Toxicity and the Impact of Our Environment on Chronic Illness With Dr. Neil Nathan
Published on Mar 15, 2019
Published on Mar 15, 2019
by Jenny Buttaccio
If you spend any amount of time in online Lyme disease forums, support groups, or other gatherings of Lyme patients, you’ll most definitely hear people talking about Mast Cell Activation Syndrome (MCAS). The conversation tends to be fraught with frustration — and understandably so.
MCAS is a primary suspect among people whose mild sensitivities or reactions to food, stress, chemicals, or something else have suddenly accelerated into a list of life-altering, distressing symptoms. Often, these patients struggle as they attempt to identify the hidden triggers that are making them feel like their body is revolting against them.
The syndrome is one subclass of disorders that fit into a category known as mast cell activation diseases (MCADs). Historically, the medical community has viewed MCAS as rare, but one study in the Journal of Hematology and Oncology suggests it’s a rather common problem in patients with chronic health conditions.
“Signs and symptoms associated with mast cell overactivity are not uncommon in people struggling with chronic Lyme disease and similar chronic illnesses such as fibromyalgia,” says Dr. Bill Rawls, Medical Director of Vital Plan. “The stew of microbes and other stress factors associated with these conditions disrupt immune system functions and push certain aspects of the immune system, such as mast cells, into overdrive.”
So what exactly is MCAS, and more importantly for people with the condition, what can be done about it? Here, we’ll explore this multisystemic syndrome and discuss the various strategies you might find helpful for coping with and overcoming it.
Mast cells are small, wandering immune cells that move throughout the various types of connective tissues in your body, such as the skin, blood, bone marrow, and lining of the intestinal tract. We all have them, and their primary function is to alert the body when a disturbance has occurred.
Mast cells help keep infections in check and manage gastrointestinal health, allergens, the invasion of pathogens, the inflammatory process, and more. They contain small sacs, also known as granules, that store potent signaling agents, or chemical mediators, like heparin, histamine, and others. When the cells become aggravated by illness, injury, or an infection, even to a mild degree, they selectively release these mediators, which initiates an inflammatory response in the body.
For instance, mast cells are involved in allergic reactions: They secrete histamine, the chemical that, when produced in excess, causes allergy symptoms like itchy skin, rashes, watery eyes, swelling, and a runny nose. Histamine dilates blood vessels and helps clear the irritant.
In a healthy person, when mast cells are triggered by harmful internal and external circumstances, the cells respond in a productive way — by communicating with other cells that control the body’s physiological and immunological responses, according to an article in the Journal of Histochemistry and Cytochemistry. For most of these people, short-term use of an over-the-counter antihistamine combined with avoiding the bothersome substance can ease the annoying symptoms.
But in people with MCAS, the mast cells demonstrate an exaggerated and disproportionate release of chemical mediators across many systems of the body. The syndrome can cause widespread, debilitating symptoms that pop up suddenly, change from one day to the next, and shift in intensity. They also vary vastly from person to person. For example, one person may experience typical allergy symptoms like itchy skin, rashes, or swelling, another may encounter more food-related challenges, and a third may have every symptom in the book.
Furthermore, Lyme disease and fibromyalgia patients aren’t the only ones prone to mast cell involvement. It can also be found in people with idiopathic anaphylaxis (an anaphylactic reaction where the cause is unknown), interstitial cystitis (IC), and irritable bowel syndrome (IBS), due to the ability of the mast cells to generate chronic inflammation. Since many chronic diseases are associated with excessive inflammation, we’re probably just getting started in acknowledging the overlapping conditions that may be connected to MCAS.
MCAS might be a possible diagnosis when people are chronically ill, demonstrate signs and symptoms in multiple systems of the body, and have a primary diagnosis that doesn’t account for a large part of their clinical presentation. In other words, if a person has a number of symptoms that fall outside the scope of their primary chronic illness diagnosis, they could be exhibiting signs of mast cell activation involvement.
The symptoms of MCAS can affect both children and adults. Occasionally, multiple members of a family may exhibit signs of the condition, indicating a possible genetic factor. The systems impacted and related symptoms can include any combination of the following:
That’s a giant list of symptoms! To make matters worse, standard lab tests or imaging may not reveal any abnormalities or clues to the underlying cause that’s driving a hypersensitive mast cell process, making the diagnosis of MCAS all the more challenging to obtain.
The first diagnostic criteria for MCAS came from a group of international physicians in 2011, meaning the present knowledge about mast cell disorders is still in its infancy. Due to the complexity of the illness and lack of mainstream medical awareness, patients struggling with MCAS may find it difficult to obtain an accurate diagnosis, and they might see many specialists to no avail in the process of searching for relief.
However, more healthcare professionals are slowly becoming aware of the havoc an extreme and prolonged mast cell reaction can have on the body. The Mastocytosis Society, a nonprofit organization with a mission to provide support and resources to patients, contains a Physician Database of medical professionals who may be able to help you.
