EMPIRE STATE LYME DISEASE ASSOCIATION

*Home * About Us * Contact Us * Donations * Support Group Meetings * Links * JOIN US ! (free) *Archives *Previous page*

OPMC Reform

Signed by Gov. Paterson 2008

and

NYS Doctors are Offered Some Protection

 

Empire State Lyme Informational Brochures (free)-also, you can ask for a customized version for your group

 

Tick- Info Plus (Download 97 page Tick Management free)

 

Lyme and Tick-

Borne Disease Info

· The Beginning

· Rashes

· Early Detection 

· Testing

· Symptoms

· Additional Symptoms

· Co-infections

· Late stage Infection

· Antibiotics

· Treatment

· Herxheimer Reaction

· Mechanism of Action

· Survival Tactics

· The Bad News 

· Conclusion

· Good News

· Prevention

· Alternative Treatments

· Lyme Disease Politics

· Disclaimer

 

**PREVENTION**

 

Lyme tests are not accurate-2005 John Hopkins study

 

Articles on the Persistence and Virulence of Lyme

by Miklossy, Luft, Barthold,  others

 

*Support Group Meetings*

 

Empire State Lyme en Español

 

Michele Moynihan's Presentation "Lyme Disease: Be Lyme Wise* is a Great Educational Presentation for School Children 

 

LYME BOOKS

and Books on 
Tick-Borne Diseases
plus

FREE: THE THIRD

GREAT PLAGUE

 

**Empire State Lyme Disease Association ~ Our Yahoo Discussion Group**

 

Children

Autism and Lyme Disease

Children

LYME & Pregnancy by John Drulle, MD

 

Misdiagnosis

Alzheimer's and Lyme Disease

 

LYME BORRELIOSIS and MULTIPLE SCLEROSIS

 

Worm Parasites, FILARIASIS Nematodes in ticks?

Nematode Spirochete Farmers

Nematode-Bacteria- Symbiosis

10 Questions For Scientists

 

Heart Disease & Lyme Disease & Lyme Carditis
 

Antibiotic

Resistance

 

ILADS TIPS TO AVOID CHRONIC LYME DISEASE

 

**US Senator Chuck Schumer, NY, on the
Board of Empire State 
Lyme Disease Association
**

 

*Donations*

*Contact Us*

*About Us

JOIN US ! (free)

*Archives*

*Links

Support

Group

Meetings

*Home*  

 

Freedom of Information Law Requests

Federal Health Reform

Implementation Timeline

 

Special Thanks

 

In Memory

of Keith Romaine 

 

 
 
*2015 Event Reminders*                       Click for Huntington, New York Forecast

*WOW! A FUNDRAISER WHERE YOU CAN PROTECT YOURSELF AND ALSO HELP OTHERS!  To order AVON Skin So Soft, Bug Guard, etc, go to: http://lymeawarenessfundraiser.avonrepresentative.com/  Please register with your name, email address, create a password & then log in. Remember to check direct mailing. (US & Canada) Proceeds will go to the LDUC & ESLDA!   Click here for more on repelling ticks & see below

Servicing from Moriches to Montauk, Wading River to Orient Point & Shelter Is.  

       http://tickcontrol.com

       631-287-9700, 324- 9700 or 765-9700

SUPPORT GROUP INFO, PLEASE CLICK OR SCROLL DOWN PAGE         

HAVE YOU BEEN MISDIAGNOSED? click here or scroll down

.

 

URGENT PLEASE READ AND RESPOND

Dear fellow Lyme patient and Lyme patient advocates,

The IDSA is preparing to hand down their new guidelines for Lyme disease. As you are probably aware, a major concern is that the IDSA may not consider all the scientific evidence and all the patients' claims while in the process of revising their (previous) guidelines.

In violation of IOM Standards, the panel does not include representatives from key affected groups, including a current or former patient and a patient advocate or patient organization representative.

A second concern is that, as required by National Guidelines Clearing House, organizations are advised to review and appropriately revise their Treatment Guidelines to reflect new science every five years.

