Sequel to award-winning film reveals hope for Lyme sufferers
Story at-a-glance -
- An estimated 329,000 Americans are diagnosed with Lyme disease each year and the prevalence is rising across the world
- Lyme disease is becoming more widely recognized as a real disease, and one that can have chronic consequences, but sufferers still meet plenty of resistance from the medical community and insurers
- The film reveals medical collusion and conflicts of interest that keep Lyme patients suffering, but ends on a hopeful note, showing how patients in the prequel have managed to improve their health and reclaim their lives
According to the U.S. Centers for Disease Control and Prevention (CDC), an estimated 329,000 Americans are diagnosed with Lyme disease each year, although some data suggest it may actually be over 444,000.1 While exact numbers are difficult to ascertain, what is known is that the prevalence is rising.
Since Lyme disease became a nationally notifiable condition in 1991,2 the number of U.S. counties considered at high risk for Lyme disease has increased by more than 300%.3 The disease is also expanding rapidly all over the world,4 as new research presented in April 2019 shows that the outbreaks are creeping steadily into northern countries with less temperate climates.
Likewise, by the end of 2018 eight northern U.S. states had more Lyme disease cases than southern states like Florida or those with moderate climates like West Virginia and North Carolina.5 In fact, Pennsylvania was leading the pack with 119,000 cases, according to the CDC.
Today, Lyme disease is becoming more widely recognized as an actual disease, but sufferers still meet plenty of resistance from the medical community and insurers. In years past, Lyme sufferers were often told their problem was psychiatric; in essence, the symptoms were "all in their head."
Under Our Skin
"Under Our Skin 2: Emergence" is a sequel to the award-winning and Academy Award semifinalist documentary "Under Our Skin,"6 which exposed the hidden story of "medical and scientific malfeasance and neglect," as thousands of people with Lyme disease go undiagnosed, or get misdiagnosed each year.
"Under Our Skin" had a tremendous impact raising awareness among patients, doctors and health authorities alike. Since the film's release in 2014, the CDC has raised its estimated prevalence of Lyme more than 10 times, making it more prevalent than HIV and breast cancer combined in the U.S.
Even more importantly, scientific hypotheses presented in the film — such as the theory that Lyme organisms may thrive in biofilms, which helps explain why treatment is so difficult and recurrence so common — have now become widely accepted.
However, despite progress, Lyme patients still face an uphill battle. "Emergence" examines the deepening crisis, as prevalence is rising far faster than the evolution of diagnosis and treatment.
This article was originally published in 2016, and it's been updated in 2019 in preparation for Lyme Disease Awareness Month in May in the United States. I believe this is the perfect time to share this important film once again, in case you haven't seen it.
Around the world, controversy around Lyme disease continues to brew, and the film reveals medical collusion and conflicts of interest that keep Lyme patients suffering. The film ends on a hopeful note, however, by showing how patients in the original film have managed to improve their health and reclaim their lives.
The History of Lyme Disease
Lyme disease was named after the East Coast town of Lyme, Connecticut, where the disease was first identified in 1975.7 By 1977, the black-legged tick (Ixodes scapularis, also known as the deer tick) was linked to transmission of the disease.
In November 1981, Willy Burgdorfer, Ph.D., discovered the bacterium responsible for the infection: Borrelia burgdorferi (B. burgdorferi),8 a relative to the spirochete bacterium that causes syphilis .9 The bacteria are released into your blood from the infected tick.
We now know there are about two dozen species of B. burgdorferi with hundreds of strains worldwide,10 many of which show resistance to antibiotics, with the disease recurring when antibiotics are stopped. New research11 shows that one reason for this may be that B. burgdorferi form protective biofilms around themselves, enhancing antibiotic resistance.
While not all the species are human pathogens, part of what makes B. burgdorferi such a formidable foe is its ability to take different forms in your body, depending on the conditions. This clever maneuvering helps it to hide and survive and ultimately to form these biofilms.
Its corkscrew-shaped form also allows it to burrow into and hide in a variety of your body's tissues, which is why it causes such wide-ranging multisystem involvement.
Increasing the complexity further, some symptoms may also be due to coinfections triggered by other disease-causing organisms that like to travel with the B. burgdorferi bacterium. Many Lyme patients have one or more of these coinfections, which may or may not respond to any given treatment for B. burgdorferi.
