Tag Archives: mcas

Eosinophils & Mast Cells

MCAS and the Cascade of more Diagnoses

Mast Cell Activation Syndrome (MCAS) is still in its infancy in the world of health care, but recognition of the condition has come a long way in the last 20 years . When I began having symptoms, no doctor had a name for what I was experiencing. One GI doctor called my diagnosis an “Unnamed Cellular Disorder”. Different sources state the name Mast Cell Activation Syndrome was created in 2007, while the diagnostic criteria wasn’t proposed until 2010. I began having symptoms, while unrecognized at the time, in the early 2000’s. And as the years went by, some of the symptoms I was experiencing weren’t just from the MCAS, but from other issues that sourced from inflammation or cellular miscommunication.

Because of the length of time that I’ve had MCAS, I have also had the experience of new diagnoses being given to me. I believe all of these new diagnoses source from the inflammation that MCAS creates in my organs and my skin, along with a nervous system that views everything as a “tiger” instead of an innocuous item. These tigers can be food, scents, pollen, stress, and they can also be innocuous things, but my body has a difficult time differentiating the two. The result is that my body remains in a cycle of inflammation and other conditions end up being diagnosed.

The first additional diagnosis I received was for Eosinophilic Esophagitis (EoE). This one makes sense to me. All of the inflammation in my esophagus created the need for more powerful cells to show up and mitigate the issue. Sadly, eosinophils hung around for a long time in my esophagus doing more damage than good. I had one endoscopy in 2011 where I had 80-90 eosinophils per high powered field in my esophagus! No wonder I was so miserable! The good news is that since then, I have gotten much better at controlling the mast cells, through the correct antihistamines and mast cell stabilizers, and my last endoscopy in 2024 showed no signs of EoE! That is a big accomplishment!

Another diagnoses that I have received since the MCAS diagnosis is Blepharitis, which is an inflammation of the eyelids. It sounds fairly innocuous, however I can attest that it’s only a daily regimen that I have to keep this issue from affecting my ability to see. I do lid scrubs twice a day and hot compresses on my eyelids once a day to keep my eyes and eyelids in good shape. Summertime with pollen in the air makes this condition get worse, so I have to be careful being outside too much when pollen counts are especially high.

I had Rosacea diagnosed several years before I had MCAS diagnosed, and I’m convinced my facial skin was so red from all the heat in my stomach and intestines. This skin condition can be very painful, and it was for me until I began to research and find the right skin creams, moisturizers and soaps to use on my facial skin. Again, this takes a daily routine that isn’t varied, and a commitment to do it daily. I can say that almost every MCAS patient I have met has told me they have also been diagnosed with Rosacea.

As the years went by with MCAS, I got diagnosed with IgA Nephropathy, a kidney autoimmune condition where blood and protein is found in the urine. This can be a benign illness, or one that leads to kidney failure. I got this diagnosis about 6 years ago, and now have to see a Nephrologist every year to have blood and urine tests to see how my kidneys are functioning. Interestingly, for me, it’s not a trajectory downward, but rather a situation of one year it looks like I’m getting better and the next year it looks worse. My doctor is wonderful and is not a catastrophizer, which is very helpful to calm me down when the test results don’t look so good. Since I’m unable to take medications orally without impacting my sensitive stomach, and my diet is still very narrow and filled with too much chicken (too much protein in the diet can make test results worse), I’m really unable to do anything about this diagnosis. And that helpless feeling isn’t very comfortable for me. I do a daily Zhineng Qigong practice that has been shown in their research to assist the kidneys in healing, and other than that I continue to try to find a new food that I can tolerate so I can lower my animal protein intake.

A skin condition called DSAP (Disseminated Superficial Actinic Porokeratosis) is my latest diagnosis. This creates circles on the areas of my skin that have had too much sun exposure, which for me is my arms and legs. I’ve been given a prescription of Lovastatin Cream that is helpful, but does nothing for the lesions already on my skin. The cream is to prevent more lesions from appearing, but for me it probably prohibits about 50% and my skin still looks a little frightening. People with autoimmune issues are more likely to receive a diagnosis of DSAP. One diagnosis leads to another and to another.

All of these issues with my skin and my kidneys comes down to too much inflammation in my body. Mast cells are such a wonderful cell, but too much of a good thing isn’t good! I’ve found that worrying makes everything worse, so I continue to do my Zhineng Qigong practice daily, try to keep my life to a minimum of stress, and enjoy each day! I will continue to share what I’ve found that works for me to mitigate the symptoms of MCAS on this blog, and if YOU have found anything that works for you, please contact me at [email protected].

Coronavirus COVID-19, Eosinophils & Mast Cells

New book for “the Sensitive Patient”

The 2024 book, The Sensitive Patient’s Healing Guide by Neil Nathan MD, is a great resource to assist patients with multiple sensitivities understand what’s going on with their body in addition to finding a path to healing. While Dr. Nathan has focused much of his practice on patients with Lyme Disease and Environmental Toxins, I’ve found that his understanding of the manifestations of symptoms of extremely sensitive patients (such as myself) is very affirming. I’ve been told by well meaning doctors and nurses that there’s no way anyone could be as sensitive as I am. Not helpful!

His book, Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness, introduced me to the concept of Cell Danger Response, which I wrote about in a previous blog post.

Dr Nathan is on the forefront of understanding what no western medicine doctor that I’ve seen understands – that the symptoms I experience aren’t “all in my head” and that it is possible to be extremely sensitive to scents, chemicals, foods, pollens and more. For me, even the smallest amount of a new food can send my body into a mast cell reaction.

By reading this book, I’m getting more of a vision of what’s going on in my body with the various systems and cell reactions – the limbic system and the vagus nerve affect the messages that my brain and my gut are sending and receiving; the mast cells are releasing chemicals believing my body is under attack (even when it’s not) and needs to be defended. All of these mixed up communications create a firestorm inside my body that continues to create more and more sensitivity. No western doctor has ever offered me anything other than a medication. This book offers many more paths to try to get the communication corrected between systems and cells including frequency specific microcurrent (FSM) and other new devices to help appropriately stimulate the vagus nerve and quiet the autonomic nervous system.

This book is comprised of chapters written by experts on a particular topic. For example, Annie Hopper, the founder of DNRS (Dynamic Neural Retraining System) writes a chapter on the Limbic System and Stephen Porges, PhD writes a chapter on Polyvagal Theory. There is a great and VERY thorough chapter on Mast Cell Activation Syndrome written by Beth O’Hara who created Mastcell360.com. Getting detailed descriptions from these expert’s research and findings added to my understanding of these topics. Also, each expert gives a long list of potential modalities that they’ve found have helped their patients to heal. Also, Long COVID is mentioned frequently in the book, since it was just written last year. As I continue to pursue new modalities to try, it’s wonderful to get more options.

The book also goes into the various triggers that can create sensitivity such as emotions, genetics, viruses such as COVID, hormones and more. If you’ve been trying to get a diagnosis of what’s ailing you, I’d highly suggest reading this book. Many of the chapters also have a list of symptoms to assist you in discovering what could be at the source of your illness.

P.S. I did not receive any remuneration for suggesting this book. It is suggested based upon my experience of it being a valuable source of information.

Coronavirus COVID-19, Eosinophils & Mast Cells

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.