Living with Tick-borne encephalitis
An infection spread by tick bites that can inflame the brain and nervous system.
Understanding Tick-borne encephalitis
It is spread mainly by bites from ticks of the Ixodes genus. It often comes in two phases. The first is a flu-like illness with fever, and the second can involve meningitis (swelling around the brain and spinal cord) or inflammation of the brain or spinal cord. It can happen at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Fatigue
- Nausea and loss of appetite
- Muscle aches (myalgia)
- Joint pain (arthralgia)
- Fever in the first phase
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Encephalitis411 and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is caused by the TBE virus, which people usually get from the bite of an Ixodes tick.
Also known as: central european encephalitis; far eastern tbe; russian spring-summer encephalitis; siberian tick-borne encephalitis; taiga encephalitis; tbe
Patient organizations
- Encephalitis411Tick-borne encephalitis · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Tick-borne encephalitis.
Explore research for Tick-borne encephalitis
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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