Tag: Diane Kane

Adopting a Holistic Approach to MCAS and Histamine Intolerance

One of the many things that people with chronic illness have to deal with is frustration with medical practitioners.  This can involve misdiagnosis and/or inappropriate treatment that sometimes aggravates the symptoms of the chronic illness.   Recently I experienced a number of frustrating dealings with medical practitioners – my GP said that allergies and Mast Cell Activation Syndrome (MCAS) were outside his area of expertise, my gastroenterologist said that MCAS was a “controversial area” (and did not take it into account in a colonoscopy examination) and my Allergy specialist adopted a simplistic, medical model of MCAS and prescribed two very strong drugs with known damaging side effects (without any warnings about their potency or dangers).

Diane Kane describes her incredibly challenging journey to health and her totally frustrating experience with multiple medical practitioners globally who failed to accurately diagnose her chronic illness. Being a professional medical researcher herself, she is now writing a book and providing a library of resources to help other people who are seeking support in their battle with MCAS and/or histamine intolerance.

Jennifer Crystal explains in her book that it took 8 years for her debilitating Lyme Disease to be diagnosed accurately and treated appropriately.   Part of the issue blocking accurate diagnosis was the belief system held by Australian doctors concerning the impact of a tick bite that she received while visiting America (ticks in Australia have a significantly different health impact than those in America).

Annie Brewster MD, assistant professor at Havard Medical School,  describes her frustration with medical practitioners when she was diagnosed with multiple sclerosis and, in particular, their inability to listen to her story because of time pressures and debilitating medical workload.  She wrote her book, The Healing Power of Storytelling, to offer patients with chronic illness “a way through anxiety, confusion and trauma” – a way based on the research-based tenets of narrative therapy.

Annie has applied the principles of narrative therapy in the creation of her website, Health Story Collaborative, which provides a dedicated space for “storytelling for health”.  One of her programs is the monthly, online Creative Meetups, a facilitated group that enables participants “to reflect and connect with others in a supportive environment”.  Writing activities around stimulus material provide the mechanism for individual participants to identify and share their feelings and, in the process, “to reframe their story and reclaim their life”.

The increasing medical complexity of chronic illness

One of the factors working against the understanding and empathy of dedicated members of the medical profession is the increasing complexity of chronic illness.  Dr. Lawrence B. Afrin in his book, Never Bet Against Occam, writes about MCAS and the “modern epidemics of chronic illness and medical complexity”.   Lawrence was both a Research Fellow and a hematology/oncology specialist at the time.  He was acutely aware of the many people who suffered not only from chronic illness but also not being able to understand, or gain insight into, their complex medical problems.  Lawrence highlighted the fact that MCAS patients had a “large assortment” of symptoms and this symptom array varied “from one patient to the next”. 

Lawrence researched MCAS extensively to be able to treat his own patients and also to educate other medical professionals about the complexity of the condition.  He thought this increased understanding on the part of medical professionals would lead to “diagnosis and improvement sooner rather than later” for patients.  Lawrence was at pains to stress that MCAS was amongst the increasing number of medical conditions that involved “chronic multisystem inflammatory illnesses of unclear cause”.  

Beth O’Hara who specialised in emotional wellness, naturopathy and genetics explained in a video presentation that MCAS can result in systemic symptoms (such as sensitivity to foods, drugs, chemicals or the environment and related swelling and inflammation), musculoskeletal symptoms (such as degenerative disk issues or arthritis), skin symptoms (including itching, hives, easy bruising), cardiovascular symptoms (e.g. heart palpitations, dizziness  or low blood pressure), and/or digestive symptoms (such as cramping, diarrhea, reflux, IBS).

Beth’s lifetime research of MCAS and successful healing processes was driven not only by the complexity of patients’ symptoms in her medical practice but also by her own debilitating experience of MCAS from 7 years of age.  She was bedridden by the age of 20, suffered severe anxiety, joint pain and a hypersensitivity to smells and chemicals.  The medications she received from medical practitioners frequently made her symptoms worse.  She sought assistance from multiple health professionals but found none understood the complexity and multi-system nature of MCAS. 

A holistic approach to MCAS and histamine intolerance

Driven by her own health needs and those of her patients, Beth gradually developed a holistic approach to MCAS and incorporated the healing protocol in her medical practice and related website, Mast Cell 360.  Through this site, Beth offers a wide range of resources and access to practitioners especially trained in her MCAS healing protocol.  For example, she offers a verified list of low histamine foods and related recipes.  Her blog provides insights into the nature of MCAS, the Mast Cell 360 healing protocol, and a Mast Cell Activation Syndrome Symptoms Survey.

