Tag Archives: mast cell

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.

MCAS and post-COVID weirdness

My grown daughter, Michaela, was diagnosed with COVID in November 2021, which I wrote about here. COVID is a wily foe, and while we all hoped that she would recover as her brother, Morgan, did (which I wrote about here) – her path was much more harrowing.

After recovering from the acute stage of the illness, she returned to her remote work  – business and life coaching of several clients over Zoom – yet she noticed that her eyes had difficulty looking at a computer screen. She chalked it up to being tired, and moved forward.

She also got back to Salsa and Bachata dancing. However, a few hours of dancing wore her out for a week! This was not her usual level of fatigue. She was accustomed to dancing for hours several times a week, plus working, hiking, and numerous other activities without ever feeling tired.

Food was also still an issue. She kept noticing that her stomach was still not tolerating foods very well, and everything still had to be cooked. She limited her variety of foods, no longer ate any fruit or vegetable raw, but still had acid reflux frequently.  

After one family gathering for Morgan’s birthday, she got what she thought was food poisoning. Yet, no one else at the party got sick, and she realized that her stomach was worse off than she thought. She wondered if cooking a spaghetti squash in her brother’s oven ended up exposing her to juices of other foods. That small amount of cross-contact caused a firestorm in her gut, which meant that her stomach really hadn’t improved after the COVID virus.

Getting together with friends, she would feel fine before she left her place only to arrive at a designated location feeling exhausted. Once there, she realized that she kept asking the same question again and again. What was wrong with her brain? Why couldn’t she track conversations like she previously could? She loved being with people, yet now the noise and the interaction felt overwhelming.

Then came the hot/cold temperatures of various body parts. Her feet would be cold, and her hands hot. She’d never experienced this before. She was using Chinese herbs on various acupressure points trying to calm down her entire system, and the results weren’t what she wanted. It seemed like each day she was battling with weird symptoms that she’d never experienced before with MCAS. The herbs and creams previously calmed down any mast cell degranulation, but they couldn’t touch the symptoms she was now experiencing.

In mid-February 2022, she went outside for a walk. It was a cold evening, but nothing that she hadn’t experienced before, hiking in Colorado. She went on a walk near her apartment, and suddenly realized that her body needed to get home right away. She felt panicked at the thought of being outside. After arriving at home, she was feeling really anxious and felt like it was extremely difficult to breathe. She called me almost unable to get the words out. She told me her heart was racing, and she didn’t know what she was feeling. The main thing she did say was, “Don’t take me to the ER.” With her last experience of having 2 grand mal seizures in the ER after an IV push of Benadryl that was too quick, she now has what we have learned to call Medical PTSD (post traumatic stress disorder).

I chalked up her current situation to another MCAS storm. I suggested she take 2 Benadryl, and I stayed on the phone with her until Morgan got to her apartment. He took one look at her and said, “She’s having a panic attack. I’ll stay with her overnight.” He ended up staying that night and through the next day, and she still wasn’t doing well emotionally by early evening. The strange physical symptoms came and went, but she was so disoriented with what I’ll call brain fog, it was difficult to have a conversation with her.

Looking back now, I wish we would have taken her to the ER. She was so adamant about not having an IV put into her, that I didn’t want to create any more stress on her body. We didn’t realize until a few weeks later that she wasn’t having just an MCAS storm. Hours of Google searching helped us determine she was also having post-COVID syndrome, or long-haul COVID, or whatever term you want to call the myriad of symptoms that people have after having COVID.

Her body seemed to have gone over a threshold with the panic attack. She began to experience numerous symptoms that came and went daily: heart palpitations occurring dozens of time an hour, and especially when eating; blood pooling in one limb or one side of the body but especially in her torso; an inability to lie down without feeling she couldn’t breathe making sleep difficult if not impossible; hot and cold extremities; a buzzing sensation throughout her body and in her organs; brain fog so severe that it was impacting her ability to communicate with friends or family; nausea especially when looking at any type of computer or phone screen; vestibular issues such as dizziness which made it impossible for her to drive a car; burning organs; burning skin; an inability to take any medications because of side effects like extreme anxiety; panic attacks that lasted hours; depression to the point of producing suicidal thoughts; gastrointestinal issues where she could tolerate eating very few foods; hot flashes and flushing; hives that appeared out of nowhere; and her menstrual cycle lasted the entire month. Basically, she couldn’t eat, couldn’t work at the computer, and couldn’t drive.

