Your Lyme Journey

Project Lyme has put together an innovative and interactive tool to help you along “Your Lyme Journey,” providing guidance from Lyme-literate medical professionals, access to cutting-edge science, and patients’ first-person stories.

What
is Lyme?

What is Lyme disease? Could you have it? This section provides critical resources on Lyme disease and it’s tick-borne coinfections that will help everyone from novices to experts.

Understanding Tick Bites

What is your risk of being bitten by a tick? Could you have come into contact with one but don’t know for sure? This section provides resources on how to prevent tick bites and guides you on how to react should you be bitten.

Seeking Diagnosis

You are exhibiting symptoms of Lyme disease and/or tick-borne coinfections. What are your options? This section compiles resources to help you navigate your next steps, including information about your diagnosis and treatment options.

Exploring
Treatment

Treatment for Lyme disease and tick-borne coinfections can mean more than taking antibiotics for a few weeks. This section guides you towards healing by educating about self-care strategies, alternative treatment options as well as improving mental health. Keep in mind, not all patients require the same treatment so it is important to work with your specialist to develop a protocol that works for you.

*This section is continually being updated. More resources on treatment protocols will be coming soon. We are working with medical doctors and Lyme specialists to finalize this stage.

Achieving Remission

Recovery from Lyme is different for everyone. What does remission mean for you? Some people are able to resume their old lives, but may still face lingering issues, be it emotional scarring or physical weakness. Project Lyme offers resources about how to live well, maintain your health and get support.

Lyme disease is a bacterial infection transmitted when an infected tick bites a human or animal host. The main tick responsible for the disease is the blacklegged tick or deer tick (Ixodes scapularis). The primary pathogen causing the illness and making people sick is called Borrelia burgdorferi, a corkscrew-shaped (spirochete) bacterium and the most common Borrelia species in the United States. More broadly, people may refer to Lyme as an encompassing term for all tick-borne diseases.

From their creepy, crawly appearance, you might have guessed ticks are related to spiders. Like spiders, ticks have eight legs and bodies divided into two sections, making them arachnids and not insects. 

Ticks feed on the blood of their hosts, including humans and animals. Approximately 900 species of ticks inhabit the world, with new tick types emerging periodically. Although ticks with Lyme disease are of primary importance to public health, ticks carry various other bacteria, viruses, and pathogens.

A great deal of confusion surrounds the diagnosis and treatment of Lyme disease. To date, the medical community hasn’t reached a consensus on how Lyme disease is diagnosed and treated most effectively. The challenge with Lyme disease is that there isn’t one established set of diagnostic criteria or a surefire treatment protocol that’s universally accepted or successful in the medical community. Patients see an average of five doctors over a two-year period before being diagnosed. 

With up to 440,000 new cases each year, and millions of people enduring persistent, chronic Lyme disease symptoms globally, it’s critical patients are aware there are two schools of thought about Lyme. Patients should feel empowered to make informed choices about their care with their medical provider.

Frequently asked questions

What are the signs and symptoms of Lyme disease?

In the early stages of Lyme disease, the illness may present as flu-like symptoms: fatigue, fever, enlarged lymph nodes, headaches, muscle aches, and joint pain. If the illness progresses to late-stage Lyme, which occurs in 10-20% of patients, they experience ongoing, widespread, multi-systemic symptoms because Lyme bacteria continues to spread through the body.

If I am diagnosed with Lyme disease, is it possible to have other tick-borne diseases?

Yes, these are referred to as co-infections.

How common is Lyme disease?

The CDC estimates 476,000 people are diagnosed with Lyme disease every year. It is the fastest growing vector-borne disease and can be contracted essentially anywhere there are animal populations, including rural, suburban and even urban areas.

How do ticks transmit diseases?

Ticks attach themselves to your skin through biting or burrowing. Once attached they can transfer bacteria, such as the spiral bacterium borrelia burgdorferi, they may have acquired from attaching to other animals such as deer, birds, mice, etc. If the tick is infected, the spirochete is then transmitted to the bloodstream of the person or animal during the bite.

Do you need to have seen a tick bite to have Lyme disease?

No, because they do not stay attached forever, the tick may be gone before you have the opportunity to identify it. For this reason, Project Lyme encourages you to follow all of the awareness and prevention steps presented in this section.

How long does it take for Lyme to transmit through a bite?

