Treatment wars: Chronic Lying Disease

In 2007, WDDTY took part in prolonging a hoax that is still going on, perhaps unwittingly whipping up support for a condition – and a potentially harmful pharmaceutical treatment – that was legislated into legitimacy by politicians against all available scientific evidence.

“Chronic” Lyme disease is a fertile hunting ground for quacks in the US, and increasingly elsewhere. It has been extensively studied, and there is no credible evidence to support it. That doesn’t stop people from claiming it as the cause of a variety of conditions including – naturally! – autism, and pursuing quack treatments, the most common of which are long-term antibiotics.

Self-diagnosed “sufferers” circulate details of “Lyme-literate” doctors who will prescribe these treatments. And in some places they cannot be stopped, because they successfully lobbied for legal protection.

All this is apparently fine, because it’s alternative.

Lyme disease: a leaky brain

By Tony Edwards, Vol. 18, no. 3, June 2007

Borellia burgdorferi, cause of Lyme disease, absent form most "chronic Lyme" patients.
Borellia burgdorferi, cause of Lyme disease, absent in most “chronic Lyme” patients.

This is a long “special report” that majors on the purported “chronic Lyme disease”. As with most literature on “chronic Lyme”, it freely mixes fact and fiction, rarely distinguishing between them – like basing a paper on unicorns on references to horses and references to unicorns, and claiming that the former supports the latter.

There is a genuine medical condition, post-treatment Lyme disease syndrome (PTLDS).

Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often 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, and clinical studies to determine the cause of PTLDS in humans are ongoing.

Centers for Disease Control and Prevention

The chronic Lyme advocates appear to reject this, principally it seems because there is no known cure. They would rather pursue a cure that doesn’t work for a disease that doesn’t exist. Nobody quite knows why.

Treatment wars

There are two main factions in the Lyme disease (LD) treatment wars: the IDSA (Infectious Diseases Society of America) vs the ILADS (International Lyme and Associated Diseases Society).

That’s like saying there are two main factions in the HIV wars: doctors and AIDS denialists. ILADS is a pressure group set up to promote the idea that chronic Lyme exists, primarily because medical science found not credible evidence that it does.

The IDSA claims that LD is primarily a short-term disease for which a short course of antibiotics is usually all that is necessary. The ILADS disagrees. Its members say that LD is a chronic, potentially recurring disease, and may need many months or even years of treatment with a cocktail of antibiotics.

This is not so much ILADS’ conclusion, but the assumption on which they base their entire existence: it’s a statement of their creed. The body has no scientific or medical standing.

A French review of the evidence showed that antibiotics are effective in 90 per cent of cases (Med Mal Infect, 2007; April 3; Epub ahead of print), lending support to the IDSA position.

Many other studies show the same thing. Lyme disease is an infection caused by the tick-borne spirochete bacterium borrelia burgdorferiW, and it can be objectively tested for. When the authors say that the infection is gone, they mean there is no evidence of borrelia.

However, two studies by Dr Mark Klempner and his colleagues at Tufts University in Boston, MA, have shown that even intensive antibiotic therapy for 90 days may not work in cases where LD symptoms persist despite treatment (N Engl J Med, 2001; 345: 85–92), lending support to the ILADS. “Profound fatigue,
myalgias, arthralgias, dysaesthesia, and mood and memory disturbances still persist after standard courses of antibiotic treatment for LD,” he says.

The criteria used are fundamentally different. The conclusions of Klempner (a study which was terminated early because it failed to show any benefit from the antibiotic treatment) says:

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.

 This is post-Lyme syndrome, a different thing from Lyme disease. In fact, most people with “chronic Lyme” have no evidence of past or present infection with borrelia, suggesting it may just be a more ideologically acceptable (to them) label for chronic fatigue syndromeW.

The idea that this lends support to ILADS is essentially editorial: there was no evidence of borrelia in the studied patients, and long-term antibiotics made no difference, so if anything it undermines the idea that the symptoms are of Lyme disease.

