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 Day 19

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A Tick-ing Time Bomb?

Did Adam Lanza Have Lyme Disease?

by JESSICA BERNSTEIN

As the nation has been questioning how Adam Lanza could have committed such an unfathomable act, mental health issues have been at the forefront of the discussion. However, knowing that Newtown is located in a highly Lyme-endemic area, many in the Lyme community recognize that neurological lyme disease could be part of the answer to what led to the Connecticut shooting.

Although most people or animals with Lyme or other tick-borne diseases are not violent, a small percentage have demonstrated violent behavior. Many may remember the chimpanzee named Travis who attacked the woman and tore off her face. That chimpanzee had Lyme disease and lived in Connecticut.

Psychiatrist Robert Bransfield, M.D. estimates that aggressive behavior has been a significant issue for approximately 100 to 200 patients with Lyme disease that he has evaluated or treated. He also emphasizes that most patients with Lyme or other tick-borne diseases, “are not violent and should not be stigmatized….Clearly violence is a very complex issue. Many different factors have contributory or deterrent effects.”

Florida physician Rick Sponaugle, M.D., an expert in brain disorders featured on many national news shows, has treated over 2,000 patients who were previously misdiagnosed by psychiatrists as having bipolar disorder due to rage issues when the majority of them had Lyme disease. Sponaugle says, “I diagnose Lyme disease in 95 percent of my patients with Adam [Lanza’s] personality profile.”

As a critical health issue, the state of Connecticut knows a lot about lyme disease because it has one of the highest rates in the nation and is home to the city after which the illness is named. Senator Blumenthal chaired a hearing in August, 2012 exploring next steps that the federal government must take to combat the disease.

Newtown is well aware of the problem too. In a plea for help with Lyme disease research found on the Newtown government website, Director of Health Donna Culbert asserts, “It’s no secret that tick-borne diseases are a top public health concern in Newtown. As Newtown’s Health Director, it’s heart wrenching to hear of entire families being impacted, from doing schoolwork to be able to perform at work, effects range from disruptive to devastating to debilitating…all from contracting a tick-borne disease.”

It may seem surprising then that Lyme disease has not been raised by Connecticut public officials as a possible contributing factor to the Lanza case. Particularly since many medical professionals and Lyme patients have been contacting them urging that Lanza be tested. Lyme patient KT Pierce sent in an on-line petition with 227 signatures to the mayor of Newtown just before the autopsy was conducted.

Despite Blumethal’s advocacy for Lyme patients, there is a vested interest by many others in keeping this costly illness out of the national spotlight. Increasing numbers of Lyme patients are seeking long-term treatment while HMOs are battling to keep coverage at a minimum.

Lyme disease has reached epidemic proportions in areas throughout the United States with rates more than doubling since 1991. There are approximately 20,000 new cases of Lyme disease reported each year in the United States. However, the CDC, estimates that the actual number of new cases is closer to 10 times that. Compare that number – 200,000 – to an estimated 50,000 new HIV cases each year, and it becomes clear why some refer to Lyme as the hidden epidemic.

The illness afflicts people of all ages and has devastating effects on individuals, families, and their livelihoods. Patients suffer from a range of debilitating symptoms such as profound weakness and fatigue, memory loss, paralysis, excruciating headaches, numbness, burning and tingling sensations, extreme light and sound sensitivity, chronic pain, cardiac issues, anxiety, and depression. California Lyme specialist Deborah Metzger, M.D. estimates that 1 out of every 4 Lyme patients in her practice is unable to work and 15 to 20% are homebound due to the condition.

While acute Lyme is widely acknowledged to be an infectious disease, the medical community is polarized in its view of chronic Lyme disease. Recognizing Lyme as  a chronic illness would have significant financial repercussions in terms of cost of treatment.

According to the CDC, only about 10 to 20% of Lyme patients treated with a 2 to 8 week course of antibiotics have lingering symptoms. They believe that persistent symptoms are likely due to residual damage to tissues and the immune system, rather than to a continuing active infection.

The CDC acknowledges that, if untreated, a Lyme infection can persist months to years after the tick bite. However they still believe that only 2 to 8 weeks of antibiotics is required to eradicate the infection regardless of its duration.

Other medical researchers, represented by the International Lyme and Associated Diseases Society (ILADS), argue that chronic Lyme disease occurs as the result of a chronic infection that requires prolonged treatment. They feel that a 2 to 8 week course of antibiotics is inadequate to eradicate the infection in patients with ongoing symptoms.

Although the CDC’s stance is that there are relatively few patients with ongoing debilitating symptoms, doctors in the ILADS camp assert that there are many cases that are simply going unreported, undetected, and misdiagnosed.

The current 2 to 8 week course of treatment recommended by the CDC is relatively inexpensive. A 2006 study published by the CDC found that from 1997 to 2000 the mean direct medical cost for early-stage Lyme was $464 per patient and $1,380 per patient for late-stage Lyme. HMO’s are eager to accept these recommendations to limit their liability.

Doctors and patients who insist that this recommended treatment has not eradicated the infection are fighting to get these recommendations changed. Dr. Metzger explains that the average length of long-term treatment is usually 1 to 5 years. For those who need IV antibiotics the cost can run as high as $12,000 to $36,000 per year.

Given the large number of patients seeking long-term treatment, the Lyme community has an uphill battle on its hands. A report by Nightline cited a letter in which a major health insurance company promised to seek discipline against doctors who diagnosed and treated chronic Lyme. The Lyme Times has regularly reported how Lyme doctors are under attack. State medical boards have restricted the licenses of several doctors. Others who recognize chronic Lyme disease face charges for treating patients for more than the CDC recommended 2 to 8 week course of antibiotics or for offering repeated antibiotic therapy when patients relapse.

Meanwhile, blood testing for Lyme and the other tick-borne infections is highly inaccurate. All of the tests have been shown to have high false negative rates. Inaccurate tests means countless numbers of people are not being properly diagnosed. Fewer Lyme patients means less coverage of treatment for HMOs.

Health care organizations aren’t the only ones who want to downplay the Lyme problem. Some Lyme patients have reported that their communities have stayed silent about the problem out of fear about falling real estate prices and impact on tourism.

The silence around Lyme is taking a serious toll. With proper testing through a brain autopsy, Adam Lanza may turn out to be an example of how undiagnosed Lyme can not only impact individuals but whole communities. An official post about Lyme disease on the Newtown government website warns, “We have NO evidence that we are gaining on this menacing disease, and so it is more important than ever to be aware of your risk and to protect yourself and your family.”

Whether or not Lanza actually had Lyme or one of the other tick borne illnesses, the question still needs to be asked why it is that in an area where there’s such a prevalence of Lyme and and where there’s heightened awareness about the illness, not one local or state official has publicly raised the issue of Lyme disease in connection with this case.

Jessica Bernstein, Psy.D. is a doctor of psychology with Lyme disease who specializes in chronic illness. She is  producing a documentary about illness and suffering: www.bloodandhoney.org