Tick-Borne Disease on Rise in Maine

by Sharon Wachsler

On May 1, 2014, the Maine Center for Disease Control and Prevention and the Maine Department of Health and Human Services issued a report, [PDF] Maine Public Health Alert: 2014 Lyme Disease Information, which provides information and resources on tick-borne disease in Maine. The document provides good information and links in some respects, and in other respects falls short of what Mainers -- and, more importantly, the health care providers of Maine, need to know about tick-borne disease.

The report starts by announcing that May is Lyme Disease Awareness Month in Maine and states that Lyme disease cases have been on the rise in Maine, and that the state expects that increase to continue. In fact, new cases of Lyme have already been reported in 2014, and the state expects that number to increase as the weather warms up. Last year, a record high of over 1,375 cases were reported, with incidence in every county. The state expects the number to be even higher this year.

The report gives information about how to properly remove ticks and urges people who remove ticks from themselves to save and send the ticks to the University of Maine Cooperative Extension Tick Identification Lab. The Tick ID Lab will let the person know what kind of tick it was, if it was engorged (had been feeding long enough to transmit disease), and if it carried the bacteria for Lyme disease. The cost for submitting a tick is ten dollars.

The report also warns that the tick-borne diseases, babesiosis and anaplasmosis, are on the rise in Maine, as well, and that testing or treating for Lyme disease is not sufficient if other infections are present.

The document urges citizens to report cases of Lyme to the state:

Lyme disease is a reportable condition in the state of Maine. Report all diagnosed erythema migrans rashes and all positive lab diagnoses. Cases can be reported by fax at 1-800-293-7534 or by phone at 1-800-821-5821.

All the above information is useful, and I urge Mainers to make note of it. Some additional information that the guide does not cover is below.

The guide refers several times to other tick-borne diseases reported in the state, but specifies only babesiosis, anaplasmosis, and powassan, possibly because these diseases were all reported to the state last year -- with multiple cases of babesia and anaplasma infections. Passing reference is made to Rocky Mountain spotted fever and ehrlichia, but no mention is made of bartonellosis, another common tick-borne infection. Mainers should be aware that the microbes that carry babesia, anaplasma, bartonella, and ehrlichia are present in both deer ticks and dog ticks, and that if tick-borne disease is suspected, it is important to consider the possibility of multiple infections, sometimes referred to as "coinfections."

The guide also refers exclusively to the Infectious Disease Society of America (IDSA) diagnostic and treatment guidelines. Unfortunately, IDSA guidelines for diagnosis and treatment of tick-borne disease are woefully inadequate and contribute to the misdiagnosis and undertreatment of tick-borne disease in the United States. Mainers -- especially Maine health care providers -- who want a more comprehensive assessment, diagnostic, and treatment approach to tick-borne disease may wish to use the International Lyme and Associated Diseases Society (ILADS) guidelines, instead.

The Maine guide also falls down when explaining about how to diagnose Lyme. For example, it does not explain to readers that diagnosis of Lyme disease does not require a positive blood test. A blood test is NOT required to diagnose Lyme disease. Anyone with an erythema migrans, the rash often associated with Lyme, should be diagnosed with Lyme; a blood test is unnecessary in this case.

Further, laboratory tests -- especially the two-tier testing the Maine guide recommends -- are notoriously inaccurate for tick-borne disease, frequently showing false negatives (saying the patient does not have the disease when they actually do). If a patient or doctor want a somewhat more reliable Lyme or other tick-borne disease test, a lab that specializes in tick-borne disease testing is preferable. In the US, the two options are Clongen Laboratories or IGeneX Reference Laboratory.

The guide also does not refer doctors or patients to Maine's own Lyme disease organization, MaineLyme. MaineLyme is a nonprofit organization devoted to decreasing cases of tick-borne disease in Maine through awareness, prevention, education, and advocacy. MaineLyme's website provides information on Lyme disease in people and animals, prevention, and patient support.

Visit the MaineLyme website.

Worldwide Lyme Disease Awareness Protest

Lyme disease activists from around the world are coordinating a day of activism to bring attention to Lyme disease on May 10 and 11, 2013. Activists list six goals for the protests:

According to the website worldwide patients are raising awareness and protesting to highlight the need for:

1. Recognition that Lyme disease/borreliosis, and other tick-borne infections, such as Babesia, Bartonella, Rickettsia, Ehrlichia, are serious, and sometimes fatal illnesses.  

2. Awareness of the fact that the transmission of tick-borne pathogens, such as borrelia, babesia, rickettsia, via blood transfusion is of global concern. 

3. Agreement that Lyme disease/borreliosis should be listed as a notifiable infection. Notifiable status will aid in ensuring that the incidence and spread of this disease are monitored, a necessary precursor to determining the human suffering and socioeconomic impact of the disease. 

4. Education of the healthcare sector regarding the accurate diagnosis of Lyme, which in some cases may be limited to clinical presentation due to limitations of serological testing. 

* Education should ensure all doctors are familiar with the CDC caution pertaining to criteria for blood tests for Lyme: “This surveillance case definition was developed for national reporting of Lyme disease; it is NOT appropriate for clinical diagnosis. . . Surveillance case definitions are created for the purpose of standardization, not patient care.” * Education that Lyme should be included as a differential diagnosis when considering other illnesses that are also reliant on subjective clinical presentation, or have no known cause. This includes, but is not limited to: Motor Neurone Disease (MND) also known as Lou Gehrig’s disease or Amyotrophic lateral sclerosis (ALS) ; Multiple Sclerosis ; Alzheimer’s; Parkinson’s disease; Sarcoidosis. 

5. Education of the healthcare sector regarding affordable and effective treatment of both acute and chronic Lyme and other tick-borne infections. This includes the need to update the outdated treatment guidelines of the Infectious Diseases Society of America (IDSA) and to take into account the treatment methods of other Societies such as: The International Lyme and Associated Diseases Society (ILADS) and the German Borreliosis Society (Deutsche Borreliose-Gesellschaft : DBG) 

6. Funding for research into tick-borne diseases. Including: Funding for medical research into accurate Lyme testing and treatment ; Funding for research into vectors and reservoir hosts to determine what diseases they may carry and transmit. 

In Maine, the protest will take place on May 11 at Monument Square, Portland. Angela Rice is coordinating the Lyme disease protest in Maine. Participants are encouraged to hand out brochures and tick kits, hang lime green ribbons, sign petitions, and to take part in a letter-writing campaign.

More information about how Mainers can get involved is available at the protest website or on the Facebook planning page. Lyme activists and allies from other states or countries outside the US can find out what's happening in their area at the worldwide Lyme disease awareness protest website, as well.