Because many Vermont children are home due to Covid-19 school closures VTLyme.org is emphasizing prevention this spring; creating new prevention posters and sending resources directly to town health departments and school administrators. As part of schooling at home we are encouraging schools and families to utilize a free online K-12 prevention curriculum.
The primary mission of VTLyme.org is to provide Vermonters and their health care providers equitable information about Lyme and tickborne diseases. It has been a busy year as we continue in our new role as a 501c3 nonprofit organization. VTLyme.org:
- Hosted information tables at local events and professional conferences throughout Vermont
- Presented free information on Lyme and tickborne diseases to Vermont schools, libraries, community organizations and businesses
- Provided free resources about the prevention and diagnosis of tickborne illnesses
- Developed new education and outreach materials, including a brochure on the impact of tickborne diseases on Mental Health and a poster about the potential impact of tickborne illness on pregnancy
- Proposed ideas for collaboration with the Vermont Department of Health to improve resources for Vermonters affected by tickborne illnesses
As an all-volunteer organization, we appreciate your support. If you are able, please give $10 to our GoFundMe campaign, donate on our website, or simply email us and let us know what you think we can do to support Vermonters affected by tickborne diseases.
Covid-19 has impacted our plans. VTLyme.org will be promoting May as ‘Tickborne Disease Awareness Month’ remotely, and while we cannot staff information tables or give in-person presentations, we have worked hard this winter to get all of our resources available online, including a new brochure about mental health and tickborne diseases, and our informational presentations.
In Our Community….
Julie Gagnon-Prior presented VTLyme.org with a check for $10,300.00 from the sales of her Vermont Pin-Up Girl Calendar. Her extraordinary effort, with the support of her community up in Grand Isle, gives VTLyme.org the ability to continue giving free education programs and materials including a new guide to help Vermont health care providers accurately recognize and diagnose tickborne illnesses. Calendars are still available at $10 each, $12 with shipping. To order a calendar email Julie at [email protected] or visit her facebook page.
Local TBD Media
Julie Gagnon Prior and Pat Bannerman were interviewed last winter about the Pin Up Girl Calendar and Lyme disease. WCAX did a follow up on the story in March when Julie presented her check to VTLyme.org.
Press releases by VTLyme.org have been published by multiple local papers including the Caledonian Record, VT Journal, and Bennington Banner. Topics included tick bite prevention, symptom awareness, and education resources.
Lyme and Mental Health
VTLyme.org is working to ensure health care providers are aware of the impact tickborne diseases may have on mental health. Our new brochure includes information about how anxiety, depression, ODC, and suicidal thoughts can all be caused by a tickborne illness. We have also expanded the section about mental health on the VTLyme.org website.
State of Tickborne Disease in Vermont
In February 2020, VTLyme.org submitted a report to the Vermont Department of Health with suggestions about improving Lyme and tickborne disease outreach. This was just before the Covid-19 pandemic, and we will follow up with the VDH after they address this immediate crisis.
You can read the full report at VTLyme.org. Below are three important takeaways:
1. Problems with Surveillance
According to the VDH and CDC, the incidence of Lyme disease in Vermont went down in 2018. However, according to the VDH’s 2020 ‘Performance Scorecard on Vector-Borne Diseases,’ the rate of completed investigations of Lyme disease case reports dropped sharply from 91- 92% in 2015–2017, to 76% in 2018.
From 2015 to 2017, when more than 90% of reports were investigated, VT had one of the highest incidence rates in the US. In 2018, when only 76% of reported cases were fully investigated, Vermont’s official CDC incidence rate dropped sharply. The relationship between lower completed case reports and lower incidence rates is not noted by the CDC or the VDH.
2. VDH Annual Reports Overstate Efforts and Partnerships
The 2017 Tickborne Disease Annual Report (published in June, 2019) states that the VDH “Organized the state’s ‘Tickborne Disease Awareness Month’ in May” with an official proclamation by the Governor’s office, a press release, numerous media interviews and a partnership with Green Up Vermont.” But in 2019 there was no proclamation signed by the Governor about “Tickborne Disease Awareness Month.” From 2016-2019 only two press releases from the VDH (May 2, 2016 and May 24, 2017) mention “Tickborne Disease Awareness Month” in Vermont, and the VDH Facebook Page from 2017- 2020 had only a single post related to “Tickborne Disease Awareness Month” (referring to the 5/24/17 press release)
Significantly, a search showed zero VDH press releases in 2019 about tickborne diseases.
