Medical Gaslighting and "Somatization Disorders" (Rebranded Hysteria)

The Curse of a ‘None of the Above’ Disease
This article talks about people suffering from health conditions that are under-diagnosed or mis-diagnosed, including Chronic Fatigue Syndrome, Fibromyalgia, and IBS, but more so people whose symptoms get dissmissed or written off as fake or psychosomatic.  Many doctors are quick to jump to this conclusion about patients without doing any testing, based just on their appearance and the symptoms they present with.  It is also common for doctors to have an inflated sense of how much they know and lack of recognition of the limits of their education and the field of medicine itself.  One example cited is that of stomach ulcers, "(o)nly a few decades ago, chronic ulcers were chalked up to stress and diet rather than an infection by Helicobacter pylori, because scientists thought it unimaginable that such microorganisms could endure stomach acid."  

 When Anxiety or Depression Masks a Medical Problem

 

What Do Doctors Have to Say About It?
From Dr Courtney Snyder (In a blog post about Mold Illness)
"Symptoms of mold toxicity impact many parts of the body. Often there are many symptoms that seem unrelated, which is why many who are unknowingly dealing with this, end up seeing multiple specialists and are left feeling their doctors think it’s “all their head.” The diagnosis of anxiety or panic, depression, obsessive compulsive disorder, ADHD/ADD, pseudoseizures and conversion disorder are fairly common. I empathize with doctors who have been trained to relieve symptoms as opposed to seek deeper root causes. Still, I do think all physicians (myself included) can benefit from realizing and saying repeatedly, “There’s so much we don’t know,” or even “I don’t know why you are having your symptoms.” The lack of humility or inability to admit one doesn’t have the answer, sadly can lead to some doctors to discount symptoms as “psychiatric” or even blame their patients for feigning their symptoms."

Misdiagnoses Happen. Medical Gaslighting Should Not
Written by Dr Anne Maitland, one of the leading allergy/immunology doctors in the country, about how common it is for immunological disorders (even ones as well known as asthma, food allergies, and anaphylaxis) to be misunderstood, misdiagnosed, or missed altogether, causing an immeasurable but very large amount of unnecessary suffering.

"Missteps and misunderstandings, even by well-seasoned medical professionals, are human, but medical gaslighting is not. Medical professionals must take a step back and recognize that the interpretation of test results is only as good as the practitioner glancing at the numbers. Moreover, normal test results in patients with chronic pain, unexplained sensitivities to the world, or fatigue should provoke more investigation, rather than a weak handoff to a mental health provider. One potential remedy to avoid these misdiagnoses and medical misdemeanors may be to rebuild the patient-practitioner partnership: the medical home. We should be empowering the patient to take charge of their health care, and we should be reminding the practitioner to be a mindful partner in health, rather than a patriarchal purveyor of prescriptions and procedures."

The Martha Mitchell Effect

Martha Mitchell was married to the attorney general in the Nixon administration, John Mitchell.  She spoke up about the illegal activities that she was witnessing, but her claims were written off as delusional until the actual events of the Watergate scandal became public, when she was vindicated.  Sometimes a patient reports events to a doctor or other health care provider that the provider finds difficult to believe and considers to be delusions even when what the patient is reporting is actually true.  This is called the "Martha Mitchell effect" in reference to her experience of being wrongfully considered delusional.  This is particularly likely to happen when a patient's symptoms are the result of the malicious actions of another person, such as harm resulting from harassment or abuse.  This might include poisoning, stalking, gangstalking (group harassment), or gaslighting.  Abusers sometimes deliberately do things to their victims that make the victim sound crazy if they report it.  This is also more likely to occur if the patient reports harm from a medical procedure, treatment, or another medical provider, or from someone who is powerful or well known.

This effect was seen recently when some people presented to the hospital during the COVID 19 pandemic suffering adverse events from the COVID vaccines and were diagnosed as delusional when they were suffering actual side effects that were later acknowledged by the medical establishment and public health authorities.

Examples of medical gaslighting include:

The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome
"A retrospective chart review was conducted. Among the 429 patients, 405 patients (94.4%) said yes to at least one of the questions, with only 24 patients (5.6%) not having been misdiagnosed with psychiatric illnesses. A total of 378 patients (88%) were told that they were “making it up”, 326 patients (76%) were told that they were attention-seeking, 286 patients (67%) were diagnosed with conversion disorder, 255 patients (60%) were told that “it was in their head”, and 16 patients (4%) were diagnosed with Munchausen syndrome by proxy or a factitious disorder.A retrospective chart review was conducted. Among the 429 patients, 405 patients (94.4%) said yes to at least one of the questions, with only 24 patients (5.6%) not having been misdiagnosed with psychiatric illnesses. A total of 378 patients (88%) were told that they were “making it up”, 326 patients (76%) were told that they were attention-seeking, 286 patients (67%) were diagnosed with conversion disorder, 255 patients (60%) were told that “it was in their head”, and 16 patients (4%) were diagnosed with Munchausen syndrome by proxy or a factitious disorder."

Inappropriate Sinus Tachycardia
“Like Postural Tachycardia Syndrome IST is underappreciated by many in the medical profession and many doctors mistakenly consider it to be a psychological condition. People with IST can find themselves increasingly disabled and may experience high levels of anxiety.”

