Chronic Lyme disease–myth or science?

November 20, 2012 Filed in: Evidence based medicine | Infectious disease | Pseudoscience

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 Ixodes species can transmit the disease.

The initial symptoms of Lyme disease include fever, headache, fatigue, depression, 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. In general, the infection and its symptoms can be treated, if started early, by antibiotics. Lyme disease is the most common tick-borne disease in the United States.

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. 

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. 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:

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. 

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

McClellan tells the story of a friend’s daughter who 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.”

From her own personal story, her friend’s daughter, and reading stories on the internet, 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.

Science

According to an article in The Lancet by a group of infectious disease physicians from Johns Hopkins, “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.”

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 believe that a short course of antibiotics is enough to wipe out the infection. The debate about chronic Lyme disease has been has been fought 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. 

On the other hand, the National Institute of Allergy and Infectious Diseases (NIAID) 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. 

A recent 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.

What the Skeptical Raptor says

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.”

There is no evidence that chronic Lyme disease exists. There is no evidence that long-term antibiotic therapy does anything for those who have the symptoms associated with the nonexistent chronic Lyme disease. Unless some 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. 

Key citations

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Comments (48)

48 Responses to “Chronic Lyme disease–myth or science?”

  1. Ron Karroll says:
    May 3, 2013 at 00:21

    Just curious about this…

    "On the other hand, the National Institute of Allergy and Infectious Diseases (NIAID) 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."

    Then you cite these 3 studies which seem to indicate that there is something, which may be referred to as chronic lymes or other issue, which is not treatable with long term antibiotic therapy. Which is all well and good until you state…

    "There is no evidence that chronic Lyme disease exists. There is no evidence that long-term antibiotic therapy does anything for those who have the symptoms associated with the nonexistent chronic Lyme disease".

    So you're saying that they studied and have proven that antibiotics are not helpful for a disease that doesn't exist?

    Hopefully you can see my confusion. You can't really state something doesn't exist and then point to a study which points out that antibiotics have no benefit in treating that illness/an illness commonly described as chronic lymes. You're basically disproving a portion of your argument while validating another.

    So, to summarize more simply you say… (and please correct me where I'm wrong because I'm looking for truth).

    1) Chronic Lymes doesn't exist.
    2) Dr's who say it does, use dangerous levels of antibiotics to cure this phantom illness, and thus are dangerous to their patients.
    3) Check out these studies where antibiotics were not successful in treating patients with symptoms that are consistent with those commonly referenced by proponents of the theory for the existence of chronic lymes disease. (WTF?)
    4) Chronic lymes doesn't exist.

    Those 3 studies… well two because the link to one of them isn't functioning, basically state that there are persistent symptoms for some people and long term antibiotic treatment is not effective. YET simply by stating that there are persistent symptoms is indicative of, in the very least, something….

    The 3rd study even says as much in it's background statement: "It is controversial whether prolonged antibiotic treatment is effective for patients in whom symptoms persist after the recommended antibiotic treatment for acute Lyme disease." These studies also have objective measures of some impairment in their test subjects. My point is that there is nothing in these studies disproving the existence of "chronic lymes" disease and a treatment not working for such an illness is not immediate evidence of non existence. As said in pulp fiction, "The absence of evidence is not evidence of absence."

  2. Cat Kozich says:
    March 25, 2013 at 05:03

    Tell you what… Since "Chronic Lyme Disease doesn't exist", how about you allow me to donate some of my blood to you. After all, I was treated with 21 days of Doxycycline 13 months ago… So you've nothing to worry about, right?

  3. Shannon Devine says:
    January 7, 2013 at 08:26

    I wonder why I never got a reply? Maybe you are busy watching the DVDs and getting the actual science and not anecdotes and hiding in shame? Be a grown up and admit you were wrong, write a new article with all the facts. No one's perfect but people who can admit they were wrong at least get a touch of respect.

  4. Lime dieseae | Hubweekly says:
    November 28, 2012 at 09:56

    [...] Chronic Lyme disease–myth or science? [...]

  5. Alan Burdge says:
    November 28, 2012 at 08:53

    Oh I forgot my wife would have died if she let the mainstream medical system treat her!
    She is alive today because of a Lyme litterate Doctor!
    Watch the video!