In many circumstances, a diagnosis of MCAS may be suspected based on a person’s clinical presentation, lab work indicating the presence of histamine or other chemical mediators, response to medications, and the diagnosis or exclusion of overlapping diseases. Currently, there are three key diagnostic criteria for MCAS:
When discussing your condition with your doctors, it’s crucial that you provide them with a detailed list of your symptoms. People who have MCAS will note symptoms that occur in two or more systems of the body at the same time; the symptoms can wax and wane or be chronic, and there’s no known underlying cause for them.
Your physician must be able to document that your symptoms are associated with mast cell activity and may order blood or urine tests to check for an increase in mediators like tryptase (an enzyme that’s present in allergic reactions), histamine, or prostaglandin levels. During a flare-up of MCAS, one or more of these mediators are apt to be elevated.
You may be asked to track your response to medications that interfere with the release of mediators — namely histamine. A favorable response to drug therapy, meaning your symptoms lessen or resolve completely, points to some amount of mast cell activation as the culprit for your misery.
If you believe you’re suffering from MCAS, a multi-faceted treatment approach centered around providing symptom relief, balancing the immune system, and searching for underlying factors will be of significant benefit to you.
To date, no single factor has been decided upon as a cause for MCAS, but researchers believe genetic variants play a role in who’s likely to develop the syndrome. As a matter of fact, a study in the peer-reviewed online journal, PLoS ONE, showed that 74 percent of people with MCAD had at least one first-degree relative with disorders affecting mast cells, adding further credence to the idea that there’s a genetic component involved with MCAS.
Beyond genetics, the immune dysfunction present in people with chronic Lyme disease and other chronic illnesses is most likely a piece of the puzzle contributing to an unruly activation of mast cells. As Dr. Rawls explains, there has to be a driving force behind the illness.
“Various microbes associated with these illnesses manipulate the immune system and cause it to go haywire,” explains Dr. Rawls. “Because the spectrum of microbes is different in every person, the types of symptoms are also different. He stresses too that it’s not one microbe, but a disruption of the entire balance of the microbiome that is the most likely culprit.”
Other pieces of the puzzle are the factors that allow troublemaking microbes deep in tissues of the body to flourish. Dr. Rawls calls them “system disruptors,” and they include poor diet, toxins, stress, lack of movement, and poor sleep. When that microbial burden becomes too great, it tips your microbiome balance in the wrong direction and further disrupts immune function, driving inflammation and initiating symptoms.
With MCAS, the immune system is stuck in high alert mode, so it shouldn’t be surprising that more than one trigger can set off a response, and triggers may change over time.
The list of some of the more common triggers includes (but is not limited to):
“As with any illness, easing symptoms is important — antihistamines, like Benadryl and Claritin, and H2 blockers, like Pepcid and Tagamet, can provide relief in the short term,” says Dr. Rawls. “But treating symptoms alone is not a satisfactory solution.”
The reason: Over time, you can build up a tolerance to these drugs, requiring more potent medications like corticosteroids and immune blockers, which can lead to a whole host of undesirable side effects. “To treat the problem, you have to address the underlying causes.” says Dr. Rawls.
Of the utmost importance is avoiding triggers that spark a flare-up of MCAS. Keep handy the list of common triggers above, and add any new ones you discover to your list. Implementing an elimination diet and keeping a daily log of your foods, activities, medications, and supplements, as well as the timing and nature of any symptoms you experience, is an incredibly useful way to identify things that could be problematic for you.
Keep tabs on your stress levels, too. Chronic stress is another factor that sends the immune system into high gear; herbs can be very beneficial here. Dr. Rawls recommends CBD (cannabidiol) from hemp, which has an overall calming and balancing effect on both the nervous system and the immune system. Other herbs such as motherwort, bacopa, and passion flower can also help bring on calm and minimize symptoms, as can learning and practicing relaxation techniques such as qigong, meditation, and yoga.
Additionally, environmental toxins in food, beverages, and the air we breathe can aggravate immune hypersensitivity or trigger reactions. Dr. Rawls emphasizes the importance of eating organic, filtering your water and air, and looking for sources of hidden toxins in your environment, especially mold, and cleaning them up. Furthermore, he recommends enhancing detoxification by increasing your level of physical activity as your body allows.
Moving beyond calming immune system hyperactivity, restoring balance in the microbiome, both in the gut and the body as a whole, is essential for getting back to normal. Herbal therapy is an effective way to manage the microbial load in the body without disrupting the normal flora in the gut microbiome, which is critical to digestive health.
All herbs have some antimicrobial properties; here are a few of the more powerful ones Dr. Rawls relies on most for suppressing overgrowth of microbes in tissues and cooling down a hyperstimulated immune system:
People with MCAS may also benefit from herbs that assist the body with reducing elevated histamine levels. Natural antihistamines like quercetin, bromelain, and stinging nettle can be helpful. Some patients also report relief by supplementing with diamine oxidase (DAO), a key enzyme that’s responsible for the body’s ability to metabolize and break down histamine.
A word of caution when starting herbs: People with MCAS can react to herbal therapies, too. To avoid overtaxing your body, ease into an herbal protocol. Instead of taking several supplements at one time, choose one herb and see how your body tolerates it.
