Overview
Actinomycosis is a rare, chronic bacterial infection caused by bacteria from the Actinomyces group, most commonly Actinomyces israelii. These bacteria normally live harmlessly in the mouth, throat, digestive tract, and female genital tract. However, when tissue is damaged through injury, surgery, dental procedures, or other infections, these bacteria can invade deeper tissues and cause disease. Actinomycosis is sometimes called 'the great mimicker' because it can look like cancer or tuberculosis on imaging and physical examination. The infection most commonly affects three areas of the body: the face and jaw (cervicofacial actinomycosis, the most common form), the chest and lungs (thoracic or pulmonary actinomycosis), and the abdomen and pelvis (abdominal actinomycosis). The hallmark of actinomycosis is the formation of abscesses — pockets of pus — that can develop draining tracts through the skin, releasing characteristic yellowish granules called 'sulfur granules.' Symptoms vary depending on the body area affected but often include slowly growing, firm masses, pain, fever, weight loss, and fatigue. Treatment is generally very effective and relies on prolonged courses of antibiotics, most commonly high-dose penicillin or amoxicillin, given for weeks to months. In some cases, surgery may be needed to drain abscesses or remove heavily damaged tissue. Early diagnosis is key, as delayed treatment can lead to significant tissue destruction and complications. With appropriate treatment, most patients recover well, though the long duration of antibiotic therapy can be challenging.
Key symptoms:
Slowly growing firm lump or mass in the jaw, chest, or abdomenDraining sinus tracts through the skin that release yellowish granulesJaw pain or swellingDifficulty opening the mouthChronic coughChest painAbdominal painFever and night sweatsUnexplained weight lossFatigueFoul-smelling discharge from skin openingsPelvic pain in womenAbnormal vaginal bleeding or discharge
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Actinomycosis.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Actinomycosis.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which type of actinomycosis do I have, and how far has the infection spread?,How long will I need to take antibiotics, and what side effects should I watch for?,Will I need surgery in addition to antibiotics?,How will we monitor whether the treatment is working?,What are the chances the infection could come back after treatment?,Are there any activities or foods I should avoid during treatment?,If I have an IUD, should it be removed?
Common questions about Actinomycosis
What is Actinomycosis?
Actinomycosis is a rare, chronic bacterial infection caused by bacteria from the Actinomyces group, most commonly Actinomyces israelii. These bacteria normally live harmlessly in the mouth, throat, digestive tract, and female genital tract. However, when tissue is damaged through injury, surgery, dental procedures, or other infections, these bacteria can invade deeper tissues and cause disease. Actinomycosis is sometimes called 'the great mimicker' because it can look like cancer or tuberculosis on imaging and physical examination. The infection most commonly affects three areas of the body:
How is Actinomycosis inherited?
Actinomycosis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Actinomycosis typically begin?
Typical onset of Actinomycosis is adult. Age of onset can vary across affected individuals.
Which specialists treat Actinomycosis?
19 specialists and care centers treating Actinomycosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.