What is the connection between ME, CFS and mould? Or Lyme and mould? Risk factor, co-factor or underlying factor? The answer is … we just don’t know. Dr. Ritchie Shoemaker argues a diagnosis of Chronic Inflammatory Response Syndrome (CIRS) should be an exclusionary condition. During his practice Dr. Shoemaker saw 10,000 CIRS patients many of whom, including 163 children detailed in his 2007 paper, also met the CFS case definition. Erik Johnson, a prototype for CFS in Lake Tahoe in the mid-1980s, argues vehemently that instead of a virus causing CFS it instead unmasked susceptible people, who were clustered in mouldy buildings, to CIRS.
What is CIRS also known as mould illness? Welcome my friends to a dizzying array of acronyms, non-standard testing and specialised treatments. Welcome to online mould communities and people who have felt the devastation and loss of CIRS. Welcome also to new technologies such as NeuroQuant, a volumetric MRI, which shows edema and atrophy in the brain caused by cytokines and testing such as the Environmental Relative Moldiness Index (ERMI) which enables us to quantify the DNA of mould spores and spore fragments in a dust sample. If we peer around the corner we can see gene testing (PAXgene) that shows a fingerprint of gene expression in the microRNA enabling even better diagnosis of CIRS and genomic treatments that can turn off problematic inflammatory genes.
Digging deeper: between 24% and 28% of the population has a genetic susceptibility, which once expressed (usually via an inflammatory illness such as influenza, Lyme or glandular fever) means they will not create antigens to biotoxins from mould, or bacteria, from water damaged buildings. Instead these toxins remain in the body indefinitely causing an upregulation of inflammation and expression of inflammatory genes resulting in a multisystem, multi-symptom illness. And of course CIRS has a 100% symptom overlap with CFS and Lyme.
Deeper still: biotoxins block and damage the leptin receptors in cells of the hypothalamus resulting in high leptin and low neuropeptide hormones including melanocyte stimulating hormone (MSH) and vasoactive intestinal polypeptide (VIP). MSH and VIP are important as they control inflammation, regulate the immune system and protect mucous membranes in the gut and nose. With low MSH you are likely to experience leaky gut and food intolerances while biofilm forming Staph bacteria (MARCoNS), nasty toxin formers that perpetuate the vicious cycle, are free to flourish in nasal areas.
Lyme interfaces with CIRS in two ways. Firstly, Lyme and also Babesia produce biotoxins that with certain HLA genes, often overlapping with mould ones, won’t be eliminated naturally and continue to produce symptoms long after antibiotics have killed the spirochetes, cysts or parasites. Secondly, Lyme disease is often the cytokine storm illness that turns on the HLA genes in the first place. So not only are you unable to eliminate the Lyme biotoxins but you are now inhaling biotoxins from your house or workplace that you could eliminate previously. A cruel double whammy.
The good news is that there is a scientifically proven treatment protocol that Dr. Shoemaker has developed that can eliminate the biotoxins while restoring hormonal, immune and genomic balance to patients. I won’t sugar coat this, it’s not particularly simple or inexpensive. In fact step one, finding a safe home or workplace, can be extremely challenging living as we do in an era of dangerous buildings. The CDC’s NIOSH report in 2013 estimated 50% of all US homes to be water damaged, while Dr. Shoemaker states that the probability of CIRS patients finding a safe home to be one in seven. These are not great odds, but they’re not impossible ones either.
To help Australians get diagnosed, find mould literate doctors and building inspectors/remediators, and follow the Shoemaker protocol I have written a Frequently Asked Questions document for the facebook group Toxic Mould Support Australia I co-administer. You can also visit the Toxic Mould Support Australia website HERE. I encourage anyone who has been diagnosed with ME, CFS, MCS, fibromyalgia or Lyme to read the FAQ and look into CIRS. A quick and inexpensive ($15 USD) screening test is the visual contrast sensitivity test. Many people with these diagnoses have restored their health either partially or fully using Shoemaker’s protocol. I interact with these people on facebook every day and hear how sick they’ve been, or still are, and how far they’ve come. I see their relief upon receiving concrete diagnostic markers and see their hope for recovery when they learn of treatment options. Don’t bury your head in the sick building any longer, investigate CIRS as factor in your neuroimmune illness today.
Guest Blogger Caleb Rudd