Tag Archives: mast cell activation syndrome

Medical Procedures with MCAS

Facing life with Mast Cell Activation Syndrome (MCAS) is a daily challenge for most patients. Adding some type of medical procedure to that daily challenge can feel truly daunting. Yet sometimes we have to have a cavity filled, have a preventative colonoscopy or have surgery. At these times, good preparation will help the procedure go more smoothly.

I’ve had an MCAS diagnosis for almost 2 decades, and I’ve faced all kinds of medical procedures, and I’ve learned what has worked well for me; however, I want to caution that each of us individually needs to determine what works best for us in these situations.

In my doctor’s attempt to figure out what was wrong with me when I first started exhibiting symptoms of no longer being able to eat certain foods, having acid reflux and stomach aches, my GI doctor sent me to have a CT scan. At that time, I had no idea I had MCAS, and had the CT scan done with contrast, meaning I swallowed a liquid with dye (the dye can also be injected via IV). I began feeling hot and nauseous and chalked it up to the nasty tasting formula. For the next several days, I felt like I was sick. Only after being diagnosed with MCAS was I told to never again get any type of test with dye injected or swallowed as this was a major trigger for most patients with MCAS. I was having an allergic reaction to the dye, and didn’t realize this was making my MCAS symptoms worse and not helpful to me at all. And it turned out the CT scan was normal!

The Mast Cell Disease Society has a document called Emergency Room Response Plan that is not only fillable for your particular details and gives details of medication an ER staff should use for a reaction, but it also delineates what medications you should stay away from. They also have a list of triggers here. I have learned to NOT rely on medical personnel, even in the ER, to know what MCAS is or what can trigger activation. I have to know what my triggers are, and how best to educate others as to what I can and cannot be given medically. This includes foods, medical procedures, and medications.

I have had cavities filled without a problem, and lidocaine works well for me. However I know of people with MCAS who cannot stand the vibration and the noise caused from the drill. And for some people, anxiety around going to a dentist can create enough stress that mast cells begin to activate.

Stress around a potential medical procedure needs to be well managed. Many of us have years of seeing doctors who tell us our symptoms are all in our heads, or we’ve been given an array of tests that make us sicker and we trial medications that we react to. It’s easy to see why we become stressed out with a potential medical procedure. We’ve had so many negative experiences, and we don’t want another bad situation to occur. I’ve found that explaining to my doctor my past experiences of what has worked well to be helpful. And I make sure the doctor knows exactly what I’m allergic to, and what drugs to stay away from. Most of the time I have to explain what MCAS is, and I’ve had doctors tell me there is no such thing. If they say that, then I know to go shop for a new doctor!

In the early years of trying to get a diagnosis, I had multiple endoscopies and colonoscopies. My GI doctor felt it was important to keep my body calmed down during these procedures and he would give me IV Benadryl before the procedure started. I didn’t have any issues with the endoscopies and colonoscopies other than I felt very exhausted after the procedure.

When I had a hysterectomy, this same GI doctor had me do a short course of Prednisone to calm down my system prior to going through a major surgery such as this. Again, the idea was to give my body the best chance of recovery without a reaction. I was able to get through the hysterectomy surgery fine, and my husband brought safe food to hospital for the 3 days I was there. However, the only pain medication that I can tolerate is Fentanyl, which I had through IV in the hospital and then through a patch when I went home, since having any medication go through my gut causes severe stomach upset, and yet I was still nauseated. I was put on a Scopolamine patch for this and ended up having hallucinations! Come to find out, many MCAS patients have difficulties tolerating Scopolamine, but once again I didn’t know this at the time, and neither did my doctor. It was a bumpy recovery for the first week, when I landed back in the ER for the hallucinations, but I demanded to have no medication patches and that I would just tolerate the pain. This worked for me.