  6. Alan Burdge says:
    November 28, 2012 at 08:50

    WOW!
    You are cluless and Heartless.
    Main stream Medical should be ashamed how they treat people with tick borne infections.
    I have never known a person that had only Lyme disease!
    Everyone that I know with tick borne illnesses have a few or many infections. ( many call them co infections I call them Infections! )
    Watch how main stream medical treated my wife and I guess people like YOU are happy with the way your fellow Americans are treated.
    As Congressman Chris Smith from New Jersey said this year.
    America needs a Manhattan type project to get to the bottom of tick borne illnesses.
    Strange when Congressman Chriss Smith held Congressional hearing this summer and invited the CDC, the NIH and the IDSA none of them showed up to defend their sides of the arguments!
    They should be removed from their positions for NOT getting involved in this issue and putting it to bed once and for all.
    REASON WHY THEY WILL NOT SHOW UP IS.
    THEY WILL LOSE THE FIGHT!
    The system is full of corruption and they are better off not defending themselves in a sitting like congressional hearings.
    They would rather spew their lies in the newspapers or Magazines.
    then in Washington DC at a Hearing!
    You should ALL be ashamed of yourselves!
    WHAT ARE THEY HIDING?
    My wife testified at a Human Services Hearing in Harrisburg Pa.
    Link below.

  7. Rose Fox Johnson says:
    November 28, 2012 at 08:18

    What the hell is wrong with you? Until you have suffered with Late Stage Lyme or know someone that is suffering first hand then maybe your views wouldn't be so tainted. It is people like you that make it difficult for us who suffer with a chronic illness to be able to get the needed medical attention we deserve. Your views are one-sided. I can find articles the same as you did that dispute your findings. Until the Government admits their involvement( Which will never happen) and the big pharma and insurance companies take responsibility this will never be cured. And I would hate for you or one of your loved ones to ever have to deal with Lyme disease and no I am not wishing it on anyone. I for one have empathy for sufferers unlike you. All I can say is hogwash!

    • Kelly Demers says:
      November 28, 2012 at 08:36

      Well said Rose, and so true… I love how others have opinions yet never lived in the life of many who suffer Lyme.. Shame on you..skeptical Raptor…

  8. Shannon Devine says:
    November 22, 2012 at 18:44

    So you are saying that there should be strong evidence behind guidelines for treatment and diagnosis of Lyme? I suggest you read this. http://archinte.jamanetwork.com/article.aspx?articleid=226373 Basically, the IDSA writes many of its guidelines with the supporting evidence for the guideline being expert opinion (level III ). I suggest you check their "strong" suggestions in the Lyme Guidelines and if they are backed up with level I, II, or level III evidence.

    Also, your "myth" section is backwards. I would like you to show me the study that shows a bacteriological cure with 2-6 weeks of antibiotics. Let me save you some work. It doesn't exist. There ARE studies that show symptoms get better with antibiotics and can return when they are stopped.

    You can tell when people want the truth versus when they want their way to be right only. When scientists/doctors/people choose to ignore part of the research, they do not want the truth.

    I am a skeptic. By definition, I don't believe anything anyone tells me. I check the facts for myself. I don't check SOME of them. I don't let others guide me to only one side by saying the other side is "nuts."

    There is way too much evidence to put here but in short: The writers of the IDSA guidelines and those associated with this game they have been playing, saying it is not chronic, they KNOW it is. They don't just have a different opinion. I can respect another's opinions. Let that sink in. They know. And they have known for years.

    Don't feel too bad. You're not the only one they have fooled.

    I recommend Dr. Elizabeth Maloney's DVDs on Bye.

  9. Bob Blackburn says:
    November 21, 2012 at 19:05

    Have you read the Ember's study…do you know what the standard of treatment for Whipple's disease is and the probability of relapse?

  10. Bob Blackburn says:
    November 21, 2012 at 19:03

    I truly hope neither you or nor you loved ones ever experience the living hell TBD can be.

    • Michael Simpson says:
      November 22, 2012 at 17:43

      Yes, just because you have some mysterious non-Lyme disease, you resort to the old "I hope you get it, just so you'll be convinced of my pseudoscientific beliefs" fallacy. Nice.

