This post explores the connection between EBV and MCAS. (Epstein Barr Virus – EBV, and Mast Cell Activation Syndrome – MCAS).
Table of Contents
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. Vitiligo is commonly triggered by EBV.
Most initial EBV infections occur during childhood and are asymptomatic (in immuno-competent 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 starting treating Lyme Disease my holistic provider identified that I was dealing with Epstein-Barr virus, as well as a number of other co-infections.
Since then, I’ve treated EBV with herbs, homeopathy, and Cranio-Biotic Treatment dozens of times, but I continue to test postive 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 stiumuli. So, in my case, I’ve likely been continually retriggering my EBV each time my MCAS flared.
What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be challenging to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.
Check out this post on how to manage MCAS.
What causes MCAS?
Common triggers for MCAS are infections, toxic exposures including mold and EMFs, parasites, and trauma, including repeated 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 likelihood of MCAS flaring 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 all over the world. 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 virst 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, usually 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 that it can reactivate due to various stressors. Some triggers include stress, a weakened immune system, taking 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 a 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 follows 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 imune system resources in my body.
I find that I experience cycles when one or more of the 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 get 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 | [96] |
Other than the sources sited in this section, t’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 a well-known triggers for MCAS, along with chemical, food, and environmental exposures, emotional stress, hormone fluctuations, mold and EMF exposures, and many other things.
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 simply 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 just 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 of which are available on my Shop page.
Testing for EBV
This is a complicated topic that I won’t be able to cover adequately 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 doing gentle exercises that will not reactive EBV by dumping all of the toxins into your lymph. Cardio excercise such as running is technically bad for EBV because it can reactivate it. Instead Dr. Kines recommends doing deep breathing combined with shaking exercising for moving 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 five miles by carefully monitoring my triggers, using my rescue plan, and always taking at least 1-2 days off of running between the days I do run. 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.
The bucket theory
The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.
Know your typical symptom progression
Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.
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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. Always seek advice from your medical doctor.