Through a bit of trial and error, you may find that you can only take an herb a couple of times a week, as opposed to every day. Ultimately, tolerance to herbal therapies will vary from person to person; a crucial point to remember is to always start low and go slow with your dosing.
Despite your best efforts, from time to time you may experience a flare-up of MCAS where you’re unable to pinpoint a cause, sending you into panic mode. In those situations, go back to the basics:
Sometimes, contending with a chronic illness of any kind can make you feel powerless. Add in unhealthy lifestyle choices, and it can be hard to get ahead of the symptoms of MCAS. With regards to MCAS, Dr. Rawls advises, “Of course, genetics and aging play a part in this illness, but remember that you do have a measure of control over a few things. You can change what you eat. You can manage toxins. You can get out and move.” Ultimately, do what you can to feel better now while also addressing long-term recovery.
At the present time, there is no one-size-fits-all approach to beating or treating MCAS, but by decreasing your microbial burden, monitoring your intake of high-histamine foods, making healthy lifestyle choices, managing stress, and cultivating good sleep, you can do a lot to stabilize mast cells and balance and nurture your immune system.
Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.
You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.
Please go to link above to read The Better Health Guy’s summary on MCAS presentations at the Chicago ILADS convention. Scott has requested people go to the link as there may be future corrections to the information.
Afrin: “Mast Cell Activation Disease: Foundation and Application in Tick Borne Disease Management”
Mozayeni: “Mast Cells: Considerations in the Lyme or Bartonella Patient”
For those of you suffering from MCAS, I highly recommend Dr. Afrin’s book, “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity”
https://madisonarealymesupportgroup.com/2018/07/27/mcas-vaccination-lyme-msids/ Dr. Afrin recently related the story of a patient,
“who in the first year of his life had been perfectly normal and then, within hours of his first DTP vaccine at age one, developed into just a terrible multi-system inflammatory mess, including essentially acute onset autism.”
When he was 20 years old, biopsies tested positive for mast cells. He was subsequently treated for MCAS with remarkable improvement.73
Most babies in the U.S. are being given 25 doses of nine different vaccines (or more) by their first birthday and can receive eight or more vaccines simultaneously.74 As mentioned previously, there are ingredients in vaccines that provoke inflammatory responses in the body that involve mast cell activation.75
I repost the following article because Lyme/MSIDS patients have chronically high inflammation within the body and many struggle with MCAS as well. Please read the following article and consider your own symptoms. Discuss these with your doctor.
Do you or does someone you know have severe symptoms of itching, rashes, flushing, stomach or other body pain, frequent diarrhea, nausea, fatigue, brain fog, headache and severe allergies to certain foods, medications or insect stings that may include fainting episodes or anaphylaxis? Although it has been classified as a rare immune system disorder, there are indications that Mast Cell Activation Syndrome (MCAS) may be more prevalent than previously thought and people can suffer for years without being correctly diagnosed.1 With severe allergies and chronic inflammatory diseases increasing in populations around the world, scientists are investigating the association between mast cell dysregulation and various brain and immune system disorders ranging from asthma, inflammatory bowel disease and chronic fatigue syndrome to ADHD, depression, autism and cancer.2 3 4 5
Mast cells are often described as the body’s sentinels because they modulate and orchestrate the immune response and play a critical role in innate and adaptive immunity, as well as maintaining homeostasis in the body.6 7 Mast cells and basophils are types of white blood cells (granulocytes) that are made in the bone marrow. While basophils circulate in the blood, mast cells reside in tissues, primarily connective and mucosal tissues near blood vessels and nerves of the skin, gastrointestinal, respiratory and genitourinary tracts, and the brain.8 9
Mast cells and basophils are part of the body’s first line of defense when responding to injury or foreign antigens, such as pathogenic bacteria, viruses, parasites, protozoa, fungi and toxins.10 During the immune system’s normal protective response to a perceived threat, mast cells can release over 200 potent pro-inflammatory mediators within seconds of activation, including histamine (amino acid product), heparin (anti-coagulant), tryptase (enzyme) and cytokines (cell signaling protein molecules).11 12
The activation of this normal protective inflammatory response to internal or external stress increases blood flow to the site of the infection or wound to aid in healing. Acute inflammatory responses are often accompanied by the four classic signs of redness, heat, swelling and pain, which eventually disappear as cells regenerate and inflammation resolves during the healing process.13 However, allergic inflammatory responses are also provoked by mast cell activation.14
Mast cell activation is common and helps combat threats to our health. However, when a dysregulated immune system overproduces mast cells or when mast cell activation is out of proportion to the perceived internal or external threat, it can compromise our health.
