Cost is free and open to the public. This support group has been started to raise awareness of Lyme disease and to share resources for prevention and treatment. For more information please contact Leslie

Due to the date being only one day after the LNNM SG meeting we are encouraging you to attend this SG in Richfield. I have surgery scheduled that day so I will not be able to attend but this is a much needed development for Lyme Disease victims here in Minnesota.

TICK TALK DELIVERY PROBLEMS

Last months Tick Talk was blocked from all AOL subscribers. Contact the AOL postmaster revealed that they could see no reason for the block and a test message to an AOL address has since gone through.

NEW ONLINE YAHOO GROUP FORMED

For details visit http://groups.yahoo.com/group/Midwest_Lyme_Disease/

NY OPMC REFORM ON TRACK

----- Original Message -----
From: "ellen lubarsky"
To: ;
Sent: Friday, May 06, 2005 11:37 AM
Subject: [ChronicLyme] New York Lobby Day Feedback

> Hi folks,
> Sorry to be so late in letting you all know how lobby day in New York went. Recovery time after an event
> takes a while.
>
> Lobby Day was fabulous. I don't know how else to describe it.
>
> Initial feedback indicates that we succeeded in getting our message across to the legislators.
>
> And our sense of community builds with each activism event. Despite shlepping hours to get to Albany and the difficulty of > actual lobbying, we managed to actually have a lot of fun. And that spirit of community helps us all keep going.
>
> We knew we were there representing every Lyme patient who was not able to get there.
>
> We met primarily with members of the Assembly Codes committee, because the OPMC due process bill is now in
> that committee. That bill is S5057/A7757.
>
> Word from behind the scenes was that Codes staff had not been fond of the bill because they thought it only
> protected physicians and not patients.
>
> So our job was to let them know that giving doctors due process with the OPMC WOULD protect patients'
> rights to treatment. And I think we completely succeeded in doing that.
>
> We also lobbied for another bill - S4590/A5239 authored by Nettie Mayersohn, Joel Miller and Adam
> Bradley. That's the bill that would give Lyme doctors a copy of the complaints lodged by insurance
> companies and a copy of the expert witness testimony against them. This bill has a Senate sponsor for the
> first time, Senator Vincent Leibell.
>
> Those legislators who had been following us for the last few years were impressed that we bounced back
> after the Governor vetoed the OPMC Reform Bill last year.. Apparently, many groups just go away after
> that.
>
> We promised we would not go away. And we are certainly being tested.
>
> The legislators also understood the strategy that brought us back to Albany. When the Governor vetoed
> the OPMC Reform Bill last year, he cited the memos written by many groups opposing the bill.
>
> HOWEVER, a review of these memos after the veto revealed that none of the groups objected to the due
> process changes that were important to us. (Last year's bill had included many procedural changes to
> the OPMC that were not major due process issues.

> SO the original OPMC Reform Bill has been broken into several different bills. We are lobbying for only one
> of those bills - the OPMC Due Process bill S5057/A7757.
>
> This bill contains everything we want and nothing that any group objected to last year.
>
> Hopefully, this will translate into the Governor letting this bill pass into law.
>
> Of course, it will still take much work at each step of the way.
>
> I will keep everyone posted as to what is happening in Albany. Right now we get a short rest. But we will
> soon need to get busy with calls and letters.
>
> Please keep your eyes open for new posts.
>
> Also, please try to get other New Yorkers to sign up to NYLyme
> by emailing me at [email protected]
>
> And, please write me with any questions or > suggestions.
> Thanks to all,
> Ellen

CDC CONTINUES TO THROW AWAY MORE LYME RESEARCH MONEY
(More money for serodiagnosis for Allen Steere). There has been a shake up in the CDC and an attempt is being made to make diagnosis dependent upon positive test results and a recent press release trumpeting a ridiculous article written specifically to try to discredit Lyme Web Sites by googling medical terms was publicized.

Press Release
For Immediate Release
April 5, 2004 Contact: CDC Media Relations
404-639-3286

CDC Announces New Awards For Lyme Disease Research
The Centers for Disease Control and Prevention (CDC) today announced that
more than $3.5 million will be awarded to 10 institutions for new research
on Lyme disease. The studies are designed to improve understanding of the
disease and to examine new methods for testing, prevention, and control.

Lyme disease is a bacterial infection spread through the bite of an infected
tick. It is the most prevalent vector-borne infectious disease in the United
States, with more than 23,000 cases reported in 2002.

"We know that early diagnosis is crucial to enable prompt treatment to
prevent long-term complications from Lyme disease," said Dr. James M.
Hughes, Director of CDC's National Center for Infectious Diseases. "These
awards will lead to improvements in surveillance, clinical testing, tick
control and community-based prevention programs."