The Case of CIRS (Chronic Inflammatory Response Syndrome) and Mold Illness
There are many examples of medical conditions that were first described by patients and doctors, for which no physical cause was found for many years.  They were given "placeholder" names as syndromes until such time as their biological mechanism could be figured out, which they eventually were.  There is a list of conditions including Sick Building Syndrome, Chemical Sensitivities, Environmental Illness, Chronic Inflammatory Response Syndrome (CIRS), Toxicant Induced Loss of Tolerance (TILT), Mold Illness, Biotoxin Illness, that had been identified accurately based on patient reports, and in some cases treatments were even discovered based on patient reports of benefits.  These conditions are now understood to be manifestations of Mast Cell Disease, Mitochondrial Dysfunction, and genetic variants that limit detoxification of various compounds capable of inducing excessive inflammation, among other things.  The biological understanding came in time and validated the experiences that patients reported.  

Nagging Pain
This is a Slate article about a program of "boot camps" for people, mostly children, diagnosed with chronic pain (including Fibromyalgia and Central Sensitization) that attempts to "rewire" the symptoms out of the person through brutal and painful exercise and experiences.  Many of the children sent to these "camps" with a diagnosis of AMPS (for "amplified musculoskeletal pain syndrome"), a made-up diagnosis based on an untested theory.  The treatment, which was also made-up based on a this theory, doesn't have any real scientific evidence to support it, just the theory.  The "evidence" that these boot-camp programs work are self-reported questionnaires given to participants at the end of the program.  Part of the program is aggressively drilling into the participants NOT to talk about or report pain or any pain symptoms, so then asking them to self-report is dubious at best.  Everything about this diagnosis, treatment, and these programs is exactly what a cult is and how cults function.  The "patients" are aggressively indoctrinated and brainwashed, their will is broken down, using the exact techniques that cults use- coercive control.  There are no "good" applications of coercive control.  

This is a list of some of the medical diagnoses that survivors of these "boot camp" style programs were later diagnosed with:
Ehlers-Danlos Syndrome or other Connective Tissue Disorders
MCAS
POTS
SCN9A channeloppathy (causing paroxysmal extreme pain disorder with severe dysautonomia including life threatening autonomic storming)
Yao Syndrome
Gastropareses
Adrenal Insufficiency

The following is a comment I submitted as written testimony for a legislative hearing in Oregon regarding reclassifying various pain disorders with Somatoform Disorders in the state's medical code system:

I wish to address the proposal to group Fibromyalgia and chronic pain disorders with Somatoform Disorders.  When a patient presents to the doctor with physical symptoms, including pain, there is nothing scientific about assuming that the patient has a mental health condition rather than a physical one, and that mental health treatment is appropriate.  Cursory testing does not rule out the presence of a physical condition.  Many legitimate physical conditions aren't correctly diagnosed for many years, and may be misdiagnosed many times in the process.  For example, on average a person with celiac disease is properly diagnosed 8 years after first presenting to a doctor with symptoms.  During those 8 years, it can be said that no physical cause has been found for the patient's distress, but it makes no sense to say that they have a psychiatric condition that they are miraculously cured of when they are finally correctly diagnosed with celiac. 

The fact that there are simply so many physical conditions with a significant lag time between the time when a patient presents with complaints and accurate diagnosis should cast doubt on the usefulness and even the existence of actual somatoform disorders.  I lost count a long time ago of the number of cases I know of in which a person presented to the doctor with pain and other non-specific symptoms, was patronizingly dismissed and told to get counseling, eventually given pain meds, and then finally given testing only to be told that they have late stage cancer.  In a number of cases they were actually told "if only you'd come in sooner, we could have treated it".  Many of those people died.  It is also worth noting that new disorders are still being discovered, that medical testing is never 100% accurate, and there are over 7,000 rare diseases listed by the National Organization for Rare Diseases.

Somatoform Disorders are basically the updated name for "hysteria", an archaic concept based more on the misogynist ideas of it's time than any physical reality.  At that time, medicine was considered "scientific", but not exactly in the way we see it now- as a practice based on the sciences of biology and chemistry.  At that time, eugenics was considered science, and was deeply enmeshed in the theory and practice of medicine.  This historical reality has been swept under the rug, but the pseudoscience of eugenics still lingers in the medical practices of today- and I believe that the concept of "Somatoform Disorders" is one example.

The practice of medicine requires that patients be listened to and treated as the experts about life in their own bodies.  Treating them as misbehaving children, putting on a show for attention, has no place in a scientific practice.  I myself was subjected to this gaslighting and abuse for years while struggling to survive an illness which is life-threatening on a daily basis.  I was shamed and shunned until I myself arranged to have a tissue sample from a previous biopsy prepared by the lab that was storing it according to the instructions I got over the phone from the leading pathologist in the country for the disease that I knew I had, and then shipped to her hospital by Fed Ex.  Once she gave me the diagnosis, I was taken seriously and received more than 10 additional diagnoses. 

The delay in treating my medical condition, which I had been both laughed at and yelled at for daring to suggest I had, caused my condition to degenerate such that I have lived on life support since then.  At my lowest point, I was on oxygen, unable to eat and dependent on IV nutrition to survive, requiring continuous infusions of 2 medications, needed a central line which has resulted in 2 DVTs and 15 blood infections, was mostly bed bound, my back broken in 5 places, unable to take any pain meds and needed to undergo my surgeries without anesthesia, had skin cancer removed, had all of my teeth removed due to breakage, have had multiple heart attacks, and more.  There are many, many other people like me.  Most haven't survived.  You could say that "Somatoform Disorders" have a very high fatality rate- but not for the same reason that other deadly disorders do.  Please, it's the year 2024- isn't it time that our medical system reflected that?

This recent study shows examples of people with legitimate physical disease who were misdiagnosed with psychosomatic and psychiatric conditions, and the long-term harm it did them:
“I still can’t forget those words”: mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses
"Patient-reported psychosomatic and psychiatric (mis)diagnoses are associated with persisting adverse impacts in multiple domains including mental health, medical relationships, self-worth, and some healthcare behaviours. Health services and clinicians should consider these potential adverse impacts on patients and offer support to reduce any persisting negative impacts."

Mold-Induced Illness

(work in progress)

Significant exposure to mold and related organisms, usually prolonged, can cause a wide range of symptoms and conditions.  This is a common cause or exacerbating factor for MCAS.  Common symptoms of mold illness include fatigue, headaches, digestive problems, respiratory problems (including asthma and shortness-of-breath), cough, sore throat, allergies and reactions that look like allergies (such as sneezing, hives, rashes), excessive thirst, muscle cramps, joint pain, stiffness in the morning, sleep problems, night sweats, brain fog and related cognitive issues (such as problems with memory and executive function), light sensitivity, blurred vision,  numbness, tingling, and tremors.

Mold illness can be diagnosed as many things, including- ME/CFS, Fibromyalgia, MS, Somatization disorders, anxiety, depression, PTSD, ADHD, dementia, Irritable Bowel Syndrome, and more.  That is to say that you may meet criteria for one or more of these diagnoses, but mold exposure is the reason that you have the symptoms in the first place.  For some people, treating and healing from the mold illness allows them to heal and lose the diagnosis.  Whether or not they "actually had" the illness then becomes a semantic issue rather than a scientific one.

The Basics of Mold Illness and Toxicity
Mold Toxicity - Depression, Anxiety, Fatigue, Brain Fog & Inattention 
Mold "can contribute to Pyrrole Disorder due the stress it puts on the body.  It can lead to elevated copper by overwhelming one of the antioxidants in the body that regulates copper.  Because it interferes with the immune system, it can lead to a susceptibility to candida/yeast, Lyme and its co-infections.  It also frequently worsens mast cell activation."

Mold can thrive in water damaged buildings or anywhere indoors where there is retained moisture, including AC units and ductwork.  The mold thrives because it has the ideal conditions for growth and because it doesn't have the competition that keeps it in check outdoors.  Additionally, mold spores and toxins build up inside without the natural ventilation that exists outside.  Mold can poison us with toxins and it can also colonize our bodies, such as our sinuses and GI tract.  Some people also have mold allergy.

"Seemingly 25% of people are unable to make antibodies to mold toxins. Add to that the 50% of buildings that have water damage, and you have a lot of people who are unknowingly becoming toxic while spending time in affected homes, schools, workplaces, cars, dorms, and nurseries."

"Mold toxins basically go from the body, to the liver and gallbladder where they are bound to bile and sent out into the gastrointestinal tract. The bile, however, is recycled (as a means of conservation), and thus take toxins back into the body."  

Some of the symptoms that she lists that I don't see listed often include: electric shock sensations, ice-pick pains, Atypical Parkinson's Disease, Atypical ALS, Psychogenic seizures or pseudo-seizures​​, Tics, spasms and seizure like events; Sensitivity to light touch, Suspected or Diagnosed PANS/Pediatric Acute-Onset Neuropsychiatric Syndrome, Rapid weight gain, Body temperature dysregulation, and diagnosis of fibromyalgia, or chronic fatigue.  
Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome
"Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection."

Most doctors who specialize in mold illness use urinary mycotoxin testing to figure out which mycotoxins a patient is dealing with, as treatment consists largely of the use of binders and different ones bind different toxins  

Comprehensive Guide to Mycotoxin Binders

MCAS & Mold: Fungal Colonization of the Sinuses (video)

Mold often co-occurs with other organisms, such as bacteria, in water-damaged buildings.
Aerobic Actinomycetes of Clinical Significance

CIRS (Chronic Inflammatory Response Syndrome)
There is another condition called CIRS (Chronic Inflammatory Response Syndrome) which seems to me to be essentially another name for MCAS, but was recognized and described without as thorough an understanding of the underlying immunological mechanisms.  CIRS-WDB refers specifically to the condition when developed after prolonged exposure to the inside of water-damaged buildings.  According to this 2024 study, CIRS is "an acquired medical condition characterized by innate immune dysregulation following respiratory exposure to water-damaged buildings (WDB).", and states that ME/CFS is "a common misdiagnosis of CIRS".  MedicineNet gives a more detailed description of CIRS "a multisystem and multi-symptom illness that occurs when a person gets exposed to toxins such as mold spores or biotoxins found in tick or spider bites. These toxins get attached to the immune system to trigger an inflammatory response and induce hormonal changes. The immune system produces an excess of cytokines that can lead to the immune system attacking its tissues, causing inflammation and other associated symptoms."  This source further defines biotoxins as "fat-soluble molecules that travel from cell to cell without entering the bloodstream" and further states that "measuring biotoxins in the blood is difficult, but doctors usually identify them by the damage inflicted on various organs."