The most serious of mast cell activation diseases (MCAD) is systemic mastocytosis, which can develop when genetically altered mast cells infiltrate and accumulate in large numbers in major organ systems, such as the skin, liver and intestines.15 16 A rare form of MCAD is aggressive systemic mastocytosis, usually caused by somatic mutations in the KIT gene, which progresses rapidly and causes organ damage and failure.17 An even rarer form of mast cell disease is mast cell leukemia and mast cell sarcoma.18
Mast Cell Activation Syndrome (MCAS) is a common variation of mast cell disease and can be more or less severe depending upon epigenetic, environmental, lifestyle and other host factors. MCAS occurs when a normal amount of mast cells inappropriately and chronically release histamine and other pro-inflammatory mediators that can lead to persistent inflammation in one or more parts of the body. Over time, chronic inflammation can damage cells if inflammation cannot be resolved and every organ in the body can be affected.19
Systemic mastocytosis is estimated to affect 1 in 10,000 people. However, the prevalence of MCAS is not known and some researchers estimate the less serious forms of mast cell dysregulation could affect between 10 and 30 percent of populations.20 21
Symptoms of MCAS can wax and wane and often various symptoms start in early childhood, although people generally do not get diagnosed for decades after symptoms appear. The effects of mast cell dysregulation can cause a plethora of diverse symptoms, depending on where the mast cells are activated in the body.
Common symptoms of MCAS can include fatigue; pruritus (severe itching); migraine; frequent nausea and diarrhea; allergic reactions to certain foods, medications, chemicals, insect bites and environmental antigens; chronic sinus congestion or dry cough; gastro-esophageal reflux disease (GERD); urinary tract infections; muscle cramping; feeling cold; sweating, especially at night; hair loss; dry eyes; conjunctivitis (pink eye); mouth ulcers (canker sores); dental decay; heart palpitations; inability to concentrate and brain fog; anxiety, depression and insomnia.22 23
When mast cells overeact to a benign substance as if it were a foreign antigen posing a serious threat, symptoms can be life threatening like when a person has an anaphylactic reaction to peanuts.24 Mast cell over-activation and release of large amounts of histamine in the body can be unpredictable, so people with MCAS are at risk of reacting to different foods, alcohol or medications at any time, leaving them uncertain as to when they might have another reaction to something they previously were not aware was a trigger for mast cell activation.25 Many people with MCAS carry an epi-pen with them in case of anaphylaxis.
Diagnosing mast cell disease is difficult and involves blood and urine testing and, less frequently, skin or bone marrow biopsy.26 Most medical doctors in general practice are not well informed about MCAS, while doctors specializing in functional medicine tend to be more familiar with symptoms. Functional medicine focuses on a personalized, integrative approach to investigating root causes of health problems by analyzing the unique genetic, epigenetic, biochemical, environmental and lifestyle factors that affect an individual’s immune function and influence the development of complex chronic diseases.
Because MCAS can present differently in different people, the goal is to identify individual triggers for mast cell activation, including food (such as gluten, dairy, baker’s yeast, shellfish, nuts, wheat, corn); or chemicals (alcohol, certain prescription medications, MSG, aspartame, artificial dyes, cleaning products); mold and spores; extreme heat or cold; vigorous exercise; stress or other potential triggers and avoid them.27 There are many unanswered questions about mast cell disease and few prescription drug treatments.28 There is evidence that certain flavonoids (such as Quercetin and Rutin) inhibit histamine release and expression of pro-inflammatory cytokines in mast cells. 29
Because overactive mast cells release pro-inflammatory mediators causing widespread inflammation in the body, MCAS has been implicated in a number of diseases that involve chronic inflammation and immune dysfunction. There is evidence that MCAS is related to allergic/inflammatory diseases, autoimmune disorders, and autism spectrum disorder.30 31
Health problems that have been associated with MCAS include eczema, psoriasis, and other skin disorders; irritable bowel syndrome; small intestine bowel overgrowth (SIBO); interstitial cystitis (bladder pain syndrome); asthma; migraines; depression; anxiety; ADHD; Obsessive Compulsive Disorder (OCD); autoimmune diseases like rheumatoid arthritis, lupus and Hashimoto’s; cancer; peripheral neuropathy, multiple sclerosis; diabetes; obesity; endometriosis; infertility; fibromyalgia and postural orthostatic tachycardia syndrome (POTS), among others.32 33 34
Histamine is a neurotransmitter that facilitates communications between neurons throughout the nervous system. Histamine levels in the body help control the sleep and wake cycle and influence metabolism, thyroid function, reproduction and management of stress, as well as regulate body temperature, maintain fluid balance in the body and other important functions. Histamine can also increase permeability of the blood brain barrier.35
People with histamine intolerance lack sufficient levels of Diame oxidase (DAO), a gut enxyme, and histamine N-methyltransferase (HNMT), a liver enzyme, which break down and detoxify histamine in foods, medications or alcohol. When these enzymes fail to do their job, high levels of histamine circulate in the blood and cause histamine intoxication.36 Eating histamine-rich foods, drinking alcohol or taking prescription drugs that release histamine and or inhibit DAO or HNMT enzyme activity can cause high histamine levels and symptoms like diarrhea, headache, sinus congestion, heart palpitations, itching and flushing, low blood pressure and many other symptoms.