In her video presentation, Beth discussed her holistic approach to MCAS and identifies three core components: (1) addressing the root causes of your MCAS condition, (2) eating the right foods and taking the right supplements (her incorporated case studies illustrate that identifying the right supplements involves a trial and error approach, while identifying the right foods can involve an elimination diet and a desensitising process), and (3) “supporting the wiring of the body”).

Addressing Root Causes of MCAS

One of the things that are often overlooked by medical practitioners are the possible causes of MCAS for an individual.  Beth makes this consideration one of her three key aspects of healing.  She argues that you have to address the influence of these individual factors if you are to achieve  healing from MCAS.  Beth provides a Guide, 7 Common Root Causes  in Mass Cell Activation Syndrome, to help MCAS sufferers “discover their own unique triggers” so they can work with these.

Beth maintains that the majority of health care practitioners are “unaware of these underlying factors” differentially affecting individuals and, in consequence, they tend to resort to “one size fits all” solutions such as a low histamine diet and/or antihistamine medication.  Her Root Causes Guide offers insight into MCAS triggering factors and also ways to address them.  Beth maintains that “the majority of my clients with MCAS have at least 4 of these root causes”.

Consuming the Right Foods and Supplements

Eating the right foods is foundational to healing from MCAS.  In many cases, the initial action with MCAS is to avoid foods that result in a flare-up.  Specific food allergies can be determined via an elimination diet or, more objectively, by undertaking a “skin prick test” and/or blood tests. 

Beth strongly supports the use of supplements which form one of the cornerstones of her Mast Cell 360 healing protocol.  She provides examples of the trial and error use of supplements in the two case studies she discusses in her video presentation.   Beth urges patients to seek the guidance of a qualified health professional when considering supplements to address nutritional deficiencies because of the potential sensitivities that could be involved.

Beth provides additional online guidance in her Master Class, The Top 8 Mast Cell Supporting Supplements.  In this course she covers aspects such as:

  • the benefits of each supplement and how to determine what is right for you
  • how to correctly introduce supplements and how to troubleshoot sensitivity problems
  • what supplements to avoid.

Supporting the wiring of the body

The reference to supporting the body’s wiring relates to processes designed to activate the parasympathetic nervous system because of the negative impact of MCAS on the vagus nerves, reflected in the body’s over-active histamine release. With MCAS, the body will often treat healthy foods as invaders because of the hyper-activity of the immune system – an impact of damage to the vagus nerves.  The parasympathetic nervous system induces relaxation and improved digestion and is often described as the “rest and digest” system.

In her video presentation Beth was quite adamant that MCAS cannot be treated effectively without some work being done to activate the parasympathetic nervous system.  She stated that “discovering how the body is wired is 50% of the healing process”.   Beth provides an online Master Class to Reboot the Mast Cell Nervous System, incorporating parasympathetic re-balancing, vagal nerve signalling and re-regulation of the limbic system.  Tools offered as part of the package to achieve these goals include specialised yoga practices and breathing exercises.

Reflection

I have personally experienced the confusion and frustration that comes with chronic illness and interactions with medical practitioners.  According to the level1/level2 typology advocated by my Allergist, I do not have MCAS.  However, taking Beth’s holistic view of MCAS (and recognising that Mast Cells are everywhere in my body), I actually meet her criteria for MCAS.  I have “systemic symptoms” (environmental and food sensitivity, swelling and sweating), skin symptoms (rash, hives, itchiness and easy bruising) and musculoskeletal symptoms (multilevel disc degeneration and arthritis in my fingers).

The core issue with inadequate diagnosis of chronic illness is that proposed treatments will also be inadequate and potentially damaging.  With Beth’s holistic approach, I can identify a number of areas I need to work on that are not confined to medication

I have recognised, for example,  that I need to work with the  following root causes of MCAS which are relevant to my condition:

  • food triggers (beyond histamine)
  • infections and toxicity
  • nutritional deficiencies
  • early childhood trauma (adverse childhood experiences)

I have purchased Beth’s Master Class to Reboot the Mast Cell Nervous System to help me achieve a quietening of my nervous system and reduce my level of immune reactivity.   As I grow in mindfulness through breathing exercises, Tai Chi and meditation, I can activate my parasympathetic nervous system, stay focused on the present moment (not triggered by depression about the past or anxiety about the future), be more creative and proactive in exploring my healing options, and develop increased resilience in the face of constant setbacks.

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This post is provided for information purposes only and is not intended to replace personal medical advice provided by a trained medical practitioner.  Please seek advice from a qualified professional before deciding on treatments for yourself or other members of your family.

