It’s been a few months since I have updated my blog. So, where was I?
It’s been a challenge to write while balancing my Tampa Functional Medicine practice, family life, and studying. I figured all that out, sort of! I am happy to be back to writing!
The purpose of my blog is to educate health care consumers on a range of health care topics, and most importantly help you to find the root cause of your health concerns. Since starting my blog, I am happy to say there are many patients who have reached out for more information in a one on one setting.
Besides that, what has really left me busy in the last few months….I have been in the “hole” reading through a borage of papers and books concerning CIRS-Chronic Inflammatory Response Syndrome. Over the last four years I have been engaged in testing patients for CIRS- mostly due to mold (more accurately, exposures to biotoxins in water damaged buildings) and Lyme biotoxin. I decided to take the plunge to learn the Shoemaker Protocol for CIRS- biotoxin illness through Dr. Ritchie Shoemaker and I am currently in the certification process.
In January 2019, I attended the Meeting of the Minds Conference in Ft. Lauderdale, FL. It was a three-day conference, bringing together mold remediators, inspectors, and physicians who treat CIRS patients. If you are not familiar with what CIRS is-let me explain.
What is Chronic Inflammatory Response Syndrome – CIRS?
Chronic Inflammatory Response Syndrome occurs when a genetically susceptible individual is exposed to a biotoxin and as a result becomes chronically ill over a period that usually spans years. The most notable exposures are to a host of biotoxins and inflammagens found in a water damaged building or home. This is more common than you might think. According to the World Health Organization, 50% all buildings/ homes are water damaged in the United States. Another common cause is the toxins associated with Lyme disease. There are other causes of CIRS, but for now these are the two most commonly recognized, i.e. living or working in a water damaged building or post Lyme disease.
Below is the extraordinary list of inflammagens found in a water damaged building: It’s not just mold!
Symptoms of CIRS
The Most Common Symptoms Include:
- Brain fog, loss of concentration, loss of verbal recall
- Chronic fatigue- usually misdiagnosed as chronic fatigue syndrome
- Muscle aches and pains- usually misdiagnosed as fibromyalgia
- Abdominal pain or GI dysfunction – often misdiagnosed as leaky gut, SIBO, IBS
- Respiratory symptoms, chronic sinuses, coughing
- Anxiety or depression
There are more symptoms. In fact, there are 37 symptoms grouped into 8 clusters for purposes of analysis. If a person has 8 or more clusters there is a greater than 80% chance that they in fact have CIRS. These symptoms must be reviewed with a health provider with a proficiency in CIRS. Other reasons for the symptoms must be ruled out and some symptoms on the check list require a deeper dive, or interrogation by the practitioner to discover more about the symptom.
For example: I have had patients when asked “do you get leg cramps?”, they say “no, not really”. However, when I ask again in a more specific manner “do you have cramps in your legs at night that are painful or wake you up”, “or do you feel your fingers lock at times?”, the response may change. “Oh, yes, I do, but it’s just one or two times per week”. This is relevant, there is a reason for the cramping, and it should be accounted for in order to properly diagnose. It’s also nice to see that symptoms of cramping often resolve in a few short weeks following treatment.
Genetics Play a Role in CIRS
When encountering a biotoxin the normal immune system response it to tag it, bind it, and eliminate it from your body. For those with certain types of HLA-DR genetic codes they are less capable of eliminating toxins and more likely to acquire a chronic inflammatory response that will cause a host of unrelenting symptoms. Reduced biotoxin elimination allows toxins to remain in the body.
The HLA-DR genetic variances are geared towards increasing inflammation throughout the body, hence the diagnosis- Chronic Inflammatory Response Syndrome. This is accounts for 24% of the population that is genetically susceptible. Of course, not all those 24% will be exposed or will suffer once exposed. The genetic predisposition explains while some in a home that has hidden or exposed mold will become ill, while others will feel just fine.
When I consult with patients, it’s quite common that most people in the home have at least some of the symptoms associated with CIRS. Those who are least affected don’t usually attribute the problems to mold or the indoor environment, but once we discover the AC unit that needs cleaning or the musty odor that was coming from the closet, maybe a leak in the plumbing and clean up the problems, their symptoms often go away!
