By PAUL POST – via The Saratogian
SARATOGA SPRINGS — A SUNY Adirondack professor says Lyme disease has reached epidemic proportions in New York state.
Holly Ahern, an associate professor of microbiology, co-chaired a LymeNext Forum at Skidmore College in May that was attended by more than 500 people, including several experts on the disease.
The following are her responses to questions about the topic.
Q: Has Lyme disease reached epidemic proportions?
A: Lyme disease is absolutely an epidemic. Lyme disease is diagnosed by physicians at rates that vary from 10 to 50 times higher than what public health statistics show. New York state follows the recommendations of the federal Centers for Disease Control when it comes to diagnostic criteria for a case of Lyme disease. Those criteria are clinical evidence and laboratory evidence of infection.
These recommendations preclude diagnosis of Lyme disease more than half the time. Here’s why: According to the CDC, the only clinical evidence currently acceptable for diagnosis is appearance of a “bulls-eye” or erythema migrans (EM) rash. Studies have clearly demonstrated that the EM rash is not the most prevalent morphologic feature, nor does it appear in anywhere near the CDC-stated “60 to 80 percent” of cases.
As far as the lab tests go, all of the most widely used tests are indirect tests, meaning they look for antibodies produced by the patient against Borrelia burgdorferi. These tests are very insensitive, meaning that reported data has shown a less than 50 percent accuracy rate — as reliable as a coin toss.
And those are the only two criteria permitted for reporting. So physicians are diagnosing and not reporting, or not diagnosing at all because the CDC (and therefore New York state) are resolute in their opposition to changing those guidelines, even in the face of very strong data. My own data indicates that in this area, Lyme disease cases exceed reported cases by a factor of 80.
(Saratoga County Public Health Director Karen Levison did not return calls for comment. Inquiries to the state Health Department in Albany also were not answered).
Is New York State doing enough?
The state is not doing enough. Our neighboring state, Massachusetts, convened a task force last year to investigate Lyme disease, and in July issued a report with the title, “Lyme Disease in Massachusetts: A Public Health Crisis.”‘ Virginia, Rhode Island and other states have done the same and issued similar reports. Pennsylvania just passed legislation to protect physicians from punitive review or action by the Office of Professional Medical Conduct if they choose to treat Lyme disease patients with signs and symptoms of Lyme disease, but don’t have a rash and don’t test positive on the tests that are wrong half the time.
New York state has done little, although individual elected officials such as those who made the effort to attend the LymeNext Forum have been very supportive.
Is Lyme disease here to stay?
I’m afraid that as long as the tick population has plenty to eat — and they do — that Lyme disease is here to stay. People need to be made aware that their risk of Lyme disease is significantly higher than what our public health agencies are letting on.
Physicians need to become more aware that the Infectious Diseases Society of America Clinical Practice Guidelines, backed by the CDC, are not based on objective scientific evidence and do not accurately reflect the majority of cases. There is a mountain of biologic evidence supporting the position that Lyme disease may become a long-term, progressively debilitating disease if it is not diagnosed and treated early in the infection. Until the CDC concedes that an objective review of all the evidence is called for and revises its current position, the situation will only get worse.
What advice do you give people about avoiding Lyme disease?
People need to know that there is no such thing as “tick season” or “Lyme disease season” because the various tick stages feed practically year- round. They are only inactive when temperatures are below freezing.
Vigilance in checking everywhere after being outside is very important because nymph-stage ticks are very small and easy to overlook. Adult ticks feed practically year-round and as the final life stage, they probably carry the most pathogens. Adult ticks also do not leave the “bulls-eye” rash when they bite, so diagnosis of Lyme disease might be delayed or absent if someone is bitten in the early spring or fall.
While Lyme disease is defined as being caused by Borrelia burgdorferi, at least five other pathogens can be transmitted by tick bite and may contribute to Lyme disease symptoms. These are Babesia, Bartonella, Anaplasma, Ehrlichia and Mycoplasma. However, tests for these co-infections are rarely ordered. People should also be proactive with their doctors when seeking advice or treatment for ailments with vague symptoms like fatigue, dizziness, short-term memory issues, eye pain or jaw pain, fever and swollen glands, headaches and muscle or joint pains, where there was no observed rash or if a serological test for Borrelia is negative.
What was the most positive outcome of the LymeNext Forum at Skidmore College?
As we hoped the name implied, the LymeNext forum was conceived as a way for individuals and groups with diverse views on Lyme disease to come together in a collaborative way, to encourage forward thinking and problem solving. We received an avalanche of positive reviews after the event from the medical professionals who were presenters and also in the audience; from the elected officials who stopped by to offer their support; and especially from members of the audience who came because they had been affected by Lyme disease.
It was very encouraging to speak with individual physicians and hospital administrators who revealed that the forum had truly opened their eyes to the controversy surrounding diagnosis and treatment of Lyme disease and wanted to learn more to be able to help their patients. Media coverage from the event has also increased awareness of Lyme disease risk, symptoms and problems with diagnosis and treatment.
Have any specific steps been taken because of that event?
Congressman Chris Gibson has continued to press for passage of legislation pending in Congress to create a national task force on Lyme disease. I personally have been encouraged to develop a Continuing Medical Education curriculum on Lyme disease based on the presentation I gave at the forum, to help educate physicians and other health officials on the “other” Lyme.
We continue to press for an audience with the governor and attorney general and are perhaps a half-step closer to discussing ongoing concerns related to actions taken by the Office of Professional Medical Conduct against Lyme physicians in New York state, and getting the Department of Health to acknowledge the growing problem of Lyme in this state.
Editor’s note: This is the second in a two-day series about the increasing prevalence of Lymedisease in our region. Sunday’s stories featured an area resident who is living with the disease and another who was fortunate enough to have it detected early.
Lyme disease cases in New York
Source: State Health Department
Safely removing ticks
The Centers for Disease Control & Prevention recommends the following steps for removing ticks.
For additional information
The following websites have information about Lyme disease:
Also, check out these resources: