JAMA
Vol. 283 No. 23,
June 21, 2000
To the Editor: Dr Seltzer and colleagues1 report that 69%
of patients with Lyme disease (LD) had 1 or more persisting symptom since
acquiring the disease but conclude that this outcome was no different from that
of control patients. In an earlier article,2 some of the same
authors reported that less than 5% of patients with LD had any long-term
sequelae but now report that "only" 19% of patients have
LD-associated symptoms.
There are a number of methodological problems that detract
from the validity of the current study by Seltzer at al. First, a telephone
interview is not an appropriate means to obtain information about subjective
symptoms; patients must complete the Medical Outcomes Study 36-Item Short-Form
Health Survey (SF-36) and other questionnaires on their own for the information
to be valid. Second, additional, well-validated questionnaires regarding
fatigue, pain, and memory should have been used to better assess these
symptoms; there is, as yet, no single, ideal, self-report instrument for
multi-symptom disorders. Third, an additional control group of subjects from a
non-endemic area should have been included. Fourth, having patients themselves
decide what were and were not LD-specific symptoms was inappropriate, given our
current inability to scientifically corroborate any such association. Fifth, it
is puzzling that 69% of patients had symptoms, but for purposes of comparison
with control subjects, only 20% did; it would have been helpful to know how
many control subjects had more than 1 symptom and how many physician visits
were made by patients and control subjects over comparable periods of time.
Finally, reliance on the restricted Centers for Disease Control and Prevention
(CDC) definition is too limiting because many patients with LD have multiple
symptoms and few objective signs; the reliance on the typical erythema
chronicum migrans (ECM) rash is especially problematic because typical rashes
may be seen in only half of the patients with documented infection.3
The tenor of the article is dismissive of patients who have
nonspecific symptoms and do not meet the limited CDC definition. This article
does an injustice to both these patients and their physicians by casting doubt
on the validity of such symptoms. There is increasing evidence that the chronic
symptoms of LD are caused by persisting infection and that the use of certain
antibiotics over longer periods of time may result in their resolution.4, 5 Lacking a better
understanding of the natural history, diagnosis, and treatment of LD,
clinicians should remain flexible both in their definition and treatment of the
disease.
Sam T. Donta, MD
Boston University and Boston Veterans Affairs Medical Centers
Boston, Mass
1. Seltzer EG, Gerber MA,
Cartter ML, Freudigman K, Shapiro ED. Long-term outcomes of persons with Lyme
disease. JAMA. 2000;283:609-616. FULL TEXT | PDF | MEDLINE
2. Gerber MA, Shapiro ED,
Burke GS, Parcells VJ, Bell GL, for the Pediatric Lyme Disease Study Group.
Lyme disease in children in southeastern Connecticut. N Engl J Med. 1996;335:1270-1274. MEDLINE
3. Steere AC, Sikard VK,
Maurice F, et al. Vaccination against Lyme disease with recombinant Borrelia burgdorferi outer-surface
lipoprotein A with adjuvant. N Engl J Med.
1998;339:209-215. MEDLINE
4. Donta ST. Tetracycline
therapy of chronic Lyme disease. Clin Infect
Dis. 1997:25(suppl 1);S52-S56.
5. Donta ST. Treatment of
chronic Lyme disease with macrolide antibiotics. In: Program and abstracts of
the VIIIth International Conference on Lyme Borreliosis;
June 20-24, 1999; Munich, Germany. Abstract P193.
To the Editor:
I was disheartened to read that Dr Seltzer and colleagues1 found the
consequences of LD to be trivial. In reality, the disability resulting from
disseminated LD is often extreme.3, It is possible
that some patients interviewed by the authors were in the latent, asymptomatic
stage of LD. Perhaps many who were excluded from the study were too sick to
participate or had died from tick-borne diseases. The nondescribed cases were
the ones that the researchers should have pursued.
The study by Seltzer et al is flawed further by the fact that
tertiary LD may not evidence significantly for decades. The average duration of
time from ECM rash to the time of the authors' interview was a mere 51 months.
