CIRS stands for chronic inflammatory response syndrome. There are a few entities that can cause CIRS. The indoor environment in a water damaged building is the most common widespread cause of this syndrome. Lyme disease is a cause of CIRS in certain areas of the country, with cyanobacteria and dinoflagellate organisms less common. Lyme disease, Lyme diagnostic testing, Persistent Lyme, Chronic Lyme, Post-Treatment Lyme Disease Syndrome, Stationary Phase Lyme, and autoimmune disease from Lyme disease, have all had a controversial history, with many academics and societies still debating how to diagnose and treat the entity of Lyme disease. Many are still debating what to call this entity or why some individuals have persistent symptoms. The line was drawn in the sand many years ago and is getting increasingly complex while patients with Lyme/CIRS continue to suffer. Many physicians are being subjected to ridicule for even seeing someone with Lyme or offering to repeat a round of antibiotics. Lawsuits against the CDC, IDSA, and insurance companies for denying Lyme coverage are only making the biases stronger and the topic more heated. Fortunately, while everyone is arguing, a small group has consistently treated severe NeuroLyme easily and effectively, but few if any are listening.
Nearly every persistent Lyme patient in our clinic is found to have inflammatory response syndrome using the Lyme CIRS consensus statement. I have discovered only 2 outliers thus far that didn’t fit the definition from the consensus statement. Lyme/CIRS does not always respond fully to prescription antibiotics. However, someone presenting with “Lyme Disease” often does not have Lyme, but mold related CIRS from water damaged buildings. As I keep telling other providers, if they are not getting better, consider Mold/CIRS.
More than 10 years ago, there was controversy if mold and bacteria actually caused symptoms, besides wheezing and coughing. Eric Johnson’s written info on the events surrounding the “mysterious illness of chronic fatigue syndrome” in Nevada in the 1980’s are now thought to be mostly from mold/CIRS. CIRS is a real entity and now has more than 10 years of research supporting CIRS in the “evidence based” medicine World. But yea sorry, there are no thousand plus subject pharmaceutical FDA trial’s in CIRS and there will never be, except perhaps on VIP spray. Evidence based should not get confused with evidence based pharmaceutical FDA trials.
Thankfully, the work by several clinical researchers and especially Dr Shoemaker have repeatedly validated CIRS as a real entity. Treatment protocols were established for CIRS by Shoemaker et al and the NeuroLipid treatment group more than 10 years ago. Abnormal symptom roster, Labcorp evidence of proteonomic abnormalities, abnormal volume analysis using NeuroQuant Brain MRI, Vision Contrast abnormalities, and now genomic RNA abnormalities are known to be present in this group of patients compared to controls. Consensus statements have already been formulated. Several laboratories can analyze the indoor environment using mold dna pcr tests ERMI/HERSTMI including newer bacterial toxin analysis. Some of these include envirobiomics.com and mycometrics.com. The ERMI is a mold dna pcr test validated by the EPA and used by several remediators, certified inspection hygienists, and clinics who have experiencing treating those with CIRS. In the remediation and construction environment, ERMI dna pcr mold testing has been found to be more helpful than Spore Trap air sampling method in those who are affected by the indoor environment.
The indoor environment with high humidity or water damage can lead to microbial growth of various toxic species of fungi/mold and bacteria. Understanding here that fungi/mold are present everywhere in our environment and many are friendly and nontoxic. Many fungi species that produce toxin like Aspergillus need humidity of 65% or more to grow in the presence of a food source, which may include carpet padding, drywall, insulation, and dirt on carpeting and wood. A toxic soup of aerosolized and invisible exotoxins, volatile organic compounds, hemolysins, and other toxin fragments from mold spores can all lead to symptoms in those genetically susceptible. Of note though, in some situations, those without HLA genetic susceptibility can also have CIRS symptoms. These symptoms can include headache, fatigue, weakness, skin itching, excessive urination, abdominal complaints, insomnia, dizziness, memory and concentration problems, anxiety, attention deficit, light sensitivity, and pain. Inhalational Alzheimer’s from an indoor toxic environment, can be diagnosed and successfully treated if someone is in the early stages of cognitive impairment. (Bredesen et al and soon to be published research by us, Cleveland Clinic, and others) This area will remain controversial for sometime until more of us publish our findings. PANS/PANDAS (pediatric acute onset neurologic symptoms) are both known to be exacerbated by indoor toxins including Lyme and there is soon to be published research on significant reduction in neurologic symptoms using a CIRS protocol.
Now that CIRS is known to be a real entity, supplement companies, podcasts, physician providers, and alternative medicine providers are jumping on social media and advertising they have the latest cure. Some are even saying that prescription toxin binders like cholestyramine are somehow toxic themselves. Some of what is being said is bogus science and more are now relying on the urine mycotoxins tests which are known to be full of false positives and in 2 cases in our clinic, patients who had definitive mold/CIRS but had a normal urinary mycotoxin test. In time, perhaps the terminology of CIRS will change over time and likely there will be small tweaks to the consensus guidelines as emerging data using Nanostring dna/rna technology builds. Already, groups are attempting to use Nanostring dna technology to revamp standard CIRS protocol.
The competing and differing ideas of the Environmentally Acquired Illness group, NeuroLipid treatment group, the Surviving Mold community, and those diagnosed with mast cell activation disorder/histamine intolerance and multiple chemical sensitivity, are all bringing new ideas and observational clinical research to the table. Just in the last few months, several supplement companies have brought new mast cell/anti histamine products to the market that appear to be helpful in managing symptoms while people learn about AVOIDANCE of indoor toxins and following a protocol. Neurobiofeedback has been shown to reduce brain atrophy in small studies and many clinics are seeing improvement in QEEG abnormalities and reductions in anxiety and insomnia in those with CIRS…understanding here that often times these improvements are short lived till the toxin is removed and avoided. Primobiotic supplement (nonpathogenic tiny nematodes), which has more than 20 years of research in the autoimmunity community, have begun the first successful observational trials in the chemical sensitivity and mold community. To me, the competing ideas are not too concerning. I do find it concerning that providers and holistic practitioners are telling people that prescription mold binders are toxic or not using a treatment protocol towards getting someone on VIP nasal spray. Those with severe and longer standing CIRS and mold sensitivity will need to go slowly with using binders and often times will need detoxification of the liver/gallbladder to help minimize side effects of prescription binders.
I am forever grateful for the pioneering work by Dr Shoemaker and others. Due to the understandable early and continued controversies in MOLD, Dr Shoemaker was ridiculed and harassed by others in the field who either had financial competing interests or were lawyers working on the other side of the podium. Just as Dr Shoemaker was ridiculed, Dr P Rowe was ridiculed about his syndrome called POTS/dysautonomia in the early days, Dr B Marshall was harassed about his discovery that H pylori caused peptic ulcers and did not gain recognition until after his death. Dr Shoemaker was also harassed and put on probation by the State Board of Physicians when the evidence already existed.
Thankfully, the work by Dr Shoemaker and others like Dr Ed and Patricia Kane, have helped myself and family recover from Persistent Lyme symptoms and also mold related CIRS. However, a trial of one family is never considered true evidence. Thankfully though, established protocols already existed and have consistently been shown to reduce symptoms in those with inflammatory response syndrome from indoor toxic air and Lyme disease. Chronic fatigue syndrome that is the result of Lyme or indoor toxins is treatable. See the work done by the SurvivingMold and Lyme group.