Some of the scarier symptoms like fainting and a paralysis feeling also occurred. The paralysis would occur frequently in the middle of the night where she felt like she couldn’t move a limb and had to pick it up. This morphed into neuropathy where she would feel lightning bolts/electricity run through various parts of her body, and numbness at night.

Working became much more difficult. She got helped from the Colorado Center for the Blind to have Siri programmed on her phone and computer to take directions from her so she wouldn’t have to look at the screen. She did her coaching through the phone instead of Zoom, but it was very difficult to keep notes and keep her brain functioning.

She tried to get in to see her Primary Care Physician (PCP) with her new insurance. Since she was a new patient, he was unable to set an appointment with her for 6 weeks! In the meantime, she got in to see a new allergist with her new insurance network. He listened to her and said that all of her symptoms were caused by anxiety, and if she got that handled, she’d be fine! You can imagine how awful that made her feel.

She saw an acupuncturist who overamped her system, and ended up creating more issues than she was helping. After just a few treatments, she could no longer tolerate the Chinese herbs and creams that she had been using, and she lost one of the 3 foods she was eating. The acupuncturist didn’t understand how to help Michaela in a gentle or any meaningful way. It was so frustrating trying to find someone to help her manage all of these symptoms she was experiencing!

I looked up post-COVID clinics located in Colorado at a website called Survivorcorps.com. This is a group of long-haulers providing resources and supporting research about post-COVID issues. I found that UC Health had a clinic, however when Michaela called them, they said they only took patients who had been in intensive care in the hospital. National Jewish Health also has a clinic; however, they wouldn’t take her insurance, and said that the initial appointment would be $650 and then blood tests and any other test ordered would be paid out of pocket. That wasn’t doable! The post-COVID clinic in Boulder that was listed didn’t take any insurance. Everything was private pay.

Michaela went to the last clinic listed in the Denver area in Westminster. It was a 45-minute Lyft ride from her apartment. She had a one-hour intake appointment with a physical therapist, who pronounced her 98% disabled because of her inability to eat, work or drive. Michaela said she wasn’t there to be declared disabled. She was there to get help and wanted some exercises or something to help all of her symptoms! The PT said Michaela would have to come back the next week since it was time for her lunch break. Frustration was mounting at this point. There were a lot of tears at this point, on my part and for Michaela. These so-called post-COVID clinics weren’t there to really help patients!

It was so difficult for Michaela to garner the energy to go see these doctors, then pay for the transportation or have a friend drive her, only to be dismissed without any real help. She lives alone, and her friends had trouble understanding that she wasn’t well, especially because she wasn’t able to adequately communicate with them what she was experiencing. People had their own lives, and weren’t always available to drive her places, help her do laundry or get food.

My husband and I live an hour south of Denver. We were talking with Michaela several times a day, and sometimes having a call with her in virtual silence to just be a voice at the end of the line when she was having panic attacks that literally lasted all day. We were helping her get food delivered (you have to look at a computer screen to order food!) or bringing food to her. Morgan was also helping with food deliveries and other emotional support.

These were harrowing days, filled with trying to find some medical professional to help her, while also trying to keep up with our own schedules. One Sunday when my husband got back home from visiting Michaela in Denver, he asked me to take him to the ER since he was experiencing chest pains. He ended up in surgery the next day for cardiac catheterization and received 2 heart stents. Thankfully, he recovered fully, but the stress was getting to all of us!

My husband, Robert, and Michaela, who smiles despite all of her challenges!

Michaela was seeing a Network Chiropractor who was helping with her symptoms and then he overamped her system and she experienced back pain and anxiety. She stopped for a few weeks before going back to see him and to ask for very gentle entrainments. I picked her up weekly for this doctor appointment since it became the only modality that was helping her to feel connected with her body. And he was the only provider who was listening to her, and honoring what she was experiencing. He was honest about what he could help with because he didn’t understand long-COVID, but he did understand integrating energy in the body and he would work with her on that.

There are a few concierge doctors taking on long-COVID patients that we found across the US; however, new patient appointments were months or even a year or more out into the future. And everything was private pay, starting with $3000 for an initial appointment. That wasn’t going to help Michaela navigate her symptoms and her life today.

