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Lyme Disease: Facts, Quotes & References

Chronic Lyme
Diagnosis & Treatment
Dollars & Sense
By the Numbers
Lyme-Like Diseases
Quackery & Advocacy

Tired of the flood of cult-like disinformation, anecdotes, and Usenet patient narratives. Here are some handy, referenced facts about Lyme disease. Additional references and new information are welcome.
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LD Backgrounder- Deaths

The Bottom-Line. The impotence drug, Viagra, has caused more deaths than Lyme disease.

Worldwide, Lyme disease probably has been directly responsible for fewer than a dozen deaths. Most of those deaths have been due to carditis or "heart block" (1).

One such death was reported in 1990 in a 31-year old farmer in Suffolk, England (2).

Carditis occurs in 4-10% of Lyme cases. Heart block generally resolves completely with antibiotic treatment. Complete heart block rarely persists more than 1 week and "long-term prognosis appears to be excellent" (3).

A 36-year-old Japanese woman presented with progressive cerebellar signs and mental deterioration of subacute course after her return from the USA. A necropsy 4 years after her initial neurological signs revealed multifocal inflammatory change in the cerebral cortex, thalamus, superior colliculus, dentate nucleus, inferior olivary nucleus and spinal cord. The cerebellar ataxia and subsequent mental deterioration are unusual clinical features of Lyme neuroborreliosis (4).

"Perivascular or vasculitic lymphocytic inflammation was detected…. Large areas of demyelination in periventricular white matter were detected histologically and by MRI in one patient. The disease had a fatal outcome in this patient"(5).

A soldier acquired near-fatal Lyme carditis in Europe and presented in Massachusetts (6).

Lyme disease may have been a contributing factor in other deaths. For example:

The causative agent of Lyme disease, Borrelia burgdorferi, does not appear to be a terribly virulent bug since Lyme disease can be managed successfully even in HIV-infected patients. For example:

"Tick-borne illnesses are being reported increasingly often. Unlike Lyme disease, which tends to be indolent, Rocky Mountain spotted fever and ehrlichiosis can kill and so must be recognized and treated promptly. Other diseases (eg, babesiosis, tularemia)...can also be fatal but are treatable with antibiotics"(13).

  1. Alan G. Barbour. Lyme Disease:The Cause, the Cure, the Controversy. Johns Hopkins University Press, 1996, pp. 14, 43.
  2. Cary NL, et al. Postgrad Med J 1990;66(772):134-6.
  3. McAlister HF, et al. Ann Int Med 1989;110:339-345
  4. Kobayashi K, et al. Dement Geriatr Cogn Disord 1997 Nov-Dec;8(6):384-90
  5. Oksi J, Brain 1996 Dec;119 ( Pt 6):2143-54
  6. Welker, RD. Mil Med 1993 Oct;158(10):684-5.
  7. Kirsch M, et al. JAMA 1988;259:2737-9.
  8. Marcus, LC, et al. Ann Int Med 1985;103:374-6.
  9. Oksi J, et al. Clin Inf Dis 1993;16:392-6.
  10. Dudle, G. Dtsch. Med. Wochenschr. 1997 Sep 26;122(39):1178-80.
  11. Cordoliani, F. Br J Dermatol 1997;137:437-9.
  12. Garcia-Monco JC. Am J Med 1989;87:325-8.
  13. Middleton, DB. Postgrad Med 1994 Apr;95(5):131-9


LD Backgrounder- Pregnancy

The Bottom-Line. The number of documented cases of adverse outcome in pregnancy is too low to correlate Lyme disease with birth defects or fetal abnormalities. But why take a chance? Pregnancy and infections just don't mix.

"…recent prospective data have been reassuring" (1).

"A causal relationship between borrelial infection and fetal adverse effects has not been proven, and for at least some such cases a reasonable explanation (not associated with Lyme borreliosis) was found" (2).

"There was no relationship between the presence of placental spirochetes and the results of Lyme serology or the pregnancy outcome" (3).

"One pediatric neurologist was following 3 children…labeled as having 'congenital Lyme disease,' but none of the 3 met our case definition. None of the other pediatric neurologists surveyed had ever seen a child whose mother had been diagnosed as having Lyme disease during pregnancy. We conclude that congenital neuroborreliosis is either not occurring or is occurring at an extremely low rate in areas endemic for Lyme disease"(4).