The New York State Coalition on Lyme and Tick-borne Diseases has worked very hard to craft a letter which is below that you can send to your United States Senator and Congress member in your state if you agree with our view. Important additional documentation is attached as a pdf file. We feel that it is urgent for everyone be on board in this effort to insure that the IDSA consider all relevant information for their "2015 Guidelines for Lyme and Tick-borne Diseases."

The time element is crucial, since the deadline for comments is April 8th. Please do this immediately if possible.

To find your legislators go to:
https://www.opencongress.org/people/zipcodelookup  and enter your zip code.
--------------------------------------------------------------------------------
PATIENTS / ADVOCATES: The following is a sample letter (in dark blue) which you can send to your legislators

Please copy the letter below, into a different email or on paper.

Then use appropriate "I" or "We" and fill in your information to send to your Senator and Congress member and please download and save the pdf entitled "LYME-DISEASE-INFORMATION-3272015.pdf" which is attached in this email. 

Another way to download is to go here LYME-DISEASE-INFORMATION-3272015.pdf

Remember to attach this pdf document with your email or include a printed copy of this pdf with snail mail letters or faxes to your US rep's.
--------------------------------------------------------------------------------
--------------------------------------------------------------------------------
Dear Senator /Congress member:

I (or We) seek your intervention to ensure that the new treatment guidelines for Lyme disease, currently in the process of being drafted by the Infectious Diseases Society of America (IDSA), will result in guidelines that reflect a complete, fair, transparent, and trustworthy process in accordance with the Institute of Medicine's "Standards for Developing Trustworthy Clinical Practice Guidelines," and also be free of conflicts of interest and demonstrate an inclusion of the entire body of scientific evidence.

I (or We) ask for your attention to this matter because historically the IDSA treatment guidelines have been the only ones endorsed by the NIH and the CDC. Since 2002, IDSA guidelines have been limited and restrictive, resulting in the failure of patients to be informed about their treatment options and the use of such guidelines by insurance companies to deny essential medical care to patients with persistent Lyme disease symptoms, which, in many cases, leads to long term suffering and disability. To ensure the safety and well-being of your constituents, I (or We) ask you to please intervene.

I (or We) respectfully request that you:

1) Please send a letter to the IDSA Directors reminding them that their review should be unbiased and representative of all available science (sample letter is below and IDSA Directors are listed in APPENDIX E)

2) Please send a copy of your letter to the CDC, so they will be aware that biased guidelines might initiate further inquiry.

Background and resource information is attached in a pdf file, for your review.

Your immediate attention to this issue would be appreciated as the IDSA comment period closes on April 9, 2015.

Sincerely,

Patient/advocate to fill In your name and affiliation here

PS: DEAR (Senator/Congressperson), PLEASE SEE BELOW ALSO, FOR:
A PROPOSED SAMPLE LETTER CONGRESSIONAL REPRESENTATIVES MAY SEND TO THE DIRECTORS OF THE CDC, NIH, AND IDSA
* and when sending these letters, please also include a post script to indicate that you are including the attached pdf.

To: Directors of the Infectious Diseases Society of America

cc: Directors of the Center of Diseases Control

Director of the National Institutes of Health

FROM: (Senator/Congressperson)

Medical and scientific experts, patients, and advocates have requested my attention to the matter of the Treatment Guidelines for Lyme disease, now under review by the Infectious Diseases Society of America (IDSA).

Significant evidence has been offered to demonstrate that the process now underway may intend to dismiss or disregard critical scientific research, evidence, and experience that may not be in concert with the historical tenets represented by the IDSA, and that the information considered in this review may be pre-selected in order to justify and support desired outcomes.

It also appears that the IOM Standards, which call for the inclusion of all opinions and the granting of adequate hearing to all arguments by representatives of ALL key affected groups, are being disregarded. Patients with persistent symptoms following treatment, the physicians who treat them and the researchers studying these phenomena should be fully represented on this review panel.

As the stewards of the health and welfare of our constituencies, it is our expectation that a fair, trustworthy, and unbiased review will address all scientific evidence available on this topic. We would particularly like the IDSA to respond to the research listed in the attached/additional pdf file, which includes both new and prior research that may not yet have been given adequate consideration by the IDSA.

The burgeoning threat of Lyme disease requires a responsible and complete response by those charged with the health and safety of the public. Your attention to this matter is of utmost importance.

