Help for Micaine Seeley
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MICAINE'S STORY:
In 11-24-09, Micaine Seeley suffered a debilitating illness. Going from a healthy 24 year old that would weight train and run 5 miles every evening, to suddenly not being able to walk up the stairs without losing his breath, not being able to think clearly, having blurry vision, and suffering incredible fatigue which all happened instantaneously on his way home from work one day. Not knowing what was wrong with him, Micaine saw multiple doctors. Because he looked very healthy, his symptoms were multifaceted and could not be fit into a classical diagnosis he was labeled a hypochondriac, and just depressed. Once he had that label it was difficult for him to find a doctor that would take him seriously.
Disheartened by his experiences and out of financial resources Micaine decided to take a more functional medicine approach to his illness by researching and implementing things such as diet, nutritional testing, and supplementation to try to manage his symptoms. For the next few years his health went up and down but overall was getting slightly better due to this strategy until he moved into a new house. His health suddenly started to decline again. He once again got to the point where he didn't have the energy to just walk up and down the stairs. It seemed like years of progress reversed suddenly. Wondering why this happened Micaine remembered how the place he moved into was water damaged. Realizing that multiple places he lived in the past had water damage and they seemed to correlate to how he felt, he recalled a nutritional podcast he had listened to a few months prior. In the podcast Dr. Jill Carnahan said she became severely ill after being exposed to a water damaged building because of a rare genetic predisposition that affects 3% of the population.[1] When Micaine listened to that podcast for the first time, even though some of his symptoms sounded similar to Dr. Jill Carnahan's, he had just put that information in the back of his mind because he thought what are the chances that I'm the 3% of the population that has that gene?
Feeling desperate Micaine set out to see if this could be his problem. Having a lot of experience doing blood tests without a doctor by now, Micaine found a retail website where he could purchase a genetic test that would determine if he had the same genetic predisposition. Turns out Micaine had the same rare gene as Dr. Jill Carnahan, 4-3-53, & another gene, 17-2-52A, that made him susceptible to "biotoxins."
4-3-53 and 17-2-52A are HLA genes. HLA is short for human leukocyte antigen. “Leukocytes” are the white blood cells responsible for protecting your body from infection and foreign substances[2] and an antigen is a substance, toxins, bacteria, or foreign blood cells, that when introduced into the body stimulates the production of an antibody.
Dr. Ritchie Shoemaker discovered that there are some HLA phenotypes where they, usually after a priming inflammatory event,[3] have defective antigen presentation between the innate immune system and the adaptive immune system.[4] Dr. Keith Berndtson, a certified Shoemaker practitioner, describes the importance of the HLA genes in regards to the innate and adaptive immune system as follows: the innate immune system is a factory installed and ready to go the minute you’re born. Cells equipped with pattern recognition receptors are ready and waiting to respond to the presence of unfriendly toxins produced by the living things that our ancestors encountered during the long course of evolution. Toxins are then processed (in ways that depend on HLA genetics) and presented to naïve lymphocytes called T cells, the lead organizers of the adaptive immune response. The newly exposed T cells then teach B cells how to recognize and respond to the most recognizable toxin parts. If again exposed to the same toxin, your B cells will produce antibodies to hunt them down.[5] Lauren Tessier, another shoemaker certified partitioner, describes how this system can malfunction: however in those with susceptible HLA haplotypes, there is an error in the functioning of the adaptive branch of the immune system. The adaptive immune system should be able to appropriately process the biotoxin and then present it to other immune system cells. T cells awaiting “instruction” from the antigen presenting cell, will then pass on the information to B cells who will then produce the antibodies necessary to properly sequester and clear the threat from the system.
In people who are genetically susceptible, the process of presenting the biotoxin to the T cells has been rendered dysfunctional. Therefore, the antigen presenting cell continues to produce an abundance of inflammatory cytokines, effectively calling the immune system to attention, but ultimately unable to present the threat appropriately for necessary eradication. This results in the continual elevation of inflammatory cytokines, without resolution.[6]
This constant inflammatory state produced by the activated innate immune system led the discoverer of this dysfunction, Dr. Ritchie Shoemaker,[7] to coin the condition chronic inflammatory response syndrome or CIRS. In a 2013 paper, CIRS was described as a chronic, progressive, multi-system, multi-symptom syndrome characterized by exposure to biotoxins, HLA genetic predisposition, altered innate and adaptive immunity, peripheral hypoperfusion at multiple sites and multiple hypothalamic-pituitary-end organ dysregulations. This inflammatory dysregulation can affect every organ in the body and if left untreated, can become debilitating.[8]
Dr. Shoemaker found that a multitude of things like mould from water damaged buildings, tick-borne infections such as Borrelia or Babesia, dinoflagellates such as Pfiesteria or Ciguatera, blue-green algae such as cyanobacteria, multi-resistance coagulase negative staph, brown recluse spider bites[9]
Etc.. will produce biotoxins that can cause CIRS in those genetically susceptible people.
