Under-Reporting of Lyme Disease By Doctors

by lmatthews on May 14, 2012


Recent statistics coming from Maryland support the view that many Lyme disease cases go unreported despite mandatory reporting being in place for the infectious disease. A study by the Maryland Department of Health and Mental Hygiene (DHMH) showed that a significant number of Lyme disease cases were not entered into the database and that, if they had been, the state would have been number one in the US for new Lyme disease cases.

Why All Lyme Disease Needs Reporting

In 2009 there were 1466 reported cases of Lyme disease in Maryland. However, the Maryland DHMH found a total of 5722 cases of Lyme disease that were not entered into the database, even though the State and Federal regulations require all cases to be reported. Under-reporting of diseases can allow the myth to persist that the infection is rare, meaning that when it does occur it usually takes longer to diagnose and the optimum window for early treatment is missed. Unfortunately, the situation represents a vicious cycle as under-reporting means poor recognition and education, and these then lead to continued misdiagnosis or under-reporting. There is also the issue of research funding as disease with low numbers of reported cases do not attract as high funding grants as those with larger numbers of people reportedly affected.

Under-Reporting Raises Lyme Disease Risk

lyme disease symptoms maryland cases of lyme disease

Could there really be 200 new cases of Lyme disease a day in Maryland?

Patients with Lyme disease are also more likely to find it difficult to access treatment, facing suspicion and cynicism due to the perpetuation of the Lyme disease myth of non-existence in some states and Canadian provinces. Lyme disease prevention and awareness efforts are also hampered by under-reporting of cases and the general public is put at increased risk of infection if they are not told by local government of the actual incidence of the disease in their area.

CDC Estimates Ten Times More Lyme Disease Cases Than Reported

The continued under-reporting of Lyme disease has persisted to the same degree for a decade or so, with little improvement despite a focus on regulation of infectious disease reporting. The figures then appear to show a stable spread of the disease and few new cases despite many thousands of cases existing outside of the official database. Even the Centers for Disease Control (CDC) observe that the reported cases of Lyme disease are likely only representative of a tenth of the actual occurrences of the infection. The confusion could be exacerbated further through the revelation of a new viral agent that is transmitted by ticks and which could account for some seronegative chronic Lyme disease cases.

Why Doctors Do Not Report Lyme Disease

The reasons for under-reporting of Lyme disease cases do not just include poor recognition of Lyme disease symptoms or adherence to regulations by individual physicians, there are also issues of staffing and procedural awareness. Around the US there are health departments losing staff whose job was to report cases of disease such as Lyme disease. Some of these disease surveillance staff cuts have led to entire departments closing and whole swathes of the country with no method of tracking or reporting cases of disease such as Lyme disease. In previous years local health departments investigated almost all reported cases of Lyme disease, but many overstretched departments now only check those cases of Lyme disease with significant laboratory evidence.

Complex Lyme Disease Reporting Process

One of the problems cited by many Lyme disease advocates is the cumbersome framework with which the local health authorities must work to determine the number of cases they report of any given infection. The surveillance criteria have changed numerous times over the past few years, meaning that staff have to spend more time determining the admissibility of cases, with many more of these falling outside the criteria than being included. The Council of State and Territorial Epidemiology represents a complex system of reporting and the time needed to wade through the documentation often means pressured physicians simply decide their time is better spent with their patients than in analyzing these documents.

200 Cases a Day of Lyme Disease in Maryland

In addition, some physicians are wary of reporting all cases of Lyme disease they treat as they worry that this will cause them to be investigated by CDC officials and insurance companies. The variability of Lyme disease tests also means that many cases that would be reported with laboratory proof of infection are instead treated on the basis of symptoms but not eligible for reporting according to CDC guidelines. If the CDC’s tenfold estimate is correct then there are thousands of new cases of Lyme disease each day going unreported, with two hundred new Lyme disease cases a day in Maryland alone according to estimates from the Lyme Disease Education and Support Groups of Maryland. Education and Lyme disease awareness efforts are certainly hampered when the available disease statistics appear so inadequate. Under-reporting of Lyme disease happens for a variety of reasons but, perhaps, highlighting the poor adherence to infectious disease guidelines can help change things for the better.

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