Tag Archives: mast cell activation syndrome

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.