The symptoms of histamine intolerance and MCAS are similar and a person can have either histamine intolerance of MCAS or both. The main difference between the two is that histamine intolerance involves the triggering of high levels of histamine in the blood that cannot be efficiently detoxified, while MCAS involves dysregulated mast cells releasing not only histamine but multiple inflammatory and other types of mediators in tissues of the body.37
There is some evidence for genetic predisposition to histamine intolerance. Like MCAS, histamine intolerance can be hard to diagnose even with blood and urine tests. Treatment for histamine intolerance focuses on avoiding histamine rich foods and alcohol or medications that block DAO or HNMT enzyme activity. Some people with histamine intolerance take DAO supplements to help the body break down histamine or take anti-histamines to control levels of histamine in the blood.38
Over the past decade, a number of reports and studies have linked Autism Spectrum Disorder (ASD) with immune dysregulation and chronic inflammation in the body, including in the brain.39 40 41 There is evidence that mast cell dysregulation is associated with Autism Spectrum Disorder (ASD).42 43
Some researchers have suggested that the relationship between immune response and brain function may be negatively affected when toxins cross the blood brain barrier during a critical point in neural development, causing neurotoxicity and immune dysregulation that disrupts the natural neuron pruning process and contributes to the development of autism spectrum disorders. 44 If the immune system is dysregulated, it can affect the formation and necessary removal of physical connections between neurons that is critical to maintaining healthy brain cell function.45
ASD children have a higher rate of allergies (30%) compared to neurotypical children (2.5%). Tufts University Professor Theodore Theoharides, PhD, MD, who has conducted extensive research into mast cell disorders, has published a series of studies on the association between MCAS and autism. The evidence he has provided suggests that overactive mast cells in the brain and gut triggered by non-allergic stimulus can lead to brain inflammation and chronic brain dysfunction with symptoms diagnosed as autism. Evidence that mast cells play a role in ASD is also supported by the fact that the hypothalamus, which regulates behavior and language, houses the majority of mast cells in the brain and people with ASD often have problems associated with language and behavior.46
Currently, MCAS is not considered to be a genetically inherited disease but there is evidence for epigenetic predisposition to development of MCAS as it tends to run in families, albeit with varying degrees of severity and presentations in individuals within the same family.47 Perinatal stress, environmental exposures, DNA methylation, somatic genetic mutations and interactions between microbiota and mast cells have been proposed as contributing co-factors.48 49 50
According to University of Minnesota Professor Lawrence Afrin, MD, an oncologist and leading mast cell authority, mast cell disease can present with different manifestations and outcomes for each person because every person is unique:
“Conveying a new understanding that all mast cell disease features inappropriate mast cell activation, the new top level mast cell activation disease (MCAD) encompasses various types of rare mastocytosis and likely prevalent mast cell activation syndrome (MCAS). The apparent uniqueness in each patient with MCAD of constitutively activating mutational patterns in KIT and other mast cell regulatory elements likely is the principal driver of not only the specific clinical presentation, and therapeutic response profile, in each patient but also the great heterogeneity across this population.”51
When the immune system repeatedly mounts an inappropriate acute inflammatory response to antigens or non-allergic substances, it can lead to unwanted chronic inflammation in the body that is common to a number of immune and neuroimmune system disorders.52 53 Vaccination stimulates an inflammatory immune response that promotes production of antibodies and the acquisition of artificial active immunity.54 However, unlike naturally acquired immunity that involves a normal inflammatory response producing both innate (cellular) and humoral (adaptive) immunity, most vaccines manipulate the immune system in way that only stimulates production of vaccine strain antibodies and humoral immunity.55
Because vaccine acquired artificial immunity is temporary, many vaccines contain adjuvants, such as aluminum or squalene, to stimulate a strong inflammatory response in the body, which involves mast cell activation.56 There is mounting scientific evidence that when individuals cannot tolerate hyper-stimulation of the immune system, the atypical inflammatory response to vaccination can remain unresolved, become chronic, and lead to allergy and autoimmunity.57
Vaccines contain many ingredients, including chemicals, virus like protein particles and heavy metals, such as aluminum adjuvants and mercury (Thimerosal) preservatives, as well as other substances that can cause inflammation.58 59 Mercury can activate and destabilize mast cells,60 61 which disrupts the blood brain barrier and makes it easier for mercury to enter the brain where it can remain for long periods of time.62 Even a low concentration of mercury has been shown to activate mast cell mediators in the brain. Scientists have demonstrated that Thimerosal-derived ethylmercury is a mitochondrial toxin and may damage mitochondrial DNA.63
Polysorbate 80 is a chemical emulsifier added to some vaccines. Polysorbate 80 has the ability to help deliver substances across the protective blood brain barrier and into the brain.64 When toxins enter the brain, mast cells are activated and cause inflammation.65 Polysorbate 80 has also been shown to increase histamine levels in animal studies.66
The first vaccine found to cause acute and chronic brain inflammation (acute and chronic encephalopathy) and permanent brain dysfunction was smallpox vaccine created by Edward Jenner in 1796.67 The first vaccine found to cause acute and chronic encephalopathy with permanent brain dysfunction that ranged from learning disabilities and behavior disorders to profound mental retardation was whole cell pertussis vaccine licensed in 1915 and combined in 1949 with diphtheria and tetanus vaccine to create DPT vaccine.68 69 Whole cell pertussis vaccine ingredients include pertussis toxin, endotoxin, aluminum and mercury.70
Mast cells play an important part in keeping the body healthy, but when they malfunction, can cause system wide chronic inflammation in the body that interferes with quality of life or can even cause death.