Certified Shoemaker practitioners explain the difference between a normal immune response and someone that is genetically susceptible to biotoxins, and what happens when exposed to them as follows: the innate and adaptive immune systems normally function together to remove these biotoxins from the body: immune pattern recognition by the innate immune system lead to antibody formation through a complex multi-step process. Antibodies bind to offending substances, leading to their clearance from the body. Clearance of offending biotoxins lead to cessation of innate immune system driven inflammation and people not getting sick from biotoxins. Genetically susceptible people, on the other hand, have a problem with the production of protective antibodies. So the toxin will be stuck in the body and will be detected by the innate immune system in a continuous manner, resulting in a chronic inflammatory response. This ongoing inflammation leads to recruitment of additional immune inflammatory pathways[10] causing multiple issues within the body including neuroimmune, vascular, and endocrine.[11] When this happens, the innate immune system shows signs of continuous but ineffective activation.[12] The constant release of inflammatory cytokinins are evolutionarily in place to aid the immune system in identifying a threat, recruiting the defense and eradicating the hazard. They were only ever intended to be raised for defensive purposes for a short period of time. When such inflammatory markers are chronically elevated we see the development of multi-symptom, multi-system complaints correlative with CIRS.[13] These cytokines damage leptin receptors which leads to reduced MSH, VIP and ADH production.[14] There are many other biomarkers that get dysregulated by this constant innate immune activation in CIRS including ACTH/cortisol, MMP9, VEGF, ACLA, AGA, TGF beta-1, C4a, vWF & MARCoNS[15] colonization. MMP-9, TGF-beta 1, VEGF, C3a and C4a are all cytokines that keep being affected endlessly. The role that they are meant to play in a healthy system gets subverted by the recurrent activation and diffuse, nonspecific symptoms develop that can’t be easily attributed to a specific organ system or local patterns of disease. Thus Dr. Shoemaker’s created a list of 37 symptoms that appear to have no coherent pattern comes into play and is not recognized by modern “disease-based” pattern recognition. Usually someone with CIRS is experiencing 15+ symptoms, it is not uncommon for that person to be labelled as having personality issues, mental health issues or simply called a variety of mystery diagnoses such as fibromyalgia or chronic fatigue.[16] In fact Shoemaker speculates that the neuroimmune, vascular, and endocrine dynamics present in CIRS may play roles in other forms of chronic illness including chronic fatigue syndrome (CFS), fibromyalgia (FM), post-treatment Lyme syndrome (PTLS), and multiple sclerosis (MS).
It is clinically suggested that patients reporting 6 or more of the symptom clusters be tested for CIRS.[17] Micaine had 21 of the 37 symptoms commonly seen in CIRS including chronic fatigue, weakness, pain, cramps, morning stiffness, impaired executive function, impaired cognitive function, reduced word finding, memory loss, impaired concentration, confusion, disorientation, mood irregularities, stomach issues, appetite irregularities, impaired temperature regulation, vertigo, blurred vision, numbness, and urinary frequency.
After discovering Micaine had the genetics and symptoms of CIRS he went on to test the blood biomarkers that get dysregulated in the illness. In CIRS there needs to be 5+ abnormal tests of the following 10 tests: (HLA, MSH, TGF-β1, MMP-9, MARCoNS, VIP, C4a, ADH/osmolality, ACTH/cortisol, ACLA/AGA) to be considered for diagnosis. Of those 10 test Micaine had 8 tests that were abnormal (HLA, MSH, VIP, VEGF, C4a, ACTH/cortisol, ACLA/AGA , & MARCoNS). Dr. John Whitcomb states, in adults, having 5 positives results in a specificity is 73.3%, positive predictive value is 97.7%, the likelihood by chance alone is less than 1 in 10,000,000,000.[18] This indicated to Micaine he was suffering with CIRS, which finally gave him the answer to the question, what is wrong with me?
While researching this illness Micaine discovered one of the most frightening effects of CIRS being that it can lead to Alzheimer's disease. When Dr. RJ Oenbrink DO claims CIRS manifests itself in numerous organ systems, leads to significant suffering and premature death[19] he's not being hyperbolic.
Dale Bredison, who in 2014 reported the first people with Alzheimer’s and pre-Alzheimer’s who’ve gotten better,[20] published a study called, Inhalational Alzheimer’s disease: an unrecognized—and treatable—epidemic. This study described how CIRS, mainly from water damaged buildings, was leading to Alzheimer's disease in genetically susceptible individuals. He states, here I report that type 3 Alzheimer’s disease is a phenotypic manifestation of CIRS. Both may present with cognitive decline that goes beyond a restricted amnestic presentation to include executive dysfunction and other deficits; as well as depression, hypozincemia, hypersensitivity to stress, and dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis.