    • Bob Blackburn says:
      November 23, 2012 at 04:30

      You are a total freaking idiot…I did NOT say I hope you get it just the opposite! You also chose to ignore the Ember,s and Whipple's.

  11. Troy Elliott Eckhardt says:
    November 21, 2012 at 14:01

    Your Lancet quote could be beautifully showcased on your strawman argument page.

    I know a sure way to turn the Skeptical Raptor into an overnight believer in chronic Lyme. It's the route I took to belief myself: infection.

    • Michael Simpson says:
      November 21, 2012 at 14:38

      Anecdotes have no value in science. I have no access to your medical records, nor any information that you had any disease but your statement. As for whether I'm a "believer" or not, I only accept science and evidence. I have no doubt you had something. I have doubt that you had anything called "chronic Lyme disease."

  12. Bob Blackburn says:
    November 21, 2012 at 07:37

    Rather slanted views. CFS and fibro are not medical diagnoses…rather descriptions of symptoms.

    • Michael Simpson says:
      November 21, 2012 at 14:39

      Fibromyalgia is described in DSM IV, and will be in DSM V. That's a disease.

    • Janelle Wiley says:
      November 27, 2012 at 23:02

      CFS is a poor description of a real disease, myalgic encephalomyelitis. Listed in WHO as a neurological disease since the '50s.
      However there are no less than 4 inclusion criteria in active use, one requiring nothing more than longlasting fatigue of new onset (seriously, that could be just about anything).
      Because of the definition issue, and because of a devastating lack of funding, (and for some other reasons), the science is a bit muddy.
      But there are some really good leads, mentioned, for example, in the International Consensus Criteria (the newest definition):
      http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

  13. Donna MacPherson Lugar says:
    November 21, 2012 at 06:47

    Having read all of the articles stated above (and so, so much more!), I have to admit that I have concerns about my own clinical diagnosis of a vector borne disease (Bartonella and who knows what else). However, I have seen first hand how antibiotics, supplements, a change in diet, etc. have improved my quality of life. My concern for those diagnosed with a vector borne disease is that every patient is different and therefore every patient cannot be treated with the same standard treatment. IF you catch the tick on you a standard course of antibiotics should be sufficient. However, a very small percentage ever see the tick. The bull's eye rash is a definitive sign of infection; however, apparently the rash can come and go and not everyone sees a rash. Therefore, no idea how long someone has had the disease. As each person is affected differently (some get arthritis, others have their hearts affected, some have vision issues, others have neurological symptoms – you get my drift). Why would anyone think that every one of these individuals should be treated the exact same way? I'm not a Doctor but it seems like common sense to me that each person needs to be clinically diagnosed based on symptoms (that way we can find out if we have Lyme, Bartonella, Rocky Mountain Spotted Fever, Babesiosis, etc., etc.) and then each one needs to be treated differently and separately. Chronic Lyme is a misnomer that has received way to much press – in my opinion. Those that remain sick did not receive adequate treatment or may have a co-infection that was never diagnosed. You are sent for an ELISA test for Lyme. Not usually sent for any other tests unless you fight for them. Most don't even know about co-infections. So much to learn!

    • Michael Simpson says:
      November 21, 2012 at 14:40

      You're providing me with anecdotes, which I immediately deprecate. I have written about the worthlessness of supplements, diets, or anything else for health issues.

    • Michael Simpson says:
      November 22, 2012 at 17:44

      Wolf, show me some peer reviewed studies in high impact journals.

      Your English is fine. :)

    • Lucretia Perilli says:
      November 28, 2012 at 07:54

      Re Simpson's request for the almighty "peer reviewed" evidence: This is such an incredibly tired, out-dated argument that has been the fall-back for the establishment for far too long. I guess that many involved are so brainwashed (understandably) by the far too powerful Medical Industrial Complex that they have not yet figured out that most medical journals in the US and elsewhere are merely bought and paid for by Big Pharma. The Boards of these journals are comprised of industry-funded shills (I used to work in this industry). So, the demand for "peer-reviewed" evidence — seen as the Holy Grail — no longer holds water. The general public is catching on to this sham. I suppose that the medical establishment will be the last on board. Tragic, absolutely.

    • Kelly M. Bray says:
      November 28, 2012 at 09:09

      Lucretia Perilli You are a PR hack with a degree in costume design.

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