I understand that not everyone would want to choose this course of action, however I can’t even take Tylenol without stomach upset. And it just isn’t worth it to me in most instances to take pain medications. I’ve had 5 breast biopsies – some stereotactic and some full surgeries to remove larger volumes of tissue – and I had to use a small patch of Fentanyl only once. I’ve found that if I just rest and take it easy, my body heals better than trying to take medication so that I can get moving back into my life quicker. And with the breast biopsies, a cold pack mitigated most of the pain for the first few hours after the procedure.

I recently had a preventative colonoscopy, and I was surprised how much easier it was this time than 10 and 15 years ago when I had my last ones. The GI doctor used Propofol, which was a much kinder drug to my system, and I chose to not have IV Benadryl because my MCAS is not as flared as it was years ago when I was first diagnosed. Also, the prep part of the procedure can be nasty since I can’t do anything but water during the prep day. Jello, popsicles, etc. all have dye in them which doesn’t work for me.

I was able to tolerate the Golytely prep just fine and only had to do 50% of it to be fully prepared for the procedure. That’s another thing I’ve learned – do what’s best for my body for the result that the doctor wants. My intestines aren’t those of a “normal” person, and therefore I don’t need to overdo the prep. The other thing that I’ve discovered that’s changed with a colonoscopy is the use of carbon dioxide rather than air for the doctor to get a better view of the colon. This allowed my intestines to absorb the carbon dioxide rather than having to pass air after the procedure, which can be quite loud and painful!

Medical procedures with MCAS require that we become our own advocate. Make sure to educate all medical personnel about your history of reactions, what works well and what is likely to be a trigger. Keep your stress level as low as possible by having a good friend or family member with you for every procedure. You don’t have to do this solo! And make sure they have all your medical history too. Then you can relax, as much as possible, and sail through your procedure!

Neurofeedback, MCAS & Anxiety

I recently completed a series of Neurotherapy sessions at a local clinic called Neurotherapy of Colorado Springs. I was thrilled with the results that I experienced while still being in therapy, and I continue to see more positives now that I’m a graduate! I wanted to share with my readers how valuable Neurofeedback can be.

First, I’d like to share why I chose to pursue Neurotherapy. During my long progression of healing from Mast Cell Activation Syndrome (MCAS), I began to read about how our thoughts affect our body. I’ve written about New Thought elsewhere on my website here. I began reading books by Dr. Joe Dispenza and Ernest Holmes, and learned how powerful my mind really is, especially when it comes to illness. The education was very helpful, but reading about something and actually doing it to effect change are two different things.

I attended two of Dr. Joe Dispenza’s in person courses about 10 years ago along with participating in his monthly telephone presentations, which was a different progression of courses than what he currently has. Nevertheless, I was able to learn meditation techniques and was disciplined to meditate every day in addition to “blessing the energy centers” of my body for a couple of years. While I learned a lot of new lingo, for myself I never could see much progression in the healing of symptoms I was experiencing. I know some people really relate to Dr. Joe’s techniques, but for me I didn’t get results, and in fact some of the breathing techniques he suggested made my symptoms worse!

I looked into Dynamic Neural Retraining and the Gupta Program, both of which help to retrain the brain, and was concerned about my ability, once again, to get any results when I was basically left on my own to practice these programs. Some people are able to follow directions, and feel the energy, and make progress. For me, I’m not blessed with that. I need hand holding and someone to provide feedback to me to ensure I’m not off doing my own thing and wondering why I’m not getting any results.

I had begun to read about the relationship that mast cells have with the nervous system, and I knew from my experience with Rapid Resolution Therapy (RRT) that having my nervous system calm down around traumatic events was very helpful. However, my nervous system felt like it was at the level of fight or flight constantly, even when there wasn’t any trauma or upset occurring. That’s what landed me doing a Google search for Biofeedback and Neurofeedback.

I found that there are A LOT of practices that call what they are doing Neurofeedback. They wanted to rent me a machine to take home and plug myself in. Once again, I didn’t trust that I could do that correctly. And I really wanted to do Biofeedback AND Neurofeedback since I knew that I had a lot of body symptoms occurring from MCAS like itchy skin, stomach aches, occasional hives, general inflammation and hot flashes.