Dr. Afrin recently related the story of a patient,
“who in the first year of his life had been perfectly normal and then, within hours of his first DTP vaccine at age one, developed into just a terrible multi-system inflammatory mess, including essentially acute onset autism.” When he was 20 years old, biopsies tested positive for mast cells. He was subsequently treated for MCAS with remarkable improvement.73
Most babies in the U.S. are being given 25 doses of nine different vaccines (or more) by their first birthday and can receive eight or more vaccines simultaneously.74 As mentioned previously, there are ingredients in vaccines that provoke inflammatory responses in the body that involve mast cell activation.75
Although for the past several decades, most pediatricians and public health officials have rejected the possibility of a relationship between vaccination and the development of allergic and autoimmune disorders,76 the apparent increase in mast cell dysregulation in highly vaccinated populations deserves more in-depth investigation.
The two outstanding questions are:
by Lonnie Marcum
What are you going to do, when everything your child eats makes her sick? As I’ve explained in my earlier posts about mast cell activation syndrome (MCAS), virtually anything my daughter put in her mouth triggered a serious allergic reaction.
However, with the help of an incredible medical team and my daughter’s determination to succeed, we found a path to healing. I’m sharing what we did in hopes that it can help others in the same boat.
This is part four of a series on mast cell activation syndrome (MCAS) triggered by Lyme and co-infections. Part one, “When the immune system goes haywire,” serves as an introduction to MCAS; Part two, “The agony of mast cell activation syndrome (MCAS),” reviews the five-step process I used to help my child begin healing from MCAS; Part three, “More about healing from mast cell activation syndrome,” outlines the essentials to finding and eliminating food triggers.
I have been writing for LymeDisease.org since 2016. This series on MCAS has generated more comments and questions than anything else I’ve written. By far, the most frequent question I’m getting is how to survive a food intolerance crisis.
Today I will share how we got my daughter past her extreme food sensitivities. Future posts will include identifying mold, environmental and cosmetic triggers, how stress affects mast cells and the immune system, and getting your life back.
At the beginning of this MCAS journey, our routine was very stringent. Once we found the right combination of antihistamines, and she was able to go three months without an allergic reaction, we could relax a little. Believe me, I do know what it’s like to be in food crisis, so I’ve laid out a sample of some of our favorite low-histamine foods below to help others learn the process.
In my daughter’s case, the foods we chose were specific for her genetics and their high nutritional value. Her diet is also gluten-free, dairy-free, low in sugar, low-histamine, low-oxalate, and low in sulfites. Depending on your specific needs, you may not need to eliminate all of the above ingredients, or you may need to eliminate these plus others —like foods high in salicylate, a chemical found naturally in certain foods.
The key for us was to make everything from fresh, wholesome, organic ingredients. During her crisis we went with frequent small meals. Because the act of chewing and digesting requires histamine, smaller doses were less triggering. We also eliminated all leftovers, because “aged” foods are higher in bacteria and will trigger more histamine. For a complete list of low-histamine foods click here: http://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
As things improved, I cooked two meals at a time. She’d eat one immediately, I’d refrigerate the other in a glass container (no plastics), and she’d eat the next meal within 3-5 hours. (This allowed me to get other things done.)
We also made sure each meal contained one protein, one carbohydrate and at least one fruit or vegetable. The following are a few suggestions of low-histamine foods that we rotated every three to four days during my daughter’s food crisis. Keep in mind if you are adding new foods the name of the game is low-and-slow, as I laid out in my previous post.
*I use 100% extra virgin olive oil to sauté or bake everything. If you are salicylate-intolerant, you may have trouble with EVOO. Coconut oil and nigella sativa oil (black seed oil) are also recommended.
**Seasonings: Sea salt, pink pepper, ginger, chives, garlic (small amounts), basil, parsley, thyme, rosemary, and sage (dehydrated herbs are more tolerable when in a crisis.)
Note: I am not a doctor. Food allergies are unique to each individual, so it’s important that you work closely with your doctor or a registered dietitian to find and eliminate your food triggers, then design a balanced plan that works for you.
