(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
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."
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
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
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!"
