Carl Tuttle’s Statement to NH Commission to Study Testing for Lyme & TBD
Carl Tuttle is a long time New Hampshire advocate. He is a member of the New Hampshire Commission to Study Testing For Lyme & Other Tick-Borne Diseases. The charter is to “study the use and limitations of serological diagnostic tests to determine the presence or absence of Lyme and other tick-borne diseases and the development of appropriate methods to educate physicians and the public with respect to the inconclusive nature of prevailing test methods.” Below is a statement he read at the last meeting, which he then shared with the LDA.
COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
Since the last meeting I have sent nine emails with topics to discuss in our meetings. The emails have contained many supporting references to my claim that serology is no better than a coin toss, harm caused by false negative Elisa tests reported to the NH Dept of Health ten years ago, comments from 340 NH residents with many reporting delayed diagnosis due to false negative serology and a list of references identifying seronegative disease. A recent Johns Hopkins study reveals that if you’re not treated within the very narrow widow of 30 days, you run the risk of ending up with chronic Lyme disease  and yet humans won’t produce antibodies to the infection for 4-6 weeks after a tick bite. So, by the time serology is positive, if ever, it’s already too late as the spirochete responsible for Lyme disease were just recently identified in the brains of mice one week after infection. 
The possibility of missing a timely diagnosis is extremely high in a state with one of the highest rates of Lyme in the country especially in the absence of a bulls-eye rash. This was the case with all Tuttle family members. None of us developed the bulls eye rash, none of us met the strict CDC criteria for positive test results and as I mentioned previously, if we had not met Dr. Sam Donta, none of us would have been treated.
The sobering fact about this travesty is that it has been going on for over three decades and no matter how many complaints are submitted, nothing changes and lives continue to be ruined by an infection misclassified as a simple nuisance disease; “hard to catch and easily treated.” Everyone here is a single tick bite away from experiencing this health disaster as tick-borne disease infection rates in the ticks found in Litchfield for example are as high as 77% as indicated in the 2009 UMass tick study I sent to all of you yesterday. Of course, all these details are well hidden from the public. So I hope that we can make a difference here, get the truth out to the public and save lives that otherwise would have been upended by this life-altering/life threatening infection.
Ben Franklin once said, “Justice won’t be served until those unaffected are as outraged as those who are.”
Treatment Delays Increase Risk of Persistent Illness in Lyme Disease
Pike County Tick Borne Diseases Task Force Releases Results Presentation
The Pike County (PA) Tick Borne Diseases Task Force has provided a 6 minute video slide show with results from the Pike County Tick Borne Diseases Base-Line Study, a county-wide assessment of the tick-borne diseases and infection rates of ticks funded in part by a 2018 grant awarded by the LDA.
From Spring 2018 through Fall 2019 black-legged ticks in the nymph or adult stages were collected and tested for seven different disease-causing pathogens. Other types of ticks, including one Asian longhorned and one lone star tick, were collected but not tested.
There was nearly an even split between the number of male and female ticks collected. Results of this study show that over half of the male deer ticks tested positive for various tick-borne pathogens, * with a similar finding in the female population.
The study also addressed co-infections with 123 of 988 black-legged ticks testing positive for two or more pathogens. The highest co-infection observed was Lyme disease and Anaplasmosis.
*It should be noted here that current research seems to indicate that male deer ticks do not transmit the Lyme bacteria, or rarely transmit, with varying reports of either they do not feed or briefly feed, and do not become engorged.
New Publication: Ticks and Tick-Borne Diseases of Colorado
A review article has just been published by the Journal of Medical Entomology describing the ticks and tick-borne diseases of Colorado which includes tick-host associations, geographic distributions and medical/veterinary importance. In this article, 28 species of endemic ticks in Colorado are described as well as an additional 5 species that are occasionally detected, 13 exotic species that have been intercepted and 2 new state records: Argas radiatus and Ixodes brunneus.
This review creates a baseline for Colorado endemic ticks and tick-borne diseases, ticks that have been classified as visitors to the state via travel related introductions that may not have established populations, as well as identifying potential invasive species and human and veterinary health risks.
In review of available research and records of tick collections in Colorado, it was found that some information was outdated, incomplete or inaccurate. Authors have recommended that increased surveillance for ticks in Colorado would likely be beneficial to add to the knowledge base on resident tick species and potential new species as ticks continue to expand in geographic range in association with migrating birds, habitat modifications and other changing environmental factors.
The review article was co-authored by advocate and LDAnet member, Monica White. Monica is President and Co-Founder of Colorado Tick-Borne Disease Awareness Association, an affiliate of the national Lyme Disease Association, Inc..
Access to article: H Joel Hutcheson, James W Mertins, Boris C Kondratieff, Monica M White, Ticks and Tick-Borne Diseases of Colorado, Including New State Records for Argas radiatus (Ixodida: Argasidae) and Ixodes brunneus (Ixodida: Ixodidae), Journal of Medical Entomology, tjaa232, https://doi.org/10.1093/jme/tjaa232
The Lyme Wars are Not Over for Patients & Treating Physicians
Almost a decade ago, Lyme advocates in Minnesota, pursuing Lyme doctor protection legislation, settled for a compromise from the State Medical Board which issued a Moratorium taking action against doctors who treat long term. The Moratorium was reviewed and extended in 2014, while awaiting more research on the topic.