This is now the beginning of April – about 6 weeks since February’s major panic attack. She finally got in to see her PCP who diagnosed her with long-haul COVID, and ordered up numerous blood tests which all came back normal. This was not a surprising development, as we had been researching online for weeks at that point, and heard that normal blood tests were common. What was surprising was that the PCP told Michaela that she wasn’t his “kind of patient” since he was a family practice. She had chosen him because he was near her apartment which made it easier to get to him since she wasn’t driving.

I have never been so disappointed in the American healthcare system than I was at this point. It is absolutely appalling and one can feel so powerless with the never-ending rules, personalities, and unmet expectations one has to navigate, only to be let down in the end. What is a patient supposed to do when every avenue within western medicine closes them off?

Sadly, we have come to learn that Michaela’s story is very common in the long-haul COVID world. Many of the blood tests that western medicine doctors order aren’t the tests that will show what COVID has done to the immune system, vascular system or brain. And for anyone who has a chronic illness, western medicine is sadly lacking in physician appointment time to truly delve into a patient’s experience and history. Doctors are trained to look at the data from blood work or other tests and then prescribe a pill.

Long COVID doesn’t provide data in the western model, so doctors succumb to the easiest way to get the patient out of their office in the 15 minutes of allotted appointment time – tell them it’s all in their head: “Get your anxiety under control” or dismiss the patient outright: “You’re not my kind of patient.” In other words, the doctor is saying, “I don’t know what to do with you, so this must be your fault and not any lack of training or compassion on my part.”

This frustrating situation gets better because of Michaela’s tenacity and resolution to heal herself. Here is the next blog post about her extraordinary journey on the path to healing!

COVID Infection with Mast Cell Activation Syndrome (MCAS)

For those of you new to reading my blog, I wanted to provide a little history of MCAS in my grown daughter, Michaela, prior to getting to the topic of COVID.

Michaela got a diagnosis of MCAS shortly after I did about 10 years ago. We noticed how she was experiencing many of the same symptoms that I was with gastrointestinal issues, but she also had symptoms of interstitial cystitis, which her grandmother had been diagnosed with.

MCAS is a constant balancing act, and it can affect virtually any organ in the body. For Michaela, her thyroid, bladder, stomach and intestines are most frequently compromised when mast cells begin to degranulate.

She got placed on a variety of medications from a Gastrointestinal doctor including Zyrtec, Zantac (when it was still on the market), Ursodiol (alters bile for less histamine release), and Ketotifen. She never felt great on all of these medications, especially since her body continued to have ongoing inflammation evident in general swelling of her gut.

She took on her own healing, especially after a harrowing episode of two grand mal seizures in the ER, which occurred after getting dehydrated and having a mast cell flare. You can read about this scary episode here. After the seizures, and having aspiration pneumonia, she added lungs to her list of compromised organs. Her lungs would react to chemicals especially and she had to be very careful of what she was being exposed to.

Prior to COVID, Michaela had gotten her mast cells managed quite well through a completely organic diet of vegetables and fruits (cooked and raw), meditation, Network care (a type of Chiropractic practice), Traditional Chinese Medicine herbs, and plenty of Salsa and Bachata dancing! She no longer needed to take any “Western Medicine drugs”, and had been off of them for over a year when diagnosed with COVID.

She no longer had inflammation in her body, and had lost 30 pounds just through healthy eating, dancing and enjoying life with plenty of laughter and friendship. She is convinced that especially the Zyrtec and Ketotifen had created more inflammation in her body than it helped to decrease. She was feeling better than she had felt in years. And then came COVID.

It is important to state that Michaela decided to not get a COVID vaccination due to her extreme reactions to chemicals, and her sensitivity to anything being put into her body.

After 18 months of social distancing, mask wearing and very little dancing, she got to celebrate her 31st birthday in November 2021 with a test for COVID. The pre-birthdate party she celebrated with her friends became just one of the positives she experienced – the other being the results of the PCR test.

She awoke a few days after the party with a severe migraine, which is not a usual symptom of MCAS for her. Similar to the symptoms that she experiences with a MCAS flare, COVID began to create gastrointestinal issues. She was virtually unable to tolerate eating anything because of acid reflux and nausea for about 10 days. She kept hydrated with mineral water, and never had any lung involvement, which was a relief. She barely even had a cough for the entire illness, and the fever only lasted about 36 hours and wasn’t very high. She did have fatigue, but was prepared for that since we had heard that was a normal symptom of COVID.