ILADS practitioners, therefore, usually take a more holistic approach, combining antibiotics with botanical remedies, nutritional supplements, diet, detoxification and homeopathy.

Oh good, woo bingo.

  • antibiotics are specifically contradicted by the study that supposedly supports ILADS
  • Botanical remedies means random herbs, generally chosen with no empirically verifiable basis.
  • Nutritional supplements are generally bunk unless a specific deficiency has been properly diagnosed (as opposed to being diagnosed by some quack diagnostic technique).
  • Diet is usually a flag for randomly excluding whatever food the nutritionist (never a dietician) defines as the bogeyman du jour.
  • Detoxification is bullshit.
  • HomeopathyW is bullshit.

Interestingly, pretty much the same collection of nonsense can be seen as the proposed cure for a vast range of medically vexing long-term conditions with on currently known cause. Of course the quacks concerned all tell you that they know the cause, but that’s the way it is with quacks: some call it monognosis.

A vaccine called Lymerix was marketed in 1998, but withdrawn four years later. GlaxoSmithKline, the manufacturers, blamed poor sales and the need for frequent boosters. Patients cited the high price tag and side-effects, including severe arthritis and even LD itself, problems which resulted in a class-action lawsuit.

This is a Lyme vaccine; WDDTY fall into the trap of failing to distinguish Lyme disease (characterised by the presence of borrelia burgforferi) with chronic Lyme (characterised by the fixed idea that the symptoms you have are caused by Lyme disease despite the absence of borrelia and in many cases the absence of any evidence you’ve ever even been exposed to it).

The main reason why Lyme disease is so difficult to treat may be because the causal bacteria are so wily. Borrelia has been called “one of the most complex bacteria known to man” (Chemotherapy, 2006; 52: 53–9). A further confounding factor is that Borrelia burgdorferi is rarely the only invader. Most LD patients are also found to be infected with multiple tick-borne pathogens, such as protozoans and other parasites.

Yes, that’s a complication of Lyme. It has nothing much to do with so-called chronic Lyme.

The diagnosis problem

Diagnosis is a major problem area due to the wiliness of the Borrelia bacterium.

The main diagnostic tests (ELISA, EIA and IFA) look for antibodies to Borrelia—they measure the body’s immune response to the bacteria. However, one of the difficulties is that, because Borrelia can hide in the body, the immune system can’t always detect it and make antibodies. This means that there’s a danger of false-negative results. In fact, one study showed the ELISA test to be wrong as much as half of the time (J Clin Microbiol, 1997; 35: 537–43).

This paper, Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program, reviews the competence of laboratories, not the tests themselves.

The idea that tests cannot identify Lyme is robustly contradicted by this study in which serum samples from Lyme patients and healthy donors were sent to laboratories over a three-year period. The conclusion:

These results suggest that stronger criteria must be applied for approving and continuing to approve commercially available kits for the serodiagnosis of Lyme disease.

How do you test the accuracy if you haven’t already assayed the sample and proven that it contains borrelia antibodies?

By 2007, this problem should have been fixed anyway, but once again the source does not actually support the claim WDDTY makes.

Lyme disease practitioners often use a back-up test called the Western Blot, which detects the DNA of Borrelia itself. However, this, too, is not fool-proof, as the DNA may not show up for weeks after the infection, if at all.

“Lyme disease practitioners” tends to mean the so-called “Lyme-literate doctors”; these are the people who prey on those who believe they have chronic Lyme.

Although new lab tests, such as IVIAT and QRIBb, are claimed to be more accurate, there is still no totally reliable laboratory diagnostic test. The absence of a definitive diagnosis simply serves to fuel the controversy as to what LD really is, and how best to treat it.

IVIAT is In-Vivo Induced Antigen Technology. No test is 100% accurate. The current test is ELISAW (enzyme-linked immunosorbent assay), which was probably also current at the time of the WDDTY article, and Western blotW, which is qualitatively pretty accurate and has been subject to significant development in quantitative accuracy.