After learning that CIRS can cause neurological damage, Micaine pursued getting a Neuroquant MRI to determine the severity of his illness. Certified Shoemaker practitioner Dr. Sandeep Gupta describes a Neuroquant MRI as a fascinating computer analysis of a standard non-contrast brain MRI done using a 3D T1 technique. This analysis can detect small changes in the sizes of brain organs that might be imperceptible to a radiologist. Based on the analysis, we can tell if the brain fits a CIRS brain.[21]
After getting his Neuroquant results back Micaine did a phone consultation with Dr. Ritchie Shoemaker. Dr. Shoemaker said in response to seeing his results "of the things I'd hate to lose my brain function would be the worst, and you're headed in that direction." Luckily the cognitive decline caused by CIRS can be repaired.[22] Dr. Dale Bredesen has even published reversal of CIRS type Alzheimer's by the effective treatment of CIRS.[23]
Unfortunately The treatment of CIRS is incredibly difficult and financially draining. Because CIRS is a recent discovery[24] the tests and treatment are not covered by insurance. Furthermore there are only 23 physicians certified in the Shoemaker Protocol.[25]
The treatment consists of an 11 step protocol.[26] The first step which is removal from exposure, shows how difficult this procedure is. Among the sources of biotoxins that can produce CIRS, biotoxins from molds known to grow in water-damaged buildings (WDB) account for some 80% of the CIRS-related illness burden. In the case of mold toxins, recovery depends on continual effort to avoid re-exposure.[27] Certified Shoemaker physician Dr. Lauren Tessier explains, when CIRS develops as a result of exposure to biotoxins in water damaged buildings (CIRS-WDB), either proper remediation or full avoidance is required.[28] This is the hardest and most difficult step to achieve according to Shoemaker certified Dr. Mary Ackerley.[29] The reason this is so challenging is because 50% of every home or building may be a source of exposure to biotoxins. The 2009 “WHO guidelines for indoor air quality: dampness and mould” states that based on studies done in the United States, the prevalence of dampness or mold in houses to be approximately 50%. In the United Kingdom, for example, 52% of owner occupied homes had dampness and 24% had mold, while 58% of lower income or rented homes were damp and 56% were moldy. Water damage or humidity high enough to initiate or maintain indoor microbial growth is very common.[30] When water damage occurs, mold can grow in as little as 24 to 48 hours and although water damage is probably the biggest concern, mold and other biotoxins can also develop in buildings that are not water-damaged but have indoor humidity levels above 50 to 60 percent.[31] Ritchie Shoemaker states, toxin avoidance goes beyond merely addressing home, school and work... Small, brief exposures may not trigger symptoms immediately, early in disease, but as one approaches the “sicker quicker” phenomenon (people that have been sick for a long time like Micaine 10 years), very brief exposures (measured in minutes) can lead to a profound worsening or re-activation of illness for days. Some patients are uniquely sensitive and can identify a WDB immediately. Some get headaches, others stomach problems and some “just don’t feel right”. Regardless of the symptoms, their bodies are telling them to avoid that building. I encourage my patients to listen to those warnings.[32] My particular HLA gene makes this situation worse as Dr. Whitcomb states, the “dreaded” HLA subtypes will be particularly sensitive to exposure. They have been misdiagnosed and misunderstood. They respond with extreme dysfunction when exposed. Sicker, quicker is their fate. This leads to an endless cycle of re-exposure to the toxin and reigniting of the innate immune system. Like an endless Ground-Hog day, there is no way to get out of the cycle. With activation of the innate system happening recurrently, the internal messaging system of the innate complex keeps being set into play.[33]
Micaine can usually determine if a building is harboring biotoxins within minutes after going into it. He instantly becomes disoriented, confused, his executive function drops even more, and is more fatigued than usual for the following couple of days. After going into his best friends townhouse he recommended he test his house because of how he reacted to it, the test showed that it was significantly elevated in multiple biotoxin producing molds. His best friend took Micaine's advice to test his HLA genetics based on some health concerns he had, and surprisingly had the same rare HLA gene and was suffering from the same illness.
To determine if a location is safe for someone with CIRS an ERMI test is used. The Environmental Relative Moldiness Index (ERMI) test was originally developed in 2006 by the Environmental Protection Agency (EPA). In contrast to air spore trapping tests, which can be rather hit or miss (usually miss), the ERMI is a Quantitative Polymerase Chain Reaction (QPCR) test of accumulated dust. It measures the DNA of dust samples from... molds, which are more toxigenic and associated with water-damaged buildings, and compares them to other molds.., which are not toxigenic.[34] A problem that arises with this test is because this test uses advanced QPCR technology, and there are so many things in a water damaged building that can cause harm, which must be tested for, the test costs $360.[35] That means every time Micaine goes into a place he has to either spend $360 or risk being exposed which stops treatment. Finding a new place to live or a new job can be incredibly costly especially considering 70% of the places he has tested so far haven't been safe for him to go into.
Micaine has spent the last 6 months trying to get past step 1 without success due to re-exposures. Some re-exposures have come from unlikely sources like his car. Even though it feels like a prison sentence he has accepted that during treatment he can't go into any building or home unless it has been tested.
Once Micaine has passed step one he has 10 more steps after that, and according to Dr. Sandeep Gupta those with a “dreaded” or multi-susceptible haplotype (the HLA gene Micaine has) often require more steps of the Surviving Mold protocol and find it more difficult to achieve remission than other haplotypes.[36] Moving on to each step usually requires testing and sometimesaq a drug. If he is exposed he goes back to step 1.
Micaine has exhausted every resource at his disposal including his savings, selling all of his possessions, and a very small inheritance he received after his dad passed away this last November to figure out his illness, and to get to where he is now. To add insult to injury, Micaine can no longer work in the career he began when he was 14 years old, growing saltwater corals, because the potential exposure to biotoxin producing dinoflagellates and cyanobacteria. Micaine had started two businesses during the 10 years while he was sick, both of which he had to give up when he moved into a very moldy house due to debilitating fatigue and cognitive decline. He has reached a point where the only option he has left is to ask for help. In order to get better Micaine will need to pay for blood tests, Shoemaker practitioner certified doctor visits, and medications.
