Mast Cell Activation Syndrome, DNRS, and Lyme disease
Tools for MCAS - teach your mast cells to chill
I feel like I am late in the Lyme game to learn about mast cells. Which is odd, because before I was diagnosed with Lyme disease, I was Skyping with an expert allergy doctor all the way in England, trying to eat food without my body losing it. That doctor never mentioned Mast Cell Activation Syndrome, or MCAS. But in retrospect, it’s obvious that MCAS has been a big part of my Lyme struggle.
What are mast cells?
Your mast cells are allergy cells. They are the first line of defense against invaders such as allergens, pathogens or poisons. A normal, healthy mast cell is responsible for the release of histamines, cytokines and other inflammatory compounds upon interaction with an invading substance. Think swelling after a bee sting. When mast cells release these compounds, they alert the rest of the immune system to danger, and we experience an allergic reaction.
This is all normal. We are supposed to swell up when bitten by a venomous viper. Inflammation from normal mast cell activation speeds immune response and healing. But in MCAS, something goes awry.
What is MCAS?
MCAS involves proliferation and/or excess sensitivity of the mast cells. Basically, it means having intense allergic reactions to non threatening substances.
Everyone’s MCAS is going to look a bit different, because there are so many possible allergic reactions to so many possible triggers. When I was really sick, MCAS meant that when I ate something as innocuous as a grapefruit, I risked a sky high heart rate, swelling in my sinuses, and staying up all night on the toilet. Other typical symptoms of MCAS include pain, fatigue, headaches, abnormal blood pressure, vertigo, tinnitus, brain fog, problems with memory, anxiety, depression and skin rashes. MCAS can even spiral into auto immune disorders, where the immune cells attack the body itself. Substances that can trigger someone with MCAS are foods (especially allergens), chemicals, medicines, infections, emotional stress and even exercise.
Medical websites tell you that treatment with antihistamines is useful for MCAS, though they soothe symptoms without treating the root cause. Some herbs lessen symptoms and also help balance the immune system, such as rhodiola (love it), bacopa, and CBD .
Lyme disease can cause MCAS
It’s hard to separate Lyme disease from MCAS! Where does one end and the other begin? If you look at the symptom list for both, they are just about identical.
In a 1999 study, Lyme disease spirochetes (Borrelia Burgdorferi), were proven to cause mast cells to release cytokines - inflammatory chemicals. Dr. Bill Rawls writes that in Lyme, the “stew of microbes and other stress factors…push certain aspects of the immune system, such as mast cells, into overdrive”.
We Lyme Warriors are faced with a long haul of killing, binding and detoxing our bad bugs. What can we do meanwhile, to encourage our mast cells to settle down? We need rest to heal, and MCAS can make resting tough. Luckily, there are things you can do in the moment to help settle a flare, and to teach your mast cells to calm over time.
DNRS and the mind of a mast cell
Annie Hopper, creator of Dynamic Neural Retraining System, or DNRS, suffered severe reactions to chemical exposure. A whiff of perfume, or the steam from a dryer vent could trigger an elevated heart rate, headaches and even seizures. Though she doesn’t discuss MCAS, I have to assume her symptoms were in part mast cell related.
What Hopper does talk about is her amazing recovery through brain retraining. By using her special form of DNRS practice, she was able to retrain her brain and body to completely stop reacting to chemical exposure. Today she is in full health, and teaches her method in the US and Canada. I took her DVD course in 2018.
Mast cells are quite active in the brain, and in the enteric nervous system in the gut (our second largest brain). In fact, mast cells are in constant communication with the nervous system as a whole. They even produce the feel good neurotransmitter serotonin.
Mast cells are woven densely throughout all our nerve tissue - sending and receiving messages that influence our psychoneuroimmunology. (Great word, encapsulating how interwoven our minds are with our immune systems.) This messaging goes back and forth, with the nervous system influencing mast cell behavior, and vice versa. In other words, mast cells adapt the level of inflammation in our bodies not just in response to invading substances, but also as a response to messages received from the brain and nervous system.
This makes it clear, as Annie Hopper proved with DNRS, that we can influence our immune systems and our mast cell activity with neurotransmitters - our thoughts and feelings. Perhaps this explains why some people with Lyme, including myself, benefit from DNRS and other forms of meditation, and why learning to handle stress is a critical part of Lyme and MCAS treatment.
Meditation and DNRS
Whether or not you’re practicing DNRS, you can practice meditation to lower stress and calm your mast cells. I use both. DNRS practice takes a fair amount of mental effort. Sometimes I am up for it, and sometimes I’m not. This is where meditation comes in.
DNRS is about consciously flooding your body with positive feeling, through memory and imagination. My experience is that I can cultivate bliss and soothe my MCAS symptoms alternatively, by using deep breathing and a simple mantra, image, or guided meditation. My goal is the same as with DNRS, but adjusted to my energy level.
If you are new to meditation, try it first when your symptoms are pretty mild. When you feel symptoms of an allergy or flare, try 15 minutes of this simple practice. If it works for you, you can lengthen your practice slowly. Annie Hopper requires an hour of daily DNRS practice (along with other awareness practices throughout the day).
Mast cell meditation
Lie down and take your time to relax. Go through your body mentally, letting each part soften and release into gravity. Choose either an image or a mantra to work with, whichever strikes your fancy in the moment. Choose a dynamic image - perhaps visualizing an environment that makes you feel deeply peaceful. If you choose a mantra, create one that resonates with you in the moment - it can be one word, such as bliss, or a phrase that opens your heart and calms you.
When you’ve found your image or mantra, just play with it for 15 minutes or so, feeling your breath and your body respond. Your mind will get distracted, that’s normal, it doesn’t make you bad at meditation. Just rein it in when you can, and come back to your image or phrase. Find ways to play that hold your attention - let the words and imagery change if need be. Feel your body as you practice, feel your breathing. If you are feeling pleasure, follow those feelings and let them build. If gentle yoga helps you focus, add it to the mix.
Every meditation practice feels different. Some are powerful and some are just relaxing. Some are annoying. You’re never doing it wrong. Just experiment and be gentle with yourself. Trust that you are making changes deep in your body, and that you are on the right path. Trust that you will learn a lot about yourself over time, and that it’s worth it.
If you need help, use guided meditations. Guided meditations give your brain something blissful to follow that requires no personal energy output. For me they work amazingly. Try my Anxiety Relief meditation for support with soothing MCAS symptoms. It speaks to the limbic system, the vagus nerve, and the enteric nervous system in the gut - in other words, the tissue where mast cells directly communicate with the brain.
Meditation is a skill like any other - it just takes practice. Your practice will evolve to suit you personally, it doesn’t need to look like anyone else’s. If you are feeling bliss, peace and deep rest, you are changing your neurochemistry and your immune system for the better. You may find that when you finish, your symptoms have lessened or even disappeared.
Thank you so much for reading! Please share this post with anyone you know struggling with MCAS. As a Lyme Warrior friend said recently, the cure will be multidimensional. We have to come at chronic illness from all sides, and support each other along the way.
Wishing you peaceful mast cells,