LYMEPOLICYWONK: Yes, Virginia, there is a Santa Claus: Virginia Lyme Task Force Findings Released
There is a lot to like about the Virginia Governor’s Task Force on Lyme Disease findings, which were unanimously adopted on June 30th after a number of public hearings. The report totals 19 pages and it is remarkably balanced. Congratulations to all involved! I want to share with you what I like about the report by highlighting key points from the findings on Diagnosis, Treatment, Public Education and Prevention, and Children.
I have excerpted the most important components of the report in my opinion and have left the section titles and paragraph numbers intact for those wanting to follow along with the full report, which you can download at the bottom of this post.
[W]e make the following specific findings and recommendations based on the testimony that we received from our hearings:
1. As acknowledged by the CDC, Lyme disease and many related tick-borne illnesses cannot be adequately diagnosed by serology alone in many cases.
2. There is no serological test that can “rule out” Lyme disease.
3. Clinical diagnosis that may be supported by serology remains the proper method for the diagnosis of Lyme and related illnesses.
4. Clinical diagnosis is not limited to the observation of an EM rash. A significant proportion of patients with Lyme disease may never develop or observe such a rash. Moreover, the EM rash can manifest in non-traditional patterns. The medical community needs a more comprehensive set of visual illustrations so that non-traditional patterns may be properly recognized.
7. The testimony that came before the Task Force relayed the highly questionable nature of the ELISA test for early localized disease. We encourage the use of clinical judgment at all stages due to the significant limitations of current serology.
8. We recommend that the VDH reporting form include the disclaimer “The CDC case definition is designed for surveillance purposes only. Clinical judgment should be exercised in assessing patients for Lyme disease as meeting the surveillance case definition is not required for the diagnosis of Lyme disease.”
9. Since ticks often carry multiple pathogens and we received testimony that many Virginians have multiple tick-borne illnesses that may require comprehensive analysis and treatment, the medical community should be educated on the presence of co-infections.
10. Great caution should be taken whenever a black-legged tick is attached and especially if it is engorged. Patient reports about the length of time of attachment can be unreliable as some patients may not have observed the exact moment of attachment. Medical providers should be at their liberty to treat Lyme disease prophylactically in such cases because of the high risk of disease. (Note that single-dose prophylaxis may lower the sensitivity of subsequent serology, as stated by the CDC.) Moreover, it is clear that early treatment is very important to prevent many serious complications of Lyme disease.
1. There is no serological test that can tell a medical provider when a patient has been cured of Lyme disease.
2. A typical criterion that a patient is well is when the symptoms have resolved and the patient feels better.
3. There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.
5. Expert testimony regarding effectiveness of long-term antibiotics conflicted. We encourage additional studies to evaluate the effectiveness of long-term antibiotics as treatment for Lyme disease.
6. The Department of Health Professions should inform its licensees that the department does not target clinicians for disciplinary action by virtue of their antibiotic choice of management of Lyme disease.
Public Education and Prevention
1. It is a public health goal of a high magnitude to ensure that the general public and medical community become fully aware of the risk of exposure to Lyme and related illnesses and the severe medical consequences that can arise when this disease is not promptly diagnosed and treated. Developing an appropriate sense of public urgency is the greatest single need in the efforts to prevent and treat Lyme disease.
1. One expert testified concerning a potential for in utero transmission of Lyme disease. The CDC has proclaimed on its website, “Untreated, Lyme disease can be dangerous to your unborn child.”1 VDH should include information for pregnant women in the educational materials that it provides to the general public and to healthcare providers who care for pregnant women.
6. Experts testified that students afflicted with this disease often fall significantly behind in school because of the problems that they face not the least of which is cognitive difficulties. Current educational accommodations are often inadequate. Consideration should be given to appropriate and sensitive educational modifications for students with late stage Lyme that help maximize their educational progress and that emphasize the fact that late stage Lyme disease routinely has waxing and waning symptoms not typical in most chronic medical conditions and that may require novel and timely accommodations and interventions.