"Maternal exposure…before conception or during pregnancy is not associated with fetal death, prematurity, or congenital malformations taken as a whole. We have insufficient numbers of women who were seropositive…to determine if this subgroup of exposed women are at a moderately increased risk of having a child with a congenital abnormality" (5).

"Transplacental transmission of Borrelia burgdorferi was not proved" (6).

"Although there have been three documented cases of such transmission it appears to be rare, and there is no established association with congenital anomalies" (7).

"Anomalous findings could not be attributed to B. burgdorferi…. Our data do not imply the need for serological screening in pregnancy…" (8).

"Whether any or all of these associations are coincidentally or causally related remains to be clarified by further investigation" (9).

"Two cases of transplacental transmission of Borrelia burgdorferi have been associated with fetal death and cardiac malformation. Different anomalies were found in each case; therefore, a cause and effect relationship cannot be determined…" (10).

"Transplacental transmission of B. burgdorferi has been documented in a pregnant woman with Lyme disease who did not receive antimicrobial therapy" (11). "Of the 19 pregnancies evaluated…none resulted in a child with a congenital heart defect. However, other adverse outcomes were found, including intrauterine fetal demise in the second trimester, prematurity, and developmental delay with cortical blindness. None of the adverse outcomes have been documented to be caused by Lyme disease. Outcomes of 14 of the [19] pregnancies were completely normal" (11).

"There was no association between congenital heart defect and maternal tick bite or maternal Lyme disease within 3 months of conception or during pregnancy.... A woman who has been bitten by a tick or is treated for Lyme disease during or before pregnancy is not at increased risk for giving birth to a child with a congenital heart defect." (12)

"Borrelia infections during pregnancy were considered dangerous, since initial reports indicated that infectious complications in the fetus may result. More recent studies have refuted these fears." (13)

  1. Silver, HM. Infect Dis Clin North Am. 1997;11(1):93-7.
  2. Maraspin V, et al. Clin Infect Dis 1996;22:788-93.
  3. Figueroa, R et al. Gynecol Obstet Invest, 1996;41:240-3.
  4. Gerber, MA. Pediatr Neurol, 1994;11:41-3.
  5. Strobino, BA. Am J Obstet Gynecol 1993;169(2 Pt 1):367-74.
  6. Hercogova, J. Cesk Gynekol, 1993;58:229-232.
  7. "How to diagnose and treat Lyme disease in children," Available On-line.
  8. Nadal D. Eur J Pediatr, 1989;148:426-7.
  9. MacDonald, AB. Southampton Hospital, NY. Rheum Dis Clin North Am, 1989;15:657-77.
  10. MacDonald AB, et al. NY St J Med. Nov. 1987;615-6.
  11. CDC. Morbidity and Mortality Weekly Reports (MMWR). June 28, 1985, 34(25);376-8, 383-4.
  12. Strobino B, Abid S, Gewitz M. Am J Obstet Gynecol 1999 Mar;180(3 Pt 1):711-6.
  13. Schaumann R, Fingerle V, Buchholz K, Spencker FB, Rodloff AC. Clin. Inf. Dis. 1999;29:955-956 .


LD Backgrounder- Children

The Bottom-Line. The prognosis is excellent.

"The prognosis is excellent for those with early Lyme disease who are treated promptly with conventional courses of antimicrobial agents" (1).

"Forty-one children with strictly defined LD were compared…. No differences between LD and control groups were found for any of the numerous neuropsychologic measures. No perceived long-term deterioration in cognitive, social, or personality areas was reported by parents. Children appropriately treated for LD have an excellent prognosis for unimpaired cognitive functioning" (2).

"Our experience suggests that these more severe complications [CNS deficits, seizures, myelitis, encephalomyelitis, cranial neuropathy] are infrequent and that the clinical course in most children is milder and shorter than that reported for adults" (3).

A study of five children concluded that children "may develop neurocognitive symptoms along with or after classic manifestations of Lyme disease. This may represent an infectious or postinfectious encephalopathy related to B. burgdorferi infection" (4).

"Neurologic manifestations of Lyme disease are common in children, among whom the incidence of Lyme disease is higher than among adults. Cranioneuropathies, in particular palsy of the facial nerve, occur in approximately 3-5% of children with Lyme….. Children with only non-specific symptoms such as headache, arthralgia or fatigue commonly are misdiagnosed as having Lyme disease. A number of carefully conducted follow-up studies have indicated that the prognosis is excellent for children with Lyme disease who have been treated with standard antimicrobial regimens" (5).