Micaine believes one of the positive side effects of his suffering is being able to help others. Because Micaine never felt better after getting sick 10 years ago, he was always researching to figure out how to fix it. This allowed him to acquire a large body of information in regards to genetic polymorphism testing, diet/weight loss (Paleo and Ketogenic), testist vitamin and mineral nutritional status, methylation status, etc... Which he can share if someone wants to donate. He can also share his extensive knowledge of his illness CIRS. Even though this writing has focused on the so called "dreaded" genotype that Micaine has, roughly 25% of the population is genetically prone to develop CIRS if exposed to sufficient amounts of biotoxin,[37] it should be noted that roughly 24% of the population are susceptible to CIRS due to mold exposure, and 21% to Lyme inflammatory responses.[38] Meaning that the chance someone has or knows someone that has a health issues as a direct result to a water damaged building is quite high. Some of these people may have mild symptoms as level of exposure is sufficiently modest to not invoke full-fledged symptoms,[39] while others may be experiencing type 3 Alzheimer's described by Dr. Dale Bredesen. Psychiatrist Mary Ackerley, certified in the Shoemaker Protocol, describes how many of her patients are suffering mental health issues because of CIRS.[40] Because Micaine didn't have a Shoemaker practitioner that he could go to he had to learn how to do most of the testing himself and he would be able to pass that information along to rule out if someone's health issues are related to CIRS, and what steps are necessary to resolve it.
Micaine would also be willing to show anyone the criteria for a CIRS diagnosis including his labs, his HLA genes, his Neuroquant MRI results, his failed VCS test, and his out of range biomarkers. Because this is a new medical discovery it is understandable that there would be some skepticism that this illness is a real thing. Dr. Shoemaker has published an ABABA study providing evidence water-damaged buildings are causing sickness in susceptible people,[41] along with 35 published papers and articles in regards to CIRS.[42] Because Micaine is a very evidence based person and had been led astray by some doctors that were not as diligent with their diagnosis and treatments. Micaine also did a PAX gene analysis which of all the tests that can be done, this is the most cutting edge. Where HLA is a genetic test showing susceptibility; PAX gene analysis measures how strongly certain genes relative to biotoxin illness are expressed.[43] Pax Genomics measures mRNA and miRNA and can show aberrant nuclear DNA regulation of innate immune function, ribosomal and mitochondrial gene expression at the cellular level (discovered in a 2015 paper by Dr Shoemaker and James Ryan[44]). Additionally, serial testing after treatment has been shown to show improvement at the cellular level with the Shoemaker Protocol[45] with the return to normal function of ribosomal and mitochondrial gene expression,[46] which is Micaine's goal.
[1] https://youtu.be/4_8UOUsM_rY
[2] https://chriskresser.com/hla-b27-and-autoimmune-disease-is-a-low-starch-diet-the-solution/
[3] 5 Things You Should Know about Toxic Mold Illness by Chris Kresser, M.S.
[4] https://www.survivingmold.com/docs/Linkage_disequilibrium_in_alleles_of_HLA_DR.PDF
[5] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[6] Chronic Inflammatory Response Syndrome: Assessment & Management Lauren Tessier, ND
[7] Shoemaker R. Diagnosis of Pfiesteria-human illness syndrome. Maryland Medical Journal 1997; 521-523.
[8] (CIRS)Evaluation and Treatment Bruce Hoffman MD
[9] SURVIVING MOLD DOWN UNDER, A Guide to Implementing Dr Shoemaker’s 14 Step Mould Eradication Process in Australia, Dr Sandeep Gupta
[10] Syndrome acquired following exposure to Water Damaged Buildings [CIRS-WDB], Werner Vosloo ND
[11] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[12] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[13] Chronic Inflammatory Response Syndrome: Assessment & Management Lauren Tessier, ND
[14] A Walk Through the Biotoxin Protocol The Evidence-Based Way to Treat Chronic Inflammatory Response Syndrome Bruce Thomas, MD
[15] Shoemaker R, Maizel M. Innate immunity, MR spectroscopy, HLA DR, TGF beta-1, VIP and capillary hypoperfusion define acute and chronic human illness acquired following exposure to water-damaged buildings. 2008. International Healthy Buildings (conference peer review)
[16] The Approach, Diagnosis and Treatment of Chronic Inflammatory Response Syndrome John E Whitcomb, MD
[17] Chronic Inflammatory Syndrome: Assessment & Management Lauren Tessier, ND
[18] The Approach, Diagnosis and Treatment of Chronic Inflammatory Response Syndrome John E Whitcomb, MD
[19] (Shoemaker Protocol) Overview, RJ Oenbrink DO
[20] Dale Bredesen, The End of Alzheimer's: The First Program to Prevent and Reverse Cognitive Decline
[21] SURVIVING MOLD DOWN UNDER, A Guide to Implementing Dr Shoemaker’s 14 Step Mould Eradication Process in Australia, Dr Sandeep Gupta
[22] Internal Medicine Review- Intranasal VIP safely restores volume to multiple grey matter nuclei in patients with CIRS- April 2017 Shoemaker, R., Katz, D., Ackerley, M., Rapaport, S., McMahon, S., Berndtson, K., Ryan, J.
