LymeNet Newsletter Volume 2 Issue 03

Volume: 2
Issue: 03
Date: 04-Mar-94

Table of Contents:

I. ANNOUNCEMENT: Patients sought for LD neuroborreliosis study II. ANNOUNCEMENT: VI Int'l Conference on Lyme Borreliosis III. WASHINGTON POST: Infectious Disease Tracking Infrastructure "All but Collapsed" IV. AM J PUBLIC HEALTH: Antibodies to Borrelia burgdorferi and Tick Salivary Gland Proteins in New Jersey Outdoor Workers V. Q&A: Roxithromycin and Lyme VIII. How to Subscribe, Contribute, and Get Back Issues

Newsletter:

*********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * ***********************************************************************

IDX# Volume 2 - Number 03 - 3/04/94 IDX# INDEX IDX# IDX# I. ANNOUNCEMENT: Patients sought for LD neuroborreliosis study IDX# II. ANNOUNCEMENT: VI Int'l Conference on Lyme Borreliosis IDX# III. WASHINGTON POST: Infectious Disease Tracking Infrastructure IDX# "All but Collapsed" IDX# IV. AM J PUBLIC HEALTH: Antibodies to Borrelia burgdorferi and IDX# Tick Salivary Gland Proteins in New Jersey Outdoor Workers IDX# V. Q&A: Roxithromycin and Lyme IDX# VIII. How to Subscribe, Contribute, and Get Back Issues IDX#

QUOTE OF THE WEEK:

"Many colleagues in the clinic and laboratory persistently fail to acknowledge the problem of persistence, following the motto 'What I can't see, doesn't exist.' Unfortunately, however, Borrelia are easy to overlook in patient samples, and not so easy to detect ... the colleagues in America, particularly, have failed to accept the problems of treatment and the possible persistence of B. burgdorferi."

-- Dr. Vera Preac-Mursic of the Max Von Pettenkofer Institute in Munich, Germany, in a letter to Dr. Kenneth Leigner of Armonk, NY, dated November 22, 1993.

INTRODUCTION:

The last issue of the LymeNet Newsletter featured questions from readers. The purpose of this Q&A section is to solicit a response from subscribers, as the editors unfortunately don't have all the answers. If you have any ideas on the issues raised by those questions, please send them in (via e-mail or FAX).

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I. ANNOUNCEMENT: Patients sought for LD neuroborreliosis study -----------------------------------------------------------------

Dr. Brian Fallon, assistant professor of psychiatry at Columbia University, is conducting a free research study on the neuropsychological aspects of late Lyme disease. The study hopes to begin to provide answers to a major medical controversy: "Among patients with persistent cognitive deficits, such as memory problems, who have already been treated with one course of IV antibiotics, does a second course of IV antibiotics help or not?" If eligible, patients will receive free neuropsychological testing and free functional brain imaging (regional cerebral blood flow studies and/or SPECT scans) *before* their second course of IV antibiotics and 12 weeks later.

For this study, Dr. Fallon is seeking patients age 18-65 with persistent symptoms who have already received once course of IV antibiotics. He is interested in hearing from two groups of patients: (1) patients with persistent memory problems who are about to start a second course of IV antibiotics; and (2) patients with persistent memory problems who plan to be off antibiotics for a while to see if the symptoms resolve on their own with time.

Dr. Fallon is also seeking patients with Lyme arthritis but no central neurological symptoms who are about to start a second course of IV antibiotics. Just like the neuroLyme patients, these patients will get free neuropsych tests and brain imaging at baseline and at week 12.

The benefit of this study to the patients is the free neuropsychological studies and the free brain imaging. Results will be sent to the patient's doctor at the end of the three month study. The benefit to society is that information may be obtained that will help answer a major medical controversy.

If interested, please call Dr. Brian Fallon at 212-960-2487.

