Project Lyme is a 501c3 nonprofit that exists to educate and assist. We have put together an innovative and interactive tool to help you along “Your Lyme Journey.” By clicking on one of the tiers you will find resources like articles, blogs, videos, and webinars tailored to your stage on the journey. For those interested in an unfiltered view click below.
Project Lyme’s mission is to eradicate the epidemic of Lyme disease and other tick-borne illnesses by spreading awareness, providing educational resources, funding peer-reviewed research, and supporting advocacy for solutions to end the suffering. Since 2016, Project Lyme has challenged misinformation about diagnosis and treatment, advocated for patients’ rights, and built a community for Lyme patients as well as their loved ones.SEE OUR IMPACT
Although a rash at the site of a tick bite is often the first sign of the transmission of the bacteria that causes Lyme disease, many patients never develop a rash. In addition to the stereotypical bull’s-eye rash, rashes can vary in size, shape, color, and features, making it difficult to determine if Lyme bacteria caused the lesion. Rashes may also appear in locations other than the tick bite or may not be discovered. Most physicians (and people who have been bitten by a tick) incorrectly assume if a bull’s-eye rash did not form, the person did not become infected. In this new study, researchers discovered most rashes were uniform in color (51%), pink (74%), oval (63%), and with clear borders (92%). Only 6% had the classic bulls-eye pattern. Additionally, Borrelia Burgdorferi can cross the placental barrier, both infecting and causing harm to your unborn child. Learn more about congenital Lyme disease on our website.
Transmission of Lyme and other bacterial, viral, and parasitic infections can take place in a matter of minutes, particularly if the tick is not removed properly. In this study, partially fed ticks that were re-attached to a new host were found to transmit Lyme to 83% of hosts within 24 hours. Powassan virus infection has been documented within 15 minutes of tick attachment. This recent scientific review confirms what Lyme specialists have seen in practice: There is no minimum attachment time for transmission of infection. The arbitrary minimum attachment presumption is extremely misleading and can have life-altering consequences if infections are not treated early.
There are multiple factors that contribute to the result of your test including the timing of when a test is taken, the type of test you use, whether you are infected with a different strain of Borrelia or another vector-borne infection, and the strength of your immune system.
Based on available testing for Lyme disease, it can still be difficult to determine who has the illness, the most effective course of treatment, and when treatment can be discontinued. The CDC currently recommends a two-step testing process for Lyme disease that was developed for surveillance purposes, the enzyme-linked immunosorbent assay (ELISA) and the Western blot. Unfortunately, this two-tier testing for Lyme disease misses approximately one-half of actual cases pursuant to numerous peer-reviewed studies. States like Maryland and Virginia have enacted laws requiring laboratories or doctors to explicitly inform you that you may still have the infection, even if you test negative for Lyme disease.
Simply put, you can’t rule out Lyme with existing laboratory tests and as such, a clinical diagnosis is often necessary. Learn more on our webpage How Do You Test For It?
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. A neurological symptom known as Bell’s palsy or facial drooping may occur in certain people.
Late-stage, disseminated, persistent, or “chronic Lyme disease” represents a large portion of the Lyme patient population. When a Lyme disease diagnosis is missed or delayed, the illness can progress to late-stage Lyme, in which ongoing, widespread, multi-systemic symptoms are present.
To learn about all symptoms, visit our resource, What Are The Symptoms?
There are at least fifteen known infections that can be transmitted by ticks including Borrelia burgdorferi (the bacteria that causes Lyme disease), Bartonella, Babesia, Anaplasma, Ehrlichia, Rocky Mountain Spotted Fever, Powassan virus, Heartland virus, Tularemia, Borrelia miyamotoi, Brucella, and more. You can also develop Alpha-gal syndrome, which can potentially cause life-threatening allergies to red meat after being bit by a lone star tick . Many of these tick-borne diseases present with overlapping symptoms. Learn more about all known tick-borne diseases on our co-infections page.
Lyme disease often starts with flu-like symptoms: fatigue, fever, enlarged lymph nodes, headaches, muscle aches, and joint pain. Then the bacteria disseminate throughout the body and may affect the central nervous system, the cardiological system, the musculoskeletal system, the endocrine and reproductive system, the gastrointestinal system, the urological system, and the skin. Find out more on our Lyme symptoms page or see your likelihood of tick-borne disease by taking our symptoms questionnaire.
According to CDC surveillance criteria, there are incidences of Lyme disease in every state. While some states have higher rates of infection, these numbers are all subject to error given the known issues with testing criteria.
There is no one-size-fits-all treatment for Lyme disease and every person’s path to recovery will look a little different. Immediately following a tick bite, most Lyme doctors recommend 4-6 weeks of oral antibiotic therapy as a prophylactic (usually 200 mg of doxycycline taken twice per day). However, for an acute tick bite experts suggest longer courses and the need for combination therapy, as patients may have multiple co-infections, or weakened immune systems that need additional support. There are also a variety of naturopathic or alternative medicine ways that patients treat. Learn more about treating tick-borne diseases in our Exploring Treatment section.
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Project Lyme works to build a highly educated network of patients, caregivers, and community members. We regularly host events covering topic areas critical to fighting this growing epidemic.ATTEND AN EVENT
Mothers Against Lyme is a community built to empower moms facing Lyme disease and tick-borne illnesses. As an initiative of Project Lyme, we host virtual Meet-Ups to provide a safe space in where moms can feel welcome, inspired, and supported. .LEARN MORE