[23] Reversal of cognitive decline in Alzheimer’s disease Dale E. Bredesen1,2, Edwin C. Amos3, Jonathan Canick4, Mary Ackerley5, Cyrus Raji6, Milan Fiala7and Jamila Ahdidan8 & Reversal of Cognitive Decline: 100 Patients Dale E Bredesen1*, Kenneth Sharlin2, David Jenkins3, Miki Okuno3, Wes Youngberg4, Sharon Hausman Cohen5, Anne Stefani5, Ronald L Brown6, Seth Conger6, Craig Tanio7, Ann Hathaway8, Mikhail Kogan9, David Hagedorn10, Edwin Amos11, Amylee Amos12, Nathaniel Bergman13, Carol Diamond14, Jean Lawrence15, Ilene Naomi Rusk16, Patricia Henry16 and Mary Braud16
[24] Shoemaker R. Diagnosis of Pfiesteria-human illness syndrome. Maryland Medical Journal 1997; 521-523.
[25] https://www.survivingmold.com/shoemaker-protocol/Certified-Physicians-Shoemaker-Protocol
[26] Dr. Mary Ackerley_Discuss_the_Shoemaker_Treatment_Protocolv1.pdf
[27] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[28] Chronic Inflammatory Response Syndrome: Assessment & Management Lauren Tessier, ND
[29]Dr. Mary Ackerley_Discuss_the_Shoemaker_Treatment_Protocolv1.pdf
[30] Walk Through the Biotoxin Protocol The Evidence-Based Way to Treat Chronic Inflammatory Response Syndrome Bruce Thomas, MD
[31] 5 Things You Should Know about Toxic Mold Illness, by Chris Kresser, M.S.
[32] Dr. Shoemaker’s 11 Step Treatment Protocol 2/22/2013
[33] The Approach, Diagnosis and Treatment of Chronic Inflammatory Response Syndrome John E Whitcomb, MD
[34] A Walk Through the Biotoxin Protocol The Evidence-Based Way to Treat Chronic Inflammatory Response Syndrome, Bruce Thomas, MD
[35] https://www.envirobiomics.com/product/actinomycetes-plus-hertsmi-2/
[36] SURVIVING MOLD DOWN UNDER, A Guide to Implementing Dr Shoemaker’s 14 Step Mould Eradication Process in Australia, Dr Sandeep Gupta
[37] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[38] SURVIVING MOLD DOWN UNDER, A Guide to Implementing Dr Shoemaker’s 14 Step Mould Eradication Process in Australia, Dr Sandeep Gupta
[39] The Approach, Diagnosis and Treatment of Chronic Inflammatory Response Syndrome John E Whitcomb, MD
[40]https://www.survivingmold.com/shoemaker-protocol/mary-ackerley-the-brain-on-fire-the-role-of-toxic-mold-in-triggering-psychiatric-symptoms
[41] Shoemaker R, Hudnell D. A time-series study of sick building syndrome: chronic, biotoxin-associated illness from exposure to water-damaged buildings. Neurotoxicology and Teratology 2004; 1-18.
[42] https://www.survivingmold.com/legal-resources/publications/papers-by-dr-ritchie-shoemaker
[43] Biotoxin Pathway. Bruce Thomas, MD
[44] Ryan J. Wu Q. Shoemaker R. Transcriptomic Signatures in Whole Blood of Patients Who Acquire CIRS Following an Exposure to the Marine Toxin Ciguatoxin. August 8 2015
[45] TREATMENT OF CHRONIC INFLAMMATORY RESPONSE SYNDROME IN THE PACIFIC NORTHWEST, Linda S Goggin MD
[46]Chronic Inflammatory Response Syndrome (CIRS)Evaluation and Treatment, Bruce Hoffman MD
In 11-24-09, Micaine Seeley suffered a debilitating illness. Going from a healthy 24 year old that would weight train and run 5 miles every evening, to suddenly not being able to walk up the stairs without losing his breath, not being able to think clearly, having blurry vision, and suffering incredible fatigue which all happened instantaneously on his way home from work one day. Not knowing what was wrong with him, Micaine saw multiple doctors. Because he looked very healthy, his symptoms were multifaceted and could not be fit into a classical diagnosis he was labeled a hypochondriac, and just depressed. Once he had that label it was difficult for him to find a doctor that would take him seriously.
Disheartened by his experiences and out of financial resources Micaine decided to take a more functional medicine approach to his illness by researching and implementing things such as diet, nutritional testing, and supplementation to try to manage his symptoms. For the next few years his health went up and down but overall was getting slightly better due to this strategy until he moved into a new house. His health suddenly started to decline again. He once again got to the point where he didn't have the energy to just walk up and down the stairs. It seemed like years of progress reversed suddenly. Wondering why this happened Micaine remembered how the place he moved into was water damaged. Realizing that multiple places he lived in the past had water damage and they seemed to correlate to how he felt, he recalled a nutritional podcast he had listened to a few months prior. In the podcast Dr. Jill Carnahan said she became severely ill after being exposed to a water damaged building because of a rare genetic predisposition that affects 3% of the population.[1] When Micaine listened to that podcast for the first time, even though some of his symptoms sounded similar to Dr. Jill Carnahan's, he had just put that information in the back of his mind because he thought what are the chances that I'm the 3% of the population that has that gene?
Feeling desperate Micaine set out to see if this could be his problem. Having a lot of experience doing blood tests without a doctor by now, Micaine found a retail website where he could purchase a genetic test that would determine if he had the same genetic predisposition. Turns out Micaine had the same rare gene as Dr. Jill Carnahan, 4-3-53, & another gene, 17-2-52A, that made him susceptible to "biotoxins."
4-3-53 and 17-2-52A are HLA genes. HLA is short for human leukocyte antigen. “Leukocytes” are the white blood cells responsible for protecting your body from infection and foreign substances[2] and an antigen is a substance, toxins, bacteria, or foreign blood cells, that when introduced into the body stimulates the production of an antibody.
