Your constant fatigue and strange array of symptoms could be caused by mold.
But there’s far more to mold illness than just mold.
Your symptoms could actually be caused by a mysterious illness known as Chronic Inflammatory Response Syndrome.
Regardless of who you are, if you are living or working in a moldy home or building, you’re going to experience symptoms. Continued exposure to high levels of mold will trigger symptoms. This is what is known as a mold allergy or mold illness.
Remove yourself from the source of mold and your symptoms should improve. But in some people, that just doesn’t seem to happen. Even after moving or remediating the source of mold, symptoms can persist. Sometimes these symptoms can be debilitating.
In such chronic cases, Chronic Inflammatory Response Syndrome (CIRS) is more likely than a mold allergy. CIRS could very well be what’s keeping you sick, tired, and in pain. And it could have occurred from a past mold exposure that you didn’t even know you had!
Do you have moldy genes?
Not everyone develops CIRS. You need to have the proper set of genes in order for a chronic inflammatory process to continue without reprieve in your body.
The genes in question are what is know as the HLA (human leukocyte antigen). More specifically, CIRS is related to the HLA-DR/DQ genes. The alleles most important for chronic illness expression include DRB1, DQ, DRB3, DRB4, and DRB5. If you have these genes, you’re at increased risk for CIRS.
Approximately 23% of the general population has the HLA-DR gene. These members of the population have an immune system that is unable to expel the mold toxins (mycotoxins). With the toxins never leaving the body, the HLA-DR genes instruct your immune system to create inflammation.
Unfortunately, this doesn’t get turned off. This results in a chronic state of inflammation. The cause of this chronic inflammation is from your immune system. As you’ll soon learn, a moldy immune system is not a well-functioning immune system.
Is your immune system moldy?
Your body comes complete with two different subdivisions to its immune system:
I wrote about how the innate and adaptive immune systems are linked to chronic fatigue in this post. Be sure to check it out for a deeper understanding of how your immune system functions!
If you happen to have the moldy genes (HLA DR/DQ), there will be an increased response from your innate immune system when it identifies molds or mycotoxins. This upregulation of the innate immune system is what triggers the chronic inflammatory state found in mold illness.
The vast majority of those experiencing Chronic Inflammatory Response Syndrome has the HLA DR/DQ genetic mutation. In these cases, the adaptive immune system is unable to get summoned. This leaves your body stuck fighting mold and mycotoxins with solely it’s innate immune system.
Now that you know all about the moldy genes and their corresponding effect on your immune system, let’s dive into how you could develop Chronic Inflammatory Response Syndrome. It’s more than just mold that can trigger it!
How does Chronic Inflammatory Response Syndrome get triggered?
Without exposure, CIRS would not develop. In order for the chronic state of inflammation to get triggered, you need to have some form of environmental exposure. Some of the more common environmental triggers include:
- Mold and their mycotoxins from a water-damaged building
- Tick bites
- Poisonous spider bites
- Algae blooms
Remember, most people don’t know they’re living or working in a water-damaged building. Mold tends to hide behind walls, in HVAC systems, or in attics/crawl spaces.
Just because you can’t see mold does not mean your home or office is safe. Depending on the study you cite, homes and buildings in the United States found anywhere from 25-50% of them to have water damage! (1)
CIRS is hiding in plain sight
Both a mold allergy and CIRS are not commonly investigated in the conventional healthcare setting. At best, a mold allergy may get diagnosed by an allergist. But this does nothing to confirm (or deny) the presence of CIRS.
Because the symptoms of CIRS are so vast, patients are often given a strange diagnosis that describes their symptoms. Some of the common diagnosis that is actually caused by CIRS include: (2)
- Chronic Fatigue Syndrome
- Multiple Sclerosis
- Post Traumatic Stress Disorder
- Irritable Bowel Syndrome
- Attention Deficit Disorder
- Histamine intolerance
- Mast-Cell Activation disorder
Notice how each of the above diagnosis describe conditions in which the medical community does not know the cause. CIRS has a known cause – it’s usually mold – a clear way to diagnose it, and objective, scientific evidence to support its existence. If you haven’t already, be sure to take our questionnaire to see if your symptoms are caused by mold.
Diagnosing a patient with CIRS is far more helpful than a diagnosis of fibromyalgia or chronic fatigue.
After you’ve received a diagnosis of fibro or CFS, what’s the treatment plan?
All too often it’s antidepressant therapy and/or painkillers.
How is either of these treatments going to address the root cause of your illness?
Symptoms: mold allergy vs Chronic Inflammatory Response Syndrome
The symptom picture between mold allergies and CIRS is dramatic. Below, I list the most common symptoms associated with each disorder. If you suspect CIRS may be affecting you, take our free CIRS quiz here.