Those with CIRS will remain sick even after the exposure is improved. They might find some symptoms resolving but not completely. They can go from twenty symptoms to ten, but the inflammation remains. The CIRS patient requires proper diagnosis and treatment and so rarely do they get it! When was the last time a doctor asked you “Are you exposed to any musty smells or visible mold at home or work?”
If you can’t get rid of the toxin, the immune system stays indefinitely charged. A CIRS patient can leave the water damaged structure or be treated for Lyme disease but remain with symptoms and chronic illness.
CIRS Targets the Brain
The chronic inflammation that ensues creates a type of cytokine storm. Cytokines are immune messenger chemicals that tell the body to create more inflammation. In CIRS patients, cytokines act on the brain, particularly grey matter nuclei in and around the hypothalamus. These cytokines irritate the receptors in these very important control centers of the brain, leading to abnormal secretions of neuropeptides and hormones. In lay terms, this means the control centers of the immune system, temperature regulation, hormonal control and cognitive function start to shut down.
CIRS is Not an Allergy
CIRS patients can typically present with over 20 active symptoms that are seemingly disconnected to the many patients and the physicians they have visited.
Let me be clear here, CIRS is not an allergy! It is not an allergic response to mold.
It is an inflammatory response to mold that is caused by an upregulation of the innate immune system and increased cytokines. You can also have symptoms that appear to be an allergy, but that is a distinct entity from CIRS. Why is this so important to understand? Because, allergists will say you have a mold allergy. Does that explain your brain fog or gut problems? No.
How about when the doctor says I checked and you have no allergy to mold, yet you are suffering. Well, I can tell you one thing if you don’t have an allergy that is identified you are now one step closer to a CIRS diagnosis. Patients with CIRS often present with what appears to be mast cell disease (allergic type responses), but this is due to activation of complement cascade with C4a leading the charge. This is tested as part of the Shoemaker protocol and diagnostic workup. Go back and look at the symptom checklist, is it all allergy? No way!
Diagnosis and Treatment
A trained practitioner can spot CIRS. CIRS can be identified in children and adults. Children will present with 6 clusters of symptoms, while adults will usually have 8. Children will often express behavioral issues or anxiety, stomach pain, and congestion. This could be severe or mild in terms of neuro-cognitive symptoms or development. Children or adolescents with POTS postural orthostatic hypertension are often found to have CIRS. Adults will have brain fog, loss of concentration and many other aggravating symptoms including restless sleep. You can refer to the list provided early in this post.
- Typical blood tests are usually normal. Using conventional labs like LabCorp and Quest, CIRS can be diagnosed. We look for altered hormonal balance by checking markers like MSH, VIP, ADH, and ACTH. You don’t need to be familiar with these now, but you will if you have CIRS. Immune markers are checked including TGFB1, MMP-9, and C4a, same rule applies. In future blogs I will go through these in more details. For now, we need to understand that these need to be checked if you meet the symptom criteria and have a history of previous or ongoing exposure. I should also mention that there is a lot of misdiagnosis going on here. CIRS can cause autoimmune responses and appear similar to Lupus, Gluten sensitivity, and be the underlying cause for thyroid illness.
- Brain MRI is usually normal: When we add Neuroquant to the MRI, we find the problem in the grey matter nuclei of the brain, there is atrophy or loss of size in specific brain structures. Neuroquant is a technology that can more finely measure structures on an MRI, checking for changes in volume against controls. Neruoquant testing can help differentiate Mold or Lyme, each showing a different fingerprint on the brain. Most patients I check have CIRS due to water damaged building. Some have had Lyme and then can’t improve because they are in a water damaged environment. Either way, it’s CIRS that often needs to be treated, once the cycle of antibiotics has failed for Lyme patients.
- Hidden Biofilms: Nasal swabs will show hidden biofilms that are not infections but antibiotic resistant bacteria that are releasing their own form of biotoxin, furthering the out of control immune response in CIRS. This is termed MARCoNS. Multiple Antibiotic Resistant Coagulase Negative Staph.
