MCAS and Lyme Disease

What is MCAS?

 MCAS stands for Mast Cell Activation Syndrome. It occurs when mast cells, a type of white blood cell involved in allergic and immune reactions, release inflammatory compounds into the blood stream in an uncontrolled or excessive manner. Mast cells are an important component of wound healing and immunity but, when overactive, they can cause unpleasant and sometimes severe, life-threatening reactions.

Mast cells are found in almost every tissue in the body, but the highest numbers are seen in the gastrointestinal tract, skin, lungs, bladder, and brain. Inside each mast cell are granules that contain hundreds of chemicals. When mast cells are activated, they release their chemicals, or mediators, in a process called degranulation. The most well-known mast cell mediator is called histamine. Histamine is one of the main mediators responsible for allergy symptoms like runny eyes, runny nose, and itchy ears.

A digitally rendered model of a virus, with a spherical shape covered in spikes, glowing with neon colors against a black background.

MCAS develops when the degranulation process is triggered over, and over, again. When this happens, histamine and other chemical mediators build up in the body, causing a variety of symptoms. Genetic factors appear to play at least some role in this process, but there are also many external triggers that can lead to MCAS. Some possible triggers include:

  • Infections (Lyme, EBV, Bartonella…)

  • Mold exposure

  • Chemical sensitivities

  • Chronic toxin exposure

  • Chronic stress

  • Genetic factors (methylation problems, detox pathway dysfunction, problems breaking down histamine)

  • Eating too many high histamine foods (histamine food list)

What are the symptoms of MCAS?

Because there are mast cells in almost every tissue in the body, symptoms of MCAS can occur just about anywhere. Possible symptoms include:

  • Eyes (redness, itching, blurry vision, irritation)

  • Reproductive (endometriosis, painful periods, hormonal imbalances)

  • Urinary (burning, painful urination, urgency)

  • Skin (rashes, redness, prickly sensations, flushing, dermatographia)

  • Anaphylactoid reactions (difficulty breathing, weakness, nausea)

  • Gastrointestinal (nausea, diarrhea, cramping, food sensitivity, acid stomach/heartburn)

  • Neurological (brain fog, headaches, tingling or numbness, memory issues, anxiety, insomnia)

  • Increasing sensitivity to chemicals, foods, aromas

Not everyone will have every symptom and symptoms often wax and wane.

For a more complete review of symptoms, visit mastcell360.com. If you are wondering if you might have MCAS, there is a symptom survey available as well.

Recently, a paper outlining the recommended diagnostic approach to MCAS was published in the journal Diagnosis (Official Journal of the Society to Improve Diagnostic Medicine). You can read it here.

MCAS appears to be related to many other diseases: POTS, Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome/Myalgic Encephalopathy, Autoimmune disease (RA, Lupus, MS), Hashimoto’s Thyroiditis, and others. Genetic factors are thought to be at play here.

Check out the guide here
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How is MCAS managed?

While there is no known cure, MCAS is a manageable condition. A combination of avoidance of triggers, medications, lifestyle changes, nutritional adjustments, and targeted supplements can be used. Because of the complexities involved in managing MCAS, it is best to work with a trained professional who has experience managing MCAS patients. For more information on managing MCAS, visit Mast Cell Activation Syndrome 101: The Beginner's Guide to Healing.

Frequently Asked Questions about Mast Cell Activation Syndrome (MCAS)

  • Mast Cell Activation Syndrome (MCAS) is a condition characterized by the abnormal activation and release of mast cells, which are immune cells involved in allergic reactions. In MCAS, mast cells release excessive amounts of chemical mediators, leading to a wide range of symptoms throughout the body.

  • The symptoms of MCAS can vary widely among individuals but may include:

    • Flushing or redness of the skin.

    • Itching or hives.

    • Swelling of the lips, face, or throat.

    • Wheezing or shortness of breath.

    • Abdominal pain or cramping.

    • Diarrhea or constipation.

    • Headaches or migraines.

    • Fatigue.

    • Brain fog or cognitive difficulties.

    • Anaphylaxis (severe allergic reaction) in severe cases.

  • Diagnosis of MCAS can be challenging as it requires a comprehensive evaluation of symptoms, medical history, and specific laboratory tests. Some diagnostic tests that may be performed include measurement of mast cell mediators (e.g., histamine) in blood or urine, genetic testing, and specialized tests like bone marrow biopsy or provocation tests.

  • Treatment for MCAS aims to manage symptoms and reduce mast cell activation. It may include a combination of the following approaches:

    • Medications: Antihistamines, mast cell stabilizers, and medications that target specific symptoms or pathways involved in mast cell activation.

    • Avoidance of triggers: Identifying and avoiding triggers such as certain foods, medications, chemicals, or environmental factors that can activate mast cells.

    • Lifestyle modifications: Stress management, maintaining a healthy diet, regular exercise, and optimizing overall health.

  • While MCAS cannot be entirely prevented, certain measures may help manage symptoms and reduce the frequency and severity of mast cell activation. These may include:

    • Identifying and avoiding triggers that activate mast cells.

    • Working closely with healthcare professionals to develop an individualized management plan.

    • Maintaining a healthy lifestyle, including stress reduction techniques and a balanced diet

  • While MCAS involves abnormal mast cell activation and shares some symptoms with allergies, it is a distinct condition. MCAS can cause symptoms beyond typical allergic reactions and is characterized by a chronic and systemic pattern of mast cell activation.

  • At present, there is no known cure for MCAS. However, with proper management and treatment, symptoms can often be controlled, allowing individuals with MCAS to lead functional and improved quality of life.

  • Yes, there are support groups and organizations dedicated to providing information, resources, and support for individuals with MCAS and their families. Examples include The Mastocytosis Society, Mast Cell Action, and various online communities and forums where individuals can connect with others facing similar challenges.

    If you suspect you have Mast Cell Activation Syndrome or have questions about the condition, it is important to consult with a healthcare professional who is knowledgeable about mast cell disorders for accurate diagnosis, guidance, and treatment options tailored to your specific needs.