Common symptoms of a mold allergy
Symptoms of a mold allergy do not differ dramatically from allergic reactions to other environmental triggers. Some of the most common symptoms include: (3)
- Runny nose
- Dry or scaling skin
If mold spores get in your nose, you’ll likely experience rhinitis (inflammation of the nasal pathways), watery eyes, and/or post nasal drip. If mold spores make their way to your lungs, you’ll experience asthma, shortness of breath, and/or a cough.
Some patients can have a more serious illness called allergic bronchopulmonary aspergillosis. In this condition, there is both an allergic and an inflammatory response to the mold. Symptoms may include severe wheezing, coughing and shortness of breath, much like asthma. (4)
Common symptoms of Chronic Inflammatory Response Syndrome
The symptom picture found in CIRS is far more complex and non-specific. All too often, those suffering from undiagnosed CIRS have been told they have fibromyalgia, chronic fatigue, irritable bowel syndrome, and even that their symptoms are all in their head. Some of the more common symptoms of CIRS includes:
- Muscle Cramps
- Unusual Pain
- Ice Pick Pain
- Light Sensitivity
- Red Eyes
- Blurred Vision
- Sinus Problems
- Shortness of Breath
- Abdominal Pain
- Joint Pain
- Morning Stiffness
- Memory Issues
- Metallic Taste
- Focus/Concentration Issues
- Word Recollection Issues
- Decreased Learning of New Knowledge
- Skin Sensitivity
- Mood Swings
- Appetite Swings
- Sweats (especially night sweats)
- Temperature Regulation or Dysregulation Problems
- Excessive Thirst
- Increased Urination
- Static Shocks
Notice how many symptoms there are in CIRS. Syndromes like chronic fatigue, fibromyalgia, IBS, etc. have no known cause(s). Because of this, patients are offered little in the way of treatment options. CIRS offers a causal reason for why/how these mysterious syndromes develop. If you suspect you’re suffering from chronic inflammatory response syndrome, you can find a trained practitioner here.
Treatment: mold allergy vs chronic inflammatory response syndrome
The treatment process for mold allergies and Chronic Inflammatory Response Syndrome are dramatically different. I want to clarify that your family/conventional medicine practitioner will not be trained in the diagnosis and/or treatment of CIRS. Your family physician will be able to help you deal with a mold allergy but not CIRS.
Mold allergy treatment
The most obvious step here is the avoidance of mold. If your home is water damaged, you’ll need to have a specialist treat your house. Quickly treat any and all water leaks in your home. Whether the drips come from pipes or condensation on your windows, you need to be proactive in managing water/moisture.
Be sure to turn on your exhaust fan every time you take a shower. This will prevent an accumulation of condensation which will lower the risk of mold growth. If you live in a humid environment, consider investing in a dehumidifier. You’ll want to keep your house below 45% humidity. Anything more will promote mold growth.
If you’ve removed sources of exposure, and you’re still symptomatic, your doctor will likely prescribe antihistamine medications and/or nasal steroids. Both of these medications will lessen your immune system’s response to the mold’s mycotoxins. But please note neither will cure your mold allergy. In order to rid yourself of a mold allergy, you need to remove any potential areas of contamination.
If you previously lived in a water-damaged building, this may be as dramatic as needing to replace your clothes and furniture. Mold spores can be found on all types of fabric.
Chronic Inflammatory Response Syndrome treatment
Avoiding mold exposure(s) and taking an antihistamine won’t cut it for this group. Those who develop CIRS have a genetic susceptibility. Dr. Ritchie Shoemaker developed a 12-step treatment plan for chronic inflammatory response syndrome and mold illness. I give you a basic introduction to his protocol below.
- Step 1: Testing of your environment
In order to successfully treat CIRS, you need to ensure the environment(s) you live/work in do not contain molds or mycotoxins. As molds often develop in areas that are out of site, a simple visual scan of your home and work is not enough. There are two tests used to evaluate your home for mold. The ERMI test and the HERTSMI 2 tests are considered the gold standards for identifying whether or not your home is safe.
- Step 2: Removal from the water-damaged building(s)
After you’ve performed testing on your home/work/school, you will know whether (or not) it is safe for you to go to these areas. Should any of the environments you live/work in contain mold, you will need to remove yourself from them. If you are consistently re-exposed to mold, you will not get better. Avoiding re-exposure is perhaps the most important step in the treatment of Chronic Inflammatory Response Syndrome.
