Chronic Lyme disease myth – reviewing the evidence

Editor’s note – this article has been substantially updated and republished here. Please read and comment there. Thanks.

Lyme disease is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia. Of the three species, Borrelia burgdorferi is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii are more prevalent in Europe. The disease is named after the towns of Lyme and Old Lyme, Connecticut, where a number of cases were initially identified in 1975.

Borrelia is transmitted to humans when bitten by infected ticks belonging to a few species of the genus Ixodes, called “hard bodied” ticks. Although deer ticks, Ixodes scapularis, Ixodes pacificus, or Ixodes ricinus, are commonly considered to be the vectors for Borrelia infection, some of the other species in the Ixodes genus can transmit the disease. Lyme disease is the most common tick-borne disease in the United States.

The initial symptoms of Lyme disease include feverheadachefatiguedepression, and a circular skin rash called erythema migrans (EM). If the Borrelia infection is not treated quickly, later symptoms may involve the joints, heart, and central nervous system. There is generally only one known treatment for the infection–antibiotics including doxycyclineamoxicillin, and cefuroxime. The symptoms usually disappear after antibiotic treatment.

From this rather straightforward disease, a whole cottage industry has arisen around the chronic Lyme disease myth – it claims that the Lyme disease is never really killed and it persists for months or years.

The Chronic Lyme disease myth

 

The problem with delayed or inadequate treatment of Lyme disease is that it can lead to the more serious symptoms, which can be disabling and difficult to treat. Difficult, but science-based medicine provides sufficient evidence that it can be successfully treated, especially with antibiotics.

And this is where the pseudoscience begins. There is a vocal group, the International Lyme And Associated Diseases Society, made up of patients, doctors and other advocates, that is pushing a belief that the Borrelia bacteria can hide out in the body and persist even after treatment, causing a vague list of symptoms, from night sweats and depression to back pain and vertigo. They call this disease, chronic Lyme disease (CLD).

This group, and others who share this belief, argue vehemently that a cure requires not weeks but months or years of strong antibiotics. And they also believe that the disease sometimes just goes into remission, with frequent relapses. On the ILAD website, they attempt to portray the disease as an almost impossible disease to treat:

[infobox icon=”quote-left”]Chronic Lyme disease patients may face a long hard fight to wellness. People with chronic Lyme can have many debilitating symptoms, including severe fatigue, anxiety, headaches, and joint pain. Without proper treatment, chronic Lyme patients have a poorer quality of life than patients with diabetes or a heart condition.

The fact is Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available which leaves many—patients and physicians alike—relying on the so called “telltale signs” of Lyme disease: discovery of a tick on the skin, a bull’s eye rash, and possibly joint pain. However, ILADS research indicates that only 50%-60% of patients recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter anti-inflammatory medications such as Ibuprofen, joint inflammation is often masked.

Based on these statistics, a significant number people who contract Lyme disease are misdiagnosed during the early stages, leading to a chronic form of the disease which can prove even more difficult to diagnose and treat. Lyme disease is often referred to as the “great imitator” because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment. ILADS is committed to the prevention of chronic Lyme disease.[/infobox]

The blogosphere is filled with stories, always anecdotal, about this chronic form of Lyme disease. In an article from a few years ago, Laurie McClellan described how her husband got ill from an unknown disease in 2009. She wrote:

[infobox icon=”quote-left”]Pat (her husband), who’d been climbing mountains a few years ago, now struggled to walk a city block. Two doctors were telling us that he had a certain disease, that it was treatable, and that he could recover. But the standard medical authorities were telling me that this condition didn’t exist and that the proposed treatment was ineffective and harmful.” With no improvement in his condition over a year, they went to a Lyme disease clinic, where, despite negative tests for Lyme disease, Pat “was given prescriptions for a sophisticated regimen of drugs to control his symptoms, plus multiple antibiotics to fight the infection. He would need to take the drugs for the next year or so. He started swallowing some twenty-five pills a day, and the pace of his recovery picked up.[/infobox]

McClellan also tells the story of a friend’s daughter:

[infobox icon=”quote-left”](She was) an honor-roll student who took several dance classes each week, she became so fatigued that she had to sit out much of her senior year of high school. She suffered from joint pain so severe that she sometimes just lay on the sofa and wept, and she lost her ability to read. One neurologist declared that she was merely anxious, but another doctor diagnosed chronic Lyme disease. After a year of antibiotics, she was well enough to start college.[/infobox]

Although this anecdote is compelling and seems like it indicates some serious disease, it is purely subjective. She’s not describing a diagnosis, just general complaints that can be indicative of many other disorders or diseases.

Using her own anecdotes and that infamous University of Google research, McClellan chose to accept a diagnosis of chronic Lyme disease for her husband, despite the lack of a positive diagnostic test.