To learn more about the symptoms and prevention of Lyme disease, make sure to check out the award-winning films "Under Our Skin" and "Under Our Skin 2: Emergence."
Urban Sprawl Has Contributed to Rising Lyme Prevalence
Since the late 1970s, the spread of Lyme disease has primarily been blamed on deer. However, more recent evidence suggests rodents like mice and rats are a far more serious threat12,13 and the rise in Lyme disease has been traced back to the elimination of natural predators.
Ticks are not born with the Lyme spirochetes. They pick up the bacteria when feeding on an infected host.14 Research indicates that white-footed mice infect 75 to 95 percent of larval ticks that feed on them, while deer only infect about 1 percent.
According to a 1996 study,15 rats are even more infectious than mice, noting that "the capacity of rats to serve as reservoir hosts for the Lyme disease spirochete, therefore, increases risk of infection among visitors to ... urban parks."
Another study 16 published the following year also found that Norway rats and black rats were exceptionally effective hosts, infecting nearly all ticks that fed on them.
The main predators of small rodents like mice and rats are foxes, birds of prey, skunks and snakes.17 Agricultural and urban sprawl have decimated the habitats of these natural predators of mice and rats, allowing disease-carrying rodent populations to rise unabated.
Moreover, while snakes and birds of prey like hawks, falcons and owls are losing their natural habitats, the coyote population not only is thriving18 in most states, but is also killing off the only predators of rodents left, namely foxes and cats.
A study19 that looked at these factors found that increases in Lyme disease in the Northeast and Midwest U.S. in the past three decades consistently correlated to declines in red fox. It also found that as fox populations decrease and rodents increase, coyotes do not help control small rodent populations because they prefer much larger prey.
Other Contributing Factors
Besides mice and rats, and to a lesser degree deer, Lyme can also be spread by other insects20,21 besides ticks, including mosquitoes, lice, fleas and mites.
Complicating matters further, there's yet another tick-borne disease on the loose. Researchers have identified a tick-borne illness that is very similar to Lyme, caused by Borrelia miyamotoi (B. miyamotoi). The CDC22 describes B. miyamotoi as a distant relative to B. burgdorferi, being more closely related to bacteria that cause tick-borne relapsing fever. This disease is characterized by recurring episodes of fever, headache, nausea and muscle or joint aches.
This bacterium was first identified in Japanese ticks in 1995. Since then, it's been found in several rodent species (and the ticks that feed on them) in the U.S., as well as in ticks feeding on European red deer, domestic ruminants and white-tailed deer. According to the CDC:15
"Given that B. miyamotoi uses the same vector ticks as B. burgdorferi and that the range of I. scapularis ticks continues to expand, it seems inevitable that the human population will be increasingly exposed to B. miyamotoi."
What Makes Lyme Disease Such a Challenging Disease?
Symptoms of Lyme disease typically start out with an expanding rash, which may be followed by fever, fatigue, chills, headaches and achy muscles or joints. According to the American Lyme Disease Foundation, these symptoms can be easy to overlook, so if you notice the rash, you should see your doctor right away.23
The disease may then progress to muscle spasms, loss of motor coordination and even intermittent paralysis, meningitis or heart problems. For more information on identifying a Lyme disease rash, please see the ALDF website.24
On an interesting side note, a 2014 paper25,26 published in the journal Frontiers in Zoology argues that ticks should be reclassified as venomous, as their salivary proteins are similar to those found in scorpion, spider, snake and bee venoms. An estimated 8% of tick species are in fact capable of causing paralysis with a single bite.
The simplest presentation of Lyme disease is in the orthopedic forms, which tend to affect the larger joints. When the microbes and the associated immune reactions are situated in the connective tissue, the infection presents as a "vague, dispersed pain," which is easily misdiagnosed as fibromyalgia.
A major challenge with Lyme disease is that its symptoms imitate so many other disorders, including multiple sclerosis (MS), arthritis, chronic fatigue syndrome, fibromyalgia and even Alzheimer's disease, making proper identification difficult and time consuming27 What's worse, many Lyme sufferers outwardly look quite healthy and their blood work often raises no cause for concern, which is why Lyme disease has also been called "the invisible illness."
