CDC Reduces Chronic Lyme Numbers – Early Conf. Registration Ending Sun!

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Changing the Face of Lyme through Research, Education & Patient Advocacy

News & Updates                        September 2016
Don’t Delay – Early Registration Ends Sunday 9/11!



Take advantage of the lower conference rates now – early registration ends 11:59pm EST on Sun 9/11
Lyme & Tick-Borne Diseases: New Strategies to Tackle an Expanding Epidemic
St. Paul, Minnesota
October 15 & 16. 
Hotel room block ends 9/15 or earlier if full (more info)
The conference is designed for doctors and researchers who can receive CMEs for attendance, but the public is also invited to register. An included reception will enable conference attendees to network with the conference faculty. 

Scholarships for med students/post docs/NP doc candidates/others are still available thanks to generosity of the Steven & Alexandra Foundation. (more info)

The Minnesota Lyme Association (MLA) is offering to sponsor the attendance of MN public health officials at the conference. (more info)

CDC Reduces Numbers Suffering From Chronic Lyme

Investigative journalist Mary Beth Pfeiffer has broken a story in the Huffington Post that has significant impact on patients. For years, the Centers for Disease Control & Prevention (CDC) has been citing 10-20% of patients treated with antibiotics for Lyme will have lingering symptoms. Now, CDC has changed that stat on its website to say a “small percent” will have lingering symptoms that can last for more than 6 months of what is “properly called Post-Treatment Lyme Disease Syndrome,” not “chronic Lyme disease.”
In a website paragraph without even a citation to back it up, the CDC has reverted back to the dangerous dogma which has prevented patients with chronic Lyme from receiving treatment. Ms. Pfeiffer contacted CDC to ask about the change in language and was told it was based on a 2015 study (Weitzner 2015) which indicated a frequency of less than 5% for Post Treatment Lyme Disease Syndrome and on a reevaluation of the Marques study from which the 10-20% estimate was originally derived. Click here for Pfeiffer Huffington Post article 
No mention is made by CDC of the many studies which show the figure for chronic Lyme/PTLDS to be much higher, and the Dersch 2015 paper, which is an analysis of dozens of studies showing a resultant 28% with long-term symptoms. No reevaluation information from that Marquez study-a reevaluation they purported to have performed– seems to be provided anywhere, and no peer review on that reevaluation issue appears to have surfaced.
A double standard is in play, as the broad-brushed conclusions on the long-term treatment trials for patients, conclusions supported by both CDC and NIH–long term treatment provided no benefit to Lyme patients–have been challenged in a number of peer review articles, which refute those broad brushed conclusions; yet to date, neither CDC nor NIH have changed/softened their position on that issue and continue to support that data on websites while ignoring science which refutes those conclusions.
This double standard has enabled the IDSA to continue to select and use the same biased science for the basis of their Lyme treatment guidelines which prevent patients from receiving antibiotic treatment when they remain symptomatic. Many advocates have written to CDC to make it aware of that injustice, but CDC’s stance has not shifted (nor has NIH’s).
They do NOT want patients to be treated for more than a few weeks for a severely mentally and physically debilitating disease. That has been a fact for most of my 32 years of involvement as an advocate. They never wanted to acknowledge the numbers, or the spread− none in the South and the Midwest they insisted– using selective science to support those stances. Now the increasing Lyme case numbers which CDC has finally had to acknowledge (300,000 cases annually) and the fact that the tick vectors for Lyme now occur in almost 50% of the counties in the US has presented them with a dilemma. More disease in more places means more chronic patients who are seeking treatment.
According to the CDC answer to Ms. Pfeiffer cited in the Post article on the change downward in numbers of PTLDS cases, “this is not a substantive change….The point of the paragraph is simply to make patients aware that PTLDS occurs.” The tens of thousands afflicted with chronic Lyme annually don’t need to be told they have a syndrome, nor do they need to be marginalized more than they already have been for decades. They do not need continuing dogma that initiates more studies designed to repeatedly and unsuccessfully camouflage the truth about Lyme and its persistence, “science” that has sucked hundreds of millions of dollars from government coffers-funds that were allocated by our federal representatives to provide real help for sick people not to erase them from the public consciousness.
Patients need and deserve a substantive change, a solution using 21st century science, e.g., persisters, biofilms, other mechanisms the Lyme bacteria use to avoid complete eradication. An agency whose job is to provide disease control and prevention for the American public should be championing that solution rather than standing behind shoddy science destroying individuals and families across this country and the world. Pat Smith, LDA President

Delaware Bills Focus on Tick Control & Educating Doctors

_L to R_ Sen. Ernie Lopez_ Rep. Pete Schwartzkopf and Gov. Jack Markell. Cape Gazette_Photo Credit – Chris Flood

On 8/29/16, Delaware Governor Jack Markell joined Speaker of the House Rep. Pete Schwartzkopf (D-Rehobeth) and Sen. Ernie Lopez (R-Lewes) for the signing of 2 Lyme disease bills.

These bills are a direct result from the findings of the June 1, 2015 Lyme Disease Prevention Task Force Report.
This Act enforces the task force recommendation of an Integrated Pest Management strategy incorporating acaricide use, biological controls, management of tick-host animals and backyard habitat management. 
An Act to amend Title 16 of the Delaware code relating to the creation of an oversight board to educate health care professionals about Lyme disease.

Delaware declared May 2016 Lyme Disease Awareness Month and sent LDA the resolution (click here for article
Lyme on Agenda At Women in Govt. Conference

Pat Smith
Pat Smith LDA

LDA President Pat Smith has been invited by the Women In Government Foundation, Inc. (WIG) topeak at its 17th Annual Southern & 18th Annual Eastern Regional Conference (9/29-10/1) in Bar Harbor, Maine. WIG, Washington, D.C., “is a national, non-profit, non-partisan organization of women state legislators that provides leadership opportunities, networking expert forums, and educational resources to address and resolve complex public policy issues to all 1,783 women state legislators.”

On the WIG agenda for September 30, in a session entitled, “How to Reduce Negative Impact of Lyme Disease,” Ms. Smith will discuss issues related to Lyme which could benefit state legislators across the country in their decision making. (Agenda)
The LDA President will be part of the Lyme panel speaking at the conference which also consists of Beatrice M. Szantyr, MD, Internal Medicine, Pediatrics & Adolescent Medicine and Paula Jackson Jones, President, Midcoast  Lyme Disease Support & Education, a partner with the Lyme Disease Association LDAnet Umbrella group.
Ms. Smith has been twice invited to speak at the Midcoast Lyme Disease Support & Education public Lyme conference held in Maine, and both times, a number of state legislators were present at the well-attended conferences.  Maine State Representative Deborah J. Sanderson (R-Chelsea) approached the LDA President at the most recent event about possibly speaking at the WIG conference and followed up through Paula Jackson-Jones of MidCoast who has coordinated with the legislator.

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