The Phantom Menace
Chronic Lyme disease is the culprit of a divide in the medical community; yet, according to the Infectious Disease Society of America’s (IDSA) guidelines, it does not exist. IDSA guidelines state that there is insufficient evidence for Lyme disease to be considered a chronic infection after regular antibiotic treatment (“The Clinical Assessment”). Instead, it is a psychosomatic disorder, classified as post-Lyme Syndrome that is caused by “hypochondria and laziness” (“The Clinical Assessment”; Rosner). Yet, “10-20% of treated patients suffer from symptoms…for months and even years following treatment” (“Lyme Disease Study”). This discrepancy has led to a medical debate that limits physicians’ abilities to treat patients with chronic Lyme, which devastates patient care (Gebhart). In order to protect those suffering from chronic Lyme disease, the government should ignore IDSA’s guidelines and support Lyme Literate physicians and fund research for the cure.
IDSA guidelines are too controversial to mandate full government support of treatment regiments. The Attorney General found evidence that the guidelines were manipulated and “excluded opposing views from its panel” (Klotter). According to the current Lyme Guidelines, a patient will be improperly treated if they have chronic Lyme, which is worse than not receiving treatment (Hoppel). Guidelines are also influenced by politics. Johanna Ferguson, who won the Dean’s Award for Health Law at the University of Boston, says, “Often, practice guidelines reflect the industry's interwoven relationships rather than the best available medical knowledge”. The statistics about Lyme are skewed because Lyme disease is not only underreported, but misdiagnosed (Gebhart). The symptoms of Lyme disease are not specific (Hoppel), which makes the disease difficult to diagnose. The only tell-tale sign of Lyme disease, a bulls-eye-shaped rash, is seen in about 30% of cases (“Lyme Disease Test”). The tests are extremely inaccurate, with “50%-70% rate of false negative results” (Gebhart), and “sick patients cannot get diagnosed and not be treated because of antiquated, unsubstantiated tests” (qtd in Rep. Smith). If these statistics are the basis for widely accepted guidelines, shouldn’t they be accurate?
Because Lyme disease is a bacterial infection, physicians expect patients to be healthy after a round of antibiotics. Those who refute the existence of chronic Lyme disease argue that the disease does not remain in the body post-treatment; rather, patients with persistent symptoms are not getting enough antibiotic to kill all of the bacteria (Barbour). This claim was discredited when doctors saw their patients getting better after extended antibiotics (Ferguson). “At least 19 independent societies representing the USA and numerous European countries have produced remarkably similar clinical practice guidelines for Lyme disease, discouraging the diagnosis of chronic Lyme disease,” says Paul Lantos, M.D. from Duke University Medical Center, but these 19 other societies have no listed scientific credentials in the article- a technique used by Lantos to bolster his argument without any proof. IDSA and others are concerned about long time use of antibiotics (Hoppel), which causes a problem when bacteria become resistant to drugs. Being overcautious has left patients to “dangle in the gap between two sides of an academic debate” (Rosner). Treatments or doctor’s visits that deviate from IDSA guidelines are not covered by insurers, and doctors who want to treat the diseases can lose their licenses (Klotter; Ferguson), which depletes available patient care.
IDSA guidelines are used as a basis for the Center for Disease Control’s (CDC) guidelines, which are what doctors use for their diagnoses, and what insurers use to determine coverage (Klotter; Rosner; “Rep Smith”). Because of this, patients are “terribly underserved” (Gebhart), and their care suffers. Most of the money for research is from the National Institute of Health (NIH), which gives funds based on public health needs (“NIH research planning”). If one study found that most patients still had remnants of the bacteria’s DNA in their blood (Rosner), while another found that most of the patients diagnosed with chronic Lyme disease more likely have fibromyalgia or chronic fatigue syndrome (Lantos), then more research is needed before chronic Lyme patients and their doctors are discredited. And since the 30,000-40,000 patients with Lyme may only represent 10% of all cases, this is an issue of public health (“Lyme Disease Study”).
Since IDSA guidelines govern multiple aspects of patient care, the best way to help those suffering with chronic Lyme is awareness. A survey of New England residents found that “public opinion can alter how the disease is treated” (Closter). Senator Blumenthal from Connecticut is currently trying to pass a bill to receive research funds for Lyme disease (“Senator Blumenthal”). Congressman Smith from New Jersey pushed for patients of chronic Lyme to receive treatment despite the guidelines (Rep. Smith). Patients with Lyme disease cannot sit and wait for the government to sort out the problem. Since May is Lyme disease awareness month, the Mayday Project encourages patients to peacefully protest in front of IDSA’s headquarters. The best way to change the opinion of the government and physicians is to continue research for the cure and inform people of the dangers of Lyme disease (“Lyme Disease Study”). Physicians also must be educated about Lyme disease. Since Lyme Literate physicians are “few and far between” (Gebhart), educating our doctors can reverse the way patients are treated. Making people aware of chronic Lyme disease may be the push that leads to support, and physician support will only increase the credibility of the argument.
Discovered in 1977 (Hoppel), Lyme disease is still a major threat to people. As one of “the fastest growing vector borne diseases in the country” (qtd in “Lyme Disease Study”), Lyme disease is a serious infectious disease. The debate as to the existence of chronic Lyme may never be resolved, but this cannot affect patient care. As long as there is no decision, patients suffering with chronic Lyme should have access to fair medical treatment, which includes insurance coverage and funding to research the cure. Just as it is the role of scientists to debate, it is the role of the government to defend the people, and in the case of chronic Lyme disease, bypassing IDSA’s guidelines does just that. Public demand for support can achieve this, but people and physicians must become aware of what is going on. If, “treating Lyme is a marathon” (Gebhart), then it is up to the public to demand support for those who are running in it.
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