SIGHI-Leaflet Histamine Elimination Diet Simplified histamine elimination diet for histamine intolerance (DAO degradation disorder) http://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
For the previous articles by Marcum on MCAS:
https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/ Our LLMD uses LDA/LDI for those with immunoconfusion with success. More about the treatment within this link.
https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/ The many benefits of MSM – including allergy symptoms:
*Reduces cytokines & inflammation (in vitro studies show MSM reduces IL-6 (a marker implicated in chronic inflammation as well as suppressing NO and prostanoids) *antioxidant *free radical scavenger *kills gastrointestinal, liver, and colon cancer cells *restored normal cellular metabolism in mouse breast cancer and melanoma cells *helps wounds heal *increases blood flow *reduces muscle spasms *antiparasitic properties (especially for giardia) *normalizes the immune system *cholinesterase inhibitor *alleviates allergy symptoms *increases energy *improves condition of hair, nails, and skin
By Lonnie Marcum
This is part three of a series on mast cell activation syndrome (MCAS) triggered by Lyme and co-infections. Part one is an introduction to MCAS including an interview with Dr. Jill Carnahan. Part two is a description of my daughter’s diagnosis of MCAS and the five-step process we used to get her back on track. In this part, I give more details about specifically how we did it.
When trying to calm mast cells, the key is to reduce the number of flares. Eliminating triggers, lowering histamine levels, and getting on the right medication(s) are critical. Every time you have an allergic reaction, it reactivates the mast cells. This domino effect makes the body more sensitive to even minor triggers. The lower you can get your histamine levels and the longer you can go without an allergic-type reaction, the calmer the immune system becomes. In our experience, if you can go three months without a reaction, you are on the road to healing.
This is a tough one. It reminds me of my daughter’s childhood friend, who was diagnosed with diabetes in second grade. After years of failing oral medications, he eventually received an insulin pump that inserts directly into his abdomen. It completely changed the type of sports he could play and the way he had to live his life. But within a year, he had adjusted and could do nearly everything other kids his age did, as long as he adhered to a routine.
My daughter had to come to grips with the fact that she may never be able to roll in the grass or eat many of her favorite foods again. She also had to accept that she’s lost five years of her life and a lot of childhood dreams. Not only that, but fighting our way through the medical system to a diagnosis and treatment left a lot of emotional scars and a type of trauma caused by medical treatment (iatrogenic)– very similar to post-traumatic stress disorder (PTSD). This is where I truly believe a compassionate therapist is needed.
So, to me, healing from MCAS not only requires lowering histamine levels and retraining your immune system, but also retraining your mind, creating a safe environment within your restrictions, and designing a lifestyle that continues to bring you joy.
It may take months to find a doctor well-versed in MCAS. In the meantime, I recommend trying to identify your food triggers. A common method for determining food allergies is an “elimination diet.” You eliminate specific foods for one to three weeks, then systematically reintroduce them and watch for symptoms over the next several days.
If you react to a lot of foods, many doctors recommend starting by eliminating the American Academy of Allergy Asthma & Immunology’s eight foods responsible for most allergic reactions:
We eliminated all of the above, plus foods that were commonly listed as high histamine (see the list I use here: http://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf) and the preservatives/additives that are known histamine triggers:
The secret to a healthy elimination diet is to add one healthy food for each food you cut out. For instance, when you eliminate wheat, you add in quinoa or another nutrient dense carbohydrate. (Read about elimination diets here: https://en.wikipedia.org/wiki/Elimination_diet)
After consulting with my daughter’s doctors and coming up with a list of low-histamine, nutrient-rich foods, we re-introduced them systematically, almost like low-dose immunotherapy.
The first day she would take a small bite and spit it out. If her mouth didn’t break out, the next day she would swallow a small bite, increasing the bite size each time until reaching a full serving. If her mouth tingled or broke out, we would wait several weeks before trying again. We opted to only add one new food every week so we could monitor immediate and delayed reactions. If she didn’t react, we knew these foods could be rotated into her diet every four days.
I will include more information about how we dealt with food issues in my next installment.
https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/ Dr. Carnahan’s article also found here.
Some docs are using LDA/LDI to treat this: https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/
Lonnie Marcum, March 2018
In the winter of 2016, my 17-year-old daughter was dying. She had severe allergic reactions every day, was in constant pain, and was losing weight at a rate that was not sustainable to life. She had reached the end of her rope, and I was completely out of ideas on where to turn for help.
Eighteen months earlier, after a long illness and finally completing treatment for Ehrlichia chaffeensis, Bartonella and Lyme disease, she had been doing great. Unfortunately, she soon caught the flu and then everything went south.
Over the next year, one setback after another landed her in the hospital every other month with atrial-fibrillation (irregular heartbeat) and/or near-anaphylaxis (acute allergic reactions). Each trip to the doctor took one more piece of hope away from us, since no one could pinpoint the cause of her rapid decline.
Over time, my daughter developed allergies to soaps, perfumes, juices, fruits, vegetables, and lunch meats. Eventually, she was down to only two foods that didn’t make her lips swell, mouth break out in blisters and throat tighten–sauteed chicken and brown rice noodles.
Not knowing what to do, I reached out in desperation to the “LymeParents” Yahoo group. Another mother recognized the symptoms I was describing as mast cell activation syndrome (MCAS) and connected me with Dr. Lawrence Afrin at University of Minnesota. Dr. Afrin consulted on my daughter’s case, then referred us to Dr. Mark Renneker, a mast cell specialist at the University of California, San Francisco.
