This is the first of its kind and requires those laboratories offering Lyme disease tests to inform patients that false negatives are possible, allowing them to get further tests if needed. The law comes into effect on Monday and is designed to help protect patients with Lyme disease who have spent months, if not years, pursuing a diagnosis after an initial test that proved negative.
Early tests for Lyme disease may not return positive if sufficient antibodies have not built up in the blood to show up on analysis. The two-tier testing recommended by the US Centers for Disease Control has been much criticized in recent years and alternative Lyme disease testing methods have been designed and offered but with little encouragement from the CDC themselves.
Long-Term Complications of Lyme Disease
Untreated Lyme disease can create long-lasting tissue damage and cause permanent disability. There is also a suspicion that chronic untreated infection may be implicated in many more deaths than have been attributed to Lyme disease itself, largely through the damage inflicted by the bacteria on the heart and the central nervous system. Patients dying of seemingly unrelated causes have, in a number of cases, been found to have evidence of Lyme disease bacteria in heart tissue and in the brain, as well as in other bodily organs and tissues.
Why Proper Diagnosis is Essential in Lyme Disease
The characteristic Lyme disease rash (the bulls-eye rash) is not always present and may be missed even if it is present as an early symptom of Lyme disease. This, coupled with the confusion over symptoms of Lyme disease mimicking other illnesses, can lead to incorrect diagnosis. Some patients have spent years being treated for Multiple Sclerosis, Amyotrophic Lateral Sclerosis, fibromyalgia and other conditions before finally getting a diagnosis of Lyme disease and receiving proper antibiotic treatment.
A Fitting Stage for First US Lyme Disease Law
Virginia’s new Lyme Disease Testing Information Disclosure Act (HB1933) was signed into law by the Governor while he was surrounded by community leaders and legislators, making Virginia the first state in the US to require health care providers to notify those tested for Lyme disease that current laboratory testing can produce false negatives, especially in the early stage of the disease. McDonnell said “This legislation is a major milestone in the fight against Lyme disease and an important step towards ensuring the continuing health and welfare of Virginians. We must continue to work together to make certain that all Virginians are properly educated on the dangers of Lyme disease.”
Loudon County’s Aggressive Approach to Lyme Disease Prevention
Lyme disease sufferers in Virginia not only have Bob McDonnell to thank but also the National Capital Lyme Disease Association who work at a grassroots level to garner support for the act and to raise awareness of the infectious disease. It may be that Virginia is the first of many states that pass laws governing the testing of such diseases as Lyme and it is fitting that the signing of the law was held at Claude Moore Park in the heart of Loudoun County, Virginia, a county that has been at the forefront of Lyme disease awareness-raising in recent years. Governor McDonnell remarked upon that legacy by saying that “our Board of Supervisors continues its aggressive approach in slowing the rate of Lyme disease with a 10-point-plan to mitigate this devastating illness. We have taken an aggressive approach to slowing the rate of the disease by raising awareness and educating residents on prevention measures in that we had 219 recorded cases of Lyme disease in Loudoun County last year.”
Lyme Disease Cases in Virginia on the Rise
Cases of Lyme disease in Virginia rose 9% last year from 2011 figures, with 1,110 cases but this likely still only represents a fraction of the actual cases of the infection as many people remain unaware that it is Lyme disease at the root of their symptoms. There are also those whose illness is not officially reported as being Lyme disease because of a false negative such as the ones being specifically targeted by this latest legislation. Patients in Virginia who suspect they have Lyme disease may now feel somewhat reassured that an early negative result for Lyme disease does not necessarily presage a long and arduous battle to undergo further testing. Whether any other states will follow suit and pass a Lyme disease patient protection act like Virginia remains to be seen.