Laurie McClellan is a science writer, so my expectations for her critical thinking skills is high, so why would she accept a diagnosis of chronic Lyme disease despite the evidence that it doesn’t exist? Why wouldn’t she consider alternative diagnoses that make more sense? Whatever the reason, the pull of the simplistic pseudoscience is too hard to resist, even for a science writer.

 
 

Refuting the chronic Lyme disease myth

 

According to an article in The Lancet by a group of infectious disease physicians from Johns Hopkins, who generally eschew pseudoscience, have stated that:

[infobox icon=”quote-left”]these (chronic Lyme disease) advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science.” The Hopkins group even go as far as stating that “advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments.[/infobox]

Here’s what we know. Almost all infectious disease researchers agree that the Borrelia bacteria causes Lyme disease and can stay in the body for years, if not treated correctly. However, nearly all of these researchers state that a short course of antibiotics is enough to wipe out the infection. There is absolutely no evidence that, in some mysterious way, Borrelia “hides” somewhere in the body to avoid the antibiotics. There is no evidence that Borrelia is antibiotic-resistant (especially since the reservoir for the bacteria is not humans, but other animals like rodents and deer).

The advocacy for CLD has been around for a few years, but there just is no peer-reviewed evidence in support of an epidemic of persistent yet invisible Lyme disease infections. One of the hallmarks of pseudoscience is the failure to progress towards additional evidence of its claims.

Furthermore, the internet has been flooded by false information about Lyme disease, and, by extension, the so-called chronic Lyme disease.

lyme-disease-ribbon

More science refuting the myth of CLD

 

However, it’s more than the fact that there is little science supporting the claims, we have solid evidence that refutes the claims regarding the existence of chronic Lyme disease. For example, the National Institute of Allergy and Infectious Diseases (NIAID) has funded three clinical trials that failed to show any benefit of long-term antibiotic therapy in individuals who have no evidence of an active Borrelia infection.

  • Klempner et al. concluded that “there is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease. However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo.
  • Krupp et al. concluded that “this study does not support the use of additional antibiotic therapy with parenteral ceftriaxone in post-treatment, persistently fatigued patients with PLS (post-Lyme syndrome).”
  • Fallon et al. published an article discussing research where chronic Lyme disease patients were treated for Lyme disease and presented with objective memory impairment tests. The group that received antibiotic therapy showed slightly greater improvement than the placebo group at 12 weeks, but at 24 weeks, both the antibiotic and placebo groups had similar improvement from the baseline results. However, because of the adverse effects of the IV antibiotic therapy, which afflicted about 26% of the antibiotic group, the authors concluded that because of the limited and minor improvement in cognitive function in combination with the adverse effects, the antibiotic therapy was not an “effective strategy for cognitive improvement in these patients and more durable and safer treatment strategies are still needed.”
NIAID concludes that “carefully designed, placebo-controlled studies have failed to demonstrate that prolonged antibiotic therapy is beneficial. Although isolated success stories are always good to hear, such reports alone are not sufficient grounds to support a therapeutic approach.” In other words, not only is there no evidence that chronic Lyme disease exists, but there is extremely high quality evidence, published in high impact, peer-reviewed journals, that the accepted therapy for chronic Lyme disease, long-term antibiotic therapy, doesn’t work.

Another study published in the New England Journal of Medicine found “that repeat episodes of erythema migrans (the typical rash) in appropriately treated patients were due to reinfection and not relapse.” They examined the genetic makeup of the bacteria found in these rashes to determine that they were new, not recurrent, infections. In other words, these particular patients, who had claimed to have a chronic Lyme disease probably were bitten by another tick.

In a review article, published in 2011, seven studies were conducted in endemic areas that included nearly 2,000 patients with suspected Lyme disease. It was determined that “only 7–31% had active Lyme disease and 5–20% had previous Lyme disease. Among the remainder, 50–88% had no evidence of ever having had Lyme disease.” These patients probably had alternative medical diagnoses like chronic fatigue syndrome or fibromyalgia.

In a recent review of research into Lyme disease (and again, chronic Lyme diseases), the author, Dr. Eugene Shapiro of the Departments of Pediatrics, Epidemiology of Microbial Diseases, and Investigative Medicine, Yale University Schools of Medicine and of Public Health, states:

[infobox icon=”quote-left”]In a minority of patients who receive recommended treatment for Lyme disease, objective signs resolve, but subjective symptoms such as fatigue, arthralgia, and myalgia persist for weeks, months, or longer. These are classified as post– Lyme disease symptoms if they persist for less than 6 months and as post–Lyme disease syndrome if they are disabling and persist for 6 months or longer.

The cause and frequency of this problem are unclear. Such nonspecific symptoms are common in the general population without Lyme disease. The positive predictive value of serologic tests for Lyme disease in patients with only nonspecific symptoms is poor, so misdiagnosis based on false positive serologic test results is common.