According to Dr Shoemaker, there are some HLA-DR/DQ haplotypes (combinations of genes that are inherited together) that make a person less able to clear biotoxins, such as mold toxins, from their bodies, making them more likely to develop CIRS when exposed to mold, which then cause the innate immune system to overreact and lead to chronic inflammation.  These include:
HLA-DR4-3-53
HLA-DR7-2/3-53
HLA-DR11-3-52B
HLA-DR13-6-52A/B/C
HLA-DR17-2-52B
HLA-DR18-4-52A

Diagnostic Process for Chronic Inflammatory Response Syndrome (CIRS): A Consensus Statement
Report of the Consensus Committee of Surviving Mold
"Clinical management of patients with a complex, multisystem, multi-symptom illness identified as a chronic inflammatory response syndrome (CIRS) has expanded. Often associated with illness due to exposure to low molecular weight biotoxins and inflammagens found (i) inside water-damaged buildings (WDB); (ii) following exposure to blooms of cyanobacteria; (iii) following consumption of ciguatoxic fish; and (iv) following confirmed acute Lyme disease, persistent despite reasonable use of antibiotics, CIRS is increasingly recognized. A need for a formal case definition and case management protocol has arisen. Patients with CIRS will have abnormalities in innate responses, reduced levels of
regulatory neuropeptides MSH and VIP, elevated inflammatory markers of C4a, MMP9 and TGF beta-1.  Systemic illness, based on abnormal gene activation and suppression, as shown by RNA Seq and transcriptomics, requires a multi-factorial, rigorous diagnostic assessment to assist in both differential diagnosis and monitoring response to therapy. A consensus statement is herein provided to assist practitioners in case identification and management."

Chronic inflammatory response syndrome: a review of the evidence of clinical efficacy of treatment

Dr. Scott McMahon, a board-certified pediatrician and CIRS specialist (Podcast)

Treatment for Mold Illness
The Shoemaker Protocol is widely recognized as the best treatment for mold-induced illness, whether or not you call it CIRS.  

Doctors who specialize in treating people with mold-induced illness tend to use urinary mycotoxin testing to identify which mycotoxins a person is dealing with, and prescribe substances that bind and remove those specific toxins as part of the treatment protocol.  Examples of binders include bentonite clay, activated charcoal, chlorella, cholestyramine, and colesevelam HCI. 

Finding and Remediating Mold in Your Environment
Consensus Statement for Microbial Remediation 2020
(Indoor Environmental Professional Panel of Surviving Mold)

Dr Jill Carnahan is considered by many to be an authority on cleaning mold and mold remediation.  This page from her website has the basics:
How to Get Rid of Mold – Definitive Mold Removal Guide

"Michael Rubino provides valuable resources and professional guidance on safely addressing mold issues in your home. His website offers detailed information on proper mold cleaning techniques, prevention, and the importance of air quality in maintaining a healthy living environment."

This is information given to me by someone with specialized knowledge of building materials:
"MDF is Medium-Density Fiberboard. There is also OSB, or Oriented Strand Board, and there are number of other building products like particle board made with the tailings or trash from milling lumber, held together by resins. The wood millings are damp from cutting, lay around in damp piles, and develop mold. The mold in this wood is fed by the resins used to make it into building materials. The paper backing on drywall has the same issue. I understand that there is now third-party certified mold-free OSB and MDF made differently."

ImmunoLytics swab tests

Resources Regarding Mold and Mold Illness:
Dr Ritchie Shoemaker's "Surviving Mold" website

International Society For Environmentally Acquired Illnesses / ISEAI website

American Academy for Environmental Medicine 
(database of practitioners who treat environmentally acquired illnesses including mold)

Dr Neil Nathan, MD is an expert in mold illness.  This book from him is highly regarded:
Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness

Dr Jill Crista, ND is a highly respected mold doctor.  "Dr. Jill focuses on conditions that cause injury to the brain and nervous system, including mold, PANS/PANDAS, Lyme disease, and concussion."
Dr Jill Crista online courses about mold 

Dr. Efrat Lamandre focuses on integrative and functional medicine, offering solutions for mold toxicity, chronic illnesses, and environmental health issues. Her practice emphasizes a holistic approach to diagnosing and treating mold-related conditions. Her website provides information and support for those navigating mold toxicity and other environmental health concerns.
Toxic Overload and Chronic Illness: How Mold, Plastics and Pesticides Make You Sick

#moldfinders: RADIO (Podcast)
Mold expert Brian Karr shares his secrets on how to find and remove mold and mycotoxins from your home,

The Virginia Center for Health and Wellness (has video series from Dr Andrew Heyman 

National Institute of Environmental Health Sciences Mold Information

CDC Information About Mold 

EPA Information About Mold

RealTime Laboratories, Inc. (RTL)
"RealTime Laboratories, Inc. (RTL) is a CAP and CLIA accredited clinical and environmental diagnostic laboratory that specializes in testing for and identifying hazardous mold, toxins, and infectious diseases."  They have a free e-book called:
Mycotoxins 101: An Introduction to Crucial Facts

MyMycoLab provides mycotoxin testing

Mold prevention strategies and possible health effects in the aftermath of hurricanes and major floods

The Hidden Connection: COVID, Mold Exposure, and Viral Reactivation 

A comprehensive review of mold research literature from 2011 - 2018

Legal Resources
Well.Law is a legal practice that understands the complexities of mold-related and environmental illness cases. They support clients navigating housing issues, disability rights, and toxic exposure with compassion and legal expertise. She started the personal injury firm she couldn't find.

How to get the most insurance money for mold remediation
"Learn the secrets insurance companies don’t want you to know that will maximize your insurance coverage amount."

Mold Insurance Playbook with Corey Levy (Podcast)
"It can be really expensive... But what if you didn’t have to pay full price for remediation? That’d be awesome! Today we share our entire playbook on how to maximize your coverage! Here is the quick overview... and we go in depth on each one of these in the episode: 1) DON’T CALL YOUR INSURANCE COMPANY! 2) STOP the water 3) Mold Inspection 4) Get Remediation Bids 5) Hire a public adjuster 6) Now you can contact your insurance company... If you go out of order you can literally cost yourselves tens of 1,000s of dollars!"