Better Diagnostics for Lyme Are Sorely Needed
A big problem facing Lyme patients and their treating doctors is the difficulty of reaching a proper diagnosis.28 Conventional lab tests are unreliable, and one reason for this is because the spirochete has the ability to infect your white blood cells.29 Lab tests rely on the normal function of white blood cells to produce the antibodies they measure. If your white cells are infected, they don't respond to infection appropriately.
In order for blood tests to be truly useful, you need to be treated first. Once your immune system begins to respond normally, only then will the antibodies show up. This is called the "Lyme Paradox." You have to be treated before a proper diagnosis can be made.
That said, I recommend the specialized lab called IGeneX because they offer highly sensitive tests for more outer surface proteins (bands), and can often detect Lyme while standard blood tests cannot. IGeneX also tests for a few strains of coinfections such as Babesia and Ehrlichia.
Patients and Doctors Fight for Recognition of Chronic Lyme
As if the difficulties of getting a proper diagnosis and treatment were not enough, Lyme sufferers face additional hurdles when they don't fully recuperate after the initial treatment. The Infectious Diseases Society of America (IDSA), which publishes guidelines for a number of infectious diseases, declared in 2012 that:30
"We sympathize with these patients' suffering, but remain concerned that a diagnosis of so-called 'chronic Lyme disease,' suggesting that active infection is ongoing, is not supported by scientific evidence and, more alarmingly, the treatment of long-term antibiotic therapy will do patients more harm than good."
As of April 24, 2019, this statement remained on IDSA's official Lyme disease website.31 IDSA's 2006 clinical practice guidelines32 for Lyme disease claim that Lyme is easily cured with with 10 to 28 days of antibiotics. However, the references they base this on reflect a clear bias. Of the 400 references they cite, half are based on articles written by their own people.
After then-Connecticut Attorney General Richard Blumenthal opened an ethics investigation on them,33 an antitrust investigation into IDSA's panel members revealed rampant conflicts of interest. But, unfortunately, such discoveries did not result in positive change, as the IDSA followed up with its own "independent" panel review, which concluded that the IDSA's guidelines were "medically and scientifically" justified34 and that the authors "did not fail to consider or cite any relevant data."
As a result, chronic Lyme patients continue having to fight for their right to treatment, as IDSA's guidelines have sweeping impacts on Lyme disease medical care. Insurance companies frequently restrict coverage for long-term treatment based on IDSA's guidelines. Physicians' treatment decisions are also guided by its recommendations.
Opposing IDSA is the International Lyme and Associated Diseases Society, the members of which argue that many patients suffer long-term consequences and require far longer treatment than recommended by IDSA.
Acknowledging that the two entities' guidelines conflict,35 the Institute of Medicine noted that "conflicting guidelines most often arise when evidence is weak, organizations use different assessment schemes or when guideline developers place different values on the benefits and harms of interventions."
Signs of Slow but Steady Progress
There are signs of progress though:
• In 2015, a new Lyme research center attached to the rheumatology division at Johns Hopkins Bayview Medical Center was created. Led by Lyme researcher Dr. John Aucott, the research center focuses on biologic disease mechanisms of Lyme and on improving the accuracy of diagnostic tests for it.36
• In February 2016, lymedisease.org reported that the National Guidelines Clearinghouse, "a federal database that provides treatment information to health care professionals and insurance companies," had removed IDSA's treatment guidelines from its website, leaving only ILADS guidelines.37
The IDSA guidelines are also due for revision, although major changes are probably unlikely. On the upside, IDSA reluctantly agreed to include a Lyme patient on its guideline's panel, after being pressured by Lyme disease advocate groups, patients and U.S. Congressmen. As of April 2019, the IDSA reports having three patients with confirmed Lyme disease and one parent of a child with confirmed Lyme disease on its panel.38
However, until the IDSA guidelines are updated — for which there is no known deadline as of yet even though the agency sought public comments for it in 2015 — ILADS treatment guidelines are the only ones listed by National Guidelines Clearinghouse. Instead, the IDSA is choosing a wait-and-see position as they study the concerns brought up in the public commentaries.39
• At the end of June 2016, the Delaware Senate and House passed HB 291, which created an oversight board to educate health care professionals about Lyme disease.40 In April 2019, the Global Lyme Alliance joined Delaware's Lyme Disease Education Oversight Board to partner in launching an only Lyme disease course for physicians and other health care professionals.41
• On July 31, 2016, the Massachusetts Senate passed the Lyme disease insurance bill (H4491), joining the state's House in overriding their governor's veto of the bill. The new law took effect immediately, calling for mandatory insurance coverage for the long-term treatment of chronic Lyme, setting a precedent for other states to follow.42
• In August 2018 scientists announced that they'd found that two antibiotics, ceftriaxone and vancomycin, cleared the B. burgdorferi infection when the standard antibiotic, doxycycline, did not.43
Take Prevention Seriously
Considering the difficulty of diagnosing and treating Lyme disease, taking preventive measures should be at the top of your list:
- Avoid tick-infested areas, such as leaf piles around trees. Walk in the middle of trails and avoid brushing against long grasses path edgings. Don't sit on logs or wooden stumps.
