[Editor’s note: Dr. Gorski will be absent for another week, so in his stead we present another post from Braden MacBeth.]

Under Our Skin is a documentary about Lyme disease, a tick-borne illness mostly relegated to the northeastern US. It was released in 2009 and received mostly positive reviews from critics. Having watched the film, I don’t really understand why. Under Our Skin exists to sell viewers on unnecessary and dangerous long-term antibiotic therapies, and the existence of chronic Lyme disease.

Lyme disease is boring

Under Our Skin tries to make Lyme disease seem like the most terrifying illness anyone could ever get, and that ticks are going to take over the universe or something. The filmmakers grossly exaggerate the severity of Lyme disease, and the intensity of the required treatment.

Lyme disease is not that scary

The filmmakers try to make Lyme disease seem like it’s as debilitating and dangerous as cancer or something. While the symptoms of Lyme disease can be pretty nasty, it’s still pretty tame compared to the ailments you could possibly suffer from. Early symptoms of infection include: fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes. If left untreated, symptoms can get markedly worse but it’s still very treatable. Lyme disease can be treated easily with a course oral antibiotics and symptoms will resolve quickly in the vast majority of cases. A very small number of patients may still experience minor symptoms following antibiotic treatment up to 6 months, however I am unable to find a study in any credible journal that symptoms will persist beyond that. A study in Pediatrics studied long-term neuropsychological outcomes of children who had facial palsy as a result of Lyme disease, and found that “The neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease 7 to 161 months earlier are comparable to those who did not have Lyme disease”. Another study published in JAMA also found that the frequency of symptoms following Lyme disease treatment occurred no more often than in the group that never had Lyme disease in the first place.

Lyme disease doesn’t do that

Under Our Skin makes numerous outlandish statements about the possible effects of Lyme disease, none of which are true. According to one “Lyme Literate MD”:

At this point I’ve had many women who’ve gotten pregnant, who’ve lost the baby or they give birth to a baby who has Lyme. The babies don’t have– the developmental growth may be off. Their IQ may be lower. They may develop seizures. They may have other neurological problems because it was not known that the mother has Lyme.

There is no evidence to suggest this is the case, and it’s been studied to a rather large extent. One study tested 2,000 mothers for Lyme disease at their first prenatal visit and at delivery, and found that there was no risk of fetal death, prematurity, or congenital malformations associated with having Lyme disease at the time of conception or during pregnancy. There is no evidence that Lyme disease during pregnancy results in a child having a lower IQ, or has led to the development of neurological problems in children. Furthermore, there is no evidence that a mother with Lyme disease can pass it on to her child.

Chronic Lyme disease is fake

Under Our Skin heavily promotes the idea that Lyme disease can turn into a chronic, persistent infection that requires the long-term use of antibiotics. The Infectious Disease Society of America (ISDA) held a special review panel about their Lyme treatment guidelines in 2006 and unanimously concluded that there is no existing evidence of a chronic Lyme infection and attempting to treat it can be dangerous. A good portion of the film is dedicated to trying to disprove the findings of scientists using anecdotes and conspiracy theories. Chronic Lyme advocates even managed to convince a Connecticut attorney general to investigate the ISDA for possible conflicts of interests on the part of the those who wrote the ISDA guidelines. In 2010, another board review was conducted of the 2006 guidelines, and the guidelines were upheld unanimously.

There are a large number of “medical” organizations that solely exist to try to legitimize chronic Lyme disease as a diagnosis, based on weak scientific evidence. These organizations also work tirelessly to lobby for legislation that prevents medical board sanctions against doctors who use long-term antibiotic therapies to treat “chronic Lyme”. Also on their agenda is forcing insurance companies to pay for long-term antibiotic treatments. In Pennsylvania, ILADS (a Lyme Literate organization) is currently trying to pass legislation that would force physicians to complete two hours of Lyme disease CME and require that they include input from ILADS in creating the Lyme disease CME requirements. There is an overwhelming scientific consensus that long-term antibiotic therapies provide no benefit for Lyme disease. Dr. Lipson covered the investigation by the Connecticut attorney general in 2009, and the fight is still ongoing.