Inflammation and Mast Cell Activation Syndrome

Inflammation and mast cell activation syndrome
(My notes for an interview by Dr John Campbell with Dr Tina Peers)

She learned about MCAS because her daughter suffered terribly with eczema and other symptoms that a doctor identified as Histamine Intolerance and MCAS, and treatment made a huge difference for her.  Dr Peers then began recognizing the syndrome in many of her own patients and providing them with answers, many of whom had given up on ever understanding their various chronic health issues.  Her basic level guidance is for patients to take anti-histamines (blocking both H1 and H2 receptors), supplements including vitamin C (for its anti-histamine property), and following a low histamine diet. 

The world leader in mast cell disease research is Dr Molderings at Bonn University.  Mast cell diseases aren't taught in medical school so it's up to patients to tell their doctors about it if they have it.  There are 2 conditions- Histamine Intolerance, which occurs when a patient doesn't produce enough diamine oxidase (an enzyme in our stomachs that reduces the amount of histamine in our food), and MCAS, which is when a person's mast cells release too much histamine too easily.  Most of her MCAS patients are also diamine oxidase deficient (leading to increased absorption of histamine from food) so they get a "double whammy".  In the medical literature, the incidence of Histamine Intolerance is approx 3-5%, but the incidence of MCAS is between 17-20% (According to Dr Molderings). 

She also does genetic testing with her patients to look at their methylation markers and their histamine metabolism- she finds that her MCAS patients rarely have normal diamine oxidase production (the enzyme that breaks down histamine in the gut) and tend to have KIT gene mutations (the genes involved in coding for mast cells).  There are 50 known variations of KIT genes.  Symptoms and syndromes she ties to MCAS include eczema, rosacea, Chronic Fatigue Syndrome (ME/CFS), migraine and other headaches, rash, urticaria, psoriasis, IBS, diarrhea, fibromyalgia, other joint problems, bloating, nausea and vomiting, interstitial cystitis, POTS, and are hypermobile.  She says 80% of MCAS patients are hypermobile (may have EDS) and 80% are female, and 30% have interstitial cystitis. 

Dr Campbell gives a simple overview of mast cells- they are a type of white blood cell that resides in tissue rather than circulating.  They trigger an inflammatory process when we want them to, including heat, pain, redness and swelling, which brings increased blood supply and nutrients to a damaged or infected area to help the healing process.  Mast cells store histamine to release when needed, but they also store another 1,000 cytokines.  They are concentrated in areas where our bodies are in contact with the outside world including our skin, lining the nasal passages, sinus passages, and respiratory system, they line the entire GI tract, they line the urogenital tract; she compares them to bouncers at a club who are just inside the door to stop "undesirables" from coming in.  

In MCAS they become overzealous and pick a fight with all sorts of things, sometimes almost anything, that they come in contact with.  When they react (degranulate), they release one or some or many of these different cytokines (often called mediators) and in various combinations, and they can release 350 chemokines which pass messages to other mast cells to join the reaction (this is how you get systemic reactions aka anaphylaxis).  Mast cells also line our nerves, and histamine is also a neurotransmitter.  Mast cells in the stomach (chromogranin cells) release stomach acid.  Histamine plays essential roles in the body, but we need it to be carefully regulated so that we have only what we need, where we need it, and for how long we need it.  

MCAS patients have excessive histamine lingering, as well as other chemicals that can cause bruising (heparin), elastase 2 causes membranes to break down, clotting factors contributing to clot formation.  There is always inflammation and there may or may not be allergic-type reactions, including anaphylaxis, and dystrophisms which are formations of new tissue (abnormal tissue growth).  Examples include cysts, often in the breast and pancreas (can also include skin tags, scar tissue, and fibroids).  MCAS patients can also have poor wound healing.  The symptoms a person experiences will correspond with where the over-reactive mast cells are concentrated, such as asthma occurring in people with abnormal mast cells in the lungs (in these cases inhalers may not work because the mechanism is different).  For people with concentrations of mast cells in their skin, things as simple as their clothes rubbing on their skin or pressure from waistbands can cause itching and rashes or bruising.

Dr Campbell asks, given the enormous variation in presentation, how do you suspect and diagnose MCAS?  Dr Peer responds that you recognize patterns of inflammatory symptoms, they often have sensitivities including to things touching skin such as tags, as well as a very heightened sense of smell and aversion to bright lights and loud noises.  You also have to consider what other conditions might also produce the pattern of symptoms the patient is presenting with.  Testing for cytokines can help but need to be developed more.  The more the mast cells are triggered, the more sensitive the person can become over time.  Infections can make MCAS worse.  She says there is "consensus 1" criteria, which requires a positive blood test for specific markers and rules out many people, and "consesnsus 2" criteria that don't require the blood test. Instead, consensus 2 says that if the provider has a reasonable suspicion of MCAS that they can try some of the basic treatments and lifestyle changes, including some basic medications, and if the patient improves significantly, it can be inferred that they do have MCAS.  

There is a website called "what the bleep can I eat .com" that has a good list of histamine levels in foods.  It's worth noting that there is a lot of innacurate information online about histamine levels in foods.  The site lists about 200 foods that have no, or very low histamine levels.  Some of the very high histamine foods include tomatoes, bananas, avocados, spinach, gluten, tea and coffee, green tea, alcohol, chocolate (the last 3 also block diamine oxidase production).  Processed foods tend to be high in histamine, as well as leftovers (anything being re-heated or left around for awhile) because bacteria present on foods converts the amino acid histidine to histamine.  You can think of a "histamine bucket" in the sense that it takes a certain amount of exposure to add up to the level that triggers a reaction, so a person may get away with a food one day but not another day.  