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II. VI Int'l Conference on Lyme Borreliosis --------------------------------------------- DATE: June 19 - 22, 1994 LOCATION: Palazzo della Cultura e del Congressi, Bologna, Italy

The purpose of the VI International Conference of Lyme Borreliosis is to provide an interdisciplinary forum at which investigators involved in basic, applied and clinical worldwide research can meet in order to review recent developments in all areas concerning Lyme disease.

The Conference will consist of oral and poster presentations. An Opening Lecture by invited speakers will introduce each scientific session. The following main topics will be addressed: biology, genetics, pathogenicity, immunity, clinical manifestations, diagnostic tests, therapy, ecology, epidemiology and control.

For more information and to register, contact:

SOGEPACO Convention and Travel Piazza Constituzione 5/c I-40128 Bologna Italy Phone: +39-51-6375111 FAX: +39-51-6375149

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III. WASHINGTON POST: Infectious Disease Tracking Infrastructure "All but Collapsed" ----------------------------------------------------------------- HEADLINE: Gaps in Tracking Wide Range of Diseases; Public Health Officials Say Surveillance of Infections Is Inadequate DATE: January 4, 1994, Tuesday PAGE: HEALTH; PAGE Z9 BYLINE: Sally Squires, Washington Post Staff Writer

Stretched thin by budget cuts, public health departments throughout the country are struggling to track infectious disease outbreaks. Some even have trouble keeping tabs on such reportable illnesses as tuberculosis, measles and whooping cough.

"Being a reportable disease in this country really means almost nothing," said Michael Osterholm, state epidemiologist in Minnesota and president of the Council of State and Territorial Epidemiologists. "The infrastructure for reportable diseases has all but collapsed."

Public health officials say the reporting system is eroded by funding cutbacks and the continuing difficulty of tracking disease outbreaks in inner cities and far-flung rural areas. "We are making decisions flying by the seat of our pants," Osterholm said.

[...]

Adding to the difficulties is the lack of a clear definition of what constitutes a reportable illness. The CDC is the federal agency in charge of tracking infectious illnesses in the nation. The CDC monitors not only familiar maladies, such as measles, mumps, rubella and polio, but also less well-known afflictions, such as murine typhus fever and tularemia.

But the list is far from complete. The CDC tracks only 49 reportable diseases. Scarlet fever, strep throat infections, infectious mononucleosis and the common sexually transmitted disease chlamydia are among those not monitored by CDC.

"CDC and the federal government have no direct ability or statute to say to states, 'You have to report this disease,' " said Michael Gregg, former director of the epidemiology office at the CDC and a past editor of its Morbidity and Mortality Weekly Review. Reporting is at the discretion of each state.

With one exception -- cholera, whose national surveillance was mandated by federal law in the 19th century -- the CDC does not even decide which illnesses will be reportable each year. That decision is largely left up to the Council for State and Territorial Epidemiologists, a private, nonprofit group that recommends annually which illnesses ought to be reported to the CDC by state health departments. But the final choice is made by each state.

[...]

Among the other problems cited by Osterholm's study:

* Lack of funding to track measles, mumps, rubella, tetanus and polio -- illnesses that can be prevented by childhood immunizations. Less than 7 percent of the total budget for infectious disease surveillance -- $ 5.2 million -- goes annually to track these illnesses despite outbreaks in recent years and low rates of immunization among youngsters in some areas.

* Inadequate efforts to monitor drug-resistant infections, such as certain types of tuberculosis and some day-care center illnesses. Only $ 55,000 was spent nationwide in 1992 by public health departments to track drug-resistant bacterial and viral infections, despite rising reports of outbreaks of these dangerous illnesses.

* Staff shortages, particularly at local and state levels. In 1992, the study found, 70 percent of all public health employees involved in surveillance were busy tracking AIDS, tuberculosis and sexually transmitted diseases. That left 30 percent -- equivalent to 486 full-time employees -- to monitor all other infections, including outbreaks of Lyme disease, meningitis, Reye's syndrome, Legionnaire's disease and hanta virus, as well as serious infections such as giardiasis and hepatitis, found in day-care centers, hospitals and nursing homes.