Lyme Disease probably won’t kill you but quack treatments just might

Under Our Skin tries to claim that Lyme disease can be deadly, when that isn’t really true. Lyme disease is one of the least deadly illnesses in existence, since 1985 only 9 deaths have been recorded out of over a million cases. Assuming that there were 30,000 cases every year from 1985 to 2019, your chances of dying if you get Lyme disease are .00091%. Despite no real evidence of long-term negative effects or high chances of death, the documentary advocates risky antibiotic treatments from “Lyme Literate” MDs. A number of the LLMDs in the film have been sanctioned by their state medical boards for prescribing unnecessary long-term antibiotic therapies for the treatment of Lyme disease.

Early on in the film it shows a woman who believes she has chronic Lyme disease meeting with an LLMD. He said that she would need 6 to 8 months of antibiotic therapy and he will need to put a catheter in. He was, of course, referring to a peripherally inserted central catheter (PICC line). Apparently in the chronic Lyme community the use of PICC lines to administer antibiotics over a long period time is quite common. There are even stories online of children having PICC lines inserted and administering IV antibiotics themselves. There is no reason to have a PICC line inserted for the treatment of Lyme disease as IV antibiotics are rarely recommended. There are many risks associated with long term antibiotic use in general, especially when you’re giving those antibiotics through a PICC line. You don’t have to look hard to find stories of people dying because of various complications of PICC lines or long-term antibiotic use for the treatment of “chronic Lyme disease”. The CDC published a report of three patients dying from infections resulting from a PICC line inserted to give antibiotics over a long period of time to treat “chronic Lyme disease”. To reiterate, the evidence shows that there is no benefit from the use of antibiotics for longer than the recommended guidelines. The CDC’s states in their report:

These cases highlight the severity and scope of adverse effects that can be caused by the use of unproven treatments for chronic Lyme disease. In addition to the dangers associated with inappropriate antibiotic use, such as selection of antibiotic-resistant bacteria, these treatments can lead to injuries related to unnecessary procedures, bacteremia and resulting metastatic infection, venous thromboses, and missed opportunities to diagnose and treat the actual underlying cause of the patient’s symptoms. Patients and their health care providers need to be aware of the risks associated with treatments for chronic Lyme disease.

The many amazing moments of Under Our Skin

Under Our Skin features many unforgettable and hilarious moments and it would be irresponsible for me not share them with you.

World’s strangest conspiracy theory?

Under Our Skin presents the most ridiculous conspiracy theory I have ever heard. The major conspiracy theory is that the CDC, and physicians in academia, are conspiring to suppress the severity of Lyme disease and keep patients from expensive treatments. According to the “science writer” on-screen (anyone can call themselves that), it was a perfect storm of a couple different events starting with:

1980, the United States said it was okay for government institutions and universities to patent and profit from live organisms. So the Lyme disease organism was discovered in 1981, and all of a sudden there was the equivalent of an Oklahoma land grab, people looking under their microscopes, patenting pieces of the organism, so the people that are credited for being the Lyme disease experts no longer shared information about a new, really dangerous pathogen.

The ruling she is presumably referring to is Diamond v. Chakrabaty in 1980, which did not rule that universities and government institutions could patent and profit from live organisms. The ruling allowed genetically modified organisms to be patented, but does not extend to “newly discovered products of nature”. This well established in many cases long before this ruling such as in the Supreme Court case Funk Brothers Seed Co. V. Kalo Inoculant Co. where the court stated:

Their qualities are the work of nature. Those qualities are of course not patentable. For patents cannot issue for the discovery of the phenomena of nature. See Le Roy v. Tatham, 14 How. 156, 175. The qualities of these bacteria, like the heat of the sun, electricity, or the qualities of metals, are part of the storehouse of knowledge of all men. They are manifestations of laws of nature, free to all men and reserved exclusively to none.

Basically, what she is claiming is utter nonsense and reflects flagrant dishonesty or ignorance of even basic legal concepts. It gets better:

The other thing was the rise of managed care. Insurance companies and HMOs realized that if they can get researchers in universities to define diseases and write guidelines for diseases a certain way, then they could help manage the escalating medical costs.

