10 REASONS WE ARE FAILING TO OVERCOME LYME DISEASE
For many diseases, it’s simple. You find out what you have. You receive treatment and you are cured – but not with Lyme.
Current FDA approved blood tests in the United States average out to be 46% accurate. These tests measure antibody levels. If people are very newly infected, they will not have yet developed antibodies to the bacteria, and thus antibody tests will fail. Also, for people who have had symptoms for years, but no diagnosis, tests may also fail for reasons that are poorly understood. Sometimes people will take tests, get negative results, and then do a course of antibiotic treatment and retest, this time with positive results. Lyme’s effect on the immune system over time is poorly understood.
The Western Blot and ELISA tests were created to measure Borrelia burgdorferi, the spirochete most common on the Eastern Coast of the United States. However, they do not do a good job of measuring other strains of Borrelia. The National Center for Biotechnology Information (NCBI) has published research indicating that we develop strain specific immunity to Lyme. This explains how a person can contract Lyme, recover, be bitten again and become ill again.
The CDC estimates that 10-20% of Lyme patients remain ill after standard antibiotic treatment. However, according to a recent survey of Lyme patients, 36% remain ill after standard antibiotic treatment. These patients can struggle for years with symptoms that severely undermine their quality of life, including becoming permanently disabled.
One group of physicians, the Infectious Diseases Society of America (IDSA) believes that Lyme is only a short term infection, treatable with 2-3 weeks of of antibiotics. They call any symptoms that linger beyond that time “post-Lyme disease treatment syndrome.” Yet recent research by respected scientist Kim Lewis confirms that Borrelia forms so called “persister cells,” and that up to 1% of Borrelia can survive lethal doses of antibiotics in a petri dish.
Another medical board, the International Lyme and Associated Diseases Society, (ILADS), believes that the disease can persist long-term, thus the phrase “chronic Lyme.” ILADS’ view is that long-term treatment, sometimes with antibiotics, is warranted. There have been allegations of conflicts of interest at the IDSA, which has refused to include Lyme advocates in their process of establishing clinical guidelines for Lyme. In the midst of the conflict, the public suffers, because medical boards have the power to recommend policy to lawmakers, insurance companies and to sanction doctors who treat outside of established medical guidelines.
Conflict about the disease impacts medical education, so doctors are not being adequately trained to recognize Lyme. Doctors often are taught to use only a few symptoms, (rash, fever, joint aches, headache), to make a clinical diagnosis of Lyme. But Lyme is now presenting in myriad ways, with somewhere in the range of 200-300 symptoms. Sick patients are going to doctors, only to be told, “it must be in your head.” People with Lyme are misdiagnosed as having Multiple Sclerosis (MS), Lou Gehrig’s disease (ALS), Parkinson’s disease and serious psychiatric illnesses. Often these patients are put on medications for these incorrect diagnoses, which worsen their health. The gap between Lyme patients’ experience and doctors’ understanding of Lyme has radically eroded public trust in the medical profession.
NO HEALTH INSURANCE
Most insurance companies do not cover treatment for Lyme beyond the initial few weeks of infection.
NO RESEARCH FUNDING
In 2015, the United States government will spend $21 million on Lyme research through National Institutes of Health grants. Here’s how that stacks up against some other diseases, according to CDC estimates of annual new cases of each disease in the US. (The West Nile numbers are the only exception, as there are only 2100 known cases reported in total in the US).
NO GOVERNMENTAL OVERSIGHT
There is currently no Federal agency or task force overseeing the Lyme problem. Representative Chris Gibson from Dutchess County, NY, has proposed legislation that would create a coalition of government agencies, physicians, and patient advocates to move forward on the Lyme problem. Lyme non-profit leaders have been calling for a Congressional investigation into conflicts of interest in the Lyme sector, and they question whether this bill would simply re-create the problem by placing individuals with conflicts of interest in positions of power on the proposed coalition.
NO DISASTER AID
The definition of disaster is “a sudden event, such as an accident or a natural catastrophe, that causes great damage or loss of life.” With Lyme, people are losing their health, their jobs, their savings and their homes as they struggle to pay for out of pocket medical treatment and remain alive. Yet, there is no disaster aid for people with Lyme and their families. Lyme treatment is currently estimated to cost the US economy over $3.1 billion annually.
NO ACCURATE DATA
Lack of an accurate test, variations in reporting standards for Lyme in different states and countries, lack of research on long-term Lyme and a climate of neglect and denial make it impossible for us to know the true size of the Lyme problem.
Because of the conflict around Lyme, doctors treating patient long-term have been sanctioned by medical boards, in some cases sued, and stripped of their licenses. Some Lyme literate doctors have stopped practicing, unwilling to deal with the controversy any longer. Many others are so swamped with sick patients that they no longer accept new patients. In some states and countries, patients literally cannot find a doctor who will treat them. Because access to Lyme literate doctors can be problematic, many people have turned to online sources of information, which present conflicting and sometimes incorrect information. This just increases the confusion and fear around the disease. Alternative and holistic treatments that are helping patients are not being studied or shared through mainstream medical channels.