A Big Week for Lyme Disease Patient and Physician Rights

As evidenced by the recent Virginia legislation and the removal of IDSA Lyme guidelines from the federal database used by physicians, patients often have to be their own best health advocates, but they can only do so when they have information. We need to do better.
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The past week has been a landmark one for Lyme disease patients and activists. If you aren't familiar with Lyme... well, you're lucky, and you likely won't understand why an infectious disease needs activists. This week's news helps to explain it -- and shows important progress being made in the fight against not only Lyme, but certain authorities who are hampering proper diagnosis and treatment.

Virginia Senate Passes Landmark Lyme Disease Bill
I grew up in Loudoun County, Virginia, and lived there for the first 30 years of my life. Virginia is where I contracted Lyme disease, and Loudoun is a Lyme hotspot. It is some consolation that the Commonwealth of Virginia takes Lyme disease far more seriously than many other states, and has demonstrated its commitment by consistently introducing and passing legislation to protect those who have Lyme disease.

In 2013, Virginia Governor Bob McDonnell signed the Lyme Disease Testing Disclosure Act, which mandates that all physicians who suspect and test patients for Lyme disease must disclose that a negative test result does not necessarily mean that the patient does not have Lyme disease. This is because the two most common Lyme disease tests -- those endorsed by the U.S. Centers for Disease Control and Prevention (CDC) and the Infectious Diseases Society of America (IDSA) -- are wildly insensitive compared with, for example, HIV tests. The tests themselves are similar in nature: Both identify human-generated antibodies to infectious diseases; however, while the two-tier Western blot and ELISA tests endorsed by the CDC are only between 18 and 66 percent sensitive (variable among studies), HIV antibody tests are 95 to 100 percent accurate. As a result of this major discrepancy between test results and actual likelihood of being Lyme positive, Virginia's 2013 legislation was created to protect patients' rights to know that they may in fact have Lyme disease despite negative test results.

On Feb. 11, Virginia passed another Lyme bill, and this one potentially could save lives. Existing guidelines from the CDC and the IDSA recommend against treating Lyme disease-positive patients with antibiotics for longer than 28 days, making the assumption that all Lyme infections are cured after 28 days of treatment. These recommendations have been challenged for years based on at least two reasons: First, recent discoveries of "persister" forms of Lyme disease bacteria are strong evidence that what the CDC now terms (dismissively, in the opinions of many Lyme patients and specialists) "Post-treatment Lyme Disease Syndrome" is actually persistent/late-stage Lyme disease that is resistant to standard approaches to short-term treatment. Second, many individuals and organizations, including the Lyme Disease Association and the International Lyme and Associated Diseases Society (ILADS) have argued that the CDC and IDSA guidelines are not only outdated, ignoring more current research that proves the existence of and need to treat persistent Lyme, but also that the IDSA has conflicts of interest. In 2008, Connecticut Attorney General Richard Blumenthal found "serious flaws" in the IDSA's guidelines process, including financial conflicts of interests relating to diagnostic testing and medical insurers.

To date, many physicians who treat patients -- effectively, according to the doctors and their patients -- for longer than 28 days with antibiotics have been subject to disciplinary action by their medical boards on the basis of violating CDC and IDSA regulations for treating Lyme. The new Virginia bill provides greater support for both patients and the physicians who effectively treat them:

Increasingly, however, Virginia doctors are refusing new patients who present with the symptoms of Lyme or other tick-borne diseases. Where it appears that a patient may require extended antibiotic treatment beyond the standard 28 days, many Virginia doctors believe that reporting and treating these cases can lead to sanctions from the Virginia Board of Medicine.

2013 television overview of Lyme disease.

Understandably, physicians do not want to risk exposure to such sanctions, despite the fact that extended treatment is suggested under at least one NGC published guideline. SB-671 provides that when a patient chooses to accept treatment in accordance with a clinical practice guideline maintained by the NGC, a health care provider will not be subject to health regulatory board investigations or hearings based solely on the decision to follow such clinical practice guideline.

I applaud my home state/commonwealth for prioritizing patient care and addressing this major public health crisis at a time when the federal body responsible for public health lists this advice on its website for those suffering with debilitating Lyme disease:

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. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need.

