what to know and do about Lyme disease
As May, the month of Lyme Disease Awareness, comes to an end, I’d like to use this opportunity to share some thoughts and facts about Lyme disease because education is paramount for preventing the spread of this illness. To kick off this month of awareness, my mom and I attended a local fundraiser in Chicago for Global Lyme Alliance (GLA), the leading Lyme disease 501(c)(3) nonprofit working to combat this illness. It was a treat to connect with other Lyme patients in the area, as well as to meet Scott Santarella, the CEO of GLA, and new GLA Board Member, Erin Walker.
what to know about lyme disease.
One of the indicators used by the U.S. Environmental Protection Agency to track climate change is the rate of reported Lyme disease.
In 2014, the U.S. Environmental Protection Agency issued a report called ‘Climate Change Indicators in the U.S.’ In the third edition of the report, four new "indicators" were included to measure the effects of global climate change on lakes, forests, glaciers, and humans. These new indicators included the number of annual heating and cooling days (it’s not surprising we're using more energy to cool rather than to heat), the number of wildfires, the water level and temperature of the Great Lakes, and Lyme disease. Why do they track rates of reported Lyme disease? The report states, “it's an illness spread by ticks whose populations are influenced by many factors, including climate." While there's no single explanation to explain the exponential growth of this disease, environmental factors such as decreases in forests and woodland spaces, expanding migratory patterns of birds, declining biodiversity, and rising temperatures, are also key to understanding the evolution of this epidemic.
It’s incredibly difficult to obtain a clinical diagnosis of Lyme disease.
You can learn more here, but the following are the primary reasons:
Lyme disease symptoms overlap with those of many other illnesses (multiple sclerosis, lupus, depression, chronic fatigue, etc.).
The “bull’s eye” rash rarely manifests following a tick bite.
According to some estimates, only 29 to 40 percent of tests are correctly positive in the early weeks of infection.
Other studies show the standard two-tier testing for late-stage Lyme disease only has a success rate of 50 percent.
Funding for Lyme disease is scarce at the state and national level.
In 2018, the National Institute of Health awarded only $23 million in funding for research related to Lyme disease, yet gave nearly twice as much toward research on West Nile Virus. To put this into perspective, a 2016 CDC report stated that 2,149 Americans were reported to have been infected with West Nile virus. However, in that same year, at least 260,000 Americans were estimated to have been infected with Lyme disease.
In some cases, patients cannot receive the antibiotics their doctors actually want to prescribe.
The use of antibiotics to treat Lyme disease is a heavily contested topic to the point that some doctors have become wary of prescribing repeated courses of antibiotics. In Lyme: The First Epidemic of Climate Change, journalist Mary Beth Pfeiffer writes, “Lyme disease is an illness that has been minimized, underestimated, and politicized to the point that some doctors fear treating it aggressively with a cheap, common drug: antibiotics.” Some attribute this issue to the fact that the CDC doesn’t officially recognize that Lyme disease may be “chronic,” defined as the “failure of common antibiotics to kill the infection, leaving the patient sick.” Pfeiffer writes, “Doctors who turn away patients with advanced cases of Lyme disease might do so from fear of losing their license or facing disciplinary charges for prescribing antibiotics longer than the suggested medical protocols of 10 - 28 days.”
Lyme disease is truly an epidemic.
Estimates by the CDC suggest that in 2017 there were 427,000 cases of reported Lyme disease (twice the number of reported cases of breast cancer). This figure is calculated by multiplying the number of reported cases by a factor of 10, because the CDC notes that Lyme is underreported due to the frequency of misdiagnosed cases.
what to do about Lyme disease.
Spread the word.
Share this post with your friends, colleagues, and family so that they can learn about means of prevention, treatment and advocating for others suffering from this illness. This is especially important for anyone who spends time in the woods, along lakes, in city parks, or on golf courses. At the Chicago fundraiser for GLA, Erin Walker (wife of professional golfer Jimmy Walker who plays on the PGA tour), spoke about the Lyme disease diagnosis she and her husband both received in 2017. She voiced her frustration with the PGA regarding their lack of concern about Lyme disease since golf courses are hotspots for ticks that live in damp areas, particularly where grasses border woods.
Start making it a habit to check for ticks after spending time outdoors.
Use DEET, wear pants and long-sleeve shirts. Conduct a body scan to check for ticks, especially under the arms, in and around the ears, inside the belly button, behind the knees, between the legs, around the waist, and on the hairline and scalp. Throw your clothes into the dryer on high for 20 minutes to kill any ticks, and if possible, shower soon, after being outdoors.
Consider donating to Global Lyme Alliance.
Global Lyme Alliance is the only Lyme disease 501(c)(3) focused on research with two Ph.D’s at the helm of its science program, supported by a Scientific Advisory Board, and with a grant review process modeled after the National Institute of Health. As of May 2019, GLA has raised more than $10 million in research grants to fund the development of accurate diagnostic tests, effective patient treatments, and clinical studies. Ten million dollars may sound like a lot, but it barely begins to cover the costs needed to make a difference in understanding and treating this epidemic.