Her argument almost seems reasonable if you don’t think about it in the slightest. There are researchers, universities, and government health organizations researching diseases around the world, the US insurance companies paid all of them off? It would take a massive amount of money to pay off people who have it pretty good already, and researchers would incur a huge amount of risk in participating in a scheme like this. If someone working for the NIH or CDC did what she’s suggesting, they would almost certainly be charged with fraud, and their careers would certainly be over if caught. Lyme disease occurs in other nations too, what do they recommend? The European Center for Disease control also says that Lyme disease should be treated with appropriate antibiotics for a few weeks. Are they on a US insurance company’s payroll too?

Now for my favorite part of this conspiracy:

really what this means is, the people who protected public health, so, like, the CDC, and the NIH and universities. Who didn’t have any commercial interests, all of a sudden, they were partners with big pharma.

Here’s the problem, the NIH and CDC don’t really have financial interests. They work for the United States government, they’re bankrolled by an organization that literally prints money. This is by far the weirdest conspiracy theory I have ever heard.

Lyme disease basement research/Lyme disease causes everything guy

About 15 minutes into the film we are introduced to Dr. Alan MacDonald, who researches Lyme disease on his own time, in his basement, with his little Maltese dog named Travis. According to him the view that the bacteria that causes Lyme disease doesn’t stay around in the body very long will be disproven. To date, there is no evidence that symptoms following antibiotic treatment for Lyme disease are the result of a persistent bacterial infection. He also believes that the Lyme disease bacteria is responsible for Alzheimer, Lou Gehrig disease, Parkinson disease, and multiple sclerosis, because he was able to find the DNA of the spirochete that causes Lyme disease in 7 out of 10 brain DNA samples. His reasoning is that if a spirochete like syphilis can cause dementia, then the Borrelia spirochete could also do that. The problem with his theory is that Lyme disease is pretty rare in most parts of the world, and many parts of the world will never see a case of Lyme disease, while the diseases he believes Lyme disease cause are common throughout the world.

Anecdotes vs. evidence

Under Our Skin, like all quack documentaries, is filled with testimonials.  The problem with testimonials is that most people are poor historians and couldn’t present their own medical history accurately if they tried. They could also be actors or just mistaken, lying about or exaggerating their symptoms. Under Our Skin is different from most quack documentaries because they actually have testimonials from experts which always come before or after showing someone giving a ridiculous opinion or anecdote with no evidence to back it up. Just to give you an idea of how ridiculous it gets: they show an interview with a researcher stating that the scientific evidence shows there is no benefit to long-term antibiotic treatment. They follow it up with an anecdote from a LLMD’s secretary who claims that patients who received long-term antibiotics seemed to be doing better afterwards. Another absurd example is when they try to prove that Lyme disease is everywhere by filming one woman driving in her car and pointing at houses claiming that the person who lived there had Lyme disease. I have no idea how anyone is supposed to take the testimonials in the film seriously.

Conclusion: A cult classic

Under Our Skin is a documentary designed to sell viewers on a fake illness that supposedly comes from a real illness. Dr. Lipson’s post back in 2009 examining a study that surveyed households a month after viewing the film suggests it might actually be successful. Throughout researching this article, I have tried to identify anything about Lyme disease that makes it something you should actually worry about over any other illness. Lyme disease is uncommon even where it’s the most prevalent, and the only hard part about treating it is finding a pen to write ‘Doxycycline’ on a prescription pad. Lyme disease is the most overhyped illness of all time. The horror stories you hear about it are a million times worse than it actually is. It’s a bacterial infection that causes temporary neurological symptoms and can be treated with oral antibiotics; that’s it.

The story of how Lyme developed a reputation of being this incredibly dangerous disease that you should be terrified of is far more interesting than the disease itself. There is no such thing as ‘chronic Lyme’ but there is an online cult obsessed with it. I’m being quite serious when I use the term ‘cult’, as I think it’s accurate to call online chronic Lyme support groups cults. However, chronic Lyme cults differ from how we would usually define a cult in a few key ways. Chronic Lyme cults (CLCs) differ from normal cults in that they don’t form around a charismatic leader, however believers flock around doctors they consider to be heroes.  The last thirty minutes of the film are dedicated to portraying “LLMDs” as heroes standing up against the medical establishment to protect their patients. The reality is that these physicians practice substandard medicine to treat Lyme disease or are administering dangerous treatments to patients for a condition that does not exist. Practitioners in the film were reported by other physicians for following unusual practices in treating Lyme disease because they were following unusual practices in treating Lyme disease. The evidence shows that there is no benefit to long courses of IV antibiotics to treat Lyme disease. Furthermore, practitioners being sanctioned for substandard practices in the treatment of Lyme disease is not going to make physicians practicing competent medicine afraid to treat patients with Lyme disease (which the film argues.