- DNA Testing: Genie testing, a genetic test that looks at gene activation and what proteins are being made by the messenger RNA in real time can be used to asses the inflammatory response. This is not a 23&me test that tells you about genetic SNPs that will never change. This type of testing can tell the provider and patient what genes are currently activating. What is being expressed at this very moment in time. CIRS patients have a specific pattern where the genes for mitochondrial function and inflammation are being over expressed. This is cause for concern with regards to autoimmunity and chronic fatigue. Follow up studies can show the genes functioning more normally, showing a resolution of the Chronic Inflammatory Response.
- Additional Diagnosis: Diagnosis my also include Stress Echo, Vo2 max and additional lab testing. This is can help rule out other conditions as well as confirm CIRS, and monitor progression of CIRS treatment.
- Retesting: All throughout treatment we redo tests to see the positive changes and move to the next phase of treatment. Treatment starts with binders and finishes with peptides if necessary. Vasoactive intestinal peptide can literally reset the immune system and result in improved expression of genetics, as well as improvements in brain MRI as seen on Neuroquant.
- When Treatment Starts: It is not advised to start any treatment with binders, (prescription or natural) until a full assessment and diagnosis has been made.
Now that you have read through this article in its entirety, if you believe that you may be suffering with CIRS, don’t wait to be seen. The longer it takes to address CIRS, the more challenging it can become to treat. I know, because I too was exposed several times to a water damaged home and workplace, and I have the genetics for CIRS. Like many of the CIRS providers I was led to focus on this in practice out of my own experience. It took me over seven years to find an answer, and I already knew a lot of doctors! Now that I am equipped to handle CIRS cases, I am overjoyed seeing how well patients can heal even after feeling sick for so long without answers! I am here to be your guide.
- Shoemaker R, House D. A time-series of sick building syndrome; chronic, biotoxin-associated illness from exposure to water-damaged buildings. Neurotoxicology and Teratology 2005; 27(1) 29-46.
- Shoemaker R, Rash JM, Simon EW. Sick Building Syndrome in water-damaged buildings: Generalization of the chronic biotoxin-associated illness paradigm to indoor toxigenic fungi; 5/2005; Pg 66-77 in Johanning E. Editor, Bioaerosols, Fungi. Bacteria, Mycotoxins and Human Health.
- Bioaerosols, Fungi, Bacteria, Mycotoxins and Human Health (PDF)
- Sick building syndrome (SBS) and exposure to water-damaged buildings: Time series study, clinical trial and mechanisms
Disclaimer: The information in this blog post is provided for general informational purposes only and may not reflect current medical thinking or practices. No information contained in this post should be construed as medical advice from Dr. Matt Lewis, D.C., DACBN, CFMP®, nor is this post intended to be a substitute for medical counsel on any subject matter. No reader of this post should act or refrain from acting on the basis of any information included in, or accessible through, this post without seeking the appropriate medical advice on the particular facts and circumstances at issue from a licensed medical professional in the recipient’s state, country or other appropriate licensing jurisdiction.
About the Author: Dr. Matt Lewis, D.C., DACBN, CFMP®, specializes in diagnosing and treating the underlying causes of the symptoms related to chronic and unexplained illness through nutrition, lifestyle, chiropractic, and other natural approaches to whole-health healing in Tampa, Florida. He earned his B.S. in Biology from Shenandoah University, his Doctorate in Chiropractic from Life University, his Diplomate status in Clinical Nutrition from the American Clinical Board of Nutrition, his CFMP® from Functional Medicine University, and his certification as a Digestive Health Specialist (DHS) through the Food Enzyme Institute. Dr. Lewis’ passion for health and wellness stems from his own personal experience. With a family history of autoimmune conditions and diabetes, and his own lab tests showing his genetic susceptibility to Hashimoto’s thyroiditis (autoimmune thyroid), he has learned how to restore his own health and vigor to prevent the onset of these and other illnesses and live an incredibly active life. Through this process, he acquired a deeper understanding of health and wellness, which he now offers his patients in Tampa.