Please note that “Lyme disease” as discussed in the article below refers to chronic Lyme disease, also called late-stage Lyme. Chronic Lyme occurs when a bite from a tick infected with Borrelia burgdorferi, the most common causative agent of Lyme disease—and, more often than not, other bacteria and parasites—goes untreated and the disease is allowed to spread throughout the body.
By Alyssa Klaus
This was the response the doctor gave Mandy Hughes when she came to him seeking a diagnosis for mysterious and seemingly random symptoms that were continuing to worsen. Despite his dismissive response, Mandy was relentless, visiting multiple doctors until finally, after 14 years of illness, she was diagnosed with Lyme disease.
Andy Abrams Wilson, an award-winning director and producer, claims that stories like Mandy’s are far from uncommon within the Lyme community, and that the long years between the contraction of the disease and a correct diagnosis are often devastating—sometimes irreversibly so—to people’s health. His documentaries, Under Our Skin (2008) and Under Our Skin 2: Emergence (2014), set the stage for a serious examination of our health care system and explore the schism Lyme has created within academic, political, and medical spheres worldwide.
Lyme disease, once into later stages, is difficult to treat. A bite from an infected tick may have a host of other bacteria and parasites besides the traditional Borrelia burgdorferi, so someone who has been bitten can also have co-infections such as Rocky Mountain spotted fever or cat scratch fever, and with them, a long laundry list of symptoms and complications.
Under Our Skin wastes no time showing the destructive nature of these infections. From the moment the title credits disappear, we are given a startling glance inside the lives of people struggling with Lyme. There is Jared, a young man who contracted Lyme congenitally and has significant developmental issues; Marlene, who was a ballerina before the disease took away her ability to walk; Ben, a former professional baseball player whose Lyme was misdiagnosed as Parkinson’s; and scores of others who have spent hundreds of thousands of dollars on doctors, have been misdiagnosed with everything from Lupus to ALS, or who have been told, like Mandy, that it is simply psychosomatic.
The existence of chronic Lyme has been a dividing issue within the medical community for more than 20 years. There are some government officials, scientists, and doctors that have adamantly denied the possibility of such a disease. However, a rapidly growing body of evidence gathered from both science labs and the testimonies of hundreds of thousands of Americans diagnosed with Lyme every year suggests differently.
The documentary then poses the question: “Why is there such a determined—and often times heated—denial of this disease from our public health services?”
Wilson interviews doctors and scientists on both sides of the debate in an attempt to answer this question, and it is unnerving to see the depth of this controversy. For example, the Lyme community claims that there is mounting evidence that Lyme can be transferred in utero. Dr. Eugene Shapiro disagrees. “There have been numerous studies. There has not been one documented case of congenital Lyme disease.”
Dr. Bernard Raxlen seems astounded by this statement. “Well, that’s nonsense, plain and simple,” he says. “There are significant peer-reviewed articles showing transmission transplacentally and at autopsies.” If Dr. Raxlen’s statement is true, how can such claims to the contrary continue to stand?
When Lyme became a more prominent issue, the Infectious Disease Society of America brought together a board to review their recommended guidelines for treating Lyme disease. The board determined that there was no evidence that chronic Lyme disease existed, and that the guidelines should remain the same (one to two weeks of treatment with antibiotics).
While the guidelines the IDSA sets forth are typically viewed as recommendations for doctors to follow, Under Our Skin claims that insurance companies often use guidelines as hard-and-fast rules, allowing them to deny treatment for cases that fall outside the parameters.
After complaints from Lyme advocates, the Attorney General of Connecticut launched an antitrust probe into the board. It would soon come to light that not all was as it seemed. Twelve out of the 14 members had conflicts of interest, ranging from holding patents associated with Lyme to being paid to write Lyme policy guidelines for insurance companies.
The IDSA was ordered to assemble another board to review the guidelines a second time, and while there were no longer conflicts-of-interest, the IDSA did not bring in any outside specialists. The new board was chosen from within the IDSA itself, and in turn, the new board refused to make any changes to the guidelines.
Dr. Shapiro, who is an ISDA member and former writer of the Lyme guidelines, sums up their stance quite nicely: “We know Lyme disease. We have a good handle on it. That’s really the bottom line.”
There are some who are willing and able to treat those with Lyme despite the controversy. These doctors, spread across the country, have varied approaches. Some, like Dr. Joseph Jemsek in North Carolina, choose the conventional route of long-term antibiotic treatments, which worked for Mandy. Others try a more holistic approach, and some specialize in treating children with Lyme. Despite their different philosophies, they have all found themselves facing consequences for going against convention.
Three of the doctors featured in Under Our Skin were brought before their state’s medical boards; all lost their cases despite the many testimonies of recovery and healing from their patients. Dr. Jemsek, brought before the North Carolina board after complaints from insurance companies, had his license suspended for one year and was sued by Blue Cross Blue Shield for $100 million. He went bankrupt.
The ending of Under Our Skin leaves viewers with a frightening possibility to consider: the collaboration of some government officials, Big Pharma, and insurance companies to threaten doctors into betraying their Hippocratic Oath by denying the existence of chronic Lyme, all in order to cut costs.
There is no easy cure for chronic Lyme. The mix of co-infections in an infected tick is unique to each one due to limitless variables, meaning that each case of Lyme is in itself unique. The acceptance of the reality of this disease within the medical community would result in insurance companies having to pay for prolonged treatment. With the number of Lyme cases rising rapidly, the bill could certainly be substantial.
The story is not over, though. Fast forward six years to the release of Under Our Skin 2: Emergence. Lyme has become a hot-button issue worldwide. The Center for Disease Control now admits that there are more than 300,000 cases of Lyme a year in the U.S. alone, not to mention the hundreds of thousands in Canada, Australia, and all across Europe.
Unfortunately, Emergence shows that the story remains much the same: Public health services worldwide refuse to acknowledge the existence of chronic Lyme, doctors lose their licenses, scientists are stripped of their funding, and people are getting sicker and sicker.
Even now, the overarching question remains unanswered. What is it about Lyme that creates such a reaction politically, academically, and scientifically, and why are those with Lyme left continually fighting against a system that was created to give a compassionate response to ill people?
Emergence does end on a more promising note, however, showing how science is steadily uncovering more and more irrefutable evidence for Lyme. Lyme advocates worldwide—from Russia, to Australia, Western Europe, and Canada—have become active through protests and petition, causing the media to ask questions and demand answers from the medical community on this rising epidemic.
Above all else, Wilson ends with hope—hope that through these documentaries, the Lyme community will continue to have increased visibility worldwide, and that those suffering from Lyme will finally get the care that they so desperately need.
Note: An earlier version of this article referenced Lyme disease as a virus. It has since been corrected to Borrelia burgdorferi, the bacteria that is often synonymous with Lyme disease, when “Lyme disease” is not being used as an umbrella term for all tick-borne diseases.
Disclaimer: The information in this article is for educational purposes and not meant as medical advice.