What's most troubling about this advice is that the CDC states "it doesn't mean that your symptoms are not real" to patients while recommending that doctors dismiss the symptoms as unworthy of treatment by promoting the very IDSA Lyme treatment guidelines that were just removed from the NGC for being outdated and in need of revision. I myself was told by the first neurologist I saw (never suspecting Lyme disease, although I had been diagnosed with it over 10 years prior) that "a nice, long beach vacation" would "probably make your symptoms all go away." My symptoms worsened continuously over the years that followed, to the extent that my leg stopped working among many other excruciating and devastating symptoms, and I was only semi-functional, despite seeing a psychiatrist regularly. Neither ignoring the physical health problems nor treating them as psychological problems helped at all; only eventual diagnosis and treatment with antibiotics did. Yet these guidelines exist specifically to prevent antibiotic treatment and to promote the idea that Lyme symptoms are anomalous and will improve with coddling, psychotherapy, and copious antidepressants, anxiolytics and sometimes even antipsychotic medications.

With all due respect to the CDC, self-help platitudes are best left to the Oprah Winfrey Network and have little place on the website of the Centers for Disease Control and Prevention: "Share your feelings" is neither effective control nor effective prevention of any disease -- except when we use platforms like this one to share broadly the ghastly misjudgments being made by major regulatory authorities in ignoring or even blocking access to effective diagnostics and treatment.

2016 television news overview of Lyme disease: same doctor, with subtle changes to the story -- note the expert's use of the term "chronic Lyme disease," whose existence is denied by the CDC in favor of "Post-treatment Lyme Disease Syndrome." Here, she also recommends a "mix and match of antibiotics and... nutritional support," and suggests that longer-term antibiotics may be needed.

Outdated IDSA Lyme Treatment Guidelines Removed from Federal Database

In equally encouraging news, the outdated and allegedly biased IDSA Lyme disease treatment guidelines that have for years restricted treatment of Lyme patients have been removed from the website of the National Guideline Clearinghouse (NGC). The NGC is an initiative of the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services, which is used as a reference for physicians and healthcare practitioners in treating patients. The NGC removed the IDSA guidelines, which have served as primary practice guidelines for physicians to date, because they were deemed "outdated and not in compliance with current standards," according to Lorraine Johnson of LymeDisease.org.

Other Big Developments

A few more recent tidbits bode very well for the future of Lyme disease diagnosis and treatment, which have been among the greatest common challenges in medical practice in recent years:

  • A Lyme "gene signature" discovered by University of California at San Francisco and Johns Hopkins University researchers could lead to greatly improved Lyme disease diagnostic tests.
  • To date, Borrelia burgdorferi is the only bacterium definitively known to cause Lyme; existing diagnostic tests therefore look for Bb-specific antibodies in order to make a Lyme disease diagnosis. Last week, a newly discovered species tentatively called Borrelia mayonii has been shown to cause Lyme disease. This, in addition to complexities in the nature of Bb and other Borrelia species and intraspecific strains, could help to explain why existing Lyme tests -- which are specific to the burgdorferi species only -- are so unreliable. (Note: According to the Bay Area Lyme Foundation, other Borrelia species, including B. miyamotoi, which does not produce the telltale bullseye "Lyme disease" rash, can cause symptoms similar to and potentially as serious as those of Bb, yet are not at this time generally considered in standard testing or treatment procedures.)
  • The past couple of weeks have seen remarkable progress for Lyme disease from both research and regulatory perspectives. With increasingly abundant evidence, broadcast, cable, print and online media should delve more deeply into the fastest-spreading infectious disease in the country and start to tell the real story -- a story that goes beyond "check for ticks" and "see your doctor." Lyme experts have written that "a coordinated 'Manhattan project' similar to the attack mounted against the HIV/AIDS epidemic is urgently needed to address the serious worldwide threat of Lyme disease." Yet, we continue to see only drips and drabs of progress, little of it making mainstream news.

    As evidenced by the recent Virginia legislation and the removal of IDSA Lyme guidelines from the federal database used by physicians, patients often have to be their own best health advocates, but they can only do so when they have information. We need to do better.