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Image by Gerd Altmann from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Mast Cell Activation Syndrome and Covid-19: The Invisible Link

There has been a lot written lately about Long Covid and its differential impacts on individual’s health.  More recently research has highlighted a connection between Covid-19 and Mast Cell Activation Syndrome.  It is important at the outset to reinforce the need to consult a medical practitioner for treatment of individual health symptoms.  We can too easily make assumptions about what is occurring for us if we go it alone.   For example, I assumed that my numb feet were the result of peripheral neuropathy caused by Long Covid.  When I consulted my medical practitioner, I  discovered, through the X-Ray that he requested, that my assumption was wrong – the actual problem was multi-level spinal degeneration.   However, it is important to consult practitioners who are open to multiple explanations of chronic symptoms, such as those induced by allergies and food sensitivities.  Often, this may involve a medical practitioner who has a holistic perspective and/or is  qualified in functional medicine.

I recently participated in a Creative Meetup conducted by Health Story Collaborative.  During the meeting, Diane Kane responded to a discussion by a number of participants who were experiencing Long Covid symptoms such as loss of sense of smell, brain fog, and allergies.  When I mentioned my ongoing battle with food sensitivities and allergies, Diane shared some information about Mast Cell Activation Syndrome (MCAS).  She explained that her website is a research hub for MCAS.  On the website, Diane shares her own extended patient story as well as research resources including a video presentation on MCAS by Dr. Larence B. Alfin, author of Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity.

What is Mast Cell Activation Syndrome?

Dr. Kelly McCann in a video podcast interview explains that mast cells are a key part of our normal immune system.  Their role is to watch for invaders that would cause injury to our bodies.  They reside everywhere in our bodies from our head to our feet, and typically live in areas of our body that are at our interface with the environment, e.g. our skin, our blood vessels and our nerves.

Mast cells are responsible for delivering chemical messengers, called “mediators”, such as cytokine and histamine, that produce an inflammatory response to the perceived invader, e.g. a virus, environmental chemicals, mold, or the flu.  Kelly points out that research has shown that mast cells play a major role in the “cytokine storm” that causes an inflammatory response to Covid-19.  If the “foreign invader” is overcome (e.g. we recover from Covid or the flu), “everything quiets back down again” and ‘inflammation goes away”.

However, for some people mast cells become over-active, “hyper-vigilant” and hyper-responsive” – a condition identified as Mast Cell Activation Syndrome (MCAS).  What happens then is that our body “misperceives things”, some of which are actually good for us, e.g. healthy foods.  Hence, we can end up with food sensitivities and allergies (to things like smells, chemicals and some foods).  Kelly makes the point that because of the pervasiveness of mast cells in our body, “anything in our body could present as a mass cell activation symptom”, e.g. brain fog.

Kelly explains that Mast Cell Activation Syndrome is “a spectrum” – ranging from mild to extreme.  A key feature of MACS is that over time, without intervention, there will be an “escalation in the inflammatory or allergic symptoms” of an individual.  The inflammatory response can be exacerbated by what Kelly calls “hits”, e.g. a virus, sustained exposure to mould, or a tick bite (leading to Lyme Disease).  For example, the progression of mast cell activation syndrome could be signalled by the worsening of food sensitivities for an individual.    

Diane’s personal health story

Diane created her website as a means of education and advocacy about the independent science research being conducted on mast cell activation syndrome.  Her own story is really about the extreme end of the spectrum of MCAS and is one of resilience, persistence and hope – a great source of inspiration for anyone experiencing MCAS symptoms.  Diane’s multi-dimensional health problems persisted over 46 years.  Despite visiting 80 consulting doctors and undergoing “extensive evaluations” at 15 major hospitals and suffering multiple anaphylaxis attacks over 20 years, she was not diagnosed with MCAS until 2017 when she visited Dr. Ali Rezale of the Cedars-Sinai Medical Center. 

Dr. Rezale and Dr. Alfin are working with Diane to improve her health overall.  In the meantime, Diane is working on writing a book titled, The MCAS and Covid-19 Theory: A Multidimensional Epigenetic Phenomenon.   As an experienced medical researcher and author who suffered long-term symptoms of MCAS, she is well-qualified to document her story and the growing body of relevant scientific research.  Diane provides draft copies of early chapters of her book on her advocacy website. 

My health story

I have experienced multiple “hits” as described by Dr. Kelly McCann.  Having had asthma as a child, I am prone to respiratory problems and allergic reactions.  While I overcame the asthma by the time I was 12 years old, since then I have contracted pneumonia three times, RSV (Respiratory Syncytial Virus) three times and Covid-19 in 2021.   In 2017, I experienced major eczema covering my whole body, following 8-weeks of intensive antibiotics to heal an infected leg (resulting from an operation to remove a melanoma).   Since then I have experienced continuous food sensitivities and allergy which are increasing in breadth and depth to the point that there are very limited things I can eat or drink without negative side effects. 