A person can take diamine oxidase supplements when eating to help reduce the histamine load (DAO supplements)- as an aside, these often contain ingredients that are problematic for MCAS people so be careful with them.  Pea shoots have a high level of diamine oxidase and eating some of them before a meal can also help.  In the big picture MCAS people do best on a ketogenic or paleo diet, with fewer carbohydrates, because these diets are so anti-inflammatory.  In addition to dietary changes, some supplements help, including vitamin C which has anti-histamine and antibiotic properties, and is anti-inflammatory.  Vitamin D with K2 is also important, as is magnesium, CoQ10, l-carnitine (acetyl), and iodine, things to support the mitochondria.  

MCAS people get mitochondrial dysfunction which then limits energy production.  Our cells have thousands of mitochondria in each one- our mitochondria produce 70-80kg of ATP every day (this is because as soon as we make it, it's gone, so it's made at a high frequency). Our mitochondria are 32% of our body weight.  Our heart has the highest density of them, and then the liver.  The post-exertional malaise, the hallmark symptom of ME, is due to mitochondrial dysfunction such that they can't produce ATP at the rate the person's body needs it.  Most of us (in the UK and America?) have low iodine levels in our bodies.  Iodine is important for the glands, including breast, thyroid, thymus, and prostate.  She instructs her patients to take 2 to 3 drops of Lugol's 15% before bed, in water.  It supports mitochondria but it also keep the upper gut sterile, which it should be.  Seaweed is a good food source, surprisingly, fish does not.  

So much inflammation comes from the gut, there are so many mast cells in the gut.  Getting the inflammation in the gut under control is a really important part of getting MCAS under control and managed because the inflammation in the gut spreads to other parts of the body.  As an aside, Dr Campbell mentions that an oncologist he knows has told him that a lot of cancer seems to come from chronic inflammation, including the gut, and that iodine supplementation can reduce the chances of developing cancer.  Mitochondrial dysfunction also seems to be critical in getting cancer, because it's the mitochondria that signal cell death when a cell has mutated and is growing out of control.  Inflammation in the gut leads to leaky gut, which means that whole proteins can get into the bloodstream instead of their breakdown products, amino acids.  Inappropriate proteins in the bloodstream wreak havoc, including triggering allergies.  

The lining of the gut is only one cell thick, and their are mast cells directly behind those cells.  If the mast cells swell, they can cause cracks to form between the cells lining the gut (leaky gut).  The first 20 feet of our guts are supposed to be sterile, but since our modern diets include sugar, dairy, and some other things, bacteria that should be killed are instead being fed and multiplying, and causing inflammation.  Eliminating all sugars and refined carbohydrates would be best for most people, but people with MCAS should be low-histamine ketogenic.  Sugars and carbs are addictive- instant gratification.  We want a microbiome, but it should be in the colon.  Taking iodine won't affect that part of the gut.  Eating in season when possible.  You can break the addiction to sugar in 2 weeks- there is a gene that switches off.  Good probiotics help.

Figuring out a medication regime for each person is a slow process of trial and error.  She suggests starting with the over-the-counter anti-histamines, one at a time, in higher doses than on the box.  Once you've found one that works, add in famotidine, which is an anti-histamine for H2 receptors (mostly in the gut, but also in the heart and brain).  After that, mast cell stabilizers are added.  Quercetin at 500mg 3x a day is easy because it's available OTC.  Prescription meds in this category include Ketotifen (in America this has to be compounded because there is no commercial version for oral use), working up to 1mg at night.  If that doesn't help, there is Rupatidine- people take one or the other.  The third medication is Gastrocrom (cromolyn sodium), that stays in the gut.  MCAS with IBS symptoms tend to do well on Gastrocrom.  Each patient takes their own cocktail of medications and treatments.  LDN (Low Dose Naltrexone) is very helpful for many people with MCAS.  

Dr Peet is also using medicinal mushrooms for their immunomodulatory capabilities, to help calm the mast cells.  She emphasizes that the mushrooms must be very high quality.  Mushrooms themselves are high in histamine, but extracts can be made that leave the histamine behind.  The sunshine mushroom is a mast cell stabilizer, reducing histamine and cytokine release from mast cells.  She recommends the company Hefasta Terra, a Spanish company- their products are organic and tested, no fillers, and they grow the mushrooms themselves.  They also do clinical research.  She recommends Myco Sol (sunshine mushroom) and Myco 5, which contains sunshine mushroom, reishi (balances hormones, lowers anxiety, improves sleep, anti-inflammatory, analgesic), chaga (kills cancer cells), shiitake and mistake (treats mycotoxins).  Lion's Mane mushroom crosses the blood-brain-barrier and can stimulate growth of neurons.

Mast cells can live for 2 to 4 years- some are replaced sooner, but it can take patience to heal from severe MCAS for this reason.  New mast cells can become over-reactive when they enter tissues where the existing mast cells are already edgy, this can perpetuate the problem.  Dr Peet says that CIRS (Chronic Inflammatory Response Syndrome) from mold can co-occur with mast cells and can look nearly identical to MCAS but she implies that it needs to be considered separately.  Lyme Disease and Epstein-Barr (HHV-5) can also be very similar.  She says you don't want to miss any of those if they are comorbid with the MCAS.  

Tryptase is an enzyme that is released by mast cells when they degranulate under certain circumstances, and is the source of a great deal of controversy in the MCAS world.  In 2012, a consensus statement (consensus statement 1) was put out by some of the doctors and researchers who had been working on mast cells stating that there needed to be an elevation in serum tryptase for MCAS to be diagnosed.  The year before that, another statement (consensus statement 2) had been put out by about 40 of the doctors and researchers working in the field who made a broader definition of MCAS that was based on the patients they were seeing which was more flexible in its diagnostic criteria.  The authors of consensus statement 2 argued that in many parts of the world, it's not always possible to get a serum tryptase level measured, and they noted that many patients who they were treating with success didn't have elevated serum tryptase levels anyway.  Statement 1 excludes many people with the profile of MCAS and denies them treatment.  Many people feel that if the treatment works, that is good evidence that MCAS is present.

