CIRS
Chronic Inflammatory Response Syndrome
I am not an expert on CIRS. This page is simply a collection of resources I have gathered since my diagnosis with CIRS.
CIRS is real. Illness from water-damaged buildings and related toxins is real. Clorox is not the solution. Not everyone is susceptible.
Chronic Inflammatory Response Syndrome (CIRS) AKA biotoxin illness is as it sounds: a chronic inflammatory response by your body to exposure of particular toxins. This is not a mold illness but if a genetically-suspectable person is exposed to a water damaged building they may develop CIRS. Chronic inflammatory responses may also be triggered by Lyme-carrying ticks, exposure to harmful algae blooms (HABs) or consuming shellfish exposed to the bloom, brown recluse spider bites and ciguatera infected fish (another toxic marine micro algae).
This is a multi-system, multi-symptom illness.
The symptoms are random and non-specific and generally lead to incomplete or mis-diagnosis. Here are some of the symptoms:
Fatigue, Weakness, Aches, Muscle Cramps, Unusual Pain, Ice Pick Pain, Headache, Light Sensitivity, Red Eyes, Blurred Vision, Tearing, Sinus Problems, Cough, Shortness of Breath, Abdominal Pain, Diarrhea, Joint Pain, Morning Stiffness, Memory Issues, Focus/Concentration Issues, Word Recollection Issues, Decreased Learning of New Knowledge, Confusion, Disorientation, Skin Sensitivity, Mood Swings, Appetite Swings, Sweats (especially night sweats), Temperature Regulation or Dysregulation Problems, Excessive Thirst, Increased Urination, Static Shocks, Numbness, Tingling, Vertigo, Metallic Taste, Tremors https://www.survivingmold.com/resources-for-patients/mold-symptoms
As you can see, the symptoms are similar to many other conditions and hence the misdiagnosis.
Not everyone who comes in contact with mold will develop CIRS, most people process mold and other biotoxins just fine. Only about 24% of the population is genetically-susceptible to mold. That said, there are many, many buildings that have water damage. If you do an internet search on water-damaged buildings in the US, results show a range from 10% to over 50% based on varying criteria.
So, what to do?
If you have symptoms that do not lead to a conclusive diagnosis and are ongoing and/or have been exposed to mold, harmful algae blooms, fish or shellfish from a bloom, or been bitten by a tick or brown recluse, seek help. This is a real situation.
A quick and easy first step is to take the Visual Contrast Sensitivity test. The questionnaire and test are an inexpensive way to help determine if you might be suffering from CIRS or mold/biotoxin illness. Go here for the details:
https://www.survivingmold.com/resources-for-patients/diagnosis/visual-contrast-sensitivity-vcs
Next, find a healthcare provider certified in the Shoemaker Protocol or has proven expertise in CIRS. Remember, CIRS is a multi-system, multi-symptom condition. Richie Shoemaker, MD identified 13 symptom clusters as part of his protocol for treating CIRS. If a person must have at least one symptom in at least 6 of the 13 symptom clusters, there is a high probability of CIRS. Look here for providers:
https://iseai.org/physician-list/
https://www.survivingmold.com/shoemaker-protocol/list-of-certified-practitioners
https://drdorninger.com/ (full disclosure, I do nutrition consultations for Roots & Branches)
These sites have many excellent resources:
Helpful Videos:
https://www.cirsx.com/patient-resources
Mold Illness – Overview of the Biotoxin Pathway with Dr Eric Dorninger
Mold and Mood by Dr Eric Dorninger
Podcasts: https://drdorninger.com/media/
“Is Your Building Making You Sick” – page 1
“The Fungus Among us” – page 3
Websites:
Books:
Mold Illness: Surviving and Thriving: A Recovery Manual for Patients & Families Impacted By CIRS by Paula Vetter, Laurie Rossie, and Cindy Edwards is an incredible resource for navigating CIRS. Available on Amazon or online at https://store.bookbaby.com/book/Mold-Illness-Surviving-and-Thriving
Prescriptions For A Healthy Home by John Banta Available on Amazon or online at https://www.johncbanta.com/publications
Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness by Neil Nathan, MD. Available at https://neilnathanmd.com/about-me/
Experts:
There are many experts that use proven, up to date methods and there are many people that mean well but use outdated or unproven methods. Please research and read. Clorox or any other “mold killer” is not the solution. Dead mold and mycotoxins can still cause an issue.