An article in the Psychiatric Times on the nature of cults provides a list of traits of people who are most prone to join cults, some of which are particularly applicable. One of these traits is a low tolerance of ambiguity, and the film’s many testimonials showcase this. One woman’s son was born with an unspecified neurodegenerative condition, she claims that she had Lyme disease when she was pregnant and that her son was born with Lyme disease and that was the cause of his condition. While it’s a sad state of affairs, there is no evidence that being treated for or having Lyme disease during pregnancy will result in any neurodegenerative conditions in children. Many CLC websites promote the idea that Lyme disease causes or mimics the symptoms of autism. There is no evidence that Lyme disease causes or mimics the symptoms of autism, and research has shown there is no correlation. These people want a reason for why something terrible has happened to them that science might not have a great answer for, and ‘chronic Lyme’ gives them a simple, digestible answer.

The most notable characteristic of cults also exhibited by the chronic Lyme cults is how they treat critics and non-believers. The chronic Lyme disease cult is very passionate and has a long history of protesting the investigation of doctors treating Lyme outside established guidelines, and harassing doctors who do not want to incorporate pseudoscientific treatments into their practices. Whenever a “Lyme Literate” physician is investigated by the medical boards or taken to trial for questionable practices, a chronic Lyme cult protest can always be found. Researchers and physicians who speak out against chronic Lyme are often the target of harassment campaigns in the form of baseless complaints to the board of medicine, death threats, protesting their place of work, and libelous online blogs. One physician received 11 complaints to the board of medicine shortly after speaking out against the use of long-term antibiotics to treat the illness, and simply stating that there is no evidence that chronic Lyme disease exists. All of the complaints were dismissed, and his record is still spotless, but it made him deeply afraid to even talk to the media. One of his colleagues wrote to the medical board stating:

“A complaint campaign to the board is just the latest escalation in a guerrilla war against physicians, scientists and federal officials who are not inclined to view Lyme borreliosis as the Fifth Horseman.” Since the campaign, Steere’s friends say that he has grown more and more depressed, though he wouldn’t say so publicly. “This is criminal what is being done.”

However, the chronic Lyme cult would not stop in their attempt to harass him, the director of the Lyme Disease Coalition said: “There will be a day of reckoning”.

It’s easy to see hardcore believers of chronic Lyme as mentally ill given their actions, but it’s important to remember that they’re also victims of an incredibly successful health misinformation campaign. There is more inaccurate information about Lyme disease on the internet than accurate information. When searching “Lyme Disease” online, the first result that isn’t from the CDC, Mayo, or WebMD is a link to LymeDisease.org. Surely you would think that LymeDisease.org is a credible source of Lyme information…right? Not quite. There are Lyme Disease support groups, Lyme disease organizations, and articles in The New York Times talking about the “Lyme Controversy”, all of which promote the idea that Lyme disease is a life-altering, possibly chronic condition. There are Lyme disease support groups in Australia, when there is no evidence that Lyme disease even occurs in Australia.

People who claim to suffer from chronic Lyme disease may not be suffering anything related to Lyme disease but they can still have real illnesses. They can be suffering from an untreated illness, such as one man who was treated for ‘chronic Lyme’ that actually had a brain tumor that would’ve been treatable without surgery if found sooner. It’s likely that people claiming to suffer from chronic Lyme have somatic symptom disorder. According to the APA: “Somatic symptom disorder involves a person having a significant focus on physical symptoms, such as pain, weakness or shortness of breath, that results in major distress and/or problems functioning. The individual has excessive thoughts, feelings and behaviors relating to the physical symptoms. The physical symptoms may or may not be associated with a diagnosed medical condition”. The more I check the research against the claims of the documentary, the weirder this documentary appears to me. Under Our Skin is a very strange film for an audience who in all likelihood, already has their minds made up. This documentary is as educational as the information videos on the Scientology YouTube channel and I would advise steering clear.

Posted by Braden MacBeth

I'm a software engineer in Pennsylvania.