Dr. Ritchie Shoemaker discovered that there are some HLA phenotypes where they, usually after a priming inflammatory event,[3] have defective antigen presentation between the innate immune system and the adaptive immune system.[4] Dr. Keith Berndtson, a certified Shoemaker practitioner, describes the importance of the HLA genes in regards to the innate and adaptive immune system as follows: the innate immune system is a factory installed and ready to go the minute you’re born. Cells equipped with pattern recognition receptors are ready and waiting to respond to the presence of unfriendly toxins produced by the living things that our ancestors encountered during the long course of evolution. Toxins are then processed (in ways that depend on HLA genetics) and presented to naïve lymphocytes called T cells, the lead organizers of the adaptive immune response. The newly exposed T cells then teach B cells how to recognize and respond to the most recognizable toxin parts. If again exposed to the same toxin, your B cells will produce antibodies to hunt them down.[5] Lauren Tessier, another shoemaker certified partitioner, describes how this system can malfunction: however in those with susceptible HLA haplotypes, there is an error in the functioning of the adaptive branch of the immune system. The adaptive immune system should be able to appropriately process the biotoxin and then present it to other immune system cells. T cells awaiting “instruction” from the antigen presenting cell, will then pass on the information to B cells who will then produce the antibodies necessary to properly sequester and clear the threat from the system.
In people who are genetically susceptible, the process of presenting the biotoxin to the T cells has been rendered dysfunctional. Therefore, the antigen presenting cell continues to produce an abundance of inflammatory cytokines, effectively calling the immune system to attention, but ultimately unable to present the threat appropriately for necessary eradication. This results in the continual elevation of inflammatory cytokines, without resolution.[6]
This constant inflammatory state produced by the activated innate immune system led the discoverer of this dysfunction, Dr. Ritchie Shoemaker,[7] to coin the condition chronic inflammatory response syndrome or CIRS. In a 2013 paper, CIRS was described as a chronic, progressive, multi-system, multi-symptom syndrome characterized by exposure to biotoxins, HLA genetic predisposition, altered innate and adaptive immunity, peripheral hypoperfusion at multiple sites and multiple hypothalamic-pituitary-end organ dysregulations. This inflammatory dysregulation can affect every organ in the body and if left untreated, can become debilitating.[8]
Dr. Shoemaker found that a multitude of things like mould from water damaged buildings, tick-borne infections such as Borrelia or Babesia, dinoflagellates such as Pfiesteria or Ciguatera, blue-green algae such as cyanobacteria, multi-resistance coagulase negative staph, brown recluse spider bites[9]
Etc.. will produce biotoxins that can cause CIRS in those genetically susceptible people.
Certified Shoemaker practitioners explain the difference between a normal immune response and someone that is genetically susceptible to biotoxins, and what happens when exposed to them as follows: the innate and adaptive immune systems normally function together to remove these biotoxins from the body: immune pattern recognition by the innate immune system lead to antibody formation through a complex multi-step process. Antibodies bind to offending substances, leading to their clearance from the body. Clearance of offending biotoxins lead to cessation of innate immune system driven inflammation and people not getting sick from biotoxins. Genetically susceptible people, on the other hand, have a problem with the production of protective antibodies. So the toxin will be stuck in the body and will be detected by the innate immune system in a continuous manner, resulting in a chronic inflammatory response. This ongoing inflammation leads to recruitment of additional immune inflammatory pathways[10] causing multiple issues within the body including neuroimmune, vascular, and endocrine.[11] When this happens, the innate immune system shows signs of continuous but ineffective activation.[12] The constant release of inflammatory cytokinins are evolutionarily in place to aid the immune system in identifying a threat, recruiting the defense and eradicating the hazard. They were only ever intended to be raised for defensive purposes for a short period of time. When such inflammatory markers are chronically elevated we see the development of multi-symptom, multi-system complaints correlative with CIRS.[13] These cytokines damage leptin receptors which leads to reduced MSH, VIP and ADH production.[14] There are many other biomarkers that get dysregulated by this constant innate immune activation in CIRS including ACTH/cortisol, MMP9, VEGF, ACLA, AGA, TGF beta-1, C4a, vWF & MARCoNS[15] colonization. MMP-9, TGF-beta 1, VEGF, C3a and C4a are all cytokines that keep being affected endlessly. The role that they are meant to play in a healthy system gets subverted by the recurrent activation and diffuse, nonspecific symptoms develop that can’t be easily attributed to a specific organ system or local patterns of disease. Thus Dr. Shoemaker’s created a list of 37 symptoms that appear to have no coherent pattern comes into play and is not recognized by modern “disease-based” pattern recognition. Usually someone with CIRS is experiencing 15+ symptoms, it is not uncommon for that person to be labelled as having personality issues, mental health issues or simply called a variety of mystery diagnoses such as fibromyalgia or chronic fatigue.[16] In fact Shoemaker speculates that the neuroimmune, vascular, and endocrine dynamics present in CIRS may play roles in other forms of chronic illness including chronic fatigue syndrome (CFS), fibromyalgia (FM), post-treatment Lyme syndrome (PTLS), and multiple sclerosis (MS).
