- 👋 @lymewiki is an open-source, community-driven collection of resources to provide information to Lyme patients.
- 👀 We're interested in documenting and compiling science-based Lyme resources, research, and more about Lyme symptoms, diagnosis, and treatment and making important Lyme science accessible to all
- 💞️ This is a Lyme-community driven effort and Lyme patient perspectives and experiences are respected and prioritized here. Our community values center on empathy, respect, and learning together. This community acknowledges the existence of and plethora of work dedicated to studying chronic Lyme disease.
No Github account, but want to contribute? Submit contributions here!
Note: This wiki is a public, information-sharing resource and does not constitute medical advice. Please consult with your medical team before starting, making modifications to, or stopping treatments.
| Content | Type | Summary |
|---|---|---|
| Basic resources | Resources | Popular Lyme sites, books, videos, groups for broad information |
| Treatment protocols | Resources | A consolidated set of publicly-available protocols |
| Symptoms | Experiences | Lyme and co symptoms can manifest in a variety of ways, we share a variety of studies here |
| Mental health | Experiences | Studies show Lyme and other co-infections can have an impact on mental health |
| Resource | Tickborne disease | Type | Summary |
|---|---|---|---|
| LymeDisease.org | All | Website | Website providing Lyme and TBDs info and partnering with patients to learn info about Lyme from MyLymeData |
| International Lyme and Associated Disease Society | Lyme | Website | Website providing information to patients and providers about Lyme disease diagnosis, recommended treatment. Home of ILADS provider search, connecting patients to Lyme-literate medical doctors. |
| ProjectLyme | All | Website | A non-profit educating and assisting patients on their Lyme journeys. |
| Lyme Reddit | Lyme | Community | An internet support community for those struggling with Lyme Disease and other Tick Borne infections |
| Under our Skin- Exposing the hidden epidemic of Lyme disease | Lyme | Video | A real-life thriller, this shocking festival hit exposes the controversy surrounding Lyme disease. Following the stories of patients and doctors fighting for their lives |
| Under our Skin 2- Investigating the Lyme Disease Crisis | Lyme | Video | Investigates the deepening Lyme disease crisis and follows its casualties and controversies. |
| The Quiet Epidemic | Lyme | Video | A feature-length documentary about Lyme disease. |
| Cure Unknown: Inside the Lyme Epidemic | Lyme | Book | A groundbreaking and controversial narrative investigation into the science, history, medical politics, and patient experience of Lyme disease told by a science journalist whose entire family contracted the disease. |
| Protocol | Tickborne disease | Type | Summary |
|---|---|---|---|
| ILADS treatment guidelines | Lyme | Website | The ILADS recommended treatment guidelines (not a protocol, but provides recommendations) |
| Horowitz MSIDS approach | Lyme | Paper | To-do: plain language summary |
| Horowitz double-dose dapsone | Lyme | Paper | To-do: plain language summary |
| Marty Ross Protocol | Lyme | Website | To-do: plain language summary |
| Marty Ross Bartonella Protocol | Bartonella | Website | To-do: plain language summary |
| Marty Ross Babesia Protocol | Babesia | Website | To-do: plain language summary |
| What is Bartonellosis? What's my treatment plan? | Bartonella | Website | To-do: plain language summary |
| Mozayeni- Persistent Bartonella Infection | Bartonella | Video | Potential treatment strategies start at 1:00 |
| Breaking Bartonella | Bartonella | Community | Facebook group loosely attached to Mozayeni’s protocol |
| Burrascano- Examining Bartonella | Bartonella | Video | Potential treatment strategies start at 0:26 |
| Protocol | Tickborne disease | Type | Summary |
|---|---|---|---|
| Horowitz MSIDS 38 point symptom checklist | Tickborne diseases | Website | A questionnaire to determine the probability of having Lyme disease and other tick-borne disorders. |
| LymeDisease.org symptom checklist | Lyme | Website | A checklist to help you document exposure to Lyme disease and common symptoms for your healthcare provider |
| Burrascano extensive list of Lyme disease symptoms | Lyme | A checklist from DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES By JOSEPH J. BURRASCANO JR., M.D. Copyright, September, 2010 | |
| Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group | Lyme | Paper | To-do: plain language summary |
| LDo: Severity of chronic Lyme disease symptoms | Lyme | Paper | To-do: plain language summary |
| Protocol | Tickborne disease | Type | Summary |
|---|---|---|---|
| Lyme disease: a neuropsychiatric illness | Lyme | Paper | Depressive state common in Lyme. |
| The Impact of Lyme Disease on Mental Health: Understanding the Connection and Seeking Support | Lyme | Website | Overview of Lyme and mental health impacts. |
| Lyme Disease Heightens Risk of Mental Disorders, Suicidality | Lyme | Paper | Lyme heightens risks of self-harm, mental disorders |
| Aggressiveness, violence, homicidality, homicide, and Lyme disease | Lyme | Paper | LD aggression was often impulsive, bizarre, and senseless, with 9.6% LD patients showing homicidal tendencies after an average 9-year diagnosis delay. |
| Anger & Lyme Disease: What to Know About Lyme Rage | Lyme | Website | An overview on Lyme rage |
| Swamp Boy by Kris Newby | Bartonella | Website | An article about a boy who was diagnosed with psychosis, schizophrenia prior to being diagnosed with Bartonella. |
| Do Bartonella Infections Cause Agitation, Panic Disorder, and Treatment-Resistant Depression? | Bartonella | Paper | Case studies about mental health issues and Bartonella |
| Study: Bartonella Infection Associated With Psychiatric Symptoms and Skin Lesions | Bartonella | Website | A summary of a study that highlights connection between artonella and mental illness |
| Study Finds Evidence of Bartonella Infection in Schizophrenia Patients | Bartonella | Paper | A website that summarizes a study describing Bartonella in patients with schizophrenia. |