Other practices promised amazing results for anxiety in 6 sessions, yet performed the same services on every patient. This didn’t feel like the right route for me, especially knowing how sensitive my body is. I wanted something that was geared toward me, and I was willing to put in the time and effort to make it work.

It took a while of being on a wait list until I could get into Neurotherapy of Colorado Springs. My insurance didn’t cover the sessions, and I’m not sure if any does, but their practice is booming! They see people with brain injuries, children and adults with ADHD, older people with memory challenges, and many other brain related issues including anxiety. The best part was that when I mentioned that I wanted to calm down my mast cells and that I had a diagnosis of MCAS, the Director knew exactly what I was referencing. I can tell you that rarely occurs. Too many times, I’ve had to explain to doctors what MCAS is, and I was thrilled I didn’t have to do that this time.

I first completed a qEEG (Quantitative Electroencephalogram) which measures electrical activity in brain waves. I wouldn’t be able to read the results of this, but a Neurotherapist at the practice was able to look at my brain waves and tell me almost EXACTLY what my symptoms likely were (even emotional responses to stress and anxiety), where they sourced from, and what they would be able to do to create new neural pathways. I was quite impressed, especially since I hadn’t given any background information at that point. He was able to see all of this based upon my brain waves being too active or not active enough in certain areas of my brain.

The qEEG is such an important gathering of data, and many Neurofeedback practices that I had interviewed didn’t use this tool, mainly because it is an expensive test. I’ve had friends who have gone to those practices and ended up experiencing increased anxiety rather than diminishing anxiety with sessions of Neurofeedback. That’s the last thing I wanted to have occur.

I attended two one-hour sessions per week for a total of 50 sessions. Within the first two weeks, I was able to sleep more soundly. More than just the changes that I noticed, my husband noticed how much calmer I was. I was able to stick with difficult conversations without “freezing” or needing to take a break. In general, I was functioning much better with much less anxiety.

As I wrote in a previous blog post, I got COVID in the middle of Neurotherapy and was shocked at how much my brain turned to mush when I returned to continue with sessions. I was able to get brain function back quickly however, and graduated with what feels like a different brain!

Anxiety previously would awaken me in the middle of the night, and I’d have difficulty getting back to sleep. I now have a breathing practice which I can get centered into and fall back to sleep easily.

I’m able to continue to practice HeartMath which I wrote about previously here, which helps to keep my parasympathetic nervous system helping my body to rest and digest.

My skin is no longer a dot-to-dot rash of itchy bumps. And best of all, I no longer have symptoms of IBS (Irritable Bowel Syndrome)! I feel sure the IBS was related to all of the anxiety I was experiencing with MCAS.

I’ve tried adding new foods to my diet and no longer have the immediate MCAS response of flushing and anxiety. The interesting thing is that I do still have EoE (Eosinophilic Esophagitis) and that disease mechanism does not seem as responsive to the Neurotherapy. I’m in hot pursuit of a modality to cure it now.

In the meantime, I would encourage anyone wanting to retrain your brain to check out Neurotherapy!

Quick Help for MCAS

It took me about 5 years to get an official diagnosis of Mast Cell Activation Syndrome (MCAS) after getting stung by a wasp and having my body then experience allergic-like symptoms, an inability to eat many foods without a reaction, ongoing stomach aches, diarrhea and acid reflux. Sadly, many people today are still having difficulties getting an MCAS diagnosis. I know this because I hear from so many of them asking for assistance.

I’ve also had the question posed to me, “What helped you feel better quickly?” Depending upon how long you have been suffering with MCAS symptoms, your body may be able to tolerate different medications that can alleviate your symptoms. However, if you’re like me and have had a long list of issues for years, feeling better can be a slog that takes years to find the right combination of medications and other modalities to begin to help you heal.