There is not currently a concrete answer to this question, but Project Lyme follows the simple rule that if you find a tick transmission is a possibility and requires further diagnosis by a medical professional. Keep in mind, the longer the tick is attached, the higher the risk it will transmit Lyme disease or other tick-borne infections into the bloodstream.

What is tick paralysis?

Tick paralysis is the only tick-borne disease that is not caused by an infectious organism. The illness is caused by a neurotoxin produced in the tick’s salivary gland. The tick inoculates the host with a toxin from tick salivary glands during a blood meal.

Why is Lyme disease so hard to diagnose?

This has become a systemic issue because there isn’t an established set of diagnostic criteria that’s universally accepted by the medical community. For example, the two-tier ELISA and Western blot Lyme disease tests indicated by the CDC miss approximately half of all cases. This is why Project Lyme invests in research focused on diagnostics.

Why is it hard to get coverage for Lyme treatment?

Most Lyme specialists spend much more time with their patients than traditional insurance reimbursement rates allow. Because the CDC only recommends a 10-14 day supply of antibiotics to treat Lyme disease, anything outside of this usually will not be covered by insurance

How do I treat my Lyme disease?

For those with positive Lyme disease tests, the CDC recommends a standard 10- to 14-day course of antibiotic therapy. However, even when treated early, an estimated 10% to 20% of Lyme patients continue to have symptoms for six months or more. For this reason, Project Lyme has provided educational resources on supplementary treatment options that we encourage you to discuss with your physician.

How does Lyme disease affect the brain?

Some patients may experience neuropsychiatric involvement from factors, such as brain inflammation, poor sleep, and the presence of coinfections. Several psychiatric symptoms have been linked to Lyme, including depression, anxiety, panic attacks, bipolar disorder, obsessive-compulsive disorder, and more.

Is there a cure for Lyme disease?

There is currently no study that shows Borrelia Burgdorferi, the causative agent of Lyme Disease, can be fully eradicated from the body. However, this does not mean you cannot achieve remission by getting symptoms under control with the help of a medical professional.

faqs

Tick Testing Labratories

Financial Resources

Support Groups

TickChek LLC

TickChek LLC

562 Independence Road

East Stroudsburg, PA 18301

Contact (toll-free): 1-866-713-TICK

New Jersey Laboratories

New Jersey Laboratories

1110 Somerset Street

New Brunswick, NJ 08901

Contact:

Phone: 732-249-0148

Fax: 732-249-0243

Laboratory of Medical Zoology (LMZ)

Laboratory of Medical Zoology (LMZ)

Fernald Hall, University of Massachusetts

Amherst, MA 01003

Contact

Email: info@tickreport.com

Connecticut Veterinary Medical Diagnostic Laboratory

Connecticut Veterinary Medical Diagnostic Laboratory

Department of Pathobiology and Veterinary Science

61 North Eagleville Rd., U-3089

Storrs, CT 06269-3089

Contact

Phone: (860) 486-3738

Fax: (860) 486-3936

Email: CVMDL@uconn.edu

Direct link to tick testing services: http://cvmdl.uconn.edu/service/tick.php

Ticknology

Ticknology

1612 Laporte Avenue Unit 6

Fort Collins, CO, 80521

IGeneX

IGeneX

795 San Antonio Rd

Palo Alto, CA 94303

Contact: 800-832-3200

Sam’s Spoons

Sam’s Spoons is a 501(c)(3) nonprofit offering financial assistance to people living in Pennsylvania who need help paying for treatment and medical expenses. Grants up to $2,000 may be awarded.

Address: 2455 Hume Lane, Enola, PA 17025

Ticked Off Foundation, Inc.

Ticked Off Foundation, Inc. is a 501(c)(3) nonprofit with a mission to assist adults 26 years of age or older who are in crisis by providing grants, treatment discounts, and counseling services with a licensed social worker.

Address: 115 Ward St., Norwalk, CT 06851

LymeAid 4 Kids

LymeAid 4 Kids is a program run by Lyme Disease Association, Inc., a 501(c)(3) nonprofit dedicated to helping uninsured children 21 years or younger obtain testing and treatment. Recipients may receive up to $1,000 to offset expenses.

Address: PO Box 1438, Jackson, NJ 08527

 

LivLyme Foundation

LivLyme Foundation is a 501(c)(3) nonprofit whose mission is to provide grants to children age 21 years old or younger to assist with medication and treatment costs.