Metabolic and Mental Health

 What are Metabolism and Metabolic Health, and How Do They Impact Mental Health?
"Metabolism is the set of life-sustaining chemical reactions in organisms.  The three main things that metabolism does is convert the energy in food to energy that is available to power the cell and therefore the organism, the conversion of elements in food into the building blocks to make proteins, lipids, nucleic acids and carbohydrates, and the elimination of metabolic waste.   Another definition of metabolism is "all the physical and chemical processes in the body that convert or use energy".  Metabolism is how we use our food to create energy.  If we consume more calories then we need we need to store the excess energy.  We store some as glycogen in the liver, but most is stored in our fat cells.  It makes sense that our bodies would have evolved with uncertainty about when we would have food and how much we would have, so we would have needed to store up excess for times when we didn't have enough.  

Metabolic dysfunction usually results from too much food intake or eating foods with a poor ratio of nutrients to calories.  If we consistently eat more calories/energy than we need, our bodies first store the excess in our fat cells but they eventually get full, and then we store fat in our organs, called visceral fat (such as fatty liver). Visceral fat interferes with the function of the organ in question and leads to disease states such as type 2 diabetes.  We need to have low levels of insulin in order to access and use the energy stored in fat.  Insulin levels rise when we eat, especially if we eat sugars and simple carbs.  When our insulin levels are high this signals our body to store energy because we have plenty for now.  The state of having high insulin levels from frequent eating is called hyperinsulinemia.  If the state of hyperinsulinemia persists our cells become less responsive to insulin, producing a state called insulin resistance.  This means too much sugar stays in the blood and not enough is available for energy use.

There can also be a connection between mental health and the gut microbiome.
Never fear, the gut bacteria are here: Estrogen and gut microbiome-brain axis interactions in fear extinction

Mitochondria and Mental Health

Brain Energy, Mitochondria, and Mental Health
Dr Chris Palmer, MD, Harvard Psychiatrist

A major change in psychiatry has been going on for awhile now in which more and more clinicians and researchers are recognizing mental health disorders as related to, and sometimes caused by, physical states in the body and therefore using therapies that are meant to address these states.  A primary example of this is looking at brain metabolism (mitochondrial function in the brain).

The Keto diet is a 100 year old, evidence based therapy that can stop seizures that medication can't stop.  This is evidence of how powerful nutrition and diet can be in treating and altering brain function.  Psychiatrists use epilepsy medications to treat people with other mental mental health conditions often, usually off-label, so there's nothing new about using the ketogenic diet to treat other mental health conditions.  Seizure meds are used to treat dementia, eating disorders, anxiety, psychosis, mood disorders, substance use disorders, and others.  

The Brain Energy Theory- Mitochondria do more than just produce energy for cells "mitochondria play a role in directing and allocating resources for cells".  Not all of the food that mitochondria in the brain process is turned into ATP- some is turned into serotonin, dopamine, or cortisol, and they also play a part in regulating those molecules.  Mitochondrial function is one way of understanding the imbalances of the neurotransmitters and hormones in the brain.  They are also involved in regulating inflammation (turning it both on and off) and epigenetics by signaling the nucleus of the cell to regulate the transcription of gene.  They monitor our outer and inner environment; sensing stress levels, food intake, blood sugar levels, and oxygen levels.  

"Mitochondria play a role in our response to trauma- psychological and social stressors."  Trauma and stressors play a role in mental illness, so this connection could be very significant, because while people have known that there is a connection they haven't known exactly what that connection is on a biological level.  He points out that mitochondria seem to be a way to "connect the dots" in the mental health puzzle between factors like trauma, neurotransmitters, sleep, substances like drugs and alcohol (I would add exercise and sunlight too).  These are all things that affect mitochondrial and metabolic health or are affected by it or both.  People with mental health conditions have higher rates of many physical disorders including diabetes, obesity, heart attacks, strokes, and generally have a shorter life expectancy.  This connection also opens up the possibility of more and better treatments.

For people who struggle to believe this connection is real, he explains that mitochondria are what drives metabolism, which is how we take food and oxygen and transform them to keep ourselves alive.  If these processes are disturbed it means illness, and if they are disturbed enough or stop, we die.  Most poisons work by harming mitochondria- that's how they harm or kill you.  Other cellular components can be harmed without nearly as much danger to the organism.  It makes sense that since mitochondria are the most important part of the cell and what keeps it able to perform its function, if they aren't functioning right the cell won't be able to function right.  

Mitochondria can become both under-active AND overactive.  This makes sense because there are mental health disorders involving areas of the brain becoming overactive as well as areas becoming under-active.  If the health of mitochondria impacting the cell's functioning is the cause or major contributing factor to many mental health disorders that would explain why they can be better or worse at different times of day (or different seasons), why they can be worsened by stress and sleep deprivation.  A lot of the details aren't known yet but already the basic insight that mitochondria are central to mental health is transformative of the fields of psychiatry and psychology.

What options are available to support mitochondrial functioning?

There are a huge variety of things available to help mito function including sun exposure, red light therapy, various supplements, glutathione, methylene blue, and more, but these can only help so much if core lifestyle issues aren't addressed.  For example, alcohol is a potent mito toxin so a person drinking a large amount daily is poisoning their mitochondria far beyond what those things can help.  Having healthy mitochondria requires lifestyle changes- eating well and avoiding highly processed foods, sleeping well, exercising, and avoiding excess stress.  