I was prescribed Zyrtec and Zantac (it was still on the market in 2006 when I began to have symptoms) initially. For about 2 weeks, these medications were wonderful. Everything calmed down and I was able to eat any food I wanted, and I then went off both meds only to have my acid reflux and gut issues come roaring back. After that, I continued to feel worse and worse with each passing year. All of the gut issues I was having didn’t immediately respond to medications. And some of the prescription meds my doctor prescribed made me feel worse rather than better. Antacids like Zantac or Pepcid gave me more symptoms than what they were helping, which was very frustrating!

After 5 years, I was prescribed Ketotifen, a compounded prescription mast cell stabilizer and immediately felt better with the first pill. This was the first and only medication that provided relief to me without a horrible array of side effects. I eventually ended up taking the maximum dose of 4 mg per day, yet I was still having numerous other gut issues that weren’t helped by the medication.

That led me to a modality called Network Spinal Analysis, (which is now called Network Care), a type of chiropractic practice that focuses on energy in the body. I have written about this here. I was able to get my stomach churning and nausea to cease after each session, which was a wonderful relief! However, this calm body wouldn’t last but about 24 hours at first. I continue to see a practitioner twice a month to keep my body tuned up, and I’ve found other modalities to help the gut problems.

A real key for me was to switch to eating organic, and I ate food that had no spices or oils on them. I didn’t realize how important this was until I could feel the difference in the lessening of acid reflux that I had been experiencing daily.

I tried Traditional Chinese Medicine, which was helpful but VERY slow in progress. For someone looking for more information, you can read about that here. Some MCAS patients are able to tolerate ingested herbs and supplements easily. I was not. That is likely why it took years to build up any type of tolerance and get to a therapeutic dose. And Chinese herbs aren’t meant to be taken forever. I was certainly helped by them, but it wasn’t a quick, easy fix.

I was then introduced to Zhineng Qigong in my pursuit to heal my body. This type of Qigong was created by Dr. Pang Ming, a medical doctor, a Chinese Medicine Doctor and a Qigong Grandmaster. In 1979 he created Zhineng Qigong to help his patients heal at a medicine-less hospital in China, and the results were amazing. Patients were being healed of cancer and gastritis along with many other issues. I have been practicing Qigong daily for 3 years now and I continue to learn more of the nuances of the breath, posture, movement and energy. I could immediately feel a release of tension in my shoulders and hips, and my immune system got a boost during every practice where I would feel like I was catching a cold before practicing, and afterward I no longer had that feeling! It also put me much more in tune with my body which I needed to continue my healing journey. There are wonderful teachers of Zhineng Qigong which you can read about here and here.

Lastly, a modality that has calmed down my nervous system is Neurofeedback. I have found that my mast cells and nervous system have a communication going between them that has continued for years, and isn’t positive! If I get stressed, my nervous system calls in more mast cells. And if there’s pollens, my mast cells activate my nervous system and suddenly I feel anxious. And many times, I wasn’t able to stop this process, which meant the source was somewhere other than my body. In fact, I learned that my brain was creating a lot of the issues I was having. I began Neurofeedback in my city of Colorado Springs at this practice. I have been thrilled with the results. Within 2 weeks, I was sleeping again! I didn’t realize how much my sleep had been compromised with all the mast cell activation that was still occurring. If I had work stress during the day, my nervous system would be so activated that I would be itching through the night and unable to get a good night’s rest. Part of my Neurofeedback session is also HeartMath which I wrote about here. Now, I have a paced breathing practice that calms my nervous system down and I’m able to stop my mast cells from activating! I wish I would have discovered Neurofeedback years ago to help my brain not get into the patterns I’ve lived with where anxiety was so heightened. However, I’m very grateful to have found it now to be able to create new neuropathways in my brain which is calming down my body.

HeartMath, MCAS & Long COVID

There’s recently been recognition in the “forward thinking” Mast Cell Activation Syndrome (MCAS) doctors that mast cells have some type of communication with the nervous system. And this communication also seems to be occurring for long haul COVID patients. This communication appears to create the symptoms of anxiety, gastrointestinal issues and itchy skin, and may create other symptoms also.