3. VDH Webinar for Health Care Providers is Flawed
The VDH created a webinar to help Vermont providers better diagnose and treat tickborne diseases, the Lyme Disease portion of the VDH Webinar has information that is incorrect, or misleading. In February VTLyme.org submitted a detailed review of the webinar to the VDH and to Dr. Dejace, the physician who gave the Lyme presentation.
According to the Vermont Medical Society’s ‘Health Care Public Policy Priorities for 2019’, “The increasing incidence of tickborne illness presents a significant threat to the health and well-being of all Vermonters.” To address this threat, it is VTLyme.org’s hope that the VDH will collaborate with VTLyme.org, and other stakeholders in Vermont, to ensure accurate surveillance, continuing prevention efforts, and access to comprehensive and equitable information for Vermont’s health care providers about the diagnosis and treatment of Lyme disease and tickborne diseases.
TBD Diagnosis Manual
In May, VTLyme.org will be publishing a guide to help providers accurately diagnose tickborne diseases in Vermont. This is a response to the many emails and reports we have received about egregious errors made by medical providers in the diagnosis of Lyme and tickborne diseases in Vermont. In 2019 these have included:
- Vermonters who were tested for Lyme disease early in their infection, and then told (incorrectly) that a negative test meant they didn’t have Lyme disease.
- Vermonters with fevers who were told that, since they didn’t have a ‘bulls-eye’ rash, it couldn’t be Lyme disease.
- Physicians who were unaware that ticks in Vermont can spread other tickborne illnesses in addition to Lyme disease.
- Vermonters feeling stigmatized when seeking care for Lyme disease.
- Vermonters who were misdiagnosed or received a delayed diagnosis of a tickborne illness.
Let Fellow Vermonters Know What Worked for You!
VTLyme.org is working on a website section called “What Worked for Me” where individual Vermonters with Lyme and tickborne diseases share what helped (or didn’t) address their symptoms and healing process. We would love to hear your story, so please contact us if you would like to share your experience via social media and/or on our website.
Save the Date(s)!
FREE COVID-19 WEBINAR
On April 27th at 7pm the Burlington Area Lyme and TBD Support Group is presenting a free Webinar by Dr. Stram and Dr. DiRoma for a discussion on COVID-19 updates, symptoms to watch for, testing information, and support options for healing at home – followed by a Q&A. Once your registration is received, a link to the webinar will be sent to your e-mail. Register here.
SUPPORT GROUP MEETING DATES
The Burlington Area Lyme and TBD Support Group 2020 meeting dates are May 17, July 12, Sept 13, and November 8.
Please note: the May group will meet remotely via zoom. The May meeting will feature guest speaker Brendan Kelly. Brendan is an acupuncturist and herbalist from Jade Mountain Wellness in Burlington, VT and will discuss a Chinese medicine understanding of Lyme disease and how conditions like pain, headaches, fevers, digestive issues, rashes, tiredness and neurological issues are interrelated and treatable.
After Covid-19 restrictions are lifted, the support group will return to meeting from 1pm-3pm at PT 360, 426 Industrial Avenue, Williston VT.
Donate To VTLyme.org
We are seeking 1,000 Vermonters to join us with a $10 donation to VTLyme.org. Reaching this goal will show we have strong community support as we apply for grants to help Vermonters affected by Lyme and other tickborne diseases. VTLyme.org, founded in 2016, is the only 501c3 non-profit organization in the state focused on supporting Vermonters affected by Lyme and tickborne diseases.
Vermont is the second highest in the USA for incidence of Lyme disease! Please donate today.
We Serve You
If you know of a way VTLyme.org can support Vermonters affected by Lyme and other tickborne diseases we’d like to know more. Please contact us with your suggestions.