Lyme Disease: Misdiagnosed, Underreported and Epidemic

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This is yet another example of the US medical-industrial complex run amok. Lyme is one of the most serious epidemics of our time. Yet the opinions of 2% of the medical community are dominating the beliefs and practices of the mass majority of practicing Lyme physicians!

The number of Lyme disease cases in the United States has doubled since 1991. The Centers for Disease Control and Prevention estimate that there are nearly 325,000 new cases each year—making Lyme disease an epidemic larger than AIDS, West Nile Virus, and Avian Flu combined. Yet, only a fraction of these cases are being treated, due to inaccurate tests and underreporting. Each year, hundreds of thousands go undiagnosed or misdiagnosed, often told that their symptoms are all in their head.

You may well ask, “If it’s such a huge epidemic, why are we not hearing anything about it?” The media is silent because doctors and insurance companies alike dismiss it as being a hypochondriacal illness, just as they’ve done for years to sufferers of fibromyalgia and chronic fatigue syndrome. It can be expensive to treat—untold numbers have it, and there is no protocol that is completely effective for all patients, no sure-fire cure. And at the root of it all, one Lyme disease organization, in its desire for power and control, is pitting doctors against doctors, prompting health insurance companies to deny medical claims at an alarming rate, and leaving suffering patients stuck in the middle.

Lyme disease (named after the town of Lyme, Connecticut, where a number of cases were identified in 1975) is a seriously complex multi-system inflammatory disease that is triggered by the bacterial lipoproteins (BLPs) produced by spiral-shaped bacteria called Borrelia burgdorferi, also called Bb. Bb are difficult to isolate, grow, and study in the laboratory. Moreover, there are five subspecies of Bb, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection.

Transmission of Bb occurs primarily through the bite of ticks, though fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15%. The disease affects every tissue and every major organ system in the body. Clinically, it can appear as a chronic arthalgia (joint pain), fibromyalgia (fibrous connective tissue and muscle pain), chronic fatigue, brain fog, immune dysfunction, and neurological disease. Lyme disease may even be fatal in severe cases.

Standard medical treatment usually involves antibiotics. In some patients, Lyme disease can be fairly easy to treat, while in others, it can feel like a never-ending battle. One reason treatment is difficult is because Bb has an in vitro replication cycle of about seven days, one of the longest of any known bacteria. Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better. Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard ten days would cover thirty life cycles. To treat Lyme disease for a comparable number of life cycles, treatment would need to last thirty weeks.

In addition, there are frequently co-infections—other tick-transmitted diseases—that come along for the ride, most often Babesia, Anaplasma, Ehrlichia and Bartonella. If left untreated, their continued presence increases the length of the illness and prevents successful treatment of Lyme disease.

Chronic Lyme Disease (CLD) is a systemic, debilitating condition which persists despite antibiotic therapy. Nearly a decade ago, Irwin Vanderhoof, PhD, a professor at the New York University Stern School of Business, estimated that CLD cost society nearly $1 billion per year. That estimate has since skyrocketed to about $2 billion per year, including diagnosis, treatment, and lost wages, according to Contingencies, but this being an actuarial trade publication for the insurance industry, the real figure is probably much higher.

Four NIH trials have validated the severity of CLD. The well-documented studies looked at Lyme disease patients at various points from six months to nine years after antibiotic therapy was completed. As many as 62% of them were found to have arthritis or recurrent arthralgias, neurocognitive impairment (including objective memory impairment), neuropathy or myelopathy, persistent musculoskeletal pain, and dysesthesia (a condition caused by lesions of the nervous system that causes abnormal sensations such as prickling, itching, burning, or electrical shock), often with persistent, severe fatigue.

Despite these studies, many physicians continue to deny the existence of CLD, which can hinder efforts to find a solution—and without consensus from mainstream Western medicine, insurance companies will rarely provide treatment, and disability coverage is routinely denied.

As Raphael Stricker et al. noted in a 2005 article, the political battle over Lyme disease features two polarized medical camps. The dominant camp, represented by the Infectious Diseases Society of America (ISDA), adheres to the philosophy that the disease is “hard to catch and easy to cure,” and that chronic infection with Bb is extremely rare or nonexistent. The opposing camp, represented by the International Lyme and Associated Diseases Society (ILADS), views Lyme disease as an underreported and growing menace that often fails to respond to standard antibiotic therapy, resulting in a chronic debilitating infection that requires prolonged antibiotic treatment. This chart outlines the differences in their approaches to treatment.

This difference of opinion has resulted in frequent denial of treatment for patients with CLD and prosecution of healthcare providers who treat these patients, and over the past decade the “Lyme Wars” have become progressively more acrimonious.