As a patient with an MCAS diagnosis, and as a mother of a patient with a long haul COVID diagnosis, I can say that the nervous system is DEFINITELY affected by both of these conditions.

The autonomic nervous system is a complicated mechanism, and I’m certainly no expert. What I understand is that there is a sympathetic nervous system, which activates our bodies into fight or flight. This saved us from being eaten by a tiger many thousands of years ago, and is certainly necessary, but we don’t want it working all the time. Then there is the parasympathetic nervous system, which activates our bodies to rest and digest. We want a balance between these two systems.

My experience with MCAS is that the parasympathetic nervous system is no longer activated the way it should be, and my sympathetic nervous system is constantly overstimulated. Everything my nervous system comes in contact with is perceived to be a tiger – pollens, food, smells, etc. And my parasympathetic nervous system gets drowned out by all this overamping so that I have trouble digesting foods and getting a good night’s sleep.

In the short run, this isn’t a bad thing to have the sympathetic nervous system working hard. When we all lived with the danger of a tiger eating us, we wanted our nervous system to be highly responsive, to get us moving. Now, an argument with a family member shouldn’t stimulate the same response. Yet, when your nervous system can’t distinguish the immediate danger of a tiger from a kitten, the entire nervous system goes out of balance. And that is bad news for your body, especially when this imbalance lasts for days, months or years.

Mast cells are part of our body’s protection against viruses and bacteria, and are also stimulated during an allergic reaction to release many chemicals. From what I’ve been told, mast cells are in the layers of the gut and skin very close to the nerves, so it’s not surprising that there would be communication between mast cells and the nervous system. There’s been interesting research on the Significance of Conversation between Mast Cells and Nerves.

While there is very little research currently on long haul COVID, my daughter’s experience is that not only are her mast cells activating but she’s also having issues related to a dysregulated nervous system, such as dizziness upon standing, a fast heart rate and extreme anxiety.

So how does HeartMath figure into all of these nervous system issues? HeartMath is an app to allow you to view your inner emotional state based upon your heart rate and coherency. A Bluetooth device attaches to your earlobe to monitor your heart rate variability and guide you toward inner calm through real time feedback.

Heart rate as reflected on the HeartMath app. From the HeartMath Institute

If you are a follower of Dr. Joe Dispenza, he has been touting HeartMath for the better part of the last decade as a way to create the healthy vision you want in your life.

If you’d like to see a demonstration of HeartMath and the way to breathe to get the best results, watch this. (This video also includes information about how this type of breathing is helpful for treating long haul COVID).

I have found that there are times of the day when it’s really difficult for me to sit down and focus on my breathing. If I’d had a busy day at work, the transition into a calm breathing pattern is definitely needed, but sometimes quite difficult to maintain! However, I have been continuing to practice for 10 minutes a day, twice a day. I am certainly seeing results such as better sleep, more balance of my emotions and less anxiety overall. In other words, my parasympathetic nervous system is coming into balance!

For my daughter, she found that she has had to start small to not overwhelm her nervous system. Yes, even deep breathing can upset a very anxious body! If your nervous system is really overamped, you may need to start with just putting the Bluetooth device on your ear and breathing normally for several sessions before adding the deep abdominal breathing. The feedback from the app will communicate with you by sight with various colors and waves visible, but also by auditory dings. This helps your brain to know what it needs to do to “breathe better” and to create more calm.

I want to provide my body the best chance for healing, and if I can do so without medication and get good results, that’s amazing! There are HeartMath practitioners around the country that can assist you with getting all the information you need to get started on this. Or you can just purchase the Bluetooth device, load the app and proceed forth yourself. Either way, feeling calmer and less anxious will be your reward.

PS – I am not being compensated by HeartMath for this blog post. It is solely based upon my own and my daughter’s experience.