Sincerely,

Senator or Congress member ____________

*PS:
Please review the attached pdf, LYME-DISEASE-INFORMATION-3272015.pdf

--------------------------------------------------------------------------------

TO ATTACH THE ADDED RESOURCES, CLICK HERE TO DOWNLOAD LYME-DISEASE-INFORMATION-3272015.pdf AND THEN ATTACH IN YOUR EMAILS TO YOUR LEGISLATORS AS SUGGESTED ABOVE
 

.

Save the Date For My Tick Tock Walk

 

 

  Come & walk to raise awareness for Lyme disease

education, prevention & research!  Every step counts!

 

When: Sunday May 17, 2015

Where: Destiny USA 
Canyon Area
9090 Destiny USA Drive
Syracuse, NY 13204

Time: 9 am registration, walk begins at 10 am

 
Please sign up and register using the registration form below!

This is a 1-3 mile walk for Lyme disease awareness. If you aren't able to do the walk, volunteers are needed to man the tables and you are welcome to join us at this event to meet and talk with us.  All participants and guests are required to please read and fill out this form and be assured your information will be kept strictly confidential!

Please enter your Full Name
Email Address:
Street Address
Town or City
State and Zip Code
Phone Number
Please enter your T-Shirt Size
For Family Registrations, please list participant's full names and T-Shirt Sizes
Early Registration by May 7 per person $25.00 ~ Registration per person after May 8 will be on site at $35.00 ~ Early Family Registration $70.00 ~ On site Family Registration $80.00 ~ Please state type of registration requested and see below or go back to www.OurTickTockWalk.org to make a donation

We must receive this form no later than May 7 to guarantee receipt of T-Shirt in requested size

Please note: We offer free registration to volunteers! Also, if you are unable to meet your personal goal, contact us so we can get you on a team! If you want to volunteer or have any questions, please write to us here.
WAIVER: Please write your full name and names of family participants as acknowledgement of this waver: I hereby acknowledge that I am physically able to participate in this event. I waive any and all claims arising out of this event which I might assert against the Empire State Lyme disease Association, its directors, volunteers and members. Parents to sign for a child under 18 years of age.

All Walkers are encouraged to try to raise $200.00 - it's easier than you think!  You'd be surprised how it is when Lyme disease is mentioned, people do want to help! Another way to help is by recruiting teammates.  Ask friends, co-workers and family members to walk with you.  Ask them to sign up on this form by going to www.OurTickTockWalk.org

For more information about the walk, please contact Martha Conan at mconan@twcny.rr.com

If you cannot participate but would like to donate or if you would like to include an additional donation, thank you! Please see donation information at www.OurTickTockWalk.org

If you prefer sending a check or money order, please make payable to Empire State Lyme Disease Association and mail to Empire State Lyme Disease Association Post Office Box 874 Manorville NY 11949 We are a 501(c)3 organization and donations are tax deductible.

The Empire State Lyme Disease Association is a nonprofit charitable organization incorporated in NYS which is dedicated to education, prevention, awareness, advocacy, research, and patient support for tick-borne illnesses including Lyme disease.  Our goal is to prevent chronic tick-borne diseases and end the suffering that results all too often when the signs of Lyme disease are misunderstood.

Thank you!

Create a web form here

Don't let time run out for a cure . . .

Also see www.myticktockwalk.org and www.ourticktockwalk.org 

 

LYME AWARENESS   People across the world held events in May 2014 and to add your voice in 2015 please contact lisahilton4@gmail.com  Find reports on all world wide efforts at www.whatislyme.com  

HELP WITH MEDICINE COSTS http://www.themedicineprogram.com/  

*Support Meetings are free and open to the public* Information about Lyme & tick-borne diseases is provided for educational purposes only. Events are held in Oneonta, Onondaga, Chittenango, Southold, Hauppauge, Riverhead, Middle Island, Plainview, Huntington, Northport, Smithtown, Hampton Bays, Southampton, Glenn Falls, Saratoga, Delmar, Guilderland, Center Moriches, East Moriches, Montauk, Great Neck, the North Shore, Bayville, Baldwin, Rockville Center & etc, across NYS. For a meeting in any area, please contact us! See below