- Considering the high infection rate of rats, you'd be wise to take precautions if you're in an area where rats have been sighted.
- Wear light-colored long pants and long sleeves, to make it easier to see the ticks.
- Tuck your pants into socks, and wear closed shoes and a hat, especially if venturing out into wooded areas. Also tuck your shirt into your pants.
- Ticks are very tiny. You want to find and remove them before they bite, so do a thorough tick check upon returning inside, and keep checking for several days following exposure. Also check your bedding for several days following exposure.
As for using chemical repellents, I do not recommend using them directly on your skin as this will introduce toxins directly into your body. If you use them, spray them on the outside of your clothes and avoid inhaling the spray fumes. The Environmental Protection Agency (EPA) has a list44 indicating the hourly protection limits for various repellents.
If you find that a tick has latched onto you, it's very important to remove it properly. For detailed instructions, please see lymedisease.org's tick removal page.45 Once removed, make sure you save the tick so that it can be tested for presence of pathogenic organisms.
About the Director
I believe in bringing quality to my readers, which is why I wanted to share some information about the director, Andy Abrahams Wilson, from "Under Our Skin 2: Emergence." We sat down with Andy to learn a little more about what goes in to making these films. Thank you to Mr. Wilson for sharing with us.
What was your inspiration for making this film?
Lyme disease is a canary in the coal mine and case study for what's poisonous in both our environment and our science. At the epicenter a tiny microbe looms, providing a powerful symbol for an issue that is hidden and lurking — so small yet immense, so real but unrecognized. What has gotten under our skin is not just a microorganism, but a lethal system which has abandoned some of the most needy and threatens us all.
Our own human skin is a microcosm of the earth, and the extent to which the Earth's body is out of balance, so is our own. With "Under Our Skin" and its sequel "Emergence," it is my mission to show the horror of an illness and an ill system that too long has been ignored. But I also want to show the human and natural beauty right next to it. Sometimes indistinguishable, the beauty and horror are intertwined.
If the films merely perpetuate the idea that the natural world is perilous, or that human nature is corrupt, we miss out on the beauty that surrounds us. On the other hand, if we are lulled by convention and don't look beneath the surface, we risk infection by the equally dangerous maladies of ignorance and indifference.
What was your favorite part of making this film?
As the director, my favorite part of the film was being a witness to the hundreds of Lyme sufferers interviewed through the four years of production. This witnessing can be incredibly healing, especially for people whose voices have not been heard or validated. Of course, once the film was completed, the personal stories about how the film changed — or even saved — people's lives was the icing on the cake. To create art that helps heal is the best reward possible.
Where do the proceeds to your film go?
Open Eye Pictures, the production and distribution company behind the film, is a nonprofit specializing in films that educate and activate. All proceeds from the film go back into the mission of the company to bring awareness and impact change through film. We have an ongoing Lyme outreach and community engagement program which is supported solely by proceeds from film sales.
Together with your help we can continue to spread the word about this harmful disease so that we can take control of our health and the health of our children. We are offering a combo deal of Under Our Skin Parts 1 and 2 for a discounted price so be sure to take advantage of this great deal.
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