Below are a few resources that I have found to be invaluable.
Bill Webber is general contractor who is an expert on indoor environmental quality and remediation https://avelar.net
John Banta is an environmental mold specialist and an expert in reviewing tests and cleaning
RestCon Environmental provides indoor air quality investigations and this is also the site to schedule a consultation with John Banta https://restconenvironmental.com/
Mold Inspection Sciences (SF bay area, Boulder CO and more locations) https://www.moldsci.com/
Testing:
Start with the Mold Testing Guide found here
As you can see from the guide are a number of ways to go about this. I highly recommend working with an expert to have your home inspected prior to testing so as to avoid tests that are not useful or complete. Below are three types of potential toxins that can be tested for:
Mold and Mycotoxins (toxins produced by mold and other fungi) – There are many, many types both indoors and out. Our environments will never be completely free of mold and mycotoxins but we can clean to an acceptable level to promote healing and health. Experts know which molds are toxic and their general characteristics. For example, some molds are air-borne while others sit low to the ground. If you only do air testing, there is a chance you get a false negative.
Endotoxins – The most common routes of endotoxin exposure are through inhalation, or through intestinal tract absorption through food or water. Elevated airborne concentrations are prevalent in swine operations, cotton textile mills, poultry houses and in water damaged and flood contaminated buildings. Buildings with sewer issues may also be a source.
Actinobacteria or Actinomycetes – Actinobacteria are potential inducers of inflammatory response throughout the body. They are easily housed in the lungs and on skin of humans and animals. Most actino are hydrophobic and many form biofilms making them difficult to eradicate. The shedding of the bacteria from the skin continually reseeds the environment. Unlike mold (which is not hosted by human and animal skin and does not lead to reseeding) it is not sufficient to simply clean the environment; with actinobacteria the host source must also be cleared to end the reseeding cycle. This is why testing for both mold and actinobacteria is required for a complete picture of how to proceed in the cleaning the environment.
Remediating and Whole House Cleaning
Steps vary from site to site and you will need to work with a professional to determine what needs to be done. There are many steps in the process depending on the damage. Get a clear and complete check list set up before you begin. Do not take shortcuts. Effective cleaning alone has 3-4 steps and if done correctly, it only needs to be done once before final testing. I am on my second round of cleaning and I am OK with this because I have learned so much – please learn from my mistakes.
Air Filters and Air Cleaning:
Great read: https://iseai.org/clean-indoor-air-on-a-budget/
Air Oasis iAdapt Air https://www.airoasis.com/shop/iadaptair/
TruSens https://www.trusens.com/air-treatment-education/choose-right-air-purifier/
Look for “True HEPA” filters which should be able to capture more than 99.97% of these particulates, down to 0.3 microns.
Keep the humidity down with a dehumidifier. You do not need anything special here, find one that works for your building size. If this is not going to have a dedicated drain line, be sure to find one that has an auto-shutoff. Also helpful is a “smart” device that lets you set the humidity you want the air at. I shoot for less than 50% and I use a separate humidity gauge to help me manage the air.
Hopefully the resources listed here will help you get started. Everyone is unique, we all respond differently to given situations. Just because “everyone else in the house is fine” does not mean you are and just because “everyone else is reacting” does not mean you will. If you are a loved one has symptoms and no solutions, investigate chronic inflammatory response syndrome. Get help. Be well.