Lyme Disease United Coalition Phone Support Groups Here EMPIRE STATE LYME DISEASE ASSOCIATION INC is affiliated with THE LYME DISEASE UNITED COALITION, LDUC, 150,000 members worldwide and growing! Contact Judith Weeg  Ph 515-432-3628 or free 800-311-7518 Fax  888-746-3810 Email LymeInfo@lduc.org Web www.lduc.org Mail PO Box 86 Story City, IA 50248 LDUC Motto:

“Whoever destroys a soul, it is considered as if he destroyed an entire world. And, whoever saves a life, it is considered as if he saved an entire world.”


We're members of PARTNERS AGAINST LYME Lyme orgs & individuals worldwide: Join PAL to bring us together www.PALtad.org


The Capital Region Chapter
of EMPIRE STATE LYME DISEASE ASSOCIATION INC

Next meeting to be announced!
Our meetings provide an opportunity for participants to raise questions, exchange ideas and experiences, make connections, find locate resources, drawing from the extensive experience of the other support group members. Anyone with questions about Lyme disease is welcome to attend. If you would like to be added to the mailing list to be notified of future events

or for further information, contact bjmeslda@yahoo.com

 

The Fingerlakes Region, Rochester 

Lyme Disease Support Group

of EMPIRE STATE LYME DISEASE ASSOCIATION INC

Support meetings on the third Sunday of Every Month From 2:00 to 4:00 PM 

At the Farmington Town Hall ~  1000 County Road 8, Farmington NY 14425

Email Fingerlakeslymegroup@yahoo.com  or corkyt@rochester.rr.com Ph 585-924-3558

 

Lyme Central New York Chapter

of EMPIRE STATE LYME DISEASE ASSOCIATION INC

Central New York is always the third Monday of the month at 6:30 PM

We are in the Community Room at Natur Tyme
3160 Erie Blvd E Syracuse, New York 13214

More information call 315-200-6541 or email LymeCNY@gmail.com

 

Cortland County Lyme Support Group

of EMPIRE STATE LYME DISEASE ASSOCIATION INC
MEETINGS WILL BE THE LAST WEDNESDAY OF EACH MONTH
WHERE: Marathon High School Room 110, Street, Marathon, NY

Ph 607-849-3127 ~ Laurie at
lauriejtebbe@yahoo.com

 

Central New York Lyme Support
CNYLS provides a place for its members to share feelings & concerns,

offering a faith-based perspective in coping with the complexities of living with Lyme.

Contact CNYlyme@gmail.com or phone 315-687-6540
for the schedule for monthly meeting at Sullivan Free Library, Chittenango.

 

Mountaintop Lyme Support Group

of EMPIRE STATE LYME DISEASE ASSOCIATION INC
 We meet the first Thursday of every month.
WHERE: Hunter Public Library

at 7965 Main Street Hunter, NY

For more information, please contact ~ Regina at mountaintoplyme@gmail.com

 

Rockland County Lyme Disease Support Group

Meets the first Wednesday of each month at 7 PM

Where: Community Room, Suffern Village Hall, 61 Washington Ave, Suffern NY 10901

Who: Those dealing with effects of Lyme disease, family-friends welcome

Contact: Email – nancywc418@aol.com  Facebook- Lyme Disease Support Group, Rockland County

 

Long Island Tick Talk Lyme Disease Support

of EMPIRE STATE LYME DISEASE ASSOCIATION INC

Next meeting to be announced!

Open Forum support group meeting

at the Patchogue-Medford Library, Patchogue, NY

 

Manorville Lyme Disease Support

of  EMPIRE STATE LYME DISEASE ASSOCIATION INC

Next meeting to be announced!

For further information, contact empirestatelyme@aol.com

 

The Northern Dutchess Lyme Disease Support Group

Meets monthly on the second Thursday, 7:30pm

Location: The First Baptist Church, 9 Astor Drive, Rhinebeck, NY.

Facilitator Mary Belliveau, RN Mary@acadiahr.com 

RIDGE LYME SUPPORT GROUP
of EMPIRE STATE LYME DISEASE ASSOCIATION INC

Next meeting to be announced!

