Lyme Disease

The Chronic Lyme Debate

One of the most controversial issues in Lyme disease today is the question of chronic Lyme disease.  Some people, even after typical treatment for Lyme disease, have reported the recurrence of chronic, persistent symptoms of Lyme disease, including arthritis, fatigue, and neurological disorders.  Many people who claim to have chronic Lyme disease have experienced a decreased standard of living and are sometimes not able to work, care for their children, or partake in the activities they once enjoyed.  A handful of physicians have recounted cases in which chronic Lyme patients undergo a complete personality change, sometimes resulting in violent and criminal behavior.  A few physicians even claim that their patients have died of chronic Lyme disease.

Physicians and researchers who believe in the existence of chronic Lyme have stated that the Borrelia burgdorferi bacteria, which causes Lyme, has a dormant form which can actually “hide” inside human cells, making it difficult to detect and treat.  It is when the bacteria reemerge from this dormant state that they are said to wreak havoc on the body.  Neurologists taking brain scans of patients who have tested positive for Lyme disease have discovered, in some cases, severe hydrocephalus (water on the brain) leading to the compression of the brain tissue.  Autopsies on patients who allegedly died of chronic Lyme revealed massively deteriorated tissue throughout the brain and spinal cord.  They believe that the chronic version of the disease occurs when the initial form of the disease goes untreated for an extended period of time.

Other physicians, however, do not believe that these symptoms and disorders are necessarily the result of Lyme disease.  Some attribute the problems that patients experience to “post-Lyme syndrome,” stating that the symptoms of Lyme disease may persist for a while even after the bacteria is gone from the body.  Others believe that it may be the result of bacteria similar to B. burgdorferi.  Some say that the patients have some other condition, such as fibromyalgia, lupus, or ALS, and have been misdiagnosed with Lyme.  Still others say that patients are ill with some yet undetermined chronic condition, and latch onto chronic Lyme because they want to believe that they have a definable, treatable condition.  And, lastly, some physicians believe that chronic Lyme sufferers are not ill at all, and the whole problem is “just in their heads.”

More and more physicians do seem to be accepting the existence of chronic or persistent Lyme.  But the debate does not end there.  Some physicians believe chronic Lyme exists, but do not believe that patients gain any significant benefit from treatment.  Chronic Lyme is usually treated with intravenous antibiotics, and patients may have to receive injections for months, years, or the rest of their lives.  In 2001, a study by Mark S. Klempner, MD et al. (New England Journal of Medicine) claimed that chronic Lyme patients do not benefit from the intravenous antibiotic treatment.  Many physicians and insurance companies used the Klempner study to refuse treatment and insurance to chronic Lyme patients, claiming that treatment was not medically indicated and, in fact, irresponsible.  However, other physicians have stated that the study was flawed, and continue treating chronic Lyme patients.

The State of Rhode Island recognizes chronic Lyme disease as a real problem, but, in the absence of medical consensus, leaves treatment decisions at the discretion of physicians.  It does currently require insurers to cover the cost of chronic Lyme treatment.

Learn more about the Chronic Lyme Debate