This post explores the connection between EBV and MCAS. (Epstein-Barr Virus – EBV, and Mast Cell Activation Syndrome – MCAS).
Table of Contents
The bucket theory
The bucket theory simplifies understanding symptom reactions with MCAS. Imagine your body as an empty bucket you don’t want to overflow. Reactions to various stimuli fill the histamine bucket at different rates, forming the total histamine level (how full your bucket is). More histamine means more symptoms. By managing triggers, reducing exposures, and taking medications and supplements, you can control your bucket’s level.
Know your typical symptom progression
Understanding your symptom progression during a flare is key to developing your rescue plan. This post discusses how to recognize symptom progression so you can be prepared to address them.
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My story
I likely got Epstein-Barr Virus as a child, but I don’t remember it. When I was around age ten, I developed vitiligo on my back, which is an autoimmune disorder that causes patches of skin to lose pigment or color. EBV commonly triggers vitiligo.
Most initial EBV infections occur during childhood and are asymptomatic (in immunocompetent children), so that may explain why some people with chronic EBV or medical conditions caused by it do not even remember having Mono. – source
Decades later, when I started treating Lyme Disease, my holistic provider identified that I was dealing with Epstein-Barr virus, as well as several other co-infections.
Since then, I’ve treated EBV with herbs, homeopathy, and Cranio-Biotic Treatment dozens of times, but I continue to test positive for EBV. It turns out that chronic EBV is something you can’t really get rid of. Like chronic Lyme Disease, it hides in the body and resurfaces when it is triggered. For me, the triggers have been stress, a weakened immune system (from Lyme Disease, infections, SIBO, toxic exposures including mold and EMFs, parasites), MCAS, trauma, including a series of repeated concussions, and hormonal changes brought on by menopause.
From my research, I’ve learned that it doesn’t take much to reactivate chronic EBV. It can be triggered by the same things that trigger a mast cell flare, from triggering foods to environmental stimuli. So, in my case, I’ve likely been continually retriggering my EBV each time my MCAS flares.
Who is Betsy Leighton?
I’m a writer, blogger, and healer dedicated to helping individuals reconnect with their innate peace and wholeness by healing nervous system dysregulation. My personal experience with chronic illness called Mast Cell Activation Syndrome (MCAS) shapes my work, and my content offers tools to empower those with chronic illness to improve their well-being and take charge of their health.
I created the Sacred Self-Healing Method and am a trained and certified Safe and Sound Protocol provider, an author, blogger, and A Course in Miracles Teacher. I hold a Master of Divinity in Spiritual Counseling and am a trained spiritual mentor, with certificates in sound healing, aromatherapy, nutrition, and Sacred Deathcare. I offer a self-study certificate program in the Sacred Self-Healing Method, provide spiritual counseling and coaching, courses, and supported subscriptions for the Safe and Sound Protocol.
What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. It can cause severe, disabling symptoms every day, including potentially fatal anaphylaxis.
The common triggers for MCAS are infections, toxic exposures including mold exposure and EMFs, trauma, concussions, and stress.
MCAS often occurs with other chronic conditions like Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Managing MCAS is challenging because many healthcare providers are unaware of it, and diagnostic tests can be unreliable. Treatments include antihistamines and mast cell stabilizers in the form of medications and supplements, along with avoiding triggers. Check out this post on managing MCAS.
What causes MCAS?
Common triggers for MCAS are infections, SIBO, toxic exposures including mold and EMFs, parasites), trauma, and concussions. In my case, the infections were EBV, Lyme Disease, and other co-infections.
Triggers often layer on top of one another, and the more triggers present, the more likely MCAS is to flare up.
What is EBV
Epstein-Barr virus (EBV), also known as human herpesvirus 4, is a member of the herpes virus family. It is one of the most common human viruses. EBV is found worldwide. Most people get infected with EBV at some point in their lives. EBV spreads most commonly through bodily fluids, primarily saliva. EBV can cause infectious mononucleosis, also called mono, and other illnesses. – source
Mono is common among teenagers and young adults, especially college students.
When you first get EBV, you will likely experience the common symptoms of EBV listed below, like chills, fever, throat pain, fatigue, body aches, and rashes.