It is clinically suggested that patients reporting 6 or more of the symptom clusters be tested for CIRS.[17] Micaine had 21 of the 37 symptoms commonly seen in CIRS including chronic fatigue, weakness, pain, cramps, morning stiffness, impaired executive function, impaired cognitive function, reduced word finding, memory loss, impaired concentration, confusion, disorientation, mood irregularities, stomach issues, appetite irregularities, impaired temperature regulation, vertigo, blurred vision, numbness, and urinary frequency.
After discovering Micaine had the genetics and symptoms of CIRS he went on to test the blood biomarkers that get dysregulated in the illness. In CIRS there needs to be 5+ abnormal tests of the following 10 tests: (HLA, MSH, TGF-β1, MMP-9, MARCoNS, VIP, C4a, ADH/osmolality, ACTH/cortisol, ACLA/AGA) to be considered for diagnosis. Of those 10 test Micaine had 8 tests that were abnormal (HLA, MSH, VIP, VEGF, C4a, ACTH/cortisol, ACLA/AGA , & MARCoNS). Dr. John Whitcomb states, in adults, having 5 positives results in a specificity is 73.3%, positive predictive value is 97.7%, the likelihood by chance alone is less than 1 in 10,000,000,000.[18] This indicated to Micaine he was suffering with CIRS, which finally gave him the answer to the question, what is wrong with me?
While researching this illness Micaine discovered one of the most frightening effects of CIRS being that it can lead to Alzheimer's disease. When Dr. RJ Oenbrink DO claims CIRS manifests itself in numerous organ systems, leads to significant suffering and premature death[19] he's not being hyperbolic.
Dale Bredison, who in 2014 reported the first people with Alzheimer’s and pre-Alzheimer’s who’ve gotten better,[20] published a study called, Inhalational Alzheimer’s disease: an unrecognized—and treatable—epidemic. This study described how CIRS, mainly from water damaged buildings, was leading to Alzheimer's disease in genetically susceptible individuals. He states, here I report that type 3 Alzheimer’s disease is a phenotypic manifestation of CIRS. Both may present with cognitive decline that goes beyond a restricted amnestic presentation to include executive dysfunction and other deficits; as well as depression, hypozincemia, hypersensitivity to stress, and dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis.
After learning that CIRS can cause neurological damage, Micaine pursued getting a Neuroquant MRI to determine the severity of his illness. Certified Shoemaker practitioner Dr. Sandeep Gupta describes a Neuroquant MRI as a fascinating computer analysis of a standard non-contrast brain MRI done using a 3D T1 technique. This analysis can detect small changes in the sizes of brain organs that might be imperceptible to a radiologist. Based on the analysis, we can tell if the brain fits a CIRS brain.[21]
After getting his Neuroquant results back Micaine did a phone consultation with Dr. Ritchie Shoemaker. Dr. Shoemaker said in response to seeing his results "of the things I'd hate to lose my brain function would be the worst, and you're headed in that direction." Luckily the cognitive decline caused by CIRS can be repaired.[22] Dr. Dale Bredesen has even published reversal of CIRS type Alzheimer's by the effective treatment of CIRS.[23]
Unfortunately The treatment of CIRS is incredibly difficult and financially draining. Because CIRS is a recent discovery[24] the tests and treatment are not covered by insurance. Furthermore there are only 23 physicians certified in the Shoemaker Protocol.[25]
The treatment consists of an 11 step protocol.[26] The first step which is removal from exposure, shows how difficult this procedure is. Among the sources of biotoxins that can produce CIRS, biotoxins from molds known to grow in water-damaged buildings (WDB) account for some 80% of the CIRS-related illness burden. In the case of mold toxins, recovery depends on continual effort to avoid re-exposure.[27] Certified Shoemaker physician Dr. Lauren Tessier explains, when CIRS develops as a result of exposure to biotoxins in water damaged buildings (CIRS-WDB), either proper remediation or full avoidance is required.[28] This is the hardest and most difficult step to achieve according to Shoemaker certified Dr. Mary Ackerley.[29] The reason this is so challenging is because 50% of every home or building may be a source of exposure to biotoxins. The 2009 “WHO guidelines for indoor air quality: dampness and mould” states that based on studies done in the United States, the prevalence of dampness or mold in houses to be approximately 50%. In the United Kingdom, for example, 52% of owner occupied homes had dampness and 24% had mold, while 58% of lower income or rented homes were damp and 56% were moldy. Water damage or humidity high enough to initiate or maintain indoor microbial growth is very common.[30] When water damage occurs, mold can grow in as little as 24 to 48 hours and although water damage is probably the biggest concern, mold and other biotoxins can also develop in buildings that are not water-damaged but have indoor humidity levels above 50 to 60 percent.[31] Ritchie Shoemaker states, toxin avoidance goes beyond merely addressing home, school and work... Small, brief exposures may not trigger symptoms immediately, early in disease, but as one approaches the “sicker quicker” phenomenon (people that have been sick for a long time like Micaine 10 years), very brief exposures (measured in minutes) can lead to a profound worsening or re-activation of illness for days. Some patients are uniquely sensitive and can identify a WDB immediately. Some get headaches, others stomach problems and some “just don’t feel right”. Regardless of the symptoms, their bodies are telling them to avoid that building. I encourage my patients to listen to those warnings.[32] My particular HLA gene makes this situation worse as Dr. Whitcomb states, the “dreaded” HLA subtypes will be particularly sensitive to exposure. They have been misdiagnosed and misunderstood. They respond with extreme dysfunction when exposed. Sicker, quicker is their fate. This leads to an endless cycle of re-exposure to the toxin and reigniting of the innate immune system. Like an endless Ground-Hog day, there is no way to get out of the cycle. With activation of the innate system happening recurrently, the internal messaging system of the innate complex keeps being set into play.[33]
Micaine can usually determine if a building is harboring biotoxins within minutes after going into it. He instantly becomes disoriented, confused, his executive function drops even more, and is more fatigued than usual for the following couple of days. After going into his best friends townhouse he recommended he test his house because of how he reacted to it, the test showed that it was significantly elevated in multiple biotoxin producing molds. His best friend took Micaine's advice to test his HLA genetics based on some health concerns he had, and surprisingly had the same rare HLA gene and was suffering from the same illness.