Brief descriptions of the studies along with the names of the principal
investigators and institutions are included below:

Diagnosis, Immunology, and Pathogenesis Research

Diagnosis and Pathogenesis of Early Lyme Disease, Allen C. Steere, M.D.,
Massachusetts General Hospital, Boston, Massachusetts. The goals of this
project are to improve the accuracy of serodiagnostic testing for Lyme
disease, and to identify bacterial and host factors that lead to more severe
disease. Laboratory markers for patients who would benefit from more
intensive treatment may be developed.

Pathogenesis of Lyme Borreliosis in the Rhesus Monkey, Mario T. Philipp,
Ph.D., Tulane University Health Sciences Center, New Orleans, Louisiana.
This proposal will advance understanding of the effects of Lyme disease on
the central nervous systems. Mechanisms of neural injury will be determined
using primate cells in culture.

Analysis of pgf 54 Members in Lyme Disease Serodiagnosis, James A. Carroll,
Ph.D., University of Pittsburgh, Pittsburgh, Pennsylvania. This study will
identify and evaluate proteins that vary as Lyme disease bacteria cycle
between ticks and mammals. These variably expressed proteins will be
evaluated in diagnostic tests and as vaccine candidates.

Innate Immunity in Vector-Borne Lyme Borreliosis, Linda Bockenstedt, M.D.,
Yale University, New Haven, Connecticut. This study will explore factors
that contribute to susceptibility to infection. It also will examine the
characteristics of Lyme disease bacteria that are "crippled" by antibiotic
treatment.

Lyme Disease Diagnosis with Host Gene Expression Arrays, Ira Schwartz,
Ph.D., New York Medical College, Valhalla, New York. This investigation will
examine how cells from mice and humans respond to infection by Lyme disease
bacteria. Gene expression that changes with infection will be monitored
using a technique called microarray analysis. New diagnostic tests for
active infection may be developed based on these changes.
Tick-Control Research

Spatial Risk Model for Ixodes scapularis-borne Borrelia, Durland Fish,
Ph.D., Yale University, New Haven, Connecticut. This project will lead to
the development of a GIS-based surface map of the population density of
nymphal ticks and prevalence of Lyme disease spirochete infection to
estimate human infection risk in the eastern United States.

Assessing Community-based Tick Control for Lyme Disease Mitigation, Thomas
N. Mather, Ph.D., University of Rhode Island, Kingston, Rhode Island. This
proposal will assess and evaluate tick control attitudes and practices
before and after implementing an aggressive community outreach program for
tick control in Rhode Island. A comprehensive training manual for
implementing community-wide tick control programs throughout the Northeast
also will be developed.

Control of Ixodes scapularis, Eddy A. Bresnitz, M.D., New Jersey Department
of Health and Senior Services, Trenton, New Jersey. This investigation will
test integrated pest management strategies, assess effectiveness of a
sustained deer reduction program, and evaluate effectiveness of broad-scale,
seasonal acaricide (pesticide against ticks) applications to reduce tick
populations and Lyme disease incidence in New Jersey. In addition,
educational materials on tick management to improve tick control practices
in New Jersey will be developed.
Community-based Prevention Programs

A School-Based Intervention to Reduce Lyme Disease, Nancy Shadick, M.D.,
M.P.H., Brigham and Women's Hospital, Boston, Massachusetts. This project
will evaluate the effectiveness of an efficient, cost effective,
school-based intervention program in reducing the incidence of Lyme disease
in endemic areas.

Prevention of Lyme Disease in Connecticut, Matthew Cartter, M.D., M.P.H.,
Connecticut Department of Public Health, Hartford, Connecticut. This study
will evaluate the effectiveness of integrated prevention measures to reduce
the risk of Lyme disease in the United States, and will evaluate the costs
of these interventions in relation to the number of cases prevented.
# # #

CDC protects people's health and safety by preventing and controlling
diseases and injuries; enhances health decisions by providing credible
information on critical health issues; and promotes healthy living through
strong partnerships with local, national, and international organizations.
kay www.lymesite.com

ONGOING SUPPORT GROUPS
Next Duluth Support Group Meeting Tuesday June 7 7pm St Luke's Hospital Clinic. Contact: Tom Grier [email protected]
Next Twin Cities Support Group Meeting Tuesday June 14 7:30pm First Lutheran Church of Columbia Heights. Contact Lynn 651-645-2474 (note new phone number) or Paul 763-559-9618
Other resources may be found at www.lymemn.org/support