Chronic EBV
After you get an EBV infection, the virus becomes latent (inactive) in your body. People who get symptoms from the initial EBV infection, usually teenagers or adults, typically get better in two to four weeks. However, some people may feel fatigued for several weeks or even months afterward.
Then the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. This does not always cause symptoms, but people with weakened immune systems are more likely to develop symptoms if EBV reactivates.
For some people, the virus becomes chronically active in the body, meaning it can reactivate in response to various stressors. Some triggers include stress, a weakened immune system, the use of immunosuppressants, or hormonal changes. – source
EBV causes many diseases and conditions
EBV can also be a cause of other viral-driven conditions such as warts, vitiligo, different types of neuropathies, Oral hairy leukoplakia, multiple chronic diseases, including autoimmune disorders, as well as many types of cancer. In college, I experienced oral hairy leukoplakia. And as an adult, I have had gout several times, which is another byproduct of EBV.
Chronic EBV is associated with prolonged multisystemic symptoms that follow the acute infection. – source
In addition to MCAS causing worsened EBV, SIBO has been found to exacerbate EBV and MCAS. The interaction between these conditions is not well studied, but it makes sense to me that the three conditions are constantly vying for immune system resources in my body.
I find that I experience cycles when one or more of these three conditions are dominant, and my best course of action is to rotate treating SIBO, parasites, and EBV, with focused liver cleansing and detoxification each month. The protocol I have developed is this:
| Areas treated | Week of the month |
| SIBO | week 1 |
| Parasites | week 2 |
| Mycotoxins (mold) | week 3 |
| EBV | week 4 |
I’ll likely never be free of any one of these chronic issues, and so I find the most peace of mind in seeing them all as part of the puzzle that I address on a rotating basis. That way, I circle back to each one regularly, and no one infection gets the chance to gain the upper hand.
The link between EBV and MCAS
Studies on MCAS have found correlations with many other medical conditions. In many cases, it is unclear whether the MCAS predates the other conditions or if the other conditions triggered the MCAS. Some common comorbidities seen with MCAS include:
- Postural orthostatic tachycardia syndrome (POTS)
- Myalgic encephalomyelitis/chronic fatigue syndrome
- Ehlers-Danlos syndrome (EDS)
- Irritable bowel syndrome (IBS)
- Fibromyalgia
- Cancer
- Complex regional pain syndrome (CRPS)
- Neuropsychological conditions (autism, anxiety, and depression)
- Epstein-Barr virus (EBV)
- Thyroid disease
- Celiac disease
- Sickle cell disease
- Long Covid
Furthermore, specific virus products have been found to activate MCAS:
| Orf virus-encoded IL-10 | IL-10 receptor | Epstein Barr virus |
Other than the sources cited in this section, it’s hard to find research directly correlating EBV with MCAS. But when I talked with Dr. Kasia Kines of EBV Global Institute, it made sense. Dr. Kines says, “EBV is an opportunist. It will turn on when other things are falling apart. Mold is one of the biggest triggers. With that, there is a much longer laundry list of conditions associated with EBV… If you understand that EBV is an opportunist waiting to reactivate and 90%+ of us carry it then you will,” understand how easily EBV can be one of the triggers of MCAS for those patients who already have it.
Symptoms of EBV
The following list of symptoms of EBV comes from EBV Global Institute:
- Sore throat
- Pharyngitis
- Headaches
- Cervical lymph node enlargement
- Lymphadenopathy
- Ear pain or buzzing in the ear
- Loss of balance
- Fever
- Chills
- Significant fatigue (feeling like a truck ran you over)
- Enlarged liver
- Depression
- Elevated alanine aminotransferase
- Increased white blood cells
- Enlarged spleen
- Rashes
- Body aches, malaise, myalgia (muscle pain)
- Decreased appetite
- Low platelets, causing easy bruising
- Anemia
- Hypersensitivity to mosquito bites
- Abdominal Discomfort
- Vomiting
- May become temporarily bedridden
- Eyelid edema
- Inability to exercise or recover from exercise
- Feeling much worse on immunosuppressive medications
What can you do if you suspect EBV is causing your MCAS?
