hour long office visit.)

VICE News presents this story as objective journalism while delivering a thoroughly biased perspective. I have reached out to both the story’s writer and VICE News editors and producers several times since the story was published one year ago (during Lyme Disease Awareness Month) and to date have not received a single reply.

More strikingly, the editorial board of The Boston Globe in March 2016 published an editorial that lobbied against proposed legislation (which eventually passed) that would require state-based health insurers to cover the costs of antibiotics when deemed necessary by doctors. Oddly, the Boston Globe editorial board wrote:

Lawmakers may have good intentions, but they don’t possess the expertise to decide whether it’s beneficial, cost-efficient, or safe, to keep using strong medicines to treat a condition the medical establishment doubts is real. Such questions should be resolved by a consensus of doctors and researchers — and buttressed by convincing clinical date [sic] — not determined by legislative mandate.

...and yet the Boston Globe editorial board took the opposing stance without asserting any medical expertise of its own. It committed the same crime that it criticized, and to my knowledge has not acknowledged having done so, nor has it justified any expertise on the part of the Globe’s editorial board that would warrant the newspaper’s decision to do what it criticized the state legislature for having done.

Many Lyme disease patients report that a majority of doctors dismiss their Lyme disease symptoms as being due to anxiety, a mental disorder, an overactive imagination, or a different idiopathic illness. (This was my repeated experience with neurologists, one of whom told me to “take a long beach vacation and all your problems will go away”—when I was experiencing double vision, extreme nerve pain and numbness in my lower extremities, migrating joint pain throughout my body, and a number of other life-affecting health problems.)

The CDC does now acknowledge a condition it calls post-treatment Lyme disease syndrome, which it describes in this way:

It is not uncommon for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months. Although sometimes called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome” (PTLDS). The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and “auto–immune” responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter’s syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research. Clinical studies are ongoing to determine the cause of PTLDS in humans.

This description is a departure from the common total dismissal of persisting symptoms, as it acknowledges that this condition does occur commonly among people who have been diagnosed with and treated for Lyme disease. Curiously for the federal agency charged with protecting Americans’ public health, the CDC suggests continuing to visit doctors “to make sure that Lyme disease is not the only thing affecting your health” and, ultimately, “share your feelings. If your family and friends can’t provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time.”

This recommendation strikes me as strangely impractical. Even in the cases of clinical depression and anxiety, simply “sharing feelings” cannot be expected to improve a diminishing health condition. (Asked about this recommendation, a spokesperson for the CDC said, “Counseling is not a substitute for medical care, but an adjunct. People who have serious health problems often need to connect with a supportive network, be it a counselor, a support group, or a friend.”)

On its website, the CDC states that:

Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease).

In an email, a CDC spokesperson stated that “Lyme disease is a public health priority for CDC, but we don’t determine Congressional funding levels. CDC receives its funding from Congress, which appropriated $10.663 million to CDC for Lyme disease in FY 2016.”

Curiously, the CDC was awarded $350 million by Congress to battle the Zika virus in December 2016. Only 222 cases of Zika have been acquired domestically according to the CDC, while the CDC estimates over 320,000 cases of Lyme disease are acquired every year within the United States. This translates to over a million and a half dollars ($1,576,576) per Zika patient and $33 per Lyme patient, despite unknown long-term effects of the Zika virus and known but little-understood long-term “damage to tissues and the immune system” resulting from Lyme disease.

Contrasting Attitudes

In summary, I encourage you to watch the three videos below and notice the subtle and unsubtle differences in which Lyme disease is addressed by each respective party.

Infectious Diseases Society of America’s Paul Auwaerter—persisting Lyme disease infection “is not based on scientific fact.” (Notably, Auwaerter co-published a study in the medical journal Frontiers in Microbiology that assesses alternative medications used to treat Lyme disease-causing Borrelia burgdorferi bacteria that survive short-term antibiotic treatment, and which concludes, “These findings confirm and extend previous findings that certain drug combinations have superior activity against B. burgdorferi persisters in vitro, even when pre-treated with amoxicillin. These findings may have implications for improved treatment of Lyme disease.”) In the video, Auwaerter discusses patient and public health risks associated with extended-term antibiotics—a position also promoted by the CDC—yet dermatologists regularly prescribe tetracycline antibiotics for months or years to treat acne, which this doctor asserts “when taken as prescribed is generally safe.” Curiously, neither the IDSA nor the CDC takes any public position on the common long-term prescription of these medications for this cosmetic concern. And in this article from VICE, Auwaerter “said he regularly sees patients who’ve spent $10,000 to $20,000 on antibiotics and herbal supplements prescribed by Lyme literate doctors who charge "concierge-style" prices. He often finds that they never had Lyme and had an entirely different health problem that wasn't being treated.” This allegation of gross medical malpractice is made regularly by Auwaerter and those of a like mind who suggest that most Lyme disease specialists are charlatans and snake-oil salespeople who treat naive Lyme patients for personal profit at the expense of patients’ health.

Below the video of Auwaerter is a video of Paul Mead from the vector-borne diseases unit of the CDC. In my view, Meade for the most part speaks in generalities and is either unwilling or unable to answer many specific questions—and many of his answers were refuted in great detail, with research-based evidence, by Lyme specialist Steven Phillips following Meade’s interview. Philips invited debate, but received no response from Meade or anyone at the CDC.

The last two videos below are of Phillips and Elena Frid, Lyme specialists who, from what I see, are the antitheses of the story frequently told by those on Team No Lyme: They are thoughtful, reflective, careful and conservative in both their treatment and their assertions. Phillips and Frid both have unusually high patient ratings—which absolutely would not be the case were they exploiting or harming their patients; yet, as doctors who treat complex Lyme cases, they are subject to criticisms from the most vocal Team No Lyme members who appear most often in news stories about chronic Lyme disease. These are not individuals seeking profit; instead, they have become invested in the well being of their patients—something more doctors could stand to do these days. Why are they and their peers so frequently maligned, then?

Even just reviewing the three videos below, it seems to me that representatives of the IDSA and the CDC (when willing to comment on Lyme) have a tendency to generalize all doctors who treat Lyme disease as irresponsible and reckless, and tend to dismiss all patient suffering as, frankly, irrelevant to their interests. Meanwhile, as can be seen in the last two videos, Lyme disease specialists in most cases are motivated by genuine concern, view Lyme as an emerging, little-understood disease that affects multiple systems and which cannot be easily identified by currently available laboratory tests, and review every bit of new research about this enigmatic disease so that they can better understand how to recognize and treat it. These doctors are motivated by compassion, and their vested interest is in upholding their Hippocratic oaths, certainly not in harming patients. Opportunistic doctors and entrepreneurs do crop up here and there—you’ll find no one who sells products or self-branded services mentioned in my articles—but though there are predatory and opportunistic doctors who treat cancer patients for profit, no one uses the existence of these doctors to malign patients or to deny the existence of cancer altogether. Because that is an entirely illogical and irrational argument, and it’s a mystery to me why this argument is made about Lyme disease sufferers, and why so many in the media seem to buy this bizarre conspiracy theory that tens or hundreds of thousands of suffering people have invented their illness, choosing to remain in bed claiming agony when they could be otherwise enjoying their lives. That’s a fiction stranger than truth, and it needs to stop being told.

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