Moreover, extensive publicity as well as misinformation on the Internet about “chronic” Lyme disease, a condition for which there is no clear definition or scientific evidence of its existence, may increase anxiety on the part of patients about the consequences of the illness and may confound assessments of treatment outcomes. In patients with two or more episodes of erythema migrans, often occurring years apart, it has been shown that the episodes were caused by different strains of bacteria, indicating reinfection rather persistence of infection with the original organism.[/infobox]

Let me summarize what Dr. Shapiro wrote:

  1. The symptoms described by the CLD suffers are no different than general complaints made by the general population without Lyme disease.
  2. Because tests for Lyme disease can cause false positives (but rarely, false negatives), some people who are diagnosed with Lyme disease and treated for the disease, may not have an improvement in symptoms, because they never had the disease in the first place.
  3. There is so much misinformation for CLD on the internet, it may actually cause an increase in anxiety for patients leading to confounding of patient assessments post-treatment.
  4. Many individuals who complain that they have CLD actually have a reinfection of Lyme disease from a different strain of bacteria. They got another tick bite.

The CDC and chronic Lyme disease myths

 

The Centers for Disease Control and Prevention is probably the best science-based fountain of information about all infectious diseases. The CDC, in it’s best dry and objective tone of voice, states this about CLD (or what they call Post-Treatment Lyme Disease Syndrome, or PTLDS):

[infobox icon=”quote-left”]It is not uncommon for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months. Although sometimes called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome” (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and “auto–immune” responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter’s syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research. Clinical studies are ongoing to determine the cause of PTLDS in humans.

Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications. The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.

If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available.[/infobox]

The CDC does state that there continues to be research into PTLDS. This is normal, and it doesn’t indicate that the CDC believes that CLD or PTLDS exists, it just wants to find out what may be the causes, beyond the thoroughly debunked chronic infection.

The CDC does state that many bacterial infections have lingering symptoms past the original infection. That’s science, but it does not support the chronic Lyme disease myth – in fact, it dismisses it.

Finally, the CDC states, about as emphatically as I’ve ever seen it state, that “prolonged courses of antibiotics” do not help. They’re no better than placebos.

Summary, the TL;DR version

 

Many public health and infectious disease specialists, using evidence published in the best journals, are troubled by the claims made about these chronic Lyme disease myths – they are being pushed by charlatans who have less than honorable intentions for these patients.

The Johns Hopkins group stated rather harshly, “the relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.”

Furthermore, the one group that almost always looks for ways to prevent paying out long term medical costs, the health insurance industry, refuses to pay for treatment of chronic Lyme disease (pdf). You might believe it’s because they want to save money from paying for these treatments, but since the since says “CLD does not exist”, it’s useless, like paying for homeopathy or acupuncture. They’d rather have the physician find the real diagnosis, and treat that.

There is no evidence that chronic Lyme disease exists. Real research says so. The CDC says so. The best research says so. There is no evidence that long-term antibiotic therapy does anything for those who have the symptoms associated with the nonexistent chronic Lyme disease.

To be fair, there are some articles, always published in low quality journals, that try to argue, without scientific evidence, that CLD is real. However, unless evidence is published in strong, peer-reviewed publications that support the existence (and subsequent treatment methods) for this disease, then standard treatment of Lyme disease should be considered the gold standard.

There is no chronic Lyme disease. And we should quit wasting money trying to treat a nonexistent disease.

Editor’s note: This original version of this article was originally published in 2012. It has been completely revised and updated to include more comprehensive information, to improve readability and to add current research.

Key citations

The Original Skeptical Raptor
Chief Executive Officer at SkepticalRaptor
Lifetime lover of science, especially biomedical research. Spent years in academics, business development, research, and traveling the world shilling for Big Pharma. I love sports, mostly college basketball and football, hockey, and baseball. I enjoy great food and intelligent conversation. And a delicious morning coffee!
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  • fransje

    http://www.scirp.org/Journal/PaperInformation.aspx?PaperID=52890#.VK2lFivF8WI.
    Here is scientific research.. you can download it so you can print it and take the time to read it before you write short minded articles about a disease we are still learning about. You can not jump to a conclusion about Lyme yet, so please do not write as if you can. Your writing is purely subjective, and though you make a compelling ( and manipulative) argument it feels as if you have a negative opinion about people with lyme disease who do not seem to get better after antibiotics. You should revise this article again anno 2015. There is not enough knowledge yet because LYME is a mystery! Please keep an open mind and an open heart.

    • You’re cherry picking ONE article. From a fake medical center. Written in a predatory journal that has useless peer-review–you pay to publish.

      I have an open mind you, despite your personal attack. You have NO science supporting your beliefs. And that’s why they’re called beliefs, because you suspend science to prove what isn’t true.

      I have science on my side, which is about as open-minded as one can get. You’re the close-minded misinformed fool. You find something, really bad, that you use to confirm your pre-ordained beliefs. That doesn’t fly here.

      Now, go away, and get a real education in biomedical sciences, specifically microbiology and infectious diseases. Then let’s talk. Yes, get off your lazy ass and get science.

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