One high-tech tool is a SPECT (single photon emission computed tomography) brainscan. Its high-resolution images can reveal characteristic abnormalities in the brains of LD victims, in particular ‘cerebral vasculitis’, believed to be the underlying cause of many Lyme disease symptoms.

This may well help in diagnosing the cause of the symptoms, but does not in any way  link them with Lyme disease.

The thing to focus on here is that if the tests detect no bacteria, and long-term antibiotics have no effect beyond placebo, then it’s fair to assume that bacteria are not to blame. Give people antibiotics for long enough and they will probably improve, through regression toward the meanW, but the antibiotics won’t have helped.

Interestingly, in 2007 the New England Journal of Medicine published A critical appraisal of “chronic Lyme disease”, Feder et. al., N Engl J Med. 2007 Oct 4;357(14):1422-30. Noting that the diagnosis of chronic Lyme disease is used by a few physicians despite a lack of “reproducible or convincing scientific evidence” (in effect a reversal of the problem WDDTY claims in the difficulty of detecting Lyme), the authors to describe this diagnosis as “the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections”.

Why choose 2007 to discuss this?

In 2006, Richard Blumenthal, the Connecticut Attorney General, opened an antitrust investigation against the IDSA, accusing the IDSA Lyme disease panel of undisclosed conflicts of interest and of unduly dismissing alternative therapies and chronic Lyme disease. 

So it looks as if WDDTY allowed an activist group to hijack is pages to drum up support for quackery – a not entirely unprecedented event. How did this all end up?

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. Views on the motivation and outcome of the investigation varied. Blumenthal’s press release described the agreement as a vindication of his investigation and repeated his conflict-of-interest allegations.

The IDSA focused on the fact that the medical validity of the IDSA guidelines was not challenged, and cited mounting legal costs and the difficulty of presenting scientific arguments in a legal setting as their rationale for accepting the settlement. A journalist writing in Nature Medicine suggested some IDSA members may not have disclosed potential conflicts of interest, while a Forbes piece described Blumenthal’s investigation as “intimidation” of scientists by an elected official with close ties to Lyme advocacy groups. The Journal of the American Medical Association described the decision as an example of the “politicization of health policy” that went against the weight of scientific evidence and may have a chilling effect on future decisions by medical associations.

The state of Connecticut went on to enact a law on June 18, 2009, “to allow a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease.” The states of Rhode Island California Massachusetts and New Hampshire have similar laws.

The expert panel’s review was published in 2010, with the independent doctors and scientists in the panel unanimously endorsing the guidelines, stating “No changes or revisions to the 2006 Lyme guidelines are necessary at this time,” and concluding long-term antibiotic treatments are unproven and potentially dangerous. The IDSA welcomed the final report, stating that “Our number one concern is the patients we treat, and we’re glad patients and their physicians now have additional reassurance that the guidelines are medically sound.” (Wikipedia).

And it’s this outcome that is truly staggering. IDSA’s guidelines are completely vindicated, yet laws have been passed and remain on the books mandating that doctors are allowed to use a treatment that the evidence says is ineffective and hazardous, based on the idées fixes of people who have decided, against all rational and objective evidence, that their symptoms must be caused by Lyme, and lobbying by a cottage industry that has grown up around feeding the delusion and profiting from it. When pharmaceutical companies try to invent diseases in order to sell a treatment, people are rightly up in arms.

This process of legislating the validity of something that science rejects has been termed “legislative alchemy“.

What Doctors Don't Tell You
Why don’t doctors tell you about chronic Lyme disease?

Because the best available evidence says it doesn’t exist.

3 thoughts on “Treatment wars: Chronic Lying Disease”

  1. Pingback: Daily Overload – News in short (03-12-2013) « The Skeptical Bear

Leave a Reply