According to the Minneapolis Star Tribune, this week the Board decided to reinstate sanctions on doctors who choose to treat long term.
Lyme Disease Association president, Pat Smith addressed the reinstatement: “This is a decision that is a blow for Lyme patients in Minnesota and the Lyme community at large. It exemplifies the fact that opposition to recognizing chronic Lyme and the treatment often necessary for its victims is alive and well. We have looked to the government for answers, but although it has begun to be more cooperative with patient advocates and treating physicians, it has still not acknowledged the problem of chronic Lyme disease, despite 427,000 cases of Lyme in the US in 2017. Statistics indicate 15-20% or more of Lyme patients may develop chronic disease. The lack of government acknowledgement has enabled the Infectious Diseases Society guidelines to prevent those with chronic Lyme from receiving necessary treatment, since doctors who use clinical judgement and treat out side ‘guidelines,’ may find themselves being sanctioned, as has happened throughout the US in the past. “
Illinois Governor Signs Law Expanding Insurance Coverage for Lyme Disease Treatment
On August 12, 2019, Illinois Governor, JB Pritzker, signed House Bill 889 into law which will expand insurance coverage for Lyme Disease testing and treatment. According to the Governor, this new legislation has been greatly needed and is a big step forward in protecting children and families throughout the state.
Tick-borne illnesses have been on the rise throughout Illinois since 2004, and have had an especially devastating effect on working-class farming communities.
“Many are losing their homes, their businesses and their pensions to try and pay for continued treatment,” said Illinois Lyme Association Director Jennifer Russell. “This legislation provides them with desperately needed options.”
The new law will be a great source of support for families who have struggled to pay for the high costs of continuous treatments often associated with long-term recovery. “State government ought to be standing up for working families … Expanding health care coverage is one important way to help lower costs and build a higher standard of living for all Illinoisans,” said Governor Prizker.
Lyme Disease Association, Inc. has not yet reviewed this legislation.
Congressional Town Meeting Weathered the Storm
On May 29, 2019, The Lyme & Tick-Borne Diseases Congressional Town Meeting Sponsored by Congressman Christopher H. Smith (NJ-4) was held in the Wall Township, NJ, Municipal Building. Despite tornado warnings, flash flood warnings with torrential rains, a packed house of more than 200 people attended the three and a half hour event.
Wall Mayor Kevin Orender gave opening remarks on the seriousness of Lyme followed by Congressman Chris Smith discussing the spread of Lyme and tick-borne diseases and the difficulties of getting legislation passed to try to prevent disease and to help get research monies for patients who have difficulty getting diagnosis and treatment. He showed a stack of bills he has authored over two decades for Lyme disease. Dr. Ben Beard, Deputy Director , CDC Division of Vector-Borne Diseases, spoke on “Tick-Borne Diseases in the US: Burden, Trends, & What You Can Do To Protect Yourself.” Dr. Richard Horowitz, Internist in Private Practice in New York, provided “Updates in the Diagnosis & Treatment of Lyme & Chronic Disease.” Pat Smith, President, Lyme Disease Association, Inc., presented “Lyme & Tick-Borne Diseases: Their Spread, The Ticks, & Government Activity.”
Lyme & Tick-Borne Diseases Congressional Town Meeting
The Lyme & Tick-Borne Diseases Congressional Town Meeting will be held Wednesday, May 29, 2019 from 6:45pm-930pm at the Wall Township Municipal Building Community Room, 2700 Allaire Rd, Wall Township, NJ. The town meeting is sponsored by US Congressman Christopher H. Smith. Hear from nationally-recognized Lyme disease experts about current efforts to combat Lyme and Tick-Borne diseases, updates on diagnosis and treatment, and how to protect yourself and your family, and more. LDA president, Pat Smith, will join US Congressman, Christopher H. Smith; CDC, Deputy Director, Division of Vector-Borne Diseases, Ben Beard, PhD; and Richard Horowitz, MD as speakers at the meeting. Seating is limited, and advanced registration is required. To register click here, or visit ChrisSmith.House.gov.
NJ Passes S-560 1997 Places Ticks Under Mosquito Control
Below is an excerpt from this bill which places tick control in mosquito control. CLICK HERE FOR BILL
County mosquito control agencies throughout the State are
11 currently staffed and equipped to control nuisance and vector species
12 of mosquitoes. These commissions or agencies provide a central
13 operational unit within each county with the capability to advise and
14 assist 1[a State Lyme Disease Vector Management Board] the
15 Department of Health1 in the development and implementation of an
16 integrated approach to 1[the control of tick populations on public
17 lands within each county] manage tick-borne disease vectors1.
18 (cf: P.L.1991, c.277, s.1)