Lyme Disease: What You Should Know About the Controversy
By Sanaz Amirpour
When you look up Lyme disease, chances are that the top search results belong to the Centers for Disease Control and Prevention (CDC), which defines the disease as an acute insect borne disease that is easily treatable with antibiotics.
Unfortunately, for thousands of people living with long-term Lyme disease symptoms that remain long after antibiotic treatment is supposed to have healed them, the simple explanation provided by the CDC just doesn’t seem to cut it.
Since the majority of doctors follow the CDC’s definition — much to the dismay of patients and Lyme disease patient advocacy groups — there is considerable controversy that many believe to have prevented appropriate diagnosis and treatment for people with Lyme symptoms.
A Bit of Background: The Two Camps of Lyme Disease
Basically, the Lyme controversy is divided between two camps: those who believe lingering symptoms are due to an autoimmune response, and those who believe it is from a persistence of infection itself.
Citing studies funded by the National Institutes of Health (NIH), the CDC’s stance is that Lyme disease is really hard to catch and that a cure involves just a few weeks of antibiotic treatment. Although the CDC recognizes that Lyme symptoms can last for more than six months (which it refers to as Post-Treatment Lyme Disease Syndrome) it maintains that chronic Lyme “only affects a small percentage of cases and patient complaints are more autoimmune in nature than a case of persistent infection.”
On the other side of the conversation sit patients, advocacy groups like LymeDisease.org, the International Lyme and Associated Diseases Society, Lyme Action Network and The Mayday Project, and a minority of doctors, who see Lyme disease as a persistent infection and consider it a complex and chronic illness. This side recognizes that although some symptoms may be the result of an autoimmune condition, that autoimmune condition was most likely driven by a small amount of bacteria that remained after the initial antibiotic treatment. Treatment for chronic Lyme is considered complex and may require different combinations of antibiotics, and for prolonged periods of time.
What This Controversy Means for Patients
It’s important to note that the CDC adheres to criteria set by the Infectious Diseases Society of America (IDSA), which dictates the guidelines for diagnosis and treatment. (There are also the same guidelines that doctors and insurance companies follow.) The IDSA only allows for the diagnosis of Lyme if the patient exhibits telltale signs and symptoms of Lyme and has had a history of possible exposure to infected black-legged ticks (also referred to as deer ticks).
Difficulty getting a diagnosis
Unfortunately, if a patient is without a clear bull’s-eye shaped skin rash, it can be very hard to get laboratory tests ordered, let alone a subsequent Lyme disease diagnosis from doctors — especially since many people never recall being bitten in the first place.
The other problems that patients and Lyme advocacy group have to contend with is that Lyme disease symptoms resemble those of other diseases, especially those of many autoimmune diseases, and costly laboratory tests for Lyme are thought to be largely flawed.
Denied insurance coverage
Since insurance companies adhere to the guidelines set by IDSA, they have the right to refuse patients laboratory tests for Lyme if all criteria are not met. In other words, not only is diagnosis hard to get in the first place, but so is subsequent treatment for chronic Lyme.
Disbelief from the medical community
As mentioned, the majority of doctors do not believe that chronic Lyme exists. The others, who do believe a tick bite can lead to a more complex and persistent chronic condition are often labeled as “quacks” and can be at risk of losing their medical licenses.
Stigma
Many patients venture out on their own to get to the root of their medical problems, since insurance is not going to cover them anyway. This and the fact that in recent years celebrities such as Yolanda Hadid have come out publicly about having Lyme disease, has caused some people to refer to Lyme disease as the “rich people’s disease,” presumably because they are the only ones that can afford the additional lab tests that are not covered by insurance, which are used to diagnose patients. This problem is further aggravated since the lab tests conducted by Lyme specialists are different from the ones approved by IDSA, which means that the subsequent treatment is also not covered by insurance companies or seen to be scientifically valid by the larger medical community.
What Now?
It’s obvious that there is a lot to this controversy. From politics to a lack of data and communication between governing bodies, doctors and patients, the future of Lyme disease treatment and research may seem bleak. But every day, there are dedicated Lyme disease advocates that are working hard to battle the current system. In fact, non-profit organizations such as LymeDisease.org are woking on collecting more data to instigate change. Their project, MyLymeData, allows people living with Lyme to learn from one another by inputting data, which the group hopes can help drive research to improve lives. The patient-powered research project was conceived by and is run by patients, and addresses the issues they care most about.
In addition, a new bill was introduced in the Senate in June 2015, called the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015 (S. 1503). If passed, the bill would require the Department of Health and Human Services (HHS) to establish the Tick-Borne Diseases Advisory Committee to address Lyme disease and other tick-borne diseases. The bill would also require HHS to consider a broad spectrum of scientific viewpoints when making public health policy decisions and ensure that information disseminated to physicians and the public is based on the best available science. It’s still unclear what the future of S. 1503 is.
Article originally published May 18, 2016 on Chronicality.com