WHERE: Ridge Civic Center, Panamoka Trail, Lake Panamoka, Ridge, NY Going west on Rt. 25, you make a right onto Panamoka Trail; go 

3 blocks and the Civic Center is on the right; you will see the firehouse across the street.  Heading east on Rt. 25, go past the William Floyd Parkway

 intersection and continue east until you see "Panamoka Trail road sign on the left. Go left, head three blocks and the Civic Center is on the right.
Info Cathy at chahn720@verizon.net

 

Adirondack Lyme Disease Foundation

with EMPIRE STATE LYME DISEASE ASSOCIATION INC
TO BE ANNOUNCED

For more information, please email lmcallister@nycap.rr.com 

 

A Hope 4 Lyme

Support Meetings usually held at Big Flats Community Center (Room C) 476 Maple Street Big Flats, NY 14814
This is free and open to anyone suffering from Lyme or other tick-borne diseases, caregivers, children, friends & family 

who have questions and-or are looking for answers. CONTACT Linda Wales Director-Treasurer  PO Box 1003 Elmira, NY 14902-1003
www.ahope4lyme.org

 

East Islip Lyme Disease Support

of EMPIRE STATE LYME DISEASE ASSOCIATION INc

  Next meeting to be announced!

Open Forum support group meeting 

at the East Islip Public Library, East Islip, NY

For further information, contact empirestatelyme@aol.com

Back to Top


Also see: Support Group Meetings and Download printable flyers (And you can help us out by posting in public places!)

In an attempt to be available for as many patients as possible, past events have been held across Long Island and across New York State. Future events will be announced. Please contact us if you are interested in meeting in a specific area.  Meetings will be held contingent on the need stated to us by the residents of each community. Info 631-878-6657 or EmpireStateLyme@aol.com or NorthShoreLyme@gmail.com


Read a letter to the NYS Health Dept & the OPMC here


HAVE YOU BEEN MISDIAGNOSED?

Lyme disease mimics other diseases which results in people being misdiagnosed with Fibromyalgia, Chronic Fatigue, ALS, MS, Lupus, Parkinson’s, Alzheimer’s, or other diseases.  Then later, they may find that the 'culprit' is Lyme disease and it could be important not to overlook the AUTISM-LYME CONNECTION If you have Lyme disease, or have a loved one with Lyme disease, if you wish to learn more about one of the fastest growing vector-borne illnesses, support group meetings are for you. Learn about prevention. Lyme disease can be serious, and other serious diseases, like Babesiosis, Rock Mountain spotted fever, Ehrlichiosis, Bartonella, etc., are also transmitted by ticks.

***Report on the Saratoga Lyme Forum, May 21, 2012***  (A Forum on Tick-Borne Diseases - What's NEXT?)

Back to Top 


Ticks Can Be Active All Year Round - Caution Urged

The Empire State Lyme Disease Association urges everyone to be on guard throughout the year. Ticks may be active if the temperature is warm, even in the middle of the winter. The ticks can even become more active in the cooler and damper weather, and can be found in leaves, on trees, and in tall grasses or other leafy areas. ESLDA recommends using caution when moving firewood, walking in the woods or fields, and be especially vigilant in checking children who have been playing outdoors. The use of a commercial tick repellent, wearing light colored clothing, and avoiding leafy or tall grassy areas is recommended for out-door activities. Even if pets are vaccinated, they can bring ticks into the house. Check yourself, check your family members, and check your pets for ticks. 

SEE PREVENTION

Tick-borne diseases, rampant in New York, can be highly complex, and difficult to diagnose and treat. For instance, blood tests for Lyme can return false negative results, leading doctors and patients down long, expensive, and incorrect diagnostic paths. 

