LymeNet Newsletter Volume 2 Issue 08

Volume: 2
Issue: 08
Date: 25-May-94

Table of Contents:

I. LYMENET ANALYSIS: The Experts Speak II. J RHEUMATOL: LD: An Infectious and Postinfectious Syndrome III. How to Subscribe, Contribute, and Get Back Issues

Newsletter:

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

IDX# Volume 2 - Number 08 - 5/25/94 IDX# INDEX IDX# IDX# ***** SPECIAL ISSUE ***** IDX# IDX# I. LYMENET ANALYSIS: The Experts Speak IDX# II. J RHEUMATOL: LD: An Infectious and Postinfectious Syndrome IDX# III. How to Subscribe, Contribute, and Get Back Issues IDX#

QUOTE OF THE WEEK:

"The persistence of tired Lyme disease myths despite overwhelming evidence of their inadequacy is perhaps the greatest obstruction to progress in the field. Although these myths exist in all facets of Lyme disease research, they are still most evident in the area of treatment, where legitimate concern about the sometimes indiscriminate use of antibiotics has apparently hardened into an across-the-board anti-treatment zealotry."

-- Brenner et. al. (See Section I)

I. LYMENET ANALYSIS: The Experts Speak ----------------------------------------- Sender: [email protected] Authors: Carl Brenner, Marc Gabriel, Frank Demarest, John O'Donnell

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THE EXPERTS SPEAK . . .

"For every debilitating chronic case of Lyme disease, there are many more easily treated and quickly cured, experts say. "While no one denies that some victims of Lyme disease do suffer chronic symptoms that involve the joints, heart and central nervous system, doctors say that for the vast majority, Lyme is no more serious than a bout of the flu. "The public has a 'godawful sense of the horrors,' said Dr. Leonard Sigal of the Lyme Disease Center at the Robert Wood Johnson School of Medicine in New Brunswick, N.J. 'You don't see the stories of the people who get better.' "The number of people who suffer permanent damage is 'fairly small,' said Dr. Robert T. Schoen, co-director of the Lyme Disease Center at Yale University School of Medicine... " -- Barbara J. Durkin "For most, treatment is easy" (In The Westchester County, NY, Gannett Reporter Dispatch, May 18, 1992)

"Nearly all Lyme disease patients can be effectively treated with an appropriate course of antibiotic therapy." -- Lyme Disease: The Facts, The Challenge (NIH pamphlet on Lyme disease, 1992)

"[Lyme] patients treated in the early stages with antibiotics usually recover rapidly and completely. Most patients who are treated in the later stages of the disease also respond well to antibiotics, and full recovery is the rule." -- Lyme disease: a public information guide from the Centers for Disease Control (no date on literature)

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. . . BUT THE DATA SAY OTHERWISE

"Only ... 38% of the patients were asymptomatic at followup [1 to 8 years after treatment for Lyme disease] ... Despite recognition and antibiotic treatment of Lyme disease, significant infectious and postinfectious sequelae are common." -- Asch ES, Bujak DJ, Weiss M et al. Lyme disease: an infectious and postinfectious syndrome. Journal of Rheumatology 1994;21:454-61.

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A recent study published in the Journal of Rheumatology [1] has turned conventional wisdom on its ear and confirmed many Lyme disease patients' suspicions about the true rate of full recovery after treatment for Lyme disease. Contrary to the oft- stated bromide that the overwhelming majority of Lyme patients return to full health and normal activity after treatment, the long term followup study, authored by researchers at New York Medical College, indicates that the majority of Lyme patients in fact experience ongoing symptoms of varying severity for years after treatment. In the study cohort, these symptoms lasted up to eight years -- the maximum elapsed period between treatment and followup -- and there is every indication that they are permanent and represent either the irreversible consequences of previous Lyme infection or, in some cases, ongoing active infection.

All of the 215 patients who were enrolled into the study met extremely rigorous diagnostic criteria for Lyme disease -- stricter even than the CDC case definition requirements. All were seropositive, and those patients who did not have erythema migrans had to have involvement of at least 2 organ systems to be included. Thus, one of the convenient mechanisms often used to attack the frequent reports of incomplete post-treatment recovery -- the questioning of the original diagnosis -- was directly addressed and neutralized.

In the past, persistent symptoms after treatment for Lyme disease have been dismissed by many researchers as fictitious or overblown, or in any case rather minor and not threatening to the patient's quality of life. Until recently, this line has unfortunately been echoed by our national health agencies, who seem intent on underplaying both the frequency and severity of long term post-treatment sequelae of B. burgdorferi infection. The fact that there have been virtually no long term followup studies in Lyme disease has made it easy to perpetuate this falsehood. (The one exception is the original cohort of patients from Lyme, CT and environs in whom the disease was first recognized, many of whom had gone untreated for years and would thus be expected to have a disproportionate share of poor outcomes.) We hope that with the publication of these new data, the myth of nearly universal full recovery will be put to rest.

A less surprising finding of Asch et al. was the correlation between early disease detection and a positive treatment outcome: "Those patients treated within 4 weeks of onset of their first symptoms of Lyme disease, regardless of the stage at presentation, had a higher frequency of complete recovery than those patients whose treatment was delayed beyond 4 weeks." This confirms the anecdotal observations of many clinicians who treat Lyme disease, and should serve as an important warning to those researchers who advocate a policy of "watchful waiting" when a patient has been bitten by an Ixodes tick and disease transmission is uncertain [2,3]. Such a strategy may be condemning infected patients to a lifetime of chronic illness.