As I’ve discussed in previous posts, infections, such as viruses, are well-known triggers for MCAS, along with chemical, food, and environmental exposures, emotional stress, hormone fluctuations, mold and EMF exposures, and many other factors.
Knowing that I can’t control all of my exposures helps me to take a realistic approach to managing my EBV. So, as I detailed above, I treat EBV for a week out of every month. In any given month, chances are I will experience a trigger for MCAS, EBV, or both. So I try to minimize the damage by proactively treating it with homeopathics. My go-to homeopathic treatments for EBV are Energetix Viru-Chord and Energetix Flu-Tone, both available on my Shop page.
Testing for EBV
This is a complicated topic that I can’t adequately cover here. If you suspect you have EBV, please check out the resources at EBV Global Institute for more information on testing, which tests to run, false positives, and the efficacy of testing.
Exercise and EBV
One of the many ways that chronic EBV shows up is with post-exercise intolerance. I’ve struggled with exercise intolerance, and part of that picture is post-exercise intolerance.
Chronic EBV can cause post-exercise intolerance because exercise causes oxidative stress, which causes toxins to be stored in the lymph nodes. Dr. Kines recommends gentle exercises that do not reactivate EBV by dumping toxins into your lymph. Cardio exercise, such as running, is technically bad for EBV because it can reactivate it. Instead, Dr. Kines recommends deep breathing combined with shaking exercises to move the lymph (like using a chi machine or rebounder for 1 minute), and gentle walking.
I discuss using a Chi Machine in this post.
With that said, I have been able to gradually work up to running 5 miles by carefully monitoring my triggers, using my rescue plan, and always taking 1-2 days off between runs. Every person is unique, and your symptom progression will vary from the next person’s, so you will be the authority on how exercise makes you feel.
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Sign up for the SSP!
I’ve found the Safe and Sound Protocol (SSP) to be the most helpful bottom-up healing strategy if your nervous system has been overloaded with toxic exposures, including mold or non-native EMFs, chronic infections, concussions, stress, or trauma. The SSP is a passive listening therapy that helps heal nervous system dysregulation. Many people with MCAS and other chronic conditions have nervous system dysregulation stemming from infections, toxic exposures, concussions, and trauma. The SSP is an easy-to-use app that lets you listen to specially filtered music for 30 minutes each day as part of a 5-hour cycle. Studies show the SSP has a profound effect on mental health and chronic conditions. Here’s a short podcast describing the Safe and Sound Protocol.
You can sign up for the SSP here!
Heal your mind!
While the SSP is a bottom-up, somatic therapy for healing the nervous system, the Sacred Self-Healing Method I offer is a top-down nervous system-healing modality that focuses on cognition, attention, perception, and emotion, using the mind’s higher functions. The SSP and the Sacred Self-Healing Method complement each other and together produce lasting results. Here’s a short podcast on my self-healing practice.
I provide one-on-one in-person and remote chronic illness and caregiver coaching, as well as Sacred Self-Healing Sessions based on the Sacred Self-Healing Method, a proven, novel co-creative healing modality detailed in my Books.
Order my books!
Here’s a short podcast highlighting my five books.
My latest book, Living In The Light: Healing with Forgiveness, Sound, and Light, is all about the tools that have been most helpful for me to heal: forgiveness, sound, through nervous system retraining using the Safe and Sound Protocol, and light, through entraining my circadian rhythm with the energy of the sun. Living In The Light is available here!
Rocks and Roots chronicles my solo backpacking journey on the Superior Hiking Trail and my efforts to overcome nervous system dysregulation, gut dysbiosis, and Mast Cell Activation Syndrome symptoms to complete the 328-mile hike successfully.
The Sacred Self-Healing Method ebook is available here and in most ebook retailers!
The Sacred Self-Healing Workbook is available for purchase here!
Betsy’s first book, Sacred Self-Healing: Finding Peace Through Forgiveness, is available here
Companion Recordings
The companion audio recordings of chants, guided meditations, and sound healing demonstrations that accompany the Sacred Self-Healing Method are available for free on my YouTube channel here
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Disclaimer
The preceding material does not constitute medical advice. This information is for information purposes only and is not intended to be a substitute for professional medical advice, diagnosis, cure, or treatment.