I see many patients with previously unrecognized asymptomatic latent disease
who now face a number of physical and cognitive difficulties, as well as
emotional problems such as panic, rage, obsessive-compulsive disorder, and
depression as a direct result of tick infections unrecognized by their
physicians. They usually do not improve until aggressively treated with
antibiotics.The fact that CDC surveillance criteria defined the study's
probands meant that those individuals were excluded who had a negative
enzyme-linked immunosorbent assay (ELISA) result or for whom positive Western
blot bands 31 and 34 kD (both specific to the causative spirochete) were not
counted nor were those who had less than 5 IgG bands detected. Yet ELISA is
notoriously unreliable, and 1 of these deleted bands is considered essential to
the development of the LD vaccine.4
Finally, vaccine and test kit manufacturers apparently endow
a parent university of some of the authors. The widespread offer of vaccine to
the public is dependent on the authors' construct that the CDC's surveillance
criteria are valid for diagnosis of LD. How might this relate to the authors'
surprising claim that LD is an unremarkable disease with generally good
outcomes?
Virginia T. Sherr, MD
Holland, Pa
1. Seltzer EG, Gerber MA,
Cartter ML, Freudigman K, Shapiro ED. Long-term outcomes of persons with Lyme
disease. JAMA. 2000;283:609-616. ABSTRACT | FULL TEXT | PDF | MEDLINE
2. Liegner KB. Lyme
disease: the sensible pursuit of answers. J
Clin Microbiol. 1993;31:1961-1963. MEDLINE
3. Fallon BA. Late-stage
neuroopsychiatric lyme borreliosis. Psychosomatics.
1995;36:295-300. MEDLINE
4. Centers for Disease
Control and Prevention. Effect of vaccination on the serologic diagnosis of LD.
September 1999; Erratum: Vol 48: No. RR-7.
American Psychiatric Association
A Modest Proposal
In response to Dr. Virginia Sherr's letter in the
July 3 issue about the increase in the number of patients showing an unusual syndrome of neurological soft signs that may be linked to Lyme and other tick-borne diseases, and in the interest of health, public safety, and quality of life, we, as psychiatrists, state the following:
Whereas:
Lyme disease and other tick-borne diseases are a serious public health threat;
These often cryptic diseases are associated with a broad spectrum of mental and other physical disorders, birth defects, and cognitive impairments that increase the risk of accidents, violence, memory loss, disabilities, and suffering;
Mental illnesses associated with these frequently unsuspected infections include, but are not limited to, depression, phobias, obsessive-compulsive disorders, panic disorders, aggressiveness, delusions, irritability, suicidality, exhaustion, sexual dysfunction, sleep disorders, eating disorders, and a broad spectrum of cognitive and neurological impairments. Findings more common in children include autism, Tourette syndrome, attention deficit disorder, dyslexia, lethargy, and a decline in grades, tantrums;
Since late-stage Lyme disease presents primarily as a neuropsychiatric rather than an arthritic disease, psychiatrists are encouraged to become more active in the diagnosis and treatment of Lyme disease;
The diagnosis of Lyme disease should take into consideration epidemiological risk factors for disease and be based upon a thorough history, physical findings (including neuropsychiatric), laboratory testing, and response to antibiotic therapy. Commonly used tests include the Western Blot, neuropsychological testing for the cognitive component, and SPECT scans. Tests that are being used with increasing acceptance include PCR, cultures, Lyme urine antigen test, and PET. Spinal taps are most commonly negative in the late-stage neuropsychiatric syndrome;
Research on early Lyme disease has been mistakenly utilized by some insurance companies as the standard that determines diagnostic and treatment guidelines for late-stage Lyme disease. This position results in the inappropriate denial of reimbursement for vital ongoing medical care;
We recognize the need for long-term antibiotic treatment in some of these patients. We are concerned that financially motivated, restrictive treatment guidelines of some of the insurance companies are harmful to patients and the overall public welfare;
Public awareness, education, prevention, vaccines, early diagnosis, correct psychiatric diagnosis, effective treatment, guidance throughout the treatment, advocacy, and research help to reduce the seriousness of this epidemic;
We acknowledge and support the efforts of patients, support groups, clinicians, researchers, drug companies, and advocates who show the commitment, courage, and creativity to meet the challenge of tick-borne diseases;
In addition to tick-borne diseases, other infectious diseases and complex interactive infectious diseases are increasingly recognized as being associated with mental illness.
We therefore advise that:
An APA committee be established to better coordinate information, research, education, policy, and guidelines in this area;
The name of the committee shall be the Committee on Tick-Borne and Other Complex Infectious Encephalopathies.
Robert C. Bransfield, M.D
Red Bank, N.J.
Brian Fallon, M.D., M.P.H.
New York, N.Y.
Bernard Raxlen M.D.
Greenwich Conn.
Lynn Shepler, M.D., J.D.
Falmouth, Mass.
Virginia Sherr, M.D.
Holland, Pa
