05/02/2017 06:32 am ET

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.

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 commentsreaders 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.

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.

Continue Reading and check out the videos here….