According to Dr. Ritchie Shoemaker, a leading biotoxin researcher with a medical degree from Duke University, Chronic Inflammatory Response Syndrome (CIRS), is the result of chronic inflammation produced by exposure to biotoxins (toxins produced from living organisms) that come from mold (mycotoxins), tick-borne infections like Babesia, dinoflagellates, blue-green algae, some reef fish, and the brown recluse spider. The most common trigger of CIRS is usually the combination of mycotoxins, bacteria, VOCs, chemicals, and other damaging pathogens found within water damaged buildings [1].
Dr. Theoharides at Tufts, who has published nearly 400 peer reviewed papers and is in the top 5% of most quoted authors in pharmacological and immunological journals, has long spoken of the link between mold exposure and mast cell activation [2]. Activation of mast cells would release histamine, along with other inflammatory molecules into the blood stream.
Today I’m interviewing Dana Howell, a patient who has healed herself from mold exposure and subsequent mast cell activation, through her research and with the help of Joe Cohen at Self Hacked. Joe is the person I called on to read my 23 and Me results. I wanted an unbiased view of what was going on and he certainly delivered.
Yasmina:
Dana, please tell us a bit about CIRS.
Dana:
24% of the population is genetically susceptible to getting very sick from biotoxins. This can be determined by a very simple HLA-DR blood test. Dr. Shoemaker, leading expert in CIRS, explains that for these genetically susceptible individuals, biotoxins can’t be “tagged” by the body, and so the body then responds the only way it can: with fierce inflammation. But animals have also become very sick in water damaged buildings, so it’s not 100% necessarily, that the genetically susceptible that are at risk; though they are much more prone to developing chronic issues.
Yasmina:
Please tell us a bit about the symptoms and your personal experience with mold exposure.
Dana:
The average CIRS patient will have about 22 symptoms. The risk of these patients sounding like hypochondriacs is compounded when all traditional lab work returns ‘normal.’
I was one of the lucky genetically predisposed who became sick almost overnight in a very moldy home in Vietnam. It started with drowsiness and itchy skin. From there things went downhill fast. I was standing up talking one morning when I suddenly fainted. I came to with my Vietnamese host mother hovering above me in panic, rubbing tea tree oil on my face. I immediately removed myself from the mold home in Vietnam, but symptoms became more severe as the already absorbed biotoxins continued to recirculate throughout my bloodstream. I thought I was getting better when I suddenly began to get panic attacks (I was never an anxious individual, it was more of a “poison attack”), leading to sunlight sensitivity, extreme sound sensitivity, visual snow, loss of feeling of my left leg, confusion, brain fog, breathing problems, stabbing migraines, GERD, neuropathy, POTS symptoms, seeing make believe images in my peripheral, dizziness, and the worstÖa case of 24/7 Depersonalization/Derealization (hallucinations, feeling as if you are on some kind of drug: patterns moving, seeing trails etc.).
It’s no wonder LSD came from the grain fungus ergot, eventually triggering the Salem witch trials! All these years later mold is still creating problems, and patients are still being demonized and told it’s all in their head.
Yasmina:
I’m sorry but I have to butt in quickly: one of my really bizarre symptoms was LSD-like trippiness after eating certain foods. Cashews, vanilla, mushrooms picked freshly from a field in Beirut when I was covering the war spring to mind. Carpet patterns would literally start moving around. My bedroom in Spain growing up was in the basement. It was covered in mold. I still remember the smell. My mother was also a huge advocate of leaving food in the fridge for weeks and totally ignoring the sell-by dates. I still remember her scraping green mold off bread before handing it to me, saying: “Don’t be silly! Where do you think penicillin comes from?!”.
Dana:
My early lab work was normal. At the time I was in Vietnam, I exchanged a bar of chocolate and $20 for an MRI (apparently a huge win for them, a steal for me!). Everything again..normal. I ended up seeing doctors all over the US, but only left with diagnosis of “possible MS,” shoulder shrugs, or scripts for SSRIs.
Finally I was able to get the right testing, including a NeuroQuant of my MRI, a computer program used to scan properly run MRIs for brain injury, typically used for early detection of brain atrophy in dementia and Alzheimer’s Disease. My results showed swollen cortical gray matter, an exceptionally swollen forebrain (needed for organization, making plans, controlling emotions), and a shrunken caudate (the dopamine-rich part of the brain). My TGF Beta-1 and C4a levels were exceptionally high, indicating severe chronic inflammation. This inflammation activated mast cells and increased blood histamine levels, making my brain even foggier and symptoms that much worse.
Thankfully, I was able to gain a lot of my health back through my own research, and through the work of very knowledgeable mold, lyme and out of the box practitioners and thinkers like Dr. Shoemaker and Dr. Marinkovich. Joe Cohen really helped tip things over the edge for me, and made me that much better. I am so beyond grateful!
Yasmina:
So, let’s say someone suspects they’ve been exposed to mold, what are their next steps?
Dana:
If someone has list of about 20-30 symptoms, they really should get their mold biomarker tests, at least including the VCS test (visual contrast sensitivity-most all people with mold issues can’t distinguish certain shades of gray due to lack of oxygen and blood flow to the optic nerves), VIP levels, and inflammatory markers TGF Beta-1, MMP-9, C4a, C3a. Inflammatory markers like MMP-9 are important because they can test if a person is having a lack of ability to regulate inflammation in face of persistent stimulation, but with lack of finding certain antibodies. Dr. Shoemaker found that it’s a great marker for showing a whole series of cytokines instead of testing for certain individual cytokines like TNF-alpha, which only tests the TNF-alpha circulating in the blood, not what’s being bound in the cell or the cell next to it (in other words..the real results could be much higher!!). If you can later, through your treatment (as some of these tests can be expensive), you should test your MSH, HLA-DR genes, ADH/Osmolality, ACLA IgA/IgG/IgM, AGA IgA/IgG (this one’s not completely necessary in my opinion), VEGF, ACTH/Cortisol and Leptin. There is a lot of current research in progress related to mold illness in general, and in addition to the Shoemaker protocol. You must work through a pyramid of steps to resolve the inflammatory cascade.
Yasmina:
Beyond testing, what can we do?
Dana:
The first step is removing yourself from your mold exposure and creating a safe environment to heal. Testing your home to make sure it has a safe HERTSMI-2 or ERMI scoring is recommended. The next step includes taking binders like Cholestyramine (CSM). Dr. Shoemaker discovered the effectiveness of this this cholesterol lowering drug for CIRS by chance, realizing it worked for binding a wide range of different negatively-charged molecules and toxins due to its positively charged molecules. This helps to bind biotoxins, halting their recirculation and helping to lower inflammatory markers. Some of the next steps focus on increasing MSH, correcting chronic hypoxia and lack of blood flow, and increasing VIP (vasoactive intestinal polypeptide) in order to regulate cytokine and inflammatory response from re-exposure. This protocol alone has an extremely effective track record. In my experience, this protocol has been very helpful, in addition to adding other diet and lifestyle changes (and a few other therapies) to further the healing process that much more.
I’ll never forget my first hospital visit, looking down through the window at the cars below, swirling in circles like little ants. My brain didn’t comprehend any of it. I struggled to remember my brother’s name, to make sense of the chronic hallucinations. Absolute madness. I’m happy to say though, for anyone who is questioning if they will get better, there is a method to the madness. CIRS is a real documented illness, and there’s a way out. I’m so happy to be helping others find it.
Yasmina:
Dana, thanks so much for taking the time to share your story with us.