The ketogenic diet and its effect on brain function has been studied for a long time, its known to change neurotransmitter levels, inflammation, the gut microbiome, but Dr Palmer says that he believes the impact it has on mitochondria is its most important therapeutic effect.  The keto diet creates a state in the body similar to fasting, which is known to trigger mitophagy (when the cell breaks down old and defective mitochondria that are replaced by new, healthy ones) and mitogenesis (which is the production of new, healthy mitochondria).  Dr Palmer suggests that these two processes that remove old, defective mitochondria and replace them with more and healthier ones, might lead to long-term healing where a person could potentially go off the keto diet and remain healthy.  People who are on the diet to control seizures will usually be kept on the diet for 2 to 5 years after the point at which their seizures completely stop (some people with seizures must stay on keto for life).  People can experience improvement of mental health symptoms, even very significant improvement or remission in weeks or months.  Psychotic symptoms tend to take weeks if not months to improve especially if severe.  People often wonder if making some changes in their diet, such as eating more fatty fish, will be enough.  Dr Palmer says maybe for people with relatively mild symptoms or conditions, some changes such as eating more fatty fish can help, but he points out that those changes don't stop seizures but the keto diet does, he says  "ketogenic therapy is a unique and powerful intervention".

What about other interventions to support mito health?

Exercise is a really important factor also and should be part of a treatment plan.  The two types of exercise for which there is the most evidence of benefit for mito health are strength training (aka lifting weights, working out to build muscle) and level 2 cardio (which he defines as 3-60 minutes of running, cycling, etc that gets you breathing hard but not out of breath).  Those types of exercise increase the number and health of mitochondria in muscles which then send endocrine signals to your brain that improve brain function.  Exercise alone isn't enough to heal mito, lose weight, or heal type 2 diabetes.  If people exercise more but don't change how they eat they don't get significant or sustained weight loss.  There has been one very well-done study of middle-aged adults who were prescribed exercise.  In addition, half were given the drug metformin to take and the other half were given a placebo.  The group that got metformin didn't get the mito and metabolic benefits of exercise the way the other group did, which is evidence that metformin interferes somehow with mitochondrial biogenesis.  Many other medications, including many psych meds, are known to interfere in mito function and biogenesis, so this should be considered.  Lifestyle behaviors such as drinking alcohol and smoking cigarettes and marijuana are also mito toxins.  

The psych drugs that can do this are mostly the anti-psychotics, which have been known to have metabolic side-effects and neurological side effects.  They can cause significant weight gain (he has seen people gain as much as 100 pounds in 6 months), they can cause type 2 diabetes, they worsen every known risk factor for cardiovascular disease (raise blood pressure, raise triglycerides, worsen LDL levels), and increase inflammatory biomarkers.  

This represents a new way to understand mental illness and what might be happening in the brain, and a new way to treat it.  This is especially important as mental health remains highly stigmatized in the US and research around it receives very little funding in comparison to disorders considered to be physical.  Many mentally ill people are in prisons, shelters, or even on the street.  "There is tremendous injustice, in my mind, in how we treat people with mental illness".  Dr Palmer points out that while psychological and social factors play a role in mental illness, it's no less physical and "real" in that way.  People with mental illness "deserve medically necessary treatment".  If we can get needed care to people in prison or who are homeless and who have mental illness, they won't be in prison or homeless anymore, they can live enjoyable, productive lives. 

 

 

 

 

 

 

Advocacy and Support Organizations

American Partnership for Eosinophilic Disorders (APFED) Working diligently to advocate for increased funding, state and federal legislation, and medical coding to benefit those affected by eosinophilic disease 

American Porphyria Foundation

Mast Cell Action was founded in 2016 to offer support to the mast cell disease community, their families, doctors and researchers. To raise awareness of disorders resulting from mast cell activation, increase vital research in this area and strive for better diagnostics and treatment.

 

The Mastocytosis Society is a non-profit organization dedicated to supporting patients affected by Mastocytosis and Mast Cell Activation Disorders as well as their families, caregivers and physicians through research, education and advocacy.

MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease.

MPN (Myeloproliferative Neoplasms) Research Foundation 

The Oley Foundation Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.

PACIFHAN (Patient Organizations for Chronic Intestinal Failure and Home Artificial Nutrition)
To work together to promote the international sharing of information and resources to improve the quality of life of Home Artificial Nutrition patients.

National Organization for Albinism and Hypopigmentation (NOAH)

National Organization for Rare Disorders (NORD)

The Ehlers-Danlos Society

Trauma Research Foundation

 

Change the Air Foundation
Dedicated to increasing awareness and research regarding the negative health impacts of indoor air quality, often as a result of water damage and mold.

 

 

Dysautonomia Foundation, Inc.

Digestive Disease National Coalition

Adrenal Insufficiency United

Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT)

Immune Deficiency Foundation

International Foundation for Functional Gastrointestinal Disorders

Kyphoscoliotic Heart Disease

American Porphyria Foundation

American Thoracic Society

American Society of Gene & Cell Therapy (ASGCT)

Daybreak Children's Rare Disease Fund

Family Caregiver Alliance

Healing Hugs Haven LLC

Hermansky-Pudlak Syndrome Network

Hope for Hypothalamic Hamartomas

 The Myelin Project

Myocarditis Foundation

 

Rare and Undiagnosed Network (RUN)

Spinal CSF Leak Foundation

Vasculitis Foundation

Wilhelm Foundation - the Undiagnosed

Worldwide Syringomyelia & Chiari Task Force

Research!America