She had some strange symptoms like very painful skin that almost felt like it was burning, and it was difficult to take a shower. Some of the TCM creams helped this. So the “usual” COVID symptoms weren’t at all what she was experiencing, but she definitely had COVID and her gut no longer would tolerate the variety of foods that she had previously been able to eat. She couldn’t eat raw foods, like apples, anymore. Everything had to be cooked, and food didn’t taste good once she lost her sense of taste and smell.

It was a rough illness but she didn’t require hospitalization, and didn’t even need to go to the doctor. She did reach out to Dr. Xiu-Min Li, our Traditional Chinese Medicine doctor, to inquire about what she could do for her immune system to help it fight the infection and get back to normal. Dr. Li suggested various herbs in patches placed on specific acupuncture points, and that helped a lot.

The acute infection lasted for 10 days, and yet she still had chronic acid reflux that wasn’t helped by Pepcid. A half dose of Pepcid created a mast cell storm that was very uncomfortable and included sweating, nausea, and a feeling of almost passing out. So, Pepcid was out of the question. Overall, though, she felt like the worst had passed and was ready to get back to her “normal” life.

Our family was able to celebrate Michaela’s birthday and Thanksgiving the first weekend in December. What we didn’t know then was that the end of the acute illness was the beginning of another path that became quite scary and weird, with new symptoms and ongoing fatigue, and a journey that Michaela continues to forge a path through. The continuation of her experience and her path back to health is shared in the next blog post here!

MCAS & EoE Coexistence

When I was first diagnosed with a Mast Cell Activation Syndrome (MCAS), my GI doctor told me that when he got my biopsy results back, he expected to see a high eosinophil count also. And he was correct! That was before research had been completed on these two cellular disorders, and today it’s more common to hear mast cell patients talk about also having high eosinophil counts.

I haven’t heard of a lot of EoE patients, however, talk about high mast cell counts. Yet from my anecdotal evidence, I have spoken with many adults and families managing EoE who tell me about symptoms of their EoE that sounds VERY familiar with mast cell patients.

I believe there is big opportunity for more research on how these two cells interact, and how a patient who receives a diagnosis for one of these illnesses needs to be monitored for the other.

Mast Cells

To my unscientific eye, these cells do look similar, however from the research we have now, we know that they don’t respond similarly to stimuli. In a 2014 research study, the authors found “Eosinophils were more viable when mast cells were present, dependent on soluble mediators and on physical cell contact…Mast cells were not as clearly affected or made more viable by eosinophil coculture.”

Further, the research found, “Both mast cells and eosinophils are present in biopsy specimens of patients with EoE. There is a great mast cell signature in EoE, and the presence of mast cells has been found to be useful in distinguishing between EoE and gastroesophageal reflux disease in biopsy specimens….IL-9 produced by mostly eosinophils served as a potent mast cell growth factor.”

Since I have a diagnosis of both MCAS and EoE, I can tell you that I have learned the difference of what the symptoms feel like for each of the illnesses. With EoE, I will experience the following symptoms in a flare (which is most likely to occur in the fall season): coughing, choking, gagging, acid reflux that I feel in my breast bone, and high stomach/lower esophagus pain, nausea and diarrhea. With MCAS, there isn’t as much of a season where I feel the symptoms. In general, I have some of these symptoms every day, to a greater or less degree: “hot flashes” with anxiety feelings after that, itchy skin and rashes, stomach pain, nausea and diarrhea. I have found that EoE affects the mucosal barrier of my gut much more than does MCAS. In other words, the eosinophil cells feel meaner and more destructive than the mast cells.

It’s difficult sometimes to know which illness is affecting me. I have found that for me certain medications work better to minimize the symptoms of one condition. Your own experience may be different! For me, Zyrtec helps MCAS but doesn’t do much at all for EoE. The mast cell stabilizer medication, Ketotifen, helps both MCAS and EoE, but is really effective for MCAS. The swallowed steroid, Asmanex, helps the EoE but doesn’t do much for the MCAS. Chinese herbs help both because the herbs aren’t geared toward one kind of cell, but instead work on inflammation in the body as a whole. That’s one of the reasons I like Traditional Chinese Medicine so much!

There are more drugs being researched that have been shown to decrease IL-5 (Interleukin 5) which is a cytokine involved in both MCAS and EoE. Mepolizumab, sold under the brand name Nucala, is one of these monoclonal antibody drugs, and has been studied for eosinophilic asthma and idiopathic mast cell activation and shows promise. We need more options to manage these two conditions, that although rare, can completely debilitate the patient and are becoming less and less rare.

