Lyme disease is a chronic, multisystemic, neuropsychiatric, incurable disease caused by a tick bite. Lyme disease causes functional, chemical, and structural changes in the brain and affects nearly every body system. It is a cyclic disease, meaning that treatment regimes must address the ever-changing manifestations of the disease. This treatment process requires careful monitoring by a Lyme-disease specialist -- usually a neurologist or infectious disease specialist.
Misunderstandings about the patient's condition are common because often the patient "doesn't look sick," yet there numerous psychological, physiological, and brain chemical changes taking place constantly. Lyme disease can normally be treated very effectively with early detection and appropriate treatment. The patient does not have to be relegated to a life of suffering.
1883. A German physician records the first case of what is now known as Lyme disease. It has been epidemic in Europe for the last fifty years, and has spread to six continents. Lyme disease today has surpassed AIDS as the fastest-growing infectious disease in our country. Its victims include fetuses and newborn.
1970. A professor of dermatology in Wisconsin, Rudolph Scrimenti, reports the first instance in America of erythema migrans, the rash which is indicative of Lyme disease in many cases.
1975. Allen C. Steere, MD, a rheumatologist-in-training from Yale is sent to Lyme, Connecticut to investigate a cluster of cases of rashes and swollen joints reported by Polly Murray and Judy Mensch.
1975. Scrimenti hears about the Yale investigation and sends information to Steere and his colleagues about the EM rash and treatment with penicillin.
1977. A study published by Steere et al. claims discovery of a new clinical entity and names it Lyme arthritis. They treat with aspirin and steroids, consider it self-limited, and see no benefit from treatment with antibiotics.
1983. Second thoughts by the above doctor and his rheumatology colleagues who now admit that the disease is worldwide, more serious than originally thought. They start treatment with oral and intravenous antibiotics, and define three stages of Lyme disease that affect many organs including bone, muscle, connective tissue, heart, eyes, and the brain. The Lyme disease spirochetes can reach the latter within hours of injection, resulting in dementias that include Alzheimer's-like symptoms and clinical depression at any of the stages.
1986. Another about-face. No more stages. No more chronic Lyme disease. The rheumatologists now decide that persistent Lyme disease belongs in one of several syndromes which include those of chronic fatigue, chronic pain, or post-Lyme. When, in order to reassure the patient, they "contradict a previous diagnosis of Lyme disease by another doctor," they may also substitute hypochondria, fibromyalgia, or pseudo-Lyme. The patient may or may not be comforted by other alternates that Lyme mimics. These include dozens of diseases that have already shattered the quality of life for those dismissed by ignorant or misinformed physicians.
1997. Hope for the future? The National Institutes of Health awards $4 million to Tufts University for a study of chronic Lyme disease. Enrollment is proceeding, haltingly.
1999. Yale University and Smith Kline Beecham hustle a Lyme disease vaccine onto the market that is plagued by growing controversy. In the opinion of many scientists--including the chief investigator who won't take it himself--the vaccine may trigger the disease in one of its guises that include several other autoimmune diseases.
Given the above historical background, many physicians and patients never hear these truths:
(1) The federal government offers no guidelines for diagnosis or treatment, but admits that there are possibly more than two million cases of Lyme disease in the U.S.A., that only one- tenth to one-twentieth of actual cases are reported.
(2) Serological tests may not detect up to 60 percent of positive cases of Lyme disease. Inexperienced labs, working with unrealistic standards set by the government's restrictive epidemiological defininition, may fail to find Lyme bacteria hidden or camouflaged by the protein chaff that foils antibody and antibiotic alike. No current tests can prove that these Lyme disease spirochetes have been killed. Antibiotics may have cleared infection from the blood, but the germs may remain in sanctuary in other cells.
(3) In some areas, specifically on Eastern Long Island, at least 80 percent of deer ticks harbor Lyme disease spirochetes.
(4) More than 60 percent of infected humans never notice a bite or exhibit a rash.
(5) Serological tests for Lyme disease can only indicate antibodies. Dr. Kenneth Liegner reminds us that "Most symptomatic patients will have no antibody during the first 1-2 weeks after the tick bite," and that their detection may take weeks, months, even years.
(6) Untold numbers of city dwellers, weekenders, day-trippers and vacationers return home from endemic areas with flu-like symptoms that they and their physicians may never connect with Lyme disease.
(7) Thousands trust in religion, or treat themselves with home- style remedies or quack treatments, leaving the Lyme bacteria in permanent residence in their bodies.
(8) Many scientist-authors in medical journals, for whatever reason, play down Lyme disease. In their competition for peer review, and in their rush to alleviate the fear of Lyme disease, they may confound the public. The media translate the medical jargon, and spoon it out as their own "feel good" pap.
(9) Not only the academies, but thousands of doctors' offices, clinics, hospitals, medical cooperatives, government agencies, and insurance companies receive, and pass on, disinformation from the camp that claims Lyme disease is overdiagnosed and curable.
(10) Most insurance companies deny claims for treatment beyond the few weeks in which Lyme disease "should be cured" and admit that with Lyme disease patients they could be "on the hook forever." With AIDS patients, "We know they'll die." Some health insurance companies pay fees to university scientists for testimony and opinion.
(11) Many doctors are threatened by colleagues for diagnosing and treating Lyme disease. Several have been accused of profiteering from unnecessary therapies. One physician's medical, bank, and insurance records were seized by local district attorneys and the FBI. All these physicians have faced revocation of their licenses.
(12) As the disease progresses, Lyme patients show signs and symptoms of neurological and neuropsychiatric disorders ranging from loss of short-term memory, irritability, mood swings, anxiety and panic attacks, obsessive-compulsive behavior and attention deficit disorder, to other dementias including Alzheimer's. Clinical depression may affect Lyme sufferers at any stage, and ruin the lives of the majority of those with chronic Lyme disease. In the general population, the lifetime rate of attempted suicide is 18 percent for depressives and 24 percent for manic-depressives. These figures are taken from the Director of the Institute of Mental Health's paper read at Yale on November 16, 1989. The numbers that succeed in killing themselves, God help us, have been extrapolated by others as between two and one-half and five million.
In this year of the Lord 1999, more and more Lyme disease physicians and patients no longer wonder if some of the above truths are being withheld deliberately.
Douglas S. Dodge
About 1,200 words
45 Long Hill Farm
First Serial Rights
Guilford, CT 06437
Copyright 1999 D.S.Dodge
["This article was inspired by private correspondence from a young lady who was misdiagnosed for a year, was told she was crazy, and had to beg to be tested for Lyme disease. "I don't find anything that lets me know if Lyme is curable or not."]