Official denial of the seriousness of Lyme disease and its long term sequelae has had several negative consequences for Lyme patients. It has kept research dollars for Lyme disease at levels incommensurate with the disease's threat to public health; this shortfall in research funds has in turn led to the neglect of chronic Lyme disease as a critical research topic. A situation has arisen where there are insufficient resources (and, we fear, interest) to even carry out the research necessary to define the scope of the problem. In addition, the pervasiveness of the lie that "almost all Lyme patients are completely cured" has caused no small amount of grief to the many individual Lyme sufferers who experience incomplete recovery and who must often wonder what it is about them (their character? their fortitude?) that accounts for the "uniqueness" of their situation. It turns out that their situation isn't unique after all.

The persistence of tired Lyme disease myths despite overwhelming evidence of their inadequacy is perhaps the greatest obstruction to progress in the field. Although these myths exist in all facets of Lyme disease research, they are still most evident in the area of treatment, where legitimate concern about the sometimes indiscriminate use of antibiotics has apparently hardened into an across-the-board anti-treatment zealotry. Certain researchers have become so intent on attacking the use of longer antibiotic treatment regimens that they end up ignoring their own observations on its efficacy. This phenomenon may have reached its zenith with the 1992 publication of a paper on Lyme disease and fibromyalgia in the Annals of Internal Medicine [4], in which the authors clearly noted that a majority of 15 post-treatment Lyme disease patients with persistent symptoms responded positively to retreatment with antibiotics and did not respond to treatment for fibromyalgia syndrome. Somehow, they still managed to convince themselves that the patients had fibromyalgia
without active Lyme disease.

Similar stubbornness is evident in a bizarre cost-effectiveness analysis published in the same journal last year [5]. In this study, the authors concluded that patients who present to their physician with pain, fatigue and a positive Lyme serology should be denied antibiotic treatment. This conclusion was aided by the authors' willful misuse of CDC data on the incidence of Lyme disease (which completely skewed their figures on the relative incidence of Lyme disease and fibromyalgia) and several other gross conceptual and methodological errors. Not only were the CDC numbers equated with the true incidence of Lyme disease, but the distortion was compounded by the fact that the figures used for the study had been compiled in 1987 (when the recorded incidence was about a third of what it was last year). The study's authors had to know that they were cooking the books -- even the CDC acknowledges the strictness of their case definition and the problem of underreporting -- but they were intent on reaching a particular conclusion and apparently had no qualms about
massaging the data to obtain the desired result. We were appalled to see this "analysis" cited by NIAID in response to a recent House Appropriations Committee directive to investigate the etiology and appropriate treatment for chronic Lyme disease. They should know better.

The very real difficulties posed by Lyme disease and the long term morbidity associated with it will not go away by denying that the problem exists or by taking refuge in phony cost-effectiveness analyses. Asch et al. have made an important contribution by hinting at the scope of the problem. We hope that the CDC and NIH are cognizant of these findings and will relegate the "Almost all patients exhibit complete recovery" line to the trash heap -- where it can join "Late Lyme disease is invariably seropositive," "Lyme disease always causes objective clinical findings" and the many other quaint misconceptions of yesteryear.

REFERENCES

1] Asch ES, Bujak DI, Weiss M et al. Lyme disease: an infectious and postinfectious syndrome. J Rheumatol 1994;21:454-61.

2] Steere AC. Lyme disease (reply to letter of KB Liegner). N Eng J Med 1990;322;475.

3] Shapiro ED, Gerber MA, Holabird NB, et al. A controlled trial of antimicrobial prophylaxis for Lyme disease after deer-tick bites. N Eng J Med 1992;327:1769-73.

4] Dinerman H, Steere AC. Lyme disease associated with fibromyalgia. Ann Intern Med 1992;117:281-5.

5] Lightfoot RW, Luft BJ, Rahn DW, et al. Empiric antibiotic treatment of patients with fibromyalgia and fatigue and a positive serologic result for Lyme disease: a cost-effectiveness analysis. Ann Intern Med 1993;119:503-9.

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II. J RHEUMATOL: LD: An Infectious and Postinfectious Syndrome ---------------------------------------------------------------- AUTHORS: Asch ES, Bujak DI, Weiss M, Peterson GE, Weinstein A REFERENCE: J Rheumatol 1994;21:454-61 ORGANIZATION: New York Medical College, Vallhala, NY, USA and Cornell Medical College, New York, NY, USA ABSTRACT:

OBJECTIVE: To determine chronic morbidity and the variables that influence recovery in patients who had been treated for Lyme disease. METHODS: Retrospective evaluation of 215 patients from Westchester County, NY, who fulfilled Centers for Disease Control case definition for Lyme disease, were anti-Borrelia antibody positive and were diagnosed and treated at least one year before our examination. RESULTS: Erythema migrans had occurred in 70% of patients, neurological involvement in 29%, objective cardiac problems in 6%, arthralgia in 78% and arthritis in 41%. Patients were seen at a mean of 3.2 years after initial treatment. A history of relapse with major organ involvement had occured in 28% and a history of reinfection in 18%. Anti-Borrelia antibodies, initially present in all patients, were still positive in 32%. At followup, 82 (38%) patients were asymptomatic and clinically active Lyme disease was found in 19 (9%). Persistent symptoms of arthralgia, arthritis, cardiac or neurological involvement with or
without fatigue were present in 114 (53%). Persistent symptoms correlated with a history of major organ involvement or relapse but not the continued presence of anti-Borrelia antibodies. Thirty-five of the 114 (31%) patients with persistent symptoms has predominantly arthralgia and fatigue. Antibiotic treatment within 4 weeks of disease onset was more likely to result in full recovery. Children did not significantly differ from adults in disease manifestations or the frequency of relapse, reinfection, or complete recovery. CONCLUSION: Despite recognition and treatment, Lyme disease is associated with significant infectious and postinfectious sequelae.

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