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.

Stress and Mast Cell Activation

white blood cell. mast cell or a mastocyte, labrocyte. mast cells are the cells responsible for causing allergic reactions or anaphylaxis, also aide in the healing of wounds and defense against invading pathogens.

There are many stresses in our world that can cause a mast cell to degranulate: pollens, chemicals, foods, illness, injury and even good old emotional “stress.” If you have a mast cell activation syndrome (MCAS) diagnosis, being mindful of stress is key to keeping your condition from negatively affecting your life.

I have found that there are some stresses that are more easily managed, such as the foods that I eat or the chemicals that are in my home. I make sure that I never “cheat” with foods. I know which foods I can tolerate, and I always maintain my diet with only those organic foods. Is it hard to be that vigilant? Yes, it is! However, I know my body well enough now to understand that adding any extra stress doesn’t make me feel good, and certainly puts my physical and mental health at risk if a stressor comes along that I can’t foresee.

My husband and I have recently begun using only non-toxic products in our house for cleaning. We’ve found that the Better Life brand is great, and they have every kind of product you can think of for glass cleaning, dusting, dishwasher soap, etc. (By the way, I’m not receiving any funding for this endorsement. It’s based purely on my experience.)

Other stresses are more difficult to learn how to manage. I’ve gotten better through the years to be able to recognize when my work is creating too much of a burden on my time, thereby creating stress. I am blessed to be able to work out of my home, which assists not only with the environment in which I work, but also that I can make my own foods in my own kitchen, and I can take a 20 minute afternoon nap if I feel so inclined.

I can’t stop the spring or fall pollen flares, but I can be mindful of increasing my use of antihistamines, taking a shower before bed, and keeping the windows of my home closed and the air conditioning on. All of these actions help to lower the stress load of pollens on my body.

Having an allergic reaction to a bee sting last summer created a storm of mast cells that necessitated a round of Prednisone to calm down the reaction. Any type of allergic reaction creates tremendous stress on the body, and especially for those of us with MCAS. I am always aware of bees in my environment since I’ve had a bad reaction previous to this one, and I carry an Auvi-Q in case the reaction is severe. Sometimes, though, a bee comes out of nowhere which is what occurred with this sting.

Late last year, I got a case of bronchitis that lasted 6 weeks, and left only after taking an antibiotic, which I haven’t had to take in over 12 years. The stress of the illness plus the medication was difficult for my body to recover from, and my mast cells were trying to be helpful by degranulating. Instead, I felt sick to my stomach in addition to coughing! Bodies do heal, and slowly I got better.

Also, over this past year, I have twice had injuries. I fell on a gravel path last year, spraining my ankle. It took months to get back to “normal” of being able to walk. My mast cells reacted for about two weeks with a storm of activity while my nervous system responded to the bruising and swelling of my ankle. I increased my Ketotifen to calm down my system, and took care of myself. Because of my sensitive stomach, I’m unable to take any type of pain medications – even Tylenol or Advil – without having more mast cell degranulation. Therefore, I get the opportunity to rest, breathe into the pain and to heal instead of taking pain medication and moving back into life right away.

Last week, I was in a car accident when a 1/2 ton truck ran into my car going 40+ mph. I thankfully was able to walk/limp away from the accident, however my car was totaled. The impact on my muscles, and the bruises that continued to show up for days, showed me what a stress the accident had put on my body. Sometimes, there’s nothing we can do when a big stressor shows up. I’m very grateful that my body had been doing really well with no illnesses or issues for a good 5 months before the accident occurred. And it’s been a difficult recovery where once again I’m unable to take any pain medications.

My goal is balance – balancing the stress in my life which plays out on my mast cells. It requires for me to be constantly aware of my body and my environment. I have to be a good advocate for myself, especially if I’m in a location that is filled with perfumes or smoke, and get out immediately! I worry less and less about what others think about me, and whether they think I’m weird. I’m sensitive, and that’s a good thing!

How to Obtain a Mast Cell Activation Diagnosis

I have recently been hearing from numerous people asking me how to obtain a mast cell activation diagnosis. What kind of doctor should I see? What kind of tests should I have done? Is there a blood test for it?