Dr. Kelly McCann explains that there are two things going on with MCAS – a trigger(s) and reaction(s).  Both need to be addressed.  In terms of food triggers, I can relate to Dr. Kelly McCann’s comment that she was gluten-free, dairy-free and unable to eat a long list of foods.  As Kelly suggests in her presentation, I have been undertaking an elimination process trying to identify specific foods (especially those high in histamine or salicylates) that cause aggravation of my symptoms so that I can remove them from my diet. 

In regard to reactions, Kelly argues that there is a need to dampen the hyperactivity of the immune response.  My naturopath, Dr. Mark Shoring, agrees with a tentative diagnosis of MCAS in my case, and recommended initially a course in Chinese skullcap (Scutellaria baicalensis), a herb identified by Mt Sinai Health System in New York as being “used in traditional Chinese medicine to treat allergies, infections, inflammation, cancer, and headaches”.  This treatment, along with Turmeric, is designed to dampen down my hyperactive immune response. So, my somatic strategies, at the moment, include identifying and eliminating aggravating foods and drinks while simultaneously calming the inflammatory response of my immune system.

Mind-body connection and healing practices

Kelly maintains that she experiences the influence of the mind-body connection everyday in her clinic when working with patients.   She points out that the impact of mind-body connections is developed through our early family and developmental experiences.  Unfortunately, we are often prone to misperceive these experiences or develop false beliefs that lead to emotional problems such as low self-esteem and emotional dysregulation.  She argues that we have to envisage the health challenge confronting people with MCAS in terms of a three-legged stool – Mast Cell Activation, Limbic System Activation (our emotional centre) and Vagus Nerve Dysfunction (the main nerves of the parasympathetic nervous system).

Kelly mentions a number of practices that can help retrain the limbic system to get our “mental/emotional loops” and habituated behaviour under control, e.g. Dynamic Neural Retraining System, the Gupta Program and Cathleen King’s Primal Trust Program.

Vagus Nerve Dysfunction can lead to people with MCAS becoming stuck in fight/flight/freeze behaviour which can impede healing.  Kelly maintains that the approach required here is stimulation of the vagus nerve to help people to get “back into parasympathetic rest and digest”.  She suggests approaches to achieve restoration of balance, e.g. breathing exercises, meditation and devices such as EmWave, HeartMath and Rezzimax.  Kelly mentioned that she uses mind-body techniques in her clinical practice when the person she is treating is receptive to these approaches.

Reflection

I think it is important to remember that MCAS impacts each individual differently.  The impacts are influenced by our biology and the number and severity of what Kelly calls “hits”.   There are so many confounding variables involved that self-diagnosis is likely to mislead us.  However, this should not stop us from being proactive, e.g. identifying and reducing or eliminating our triggers.  Actively seeking to grow in mindfulness can help us to stimulate the vagus nerve, activate our relaxation response and overcome negative thoughts.

Reading about Diane’s experience prompted me to revisit my naturopath and discuss his diagnosis of my food sensitivity and allergy experience.  He explained that his recommended treatment approach was based on the assumption that I was experiencing MCAS.

During one of my Creative Meetups, also attended by Diane, we listened to a reading of William Stafford’s poem, The Way It Is.  Listening to this poem and the subsequent discussion in the Meetup group prompted me to write a poem about my food sensitivities and allergy:

The Inflammatory Thread in My Life

There are many things I can’t eat
fruit, gluten, dairy and red meat.
I feel left out that I can’t share
even with delicious family fare.
I crave something sweet
but the cost is too steep.
Hives and rashes make me really itchy
legs and feet are shamefully icky.
Wine is off the table, not that I am unable
it’s the swollen ankle, that renders me unstable.
The endless cycle of elimination
to discover the source of inflammation.
It’s harder to share a meal with my wife
what I’ve done for forty years of my life.
Covid-19 has a long arm
it’s still doing me harm.
Almond croissants are my passion
a loss of consciousness my reaction.
Butter was a food sensitivity
It’s now a dangerous allergy.
Food and drink are tainted rewards
a mindset change to move forward.
It’s a long journey with a clear destination
It takes patience, perseverance and dedication.

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This post is provided for information purposes only and is not intended to replace personal medical advice provided by a trained medical practitioner.  Please seek advice from a qualified professional before deciding on treatments for yourself or other members of your family.

______________________________________

Image by Ingo Jakubke from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site and the resources to support the blog.