ISDA is controversial not only because of its views, but because of serious conflicts of interest alleged against its leadership. In 2008, then Connecticut Attorney General Richard Blumenthal, now a US Senator, conducted an antitrust investigation of ISDA which uncovered serious flaws in its 2006 Lyme disease guidelines. “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”

One big problem is that most doctors follow a standard (but arbitrary) two-tier diagnostic protocol, requiring both a positive ELISA and Western Blot test. But despite the fact that this approach fails to detect up to 90% of cases and does not distinguish between acute, chronic, or resolved infection, these criteria have been used as rigid diagnostic benchmarks that have prevented individuals with Lyme disease from obtaining treatment.

Moreover, physicians not familiar with the complex clinical presentation of Lyme disease frequently misdiagnose it as multiple sclerosis, lupus, Parkinson’s, Alzheimer’s, rheumatoid arthritis, motor neuron disease (ALS, Amyotrophic Lateral Sclerosis—Lou Gherig’s disease), Multiple Chemical Sensitivity Syndrome (MCS), or numerous other psychiatric disorders such as depression and anxiety.

According to ILADS, other tests for Lyme disease include antigen capture, urine antigen, and polymerase chain reaction. Each has advantages and disadvantages in terms of convenience, cost, assay standardization, availability, and reliability. One hopeful area of research looks at live cultures under a fluorescent microscope, and measures the live organisms in the bloodstream, so one can keep retesting to see which therapies are working and which aren’t.

This is a critical difference. An antibody test only shows whether you have been exposed to the illness. A live organism test shows whether you are recovering or have recovered. A very promising live test, the Bowen test, was severely attacked by critics of long-term Lyme treatment and is no longer available.

Many insurance companies consider alternative tests “experimental and investigational,” and won’t pay for them. If more accurate tests aren’t allowed, the determination of Lyme depends on fallible tests, which greatly limits insurance companies’ financial involvement. Moreover, the therapies allowed by insurance companies are the most conservative ones—intravenous antibiotics at most—and only for a limited time under limited circumstances. If they don’t fix you, that’s just too bad!

Comparatively few MDs in the country are knowledgeable about Lyme disease; they are often called Lyme-literate MDs. Most LLMDs know about Lyme disease because they have studied it independently. But they are often harassed by the medical community, health officials, state medical boards, and insurance companies for diagnosing and treating Lyme patients beyond the standards set by the establishment. Notable cases were filed against Joseph Burrascano in New York and Joseph Jemsek in North Carolina, forcing them into bankruptcy or leaving them no alternative but to close or relocate their practices. A few Lyme physicians have had their medical licenses revoked. Some LLMDs have discontinued treating Lyme patients due to the harassment. Finding one nearby or who will take new patients can be a real struggle for patients.

There are a great many alternative therapies being used to treat Lyme disease. One reason for this is that while many therapies show promise, none is a definitive cure. Besides antibiotics, many integrative physicians prescribe a program of vitamins, nutritional supplements, herbs, and antiviral and antibacterial neutraceuticals.

Hyperbaric oxygen therapy has offered significant alleviation of symptoms, and intravenous vitamin C is once again proving successful. Traditional Chinese Medicine protocols (Chinese herbs, acupuncture, etc.) frequently achieve positive results—they are generally the same for Lyme disease as for Chronic Fatigue Syndrome and fibromyalgia, since their symptoms so frequently overlap. Other important research is being done by Dr. Rich Van Konynenburg, who also sees a link between Lyme and CFS.

What if you become disabled from Lyme disease? Currently, Lyme disease is not listed in the Social Security Administration’s impairment listing manual, so disability would be denied on the basis of an LD diagnosis alone. However, Lyme sufferers may apply for Social Security Disability or Supplemental Security Income benefits based on their resulting physical restrictions and functional limitations.

A documentary film, Under Our Skin, follows the stories of patients and physicians fighting for their lives and livelihoods, presenting a haunting picture of a healthcare system and a medical establishment all too willing to put profits ahead of patients.

In the months ahead, ANH-USA will work to educate public figures about the tragedy of long-term Lyme sufferers and how the medical system is failing them. This is a complicated problem, one that cannot be solved by a single bill in Congress or regulatory change. But as dominant as private insurance companies are in denying that long-term Lyme disease exists, the federal government pays for almost half of healthcare today in the US—that figure is higher, about 60.5%, if you figure in government subsidies for private insurance, and government purchases of private health insurance for public employees such as police officers and teachers—and could easily turn this situation around through its Medicare and other reimbursement policies.