I share what I had to go through for 5 years before getting a diagnosis. I saw numerous different doctors – a primary care medical doctor, a D.O. primary care doctor, a private practice allergist, a private practice gastrointestinal doctor, an allergist and a GI doctor in a medical research facility…the list goes on and on. While I had numerous blood, urine, skin prick and food allergy tests, endoscopy and colonoscopy tests, no one could figure out why my stomach hurt 24 hours a day and I was continually losing foods in my diet. Everything came out “normal” in these tests; however, no doctor was actually biopsy testing for mast cells.

The food allergy and skin prick tests showed that I had some food allergies, but I wasn’t able to eat the foods that I wasn’t allergic to without severe gut distress. In other words, I was still reacting to foods that I wasn’t allergic to, and this was baffling for my allergist. This is a common refrain of those with mast cell issues. When I read online about someone who says that they are down to only tolerating a few foods, I ask the question, “Has anyone mentioned a mast cell activation disorder to you?”

Sadly, at this point, there is no blood test to determine a mast cell activation disorder. I got a diagnosis of a mast cell activation disorder when I saw a GI doctor who sent out my endoscopy lab biopsies to be stained for mast cells and tryptase. He also stained for eosinophils, and there were plenty of those in my esophagus and intestines also. By the time I finally saw a doctor who knew what to look for and how to accurately test me, my mast cell count was 30-40 per high powered field, and my eosinophils were 80-90. Most doctors agree that you want these counts below 15 per high powered field. Finally, I knew why I was feeling so terribly!

Mast Cell granules which contain mediators

What I found is that medical doctors know a protocol to test for systemic mastocytosis, and they are more than willing to do that. I had one doctor who wanted to do a bone marrow biopsy on me. Thankfully I knew that I didn’t want that type of an invasive test. I had read enough about the systemic form to know that I didn’t have those symptoms.

There’s a great write up on diagnosing all types of mastocytosis and mast cell activation syndromes on The Mastocytosis Society website here. The interesting item to point out when it comes to mast cell activation disorders is that one of the criteria for diagnosing it is to put the patient on H1 and H2 inhibitor medications (generally Zyrtec and Zantac) to see if they feel better. If the patient feels better, then it must be a mast cell disorder! Backwards logic.

Most people seeking a diagnosis have been dealing with all kinds of odd manifestations of mast cells for years before they get to a breaking point and decide they need to get a diagnosis. Most mast cell activation issues manifest with gut involvement. A person’s bladder may be affected (a diagnosis of Interstitial Cystitis involves mast cells), but they also have gut issues. The good news about the gut involvement is that an endoscopy can be completed and biopsies can be stained to determine if mast cells are proliferating.

So, first thing I suggest to people is to have a food allergy testing to see if there are foods to which they have a true allergy. The second testing I suggest is to get an endoscopy and have the biopsies stained for mast cells.

If you do receive a mast cell activation diagnosis, you want to get on some type of antihistamine (and maybe even a mast cell stabilizing medication) as soon as possible. The longer that a person delays, the longer that mast cells will be activating, and the worse you will feel. This activation can create havoc on organs, and the cycle only gets worse. Soon it’s not only your gut that is affected, but the mast cells are proliferating at such a high rate that they can even move into your brain. You then begin to experience “brain fog.” This is a neurological issue where it’s difficult to concentrate, to remember things and to follow conversations. This cognitive dysfunction can affect people of all ages when there is mast cell involvement. I’ve experienced it myself when I was the sickest. Thankfully, by getting on a cocktail of antihistamines, a steroid, and a mast cell stabilizer for a few years, I was able to come back to my body. From there, I’ve done many other non-Western modalities to help my body heal.

I don’t know of one person who was suddenly able to get better without any type of medical intervention when it comes to a mast cell activation disorder. But you can get better! I am living proof of that.

Mast cell issues are increasing at a phenomenal rate currently. Ask any allergist if they have mast cell patients, and virtually every one will say yes. They will also probably say that they are some of the sickest patients they have, with so many symptoms it’s difficult to know where to begin to help them!

As a patient, we need to advocate for ourselves. Listen to your intuition. If a test doesn’t seem appropriate for you because of the cost or because it’s too invasive, speak up.

Read up on mast cell issues. The Mastocytosis Society website in the US and the Mastocytosis Society Canada have great resources to help patients get treatment.

I’m always willing to chat and to assist you by sharing my experience of what has worked for me! Feel free to contact me at [email protected]