Soon, she received a diagnosis of MCAS, and with it a path to healing.
Coincidentally, one month after my daughter’s diagnosis, I attended Dr. T.C. Theoharides’ lecture on mast cell activation at ILADS in Philadelphia. In his words:
Mast cells are the “universal alarm cell” that starts the inflammatory cascade. They can be triggered by infection, allergens, environmental factors like pollution, or even emotional stress. Once that happens, mast cells set into motion a series of inflammatory reactions, including the activation of immune cells and the release of tumor necrosis factor-alpha (TNF-a), a pro inflammatory protein or cytokine.
If you or a loved one are in a similar situation, here’s what you need to know.
MCAS is a clinical diagnosis based upon signs, symptoms and response to treatment. There are a number of tests available to confirm the diagnosis, but negative tests do not rule out MCAS.
(For a complete guide to the diagnosis of MCAS, click here: https://jhoonline.biomedcentral.com/articles/10.1186/1756-8722-4-10)
Mast cells are a normal part of our immune system. They are located in every organ and connective tissue of the body. When mast cells detect stress, injury, toxins or infection, they release specific chemicals which trigger an immune response. Think of them as sentries or guards.
When mast cells perform properly, they are our friends. When mast cells are agitated or over-reactive, the immune system goes haywire and starts to attack the body, triggering auto-inflammatory processes or some types of autoimmune illnesses.
There are two major forms of mast cell activation diseases (MCAD)
As far back as 1999, researchers were able to demonstrate how Borrelia burgdorferi induces mast cell activation, contributing to greater illness in Lyme disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/
Somehow, I feel this fact has remained under-appreciated until just recently.
(To view my previous blog on symptoms of MCAS, click here: https://www.lymedisease.org/mast-cell-activation-immune-system-goes-haywire/)
When I describe my daughter’s condition to non-medical folks, I say it’s like her immune system has post-traumatic stress disorder (PTSD). After going a year with multiple untreated infections, her immune system was very depleted, and the combination of antibiotics she needed to fight her infections added additional stress. As she completed antibiotic treatment for her infections, we added supplements to boost her immune system and promote healing. Or so we thought.
Unbeknownst to her doctors and me, one of her prescription medications (ketotifen) contained lactose, which she is intolerant to. In addition, she had developed an allergy to microcrystalline cellulose (MCC), one of the most common fillers in prescription medications, vitamins and supplements. Eliminating these allergens was a major turning point in her healing.
Many people with mast cell issues will improve by taking antihistamines. Antihistamines are medications that block or inhibit the histamine receptors on mast cells and other cells found throughout the body.
Histamine is a unique chemical produced primarily by mast cells that causes inflammatory reactions and the itching feeling most of us are familiar with. Histamine also signals the immune system, regulates the digestive system, and acts as a neurotransmitter in the brain, spinal cord and uterus.
There are at least five different types of cells that respond to histamine (H1-H5 receptors) found throughout the body, although H1 and H2 appear to be the most common.
Leukotrine inhibitors —act primarily in the airways (Accolate, Singular, Zyflo)
Mast-cell stabilizers—strengthen or stabilize the mast cell to reduce the release of histamine and other inflammatory chemicals (Cromolyn, Ketotifen, Hydroxyurea)
Tricyclic antidepressants—antidepressant that also sedate H1 receptors in the brain (Amitriptyline, Doxepin, Nortriptyline etc.)
Tyrosine kinase inhibitor—inhibits certain types of proteins that control a wide range of functions including cell growth (Imatinib)
Natural antihistamines and mast-cell stabilizers—natural supplements that act to block or clear histamine and stabilize mast cells (alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, etc.)
Patients with certain genetic defects are more prone to MCAD. Looking into your genetics can help determine your predisposition to MCAD and/or histamine intolerance and help you design a customized nutrition plan.
Genova Diagnostics, Tree of Life, Nutrahacker and Genetic Genie are the tools we used for my daughter. We also ran a complete vitamin and mineral panel to pinpoint nutrient deficiencies. Then, we designed a custom nutrition plan that was specific to her needs—I’ll describe it in detail in my next post.
Basic diet: Clean, fresh (nothing cured, processed or fermented), organic, gluten-free, dairy-free, dye-free, sugar-free, low-histamine, low-citrus, low-oxalate, low-nightshade.
Maintain the same sleep schedule
Maintain the same eating schedule
Maintain the same basic level of activity from day to day
These steps may seem daunting. But when you are in a crisis like my daughter was, you are willing to go to extremes to get your life back. In my next post, I will share more details about what precisely we did.
Note: I am not a doctor. The information here represents my personal opinions and experiences. It is for informational purposes only—it is not intended to treat, diagnose, cure or prevent any disease.
Great, great information here. Many Lyme/MSIDS patients will improve dramatically when they consider MCAS and take active steps like the ones mentioned here.
Another option not mentioned is LDA/LDI. My daughter’s Mast Cell issues are nearly resolved after this treatment that helps the immune system recognize “friend from foe.” Go here for more on LDA/LDI: https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/