N.H. in critical need of updated Lyme and tick-borne disease education, treatments
May is Lyme Disease Awareness Month and Mental Health Awareness Month. These modalities are inextricably linked because there is now a mental health crisis among those with tick-borne diseases.
During the recent legislative session HB 490 Amendment addressed the need for updated physician, patient, and public education. Testimonies by members of the Legislation and the public, myself included, discussed concerns that NH’s Health Care System and Media are continuing to tell the public 30 year outdated protocols, and doctors often give patients a false sense of security if a tick hasn’t been attached for at least 36-72 hours they can’t get Lyme Disease.
More than 60% of black legged ticks in NH test positive for borellia burgdorferi, known as Lyme Disease. New research has shown that tick borne diseases are transmitted from 15 minutes (Powassan), and possible far less than 24 hours for Lyme and other pathogens, including anaplasmosis, Babesia, Ehrlichiosis, and also Bartonella, which is still not recognized in NH as an infectious disease.
The NH Medical Society and NH HHS (NH Health and Human Services) continue to take the position they are focused on prevention. Where do you patients go if they are past the point of prevention and are suffering with late stage tick borne diseases? It’s a 6-8 month waiting list to see one of four Lyme Literate Medical Doctors in NH. Some insurance plans don’t cover the cost of chronic tick borne disease treatment, and patients are often too sick to work. Some patients are finding themselves homeless with very limited resources for help. Some are turning to opioid use to deal with the relentless chronic pain.
NH is the top three in the Country for Lyme, Opioid, and Suicide crisis. Research by NJ psychiatrist Dr Bransfield found that in 2017 more than 1200 suicides, and 31,000 attempts, in the US were a direct result from Lyme and tick borne diseases. Governor Chris Sununu acknowledged the Lyme suicide crisis in a letter to the EPA last year requesting they accelerate the process of evaluating a natural tick repellants made from cedar oil to use on the landscape.
“Inadequately diagnosed and inadequately treated Lyme/Tick-Borne Diseases as well as inadequately treated mental illnesses are contributing to the opioid epidemic. Clearly not all opioid deaths are associated with Lyme or mental illnesses, but many are and better attention to both of these problems can contribute to reducing the severity of the opioid crisis.” Dr Bransfield wrote in his testimony letter to the NY Senate Committee. Based on the strict CDC Lyme Surveillance Criteria, research suggests more than 40 people in NH took their lives last year as a result from Lyme and associated diseases.
As Dr. Robert Bransfield explains, “Lyme and other tick-borne diseases contributes to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms.”
The NH Lyme Bill, HB 490 Amendment – A Lyme and Tick Borne Disease Study Committee would meet with physicians, patients, stakeholders, and mental health care advocates to research the inaccuracies in Lyme tests and educate physicians on alternative treatment methods including from IDSA – the Infectious Disease Society of America, and ILADS – International Lyme and Associated Diseases Society, an organization comprised of healthcare professionals committed to the comprehensive understanding, study and treatment of Lyme and other tick borne diseases.
The House voted 100% in support on the Consent Calendar and the Senate voted 100% in support of HB 490, including stakeholder support, however, the NH Medical Society said in the Hearings it is a bad idea to include patients in their own health care decision making. They asked the Senate for more time and the bill was re-referred to Committee. Essentially it was a way to successfully stall movement on Tick Borne Disease education in NH and start the process all over – again – next year.
It’s time for NH’s health care system to come together and start addressing the seriousness of the Tick Borne Disease epidemic. Physicians and mental health care specialists need training from Lyme Literate physicians to learn how to recognize the symptoms. A paradigm shift is required in current healthcare policies to diagnose TBD so that patients can get tested and treated for opportunistic infections. New data from MyLymeData Report on 4,000 patients found 72% did not receive acute treatment, compared to only 12%, and 52% of Lyme patients were first misdiagnosed as psychiatric, significantly delaying TBD treatment on average 3 years. (MyLymeData is currently among the top 5% of patient registries in the nation).
The citizens of NH can’t wait any longer for the Medical Society’s excuses to stall much needed physician, patient, and public education. How many more lives destroyed and lost is it going to take for the Medical Society to let go of the political divisiveness and come together, reach across the aisle, and get to work helping the citizens of NH who are in critical need of health care?
The citizens of NH are asking you to help us. Patients can’t wait another year. It’s been the same rhetoric for too long. Putting politics ahead of the health of people suffering is not working. We need a updated plan using current unbiased research to treat patients. We need change. And we need it today.
Please call and write your local representatives asking them to support Lyme Legislation. Call and write the NH Medical Society (NHMS.org) and NH Health and Human Services Division of Public Health and let them know it’s time to help patients suffering with late stage tick borne diseases. Together our voices are powerful. Together we can work together for change. The time is now.
Misdiagnosed for more than 30 years, Kathie Fife, from Canterbury, is a Lyme/TBD advocate and has co-written Lyme bills and testified at the Legislature.