"Frequent pitfalls included misidentifying rashes as erythema migrans, ascribing nonspecific symptoms to Lyme disease, failing to ascribe fleeting objective symptoms to Lyme disease, and inappropriate antibiotic therapy for patients with Lyme disease. CONCLUSION. Errors in the diagnosis and treatment of Lyme disease in children are common" (6).

"Children residing in an endemic area who present with vague symptoms are being diagnosed with and treated for Lyme disease without clinical or serologic documentation. In addition, fear in the lay community may be inducing doctors to diagnose Lyme disease in patients with symptoms that may be suggestive of an alternative diagnosis" (7).

"We conducted a population-based retrospective cohort study off the coast of Massachusetts. Twenty-five children who met the CDC case definition for prior LD were compared with 26 children without LD from the same community. All children with LD received antibiotics during the acute phase of their disease. At a mean of 3.2 years from the initial manifestation of LD, children with prior LD did not have a higher prevalence of musculoskeletal or neurological symptoms, examination abnormalities, abnormal EKG, or behavioral difficulties, compared to children with no history of LD. Children who receive appropriate antimicrobial therapy for LD appear to have no demonstrable longterm morbidity" (8).

  1. Gerber MA, et al. NE J Med, 1996;335:1270-4.
  2. Adams WV. Pediatrics, 1994;94:185-189.
  3. Belman AL, et al. Neurol, 1993;43:2609-14.
  4. Bloom BJ, et al. Pediatr Infect Dis J 1998;17(3):189-96.
  5. Shapiro ED, Seltzer EG. Semin Neurol 1997;17(1):39-44.
  6. Feder HM Jr, Hunt MS. JAMA 1995;274(1):66-68.
  7. Rose CD, et al. Clin Pediatr (Phila) 1994;33(11):663-668.
  8. Wang TJ, et al. J Rheumatol, 1998;25(11):2249-53.


LD Backgrounder- Chronic Lyme

The Bottom line: It exists. But the incidence in untreated patients is low (10-15%) and the cause (ongoing infection or irreversible damage from earlier infection) is still unknown.

Two clinical trials funded by the National Institutes of Health (NIH) are attempting to determine the cause of chronic Lyme and the best treatment for it. One study is based on the NIH campus; the other is located at the N.E. Med. Ctr. in Boston. Despite claims by Lyme advocates that there are thousands of people suffering from chronic Lyme disease both of these treatment studies are suffering from a lack of patients. Both are actively trying to find and recruit patients. In fact, NIH recently issued a call for additional centers "capable of conducting...clinical trials...for the treatment of chronic Lyme borreliosis" (1). Where are all the chronic Lyme patients?

"In adults a subtle encephalopathy characterized primarily by memory impairment, irritability and somnolence may occur months to years after classic manifestations of Lyme disease" (2).

"By far the most common manifestation of chronic neuroborreliosis is encephalomyelitis…. There is no generally accepted therapeutic regime for the treatment of neuroborreliosis, but recent studies have shown ceftriaxone 2 g/day and cefotaxime 6 g/day to be effective in acute and chronic courses. The duration of treatment--at least 2 weeks in the acute forms and 3 weeks in the chronic forms of neuroborreliosis--is very important for successful treatment" (3).

"Lyme disease has been increasingly recognized as a cause of cognitive loss, including problems with memory and attention. What remains unclear is the extent to which cognitive deficits in patients treated for [Lyme] are reversible" (4).

"Although late manifestations of Lyme disease are often caused by persistent infection with B. burgdorferi, chronic symptoms in some patients may have an autoimmune mechanism" (5).

The diagnosis of neuroborreliosis or chronic Lyme has always been difficult to confirm. Recently an enzyme (called, matrix metalloproteinase) in cerebrospinal fluid has been identified as a tentative marker for Lyme neuroborreliosis. This enzyme may eventually help in the diagnosis of neurologic and persistent Lyme (6).

"We think that many patients and physicians incorrectly view Lyme disease as a chronic and often incurable illness that requires multiple courses of antibiotic treatment to cure or control disease" (7).

"The patient's belief in the chronicity of Lyme disease and the need for multiple courses of antibiotic treatment was evident in patients with previous Lyme disease and patients with no evidence of Lyme disease. Although these patients were informed by [Yale] physicians that they did not have Lyme disease and would not benefit from additional antibiotic therapy, 20% to 31% obtained additional evaluations for Lyme disease and 11% to 21% received additional antibiotic treatments during the follow-up period. In addition, more than 50% of these patients disagreed with the diagnosis assigned by their [Yale] physicians, and most expressed concern that they may have had ongoing Lyme disease infection" (7).