Address: 700 Colorado Blvd #674, Denver, CO 80206

Ride Out Lyme

Ride Out Lyme is a 501(c)(3) nonprofit with the goal of providing financial assistance to adults 26 years of age or older. Grants can be applied to the cost of testing, treatments, doctor visits, medication, and supplements. Grant amounts vary depending on available funding. 

Address: 1 Grove St., PO Box 812151, Wellesley, MA 02482

LymeLight Foundation

LymeLight Foundation is a 501(c)(3) nonprofit providing grants to children and young adults. The program assists with up to $15,000 for an individual or $30,000 for a family for treatment-related costs, including lab testing, doctor visits, and medications.

Address: 1229 Burlingame Ave., Suite 205, Burlingame, CA 94010

Lyme Treatment Foundation, Inc.

Lyme Treatment Foundation, Inc. is a 501(c)(3) nonprofit aimed at providing grants to people of all ages for diagnostic testing and treatment of Lyme disease and coinfections. The program assists with up to $4,000 in diagnostic and treatment costs to a Lyme specialist.

Address: 102 NE 2nd St., Suite 907, Boca Raton, FL 33432

 

San Diego Lyme Alliance

San Diego Lyme Alliance

Address

884 Portola Road, Suite A7, Portola Valley, CA 94028

Website

https://www.bayarealyme.org/san-diego-lyme-alliance/

Michigan Support Groups

Michigan Support Groups

Address

53001 Baker Road, Chesterfield Township, MI 48047

Contact

Linda Purdy, LPurdy1040@aol.com 

Website

https://www.mlda.org/resources/supportgroups.aspx

Generation Lyme

Generation Lyme

Address

229 E 85th St, New York, New York, 10031

Contact

Jennifer Hoffmann, jenniferh@projectlyme.org 

Website

https://www.genlyme.org/

Indiana Lyme Connect

Indiana Lyme Connect Support Group

Address

1075 Broad Ripple Ave, Suite # 252, Indianapolis, IN 46220

Website

https://www.indianalymeconnect.org/support/indianapolis-support-group/

Lyme Connection

Lyme Connection

Address

Town Hall Annex, 66 Prospect St., Ridgefield CT 06877

Contact

Karen Guadial, RLDTF@comcast.net

Website

https://lymeconnection.org/support_and_resources/supportgroups.html

Virginia Support Groups

Virginia Support Groups 

Address

Fairfax City Regional Library, 10360 North Street, Fairfax, VA 22030-2514

Contact

Monte Skall, natcaplyme@natcaplyme.org 

Website

https://natcaplyme.org/support-groups/#virginia

Johns Hopkins Sibley Memorial Hospital Support Group

Johns Hopkins Sibley Memorial Hospital Support Group

Address

Johns Hopkins Sibley Memorial Hospital,New Medical Building, Room 2, 5215 Loughboro Road, N.W., Washington, D.C. 20016-2634

Contact

Monte Skall, natcaplyme@natcaplyme.org 

Website

https://natcaplyme.org/support-groups/#washington-dc

Harford County Support Group

Harford County Support Group

Address

Upper Chesapeake Medical Center, Chesapeake 1 Conference Room, 500 Upper Chesapeake Drive, Bel Air, MD 21014

Contact

Janet Jensen, harfordlymeadvocates@gmail.com 

Website

https://natcaplyme.org/support-groups/#maryland

Anne Arundel County Support Group

Anne Arundel County Support Group

Address

Anne Arundel Medical Center, Belcher Pavilion, 2000 Medical Parkway, Annapolis, MD, 21401

Contact

Rob Cloutier, frederickcountylyme@gmail.com 

Website

https://natcaplyme.org/support-groups/#maryland

Central North Carolina Support Group

Central North Carolina Support Group

Address

10323 Idlewild Rd, Mathews, North Carolina, 28105

Contact

John McClean, charlottelyme@gmail.com 

Website

https://natcaplyme.org/support-groups/#north-carolina

Texas Lyme Disease Association

Texas Lyme Disease Association

Address

P.O. Box 1811, Colleyville, TX 76034-1811

Contact

Kingwood Lyme Support Group 

Leesa Shanahan: 281-960-2559

Diane Kahler 713-876-0523

Website

https://www.txlda.com/support-groups/

Florida Lyme Support

Florida Lyme Support

Address

3975 Fruitville Rd, Sarasota, FL 34232

Contact

Carol Fisch, (941)-923-5277, carolflmi@aol.com

Website

http://floridalymesupport.com/index.html