Slowly Healing from Mast Cell Activation Syndrome

I was diagnosed with MCAS (Mast Cell Activation Syndrome) almost 10 years ago. It took a few years of trying every prescription medication my GI doctor could find to begin to get my symptoms stabilized, and even then I still was suffering from weight loss, fatigue, stomach pain, insomnia and an inability to increase my diet.

I have written at length about how I got diagnosed in a series of posts here. I have continued to work toward healing, and the question that has come into my mind a lot recently is, “Why is it taking so long for me to heal?”

I know that I am SO much better than I was 6 years ago when I first started with Dr. Xiu-Min Li and Traditional Chinese Medicine. (If you want more detailed information about Dr. Li and her protocol, read this.)

I was hoping to get back to New York City to see Dr. Li in person last year and to discuss my slow progress of healing, but the pandemic altered those plans. Thankfully, our almost monthly Zoom calls have kept her up to date and have kept me receiving all my digestion teas, creams and herbal foot patches. However, unlike other MCAS patients of hers, I am still unable to tolerate almost anything that goes through my digestive system, and that severely limits my progress. I have been able to sloooowwwwly increase the herbs in my digestion tea in milligram quantities, and the same is true for the herbal foot patches. I would so love to just be able to take herbal pills and begin to eat a wide variety of foods and feel great! For some reason, that isn’t the path of healing that has been laid out in front of me. And the only way to tolerate more herbs in my digestive system is to heal my digestive tract. Dr. Li reminds me to practice patience and to be grateful for small amounts of progress.

Acupuncture is helping to heal my stomach and gut, but it too is a balancing act of my doctor using enough needles to create healing without stimulating my system too much with too many needles. Thankfully, I don’t have to worry about how she does that, but I can tell you that she has learned my internal system quite well over the last 6 months. I explained to her at my first visit that my nervous system gets amped up and goes into fight or flight mode if my body gets overstimulated, which defeats the entire purpose of acupuncture! Dr. Debbie thinks that my body needs to detox the toxin that she believes remains from when I reacted severely to a wasp sting almost 15 years ago. She has begun a detox regimen where every 2 months she pokes my ears and encourages them to bleed. It sounds barbaric, but I can attest that my body is feeling less toxic, and according to her my pulse and tongue appear to be showing signs of the detoxification which is very encouraging. This detoxification is currently showing up in my skin which has flared with eczema and other rashes that itch furiously. So again, we are working slowly and methodically toward healing.

Both of these Traditional Chinese Medicine modalities have allowed me to decrease my medications, which is a real gift. I no longer need the swallowed corticosteroid that I was using for EoE, because the combination of acupuncture and digestion tea has healed my esophagus. (To read more about acupuncture and EoE, read this.) And I’ve decreased my Zyrtec dose to 1/2 of a pill daily because I no longer suffer from extreme pollen allergies in the spring and summer. Additionally, I haven’t had to take any Rhinocort AQ nasal spray so far this year. That is amazing!

I continue to see my Network Spinal Analysis (NSA) chiropractor, Dr. Munn, weekly and have learned that my spine is unwinding. In the years that I was so sick and unable to sit or walk for long periods of time, my spine was apparently twisting. I just knew I hurt, and didn’t realize everything that was going on with my body. My body is now healing, and the unwinding of my spine has created a tingling feeling on the left side of my back where it feels like it’s been asleep – probably because it has! This unwinding has been alternating between pain and relief as years of energy are releasing. Once again, Dr. Munn tells me that we can’t force my body to unwind because we don’t want to overload the nervous system, and the body is going to take its time…patience, patience. Read more about my experience with NSA here.

Wisdom Healing Qigong is assisting my body with releasing all of that energy, and I practice it daily. I have found the meditative practice not only helps my body, but it also calms my mind. MCAS created a lot of anxiety inside my mind, and I used to get jumpy with every sound and was constantly worrying about every symptom I was experiencing. Meditation and Qigong have quieted my mind so that I can now distinguish when I am jumpy, and can use detective work to determine what is creating that anxiety.