- Step 3: Removal of molds from your body
Those with the HLA-DR genes are unable to successfully remove molds and mycotoxins out of their body. Therefore, medication and/or supplements need to be used to help successfully remove the toxic burden. In the Shoemaker protocol, Dr. Shoemaker recommends using Cholestyramine.
Cholestyramine was originally prescribed as a cholesterol medication. It works in lowering cholesterol by binding cholesterol molecules and bile salts in your GI tract and excreting them through your feces. The magic binding capacity of cholestyramine also works on molds. This medication will bind to any molds that are present in your GI tract and allow you to successfully remove them through your feces.
- Step 4: Eradicating MARCoNS
MARCoNS stands for multiple antibiotic resistant coagulase negative staphylococci. MARCoNs are bacteria that can take up residence in your nasopharynx, the upper part of your throat where it connects to your nose. This is not an area you want MARCoNS to take up residence!
These bacteria form a biofilm which protects them from antibiotics (hence them being named antibiotic resistant). Biofilm is a gooey substance excreted by bacteria to better help them adhere to the walls of your nose/throat (or any area bacteria reside). Antibiotics struggle to effectively treat bacteria adhered by biofilm.
MARCoNS lower levels of a specific hormone in your body called melanocyte stimulating hormone (MSH). MSH is absolutely essential in helping your immune system regulate inflammation. After step 3, patients generally feel some improvement. if they don’t, MARCoNS are likely interrupting the healing process.
To successfully treat MARCoNS you need to deal with the biofilm. EDTA combined with an antibiotic nasal spray is the treatment of choice via the Shoemaker Protocol. Alternative therapies like Johnson’s Baby Shampoo have also been shown to disrupt the bacterial biofilm. (5) They are often combined with probiotics applied to the inside of the nasal cavity.
- Step 5: Gluten removal
CIRS will often trigger your immune system to create anti-gliadin antibodies. This will make you intolerant to wheat products. If you recently acquired mold illness, you may have noticed wheat products to suddenly start triggering symptoms. Even though you were able to tolerate it for years before without issue.
A gluten-free diet is recommended at this stage of treatment. Often, the anti-gliadin antibodies will correct after the mold has been removed. You’ll then be able to tolerate wheat/bread once again.
- Step 6: Correcting androgens
Androgens are male sex hormones. Both males and females have androgens. CIRS often create imbalances in androgen levels. To restore health/balance back to your endocrine system, you’ll need to balance androgens.
- Step 7: Correcting ADH/osmolality
ADH stands for antidiuretic hormone. You may also know it as vasopressin. ADH controls the amount of water stored in your blood. Osmolality problems can manifest as frequent urination, excessive thirst, headaches, or low blood pressure.
- Step 8: Correct elevated MMP-9
MMP-9 stands for Matrix Metalloproteinase 9. MMP-9 aids in bringing certain inflammatory molecules into your brain, nerves, muscles, lungs, and joints. In CIRS, MMP-9 is commonly elevated. Your first step in decreasing MMP-9 levels should be adopting a low-amylose diet.
A low amylose diet will be keto-esque nutrition plan. Specifically, you’ll be avoiding:
- Roots and tubers including white and sweet potatoes, beets, peanuts, carrots, and other vegetables that grow underground. The exception here is onions and garlic.
- Bananas (the only forbidden fruit).
- Wheat and wheat-based products including bread, pasta, cakes, and cookies.
- Foods with added sugar, sucrose, corn syrup, or maltodextrin.
If dietary changes do not improve MMP-9 levels then DHA and EPA supplements are added. EPA and DHA are omega 3 fatty acids. You likely know them as fish oils. To lower MMP-9 levels, you’ll want to take 2.4g/day of EPA with 1.8g/day of DHA.
- Step 9: Correcting low VEGF
VEGF stands for vascular endothelial growth factor. Low VEGF causes fatigue, muscle cramps and shortness of breath. Those with chronic fatigue syndrome often have very low levels of VEGF. The low amylose diet and addition of omega 3 fish oils should improve VEGF levels. But if your fatigue is still present, slowly adding exercise to your daily routines will result in further VEGF improvements. Check out my article on how to exercise with chronic fatigue for more info!
There you have it! The 9-step method for improving Chronic Inflammatory Response Syndrome. I cannot stress the importance of working with a mold-literate practitioner enough. You cannot go through the Shoemaker Protocol on your own. Their needs to be a lot of guidance along the way.
If you cannot access a practitioner trained in mold illness, make your first step the testing of your home and/or office. Use both the ERMI and the HERTSMI II tests to determine if your home and office are safe. This step is the most important. And you don’t need a practitioner to help you with it either!
Now, I want to hear from you!
What strange array of symptoms did mold cause in your body?
Leave your answers in the comments section below!
Also published on Medium.