"Many patients who believe they have 'chronic Lyme disease' carry a list of 40 symptoms attributed to Lyme disease. This list has been distributed by some 'Lyme specialists' and Lyme disease support groups. These symptoms match those of a psychosomatic disorder or depression" (8).

"Patients and families were frequently unwilling to accept that they or their children did not have Lyme disease when told that they really had fibromyalgia. This steadfast conviction that Lyme disease is the correct explanation for all clinical problems is quite common in our experience. Thus, two psychological factors are of great concern in the Lyme disease and 'Lyme anxiety' epidemics: depression and diagnosis-fixation" (9).

"In the small percentage of patients who have treatment resistant chronic Lyme disease, autoimmune mechanisms may play a role in persistent disease." (10).

  1. Chronic Lyme Borreliosis Clinical Trial- NIH/ALI. Commerce Business Daily. Oct. 9, 1998. PSA#2198.
  2. Bloom BJ, et al. (Pediatr Infect Dis J 1998;17(3):189-196).
  3. Kaiser R. J Neurol 1998;245(5):247-255.
  4. Gaudino EA et al. Arch Neurol, 1997;54:1372-6.
  5. Lyme Disease - a Monograph and Guide for Washington Physicians. ().
  6. Perides, G. J Infect Dis, 1998;177:401-08.
  7. Reid MC et al. Ann Int Med 1998;128:354-62.
  8. Berman DS and Wenglin BD. Am. J. Med. 1995;99:440.
  9. Sigal LH. Am. J. Med. 1995;99:440.
  10. Hu LT, Klempner MS. J Clin Immunol 1997 Sep;17(5):354-65.


LD Backgrounder- Diagnosis and Treatment

The Bottom line: Diagnosis is getting easier. Antibiotic treatments are effective, and a new vaccine may lead to a reduction in the number of new cases. But too many tests and too many antibiotic prescriptions are still being ordered for presumed cases of Lyme disease.

"Lyme disease is a curable and preventable infection" (1).

"…tests designed to have high specificity can reliably rule out Lyme borreliosis in patients with chronic symptoms, thus preventing unnecessary treatment with antibiotics" (2).

"…most patients consulting physicians for tick bites received prophylactic antibiotic therapy of unproven efficacy and underwent unnecessary, costly serologic testing" (3).

"For most patients with early Lyme disease or Lyme arthritis... intravenous therapy appears to be no more effective than oral therapy, is more likely to result in serious complications, and is substantially more expensive" (4).

"Overdiagnosis and overtreatment of Lyme disease are associated with inappropriate use of health services, avoidable treatment-related illness, and substantial disability and distress" (5).

"…it is important to note that among patients with active Lyme disease, 84% received oral antibiotic therapy for 28 days or less and 77% were free from symptoms at follow-up. This therapeutic success supports the findings of earlier studies and suggests that a single course of antibiotic therapy results in complete resolution of symptoms and cure for most patients with Lyme disease. The remaining patients with active Lyme disease (23%) reported persistence of nonspecific fatigue, arthralgias, and myalgias at follow-up. This symptom complex…is common and may take several months to resolve; however, the complex does not respond to repeated courses of antibiotic therapy" (5).

"…inappropriate testing and therapy are costly and expose the patient to risk of the adverse effects of administered antibiotics. …even in highly endemic areas, the probability of a false- positive test result is higher than the probability of a true-positive test result" (6).

Although an association with Lyme disease has been purported for numerous other syndromes, a definite causal relationship has not been proved in many cases. During a period of rapidly increasing awareness of Lyme disease, a high index of suspicion and poorly defined criteria for its presence have resulted in over-diagnosis of Lyme disease.

  1. American College of Physicians Initiative on Lyme Disease.
  2. Fawcett PT, et al. Clin Diag Lab Immunol 1997;4:85-8.
  3. Fix AD, et al. JAMA. 1998;279:206-210
  4. Eckman MH et al. Special Report. N.E. J. Med., 1997;337:357-63.
  5. Reid MC et al. Ann Int Med 1998;128:354-62.
  6. American College of Physicians. Ann Int Med, 1997;127:1106-08.
  7. Balcer LJ, Winterkorn JM, Galetta SL. J Neuroophthalmol 1997 Jun;17(2):108-21.


Last revised on 11 November 1999