The surveillance of diseases that does occur can fall short. Staff-depleted health departments, for example, are not always able to check whether a patient with hepatitis or E. coli works in a restaurant or in a day-care center, where the disease might be spread.

Some diseases are also under-reported because physicians don't see the need to report them, a problem cited in a 1989 CDC study, which found variances of 6 to 90 percent for commonly reported illnesses. "What does he [the doctor] get out of it?" Gregg said. "What does the patient get out of it? There is often a lackluster view of local health departments by private physicians."

Penalties for noncompliance vary and are rarely enforced. "In theory, we could report them to the board of medical examiners and ask to have their wrists slapped," said Richard Hopkins of the Florida Department of Health and Rehabilitative Services. "In practice, there are no consequences."

Some states enhance reporting of infectious diseases by requiring laboratories, hospitals and clinics to notify health departments when a patient tests positive for certain illnesses.

"We are still able to respond to crises," said Guthrie Birkhead, director of the bureau of communicable disease control for New York State. But the routine, day-to-day efforts to report, track and stifle a disease, he said, "are much more difficult and probably less coordinated than [they] should be."

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IV. AM J PUBLIC HEALTH: Antibodies to Borrelia burgdorferi and Tick Salivary Gland Proteins in New Jersey Outdoor Workers --------------------------------------------------------------------- AUTHORS: Schwartz BS, Goldstein MD, Childs JE REFERENCE: Am J Public Health 1993;83:1746-1748 ABSTRACT:

In 1990, a second cross-sectional study of outdoor workers (n=758) at high risk for Lyme disease was conducted. A questionnaire was administered, and antibodies to Borrelia burgdorferi and tick salivary gland proteins (antitick saliva antibody, a biological marker of tick exposure) were assayed by enzyme-linked immunosorbent assay. The statewide Lyme disease seroprevalence increased from 8.1% in 1988 to 18.7% in 1990. Antitick saliva antibody varied by county and was associated with measures of self-reported tick exposure. The data suggest that the prevalence of B. burgdorferi infection increased in New Jersey outdoor workers from 1988 to 1990.

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V. Q&A: Roxithromycin and Lyme --------------------------------- Sender: [email protected] (Llyod Miller, DVM)

In response to Brian's comments in LymeNet Newsletter V2#2.

I have observed the same response to the various antibiotics that he describes. Initially the antibiotic seems to have a positive effect (not placebo!) but then in time, and that time varies greatly, the person's condition levels off and maintains for some time and then begins to regress with increase in symptoms and severity of symptoms. I have made this observation in my own family experience with the disease and have heard of it from many other Lyme patients.

I have no idea why this happens. If the reason for persistent disease is persistent infection then one could speculate that it is possible that initially the bacterium is suppressed or its population is diminished by the antibiotic but then it develops a population resistant to the effect of the antibiotic and begins to multiply again. Often changing antibiotic at this point begins the process all over again.

If this is the case I wonder if an antibiotic resistant population is being produced within the patient so that over time the bacterium may develop resistant populations to most antibiotics. However, if that's the case why does going back to an antibiotic used in the past on the same patient follow the same pattern? I have also heard or read someplace that bacteria lose their resistance quickly (within several generations) if they are no longer exposed to the antibiotic. Is there a bacteriologist out there who can comment on this?

Specifically about Roxy with or without Bactrim. I have seen the same experience of initial improvement with a long period of stability (months) and then the same decline as with all other antibiotics. It turned out to be no more effective than any other treatment protocol. There may be some difference in antibiotic sensitivity by geographic region and he may be experiencing this.

Of course all this is anecdotal. You know that if you measure and observe results on a patient it is considered anecdotal but if you do the same on a rat then it is SCIENCE!

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