The only way out is through. The unwinding of my body is also the unwinding of my mind, and I continue to learn more about myself through this journey. I now experience more connection between my mind and my body, and the herbs and other healing modalities create even more opportunities to be with any painful or challenging areas along with the ability to be with the good stuff. My body is no longer asleep, and I’ve learned how to breathe through pain and not need to take a medication immediately to numb it. I would certainly love to not itch, but this too will pass!

Mast Cell Activation Syndrome and Post COVID-19 Illness

A recently published article by Dr. Lawrence Afrin, the author of Never Bet Against Occum: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, and two other mast cell doctors, have found a consistency of symptoms of Mast Cell Activation Syndrome (MCAS) and those of “long-haul COVID-19”. They also postulate that those patients with severe COVID-19 symptoms of hyperinflammatory cytokine storms may in fact have undiagnosed MCAS, a chronic multisystem inflammatory disease.

If you are not familiar with the illness of Mast Cell Activation Syndrome, it is a beast of an illness to live with and to diagnose, mainly because the symptoms can look like so many other illnesses. (I have written a series of informational articles about MCAS here. )

For some people, the symptoms of MCAS aren’t enough to actually seek medical care. They may have an occasional stomach ache, or rash, and have never needed to become a detective to determine why they were able to eat blueberries, for example, last month and this month their stomach hurt horribly after eating them. Or the few hives that they get in the autumn season aren’t enough to bother them. Yet underlying these symptoms and others, the body’s mast cells are overreactive, while the person will declare themselves perfectly healthy. Then, when the body begins to fight off a virus such as COVID-19, the body overcompensates its response to the viral load and releases thousands of chemicals (cue the cytokine storm) that end up doing more damage to the body than the virus itself.

SARS-CoV-2-Reactive T Cells Found in Patients with Severe COVID-19

Recent statistics regarding COVID-19 suggest that only 15-20% of patients will experience a severe form of the illness. It is interesting to note that previous research on the prevalence of MCAS in the developed world is 17%, with the abundance of individuals unaware that the symptoms they are experiencing are in fact from mast cells acting abnormally.

Any virus would call forth a response by mast cells in order to heal the body. The problem with MCAS individuals who remain undiagnosed and therefore untreated, is that their mast cells are dysfunctional and react inappropriately to COVID-19 causing thousands of chemicals to be released into the body.

Fatal cases of COVID-19 are frequently caused by cardiovascular conditions, and heart damage has been one of the frequently cited long-term affects of the illness. Mast cells play a significant role in cardiovascular complications seen with COVID-19 such as pulmonary embolisms. Additionally, mast cells patients frequently cite “brain fog” as one of their symptoms, a common complaint of long-haulers with COVID-19.

Fatigue is a classic symptom of MCAS, frequently made worse by insomnia. Once again, these are common complaints of individuals who are still experiencing symptoms months after being diagnosed with COVID-19. In the research report, the doctors provide a table of symptoms by organ/system comparing MCAS with COVID-19 patients. The similarities are striking.

For individuals in the midst of the virus, doctors are finding that medications used to mitigate the symptoms of MCAS, inhibiting mast cell activation, are also helping COVID-19 patients: cromolyn; leukotriene inhibitors, dexamethasone, low-dose naltrexone, quercetin, and H1 and H2 blockers (antihistamines such as Zyrtec and Pepcid). These drugs might mitigate the severity of the illness, helping patients to not progress to the severest form of the disease.

An interesting note in the article concerned MCAS patients who had been previously diagnosed and were being treated for their mast cell activation. When these patients tested positive for a COVID-19 infection, all fared well enough that the doctors stated that “none have required mechanical ventilation, let alone died”. Their conclusion was that the patients had their mast cells at least partially controlled so that they did not suffer the most severe courses of the disease, but that they were still at increased risk for suffering from the post-COVID-19 illness.

For those of us with a diagnosis of MCAS, the volume of research that is currently occurring on COVID-19 will undoubtedly help us to have more understanding of our illness. And hopefully, a cure!

You can read the full article, Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome in the International Journal of Infectious Diseases.