SEE TESTING IS INACCURATE

We need more doctors to have extensive experience in the diagnosis and treatment of tick-borne diseases, in all stages and especially advanced stages. New York has a number of outstanding doctors who are helping many patients afflicted with Lyme and other tick-borne diseases. If diagnosed and treated early, patients can recover. If left undiagnosed, or improperly or insufficiently treated, Lyme and tick-borne diseases might turn into life-long debilitation. They can strike every one of the body's systems: digestive, circulatory, psychiatric, cardiac, pulmonary, neurological, etc. Tick-borne diseases are often misdiagnosed as ALS, MS, Chronic Fatigue, Fibromyalgia, psychiatric and many other disorders. Many people suffer with an "unknown disease" for years before they discover that they are victims of tick-borne disease. ;Because there is much conflicting information surrounding Lyme and tick-borne diseases, the Empire State Lyme Disease Association urges everyone to become familiar with prevention, symptoms, the kinds of medical help available, and ongoing support structures. More information can be found here within www.EmpireStateLymeDiseaseAssociation.org 

Specifically go to: 

**LYME DISEASE INFO**

Articles Proving Persistence

**PREVENTION**

**Ticks-download info**

Nematodes, Worm Parasites, Nematodes

**Testing is inaccurate**


Link below to purchase award winning film documentary Under Our Skin:

www.amazon.com/gp/product/B004I0H71I?ie=UTF8&tag=santaclarit07-20&linkCode=as2&camp=1789&creative=390957&creativeASIN=B004I0H71I 


More info, Also Yahoo Discussion Group


CCSVI video by Stanford doctor covers the topic fairly broadly, talks about resolution of symptoms

like brain fog, tinnitus etc in some of patients.

 http://csvi-ms.net/en/content/sir-presentation-prof-dake-available informative  


Click here to listen to a disturbing tape of how the American Academy of Neurology (AAN)

once advertised about treatment for Tick-Borne Diseases


*Important* Does Lyme affect the heart? Click Here for Lyme Carditis


*More information* LYME DISEASE * Symptoms, Misdiagnosis, Testing, Coinfections*

 

The Empire State Lyme Disease Association, Inc. is a nonprofit charitable organization incorporated in NYS and dedicated to education, prevention,  awareness advocacy, research, and patient support for tick-borne illnesses including Lyme disease.  Our goal is to prevent chronic tick-borne diseases, by education about prevention which includes crucial early diagnosis.  We offer patient support and we work for awareness of the need for a quality of health care that needs to be provided to victims of both early and later diagnosed tick-borne diseases. We are dedicated to helping and supporting people suffering from Lyme and associated tick-borne diseases.  Empire State is based in Manorville, NY and is active in local, state, and national issues.  There is a desperate need for more awareness of the potential dangers of tick-borne illnesses.

 

Disclaimer: Information on this site is offered to help further awareness of Lyme and associated diseases.  We hope that the information will help you to become more familiar with the subject of tick borne illnesses, but the information on this web site should not be used as a substitute for medical advice, diagnosis, or treatment.  The information on this web site does not represent endorsement or an official position of Empire State Lyme Disease Association, Inc. or any of its directors, officers, advisors or members.  Please consult a physician for all medical advice, including advice on testing, treatment and care of a patient who has or may have Lyme or any associated tick borne diseases.

Back to Top

In Memory of Keith Romaine

Lyme Poets and Artists

To submit work, contact: EmpireStateLyme@aol.com 

PAINT MAY LYME GREEN http://lymebites.com/ & also www.spirochicks.com

Download printable flyers!

More info, please see: Support Group Meetings

Inspiration:

Paddle Your Own Canoe

Last Modified: March 28, 2015


 

.

Lyme WebRing Here.

The Empire State Lyme Disease Association, Inc. is a nonprofit charitable organization incorporated in NYS and dedicated to education, prevention,  awareness and patient support for tick-borne illnesses including Lyme disease.  Our goal is education about prevention of tick bites and the importance of early diagnosis of the diseases transmitted by ticks.  We offer patient support and work for awareness of the need for health care for victims of both early and later diagnosed tick-borne diseases.Information on this site is offered to help further awareness of Lyme and associated diseases.  We hope that the information will help you to become more familiar with the subject of tick borne illnesses, but the information on this web site should not be used as a substitute for medical advice, diagnosis, or treatment. The information on this web site does not represent endorsement or an official position of Empire State Lyme Disease Association, Inc. or any of its directors, officers, advisors or members. Please consult a physician for all medical advice, including advice on testing, treatment and care of a patient who has or may have Lyme or any associated tick borne diseases Back to Top