To determine if a location is safe for someone with CIRS an ERMI test is used. The Environmental Relative Moldiness Index (ERMI) test was originally developed in 2006 by the Environmental Protection Agency (EPA). In contrast to air spore trapping tests, which can be rather hit or miss (usually miss), the ERMI is a Quantitative Polymerase Chain Reaction (QPCR) test of accumulated dust. It measures the DNA of dust samples from... molds, which are more toxigenic and associated with water-damaged buildings, and compares them to other molds.., which are not toxigenic.[34] A problem that arises with this test is because this test uses advanced QPCR technology, and there are so many things in a water damaged building that can cause harm, which must be tested for, the test costs $360.[35] That means every time Micaine goes into a place he has to either spend $360 or risk being exposed which stops treatment. Finding a new place to live or a new job can be incredibly costly especially considering 70% of the places he has tested so far haven't been safe for him to go into.
Micaine has spent the last 6 months trying to get past step 1 without success due to re-exposures. Some re-exposures have come from unlikely sources like his car. Even though it feels like a prison sentence he has accepted that during treatment he can't go into any building or home unless it has been tested.
Once Micaine has passed step one he has 10 more steps after that, and according to Dr. Sandeep Gupta those with a “dreaded” or multi-susceptible haplotype (the HLA gene Micaine has) often require more steps of the Surviving Mold protocol and find it more difficult to achieve remission than other haplotypes.[36] Moving on to each step usually requires testing and sometimesaq a drug. If he is exposed he goes back to step 1.
Micaine has exhausted every resource at his disposal including his savings, selling all of his possessions, and a very small inheritance he received after his dad passed away this last November to figure out his illness, and to get to where he is now. To add insult to injury, Micaine can no longer work in the career he began when he was 14 years old, growing saltwater corals, because the potential exposure to biotoxin producing dinoflagellates and cyanobacteria. Micaine had started two businesses during the 10 years while he was sick, both of which he had to give up when he moved into a very moldy house due to debilitating fatigue and cognitive decline. He has reached a point where the only option he has left is to ask for help. In order to get better Micaine will need to pay for blood tests, Shoemaker practitioner certified doctor visits, and medications.
Micaine believes one of the positive side effects of his suffering is being able to help others. Because Micaine never felt better after getting sick 10 years ago, he was always researching to figure out how to fix it. This allowed him to acquire a large body of information in regards to genetic polymorphism testing, diet/weight loss (Paleo and Ketogenic), testist vitamin and mineral nutritional status, methylation status, etc... Which he can share if someone wants to donate. He can also share his extensive knowledge of his illness CIRS. Even though this writing has focused on the so called "dreaded" genotype that Micaine has, roughly 25% of the population is genetically prone to develop CIRS if exposed to sufficient amounts of biotoxin,[37] it should be noted that roughly 24% of the population are susceptible to CIRS due to mold exposure, and 21% to Lyme inflammatory responses.[38] Meaning that the chance someone has or knows someone that has a health issues as a direct result to a water damaged building is quite high. Some of these people may have mild symptoms as level of exposure is sufficiently modest to not invoke full-fledged symptoms,[39] while others may be experiencing type 3 Alzheimer's described by Dr. Dale Bredesen. Psychiatrist Mary Ackerley, certified in the Shoemaker Protocol, describes how many of her patients are suffering mental health issues because of CIRS.[40] Because Micaine didn't have a Shoemaker practitioner that he could go to he had to learn how to do most of the testing himself and he would be able to pass that information along to rule out if someone's health issues are related to CIRS, and what steps are necessary to resolve it.
Micaine would also be willing to show anyone the criteria for a CIRS diagnosis including his labs, his HLA genes, his Neuroquant MRI results, his failed VCS test, and his out of range biomarkers. Because this is a new medical discovery it is understandable that there would be some skepticism that this illness is a real thing. Dr. Shoemaker has published an ABABA study providing evidence water-damaged buildings are causing sickness in susceptible people,[41] along with 35 published papers and articles in regards to CIRS.[42] Because Micaine is a very evidence based person and had been led astray by some doctors that were not as diligent with their diagnosis and treatments. Micaine also did a PAX gene analysis which of all the tests that can be done, this is the most cutting edge. Where HLA is a genetic test showing susceptibility; PAX gene analysis measures how strongly certain genes relative to biotoxin illness are expressed.[43] Pax Genomics measures mRNA and miRNA and can show aberrant nuclear DNA regulation of innate immune function, ribosomal and mitochondrial gene expression at the cellular level (discovered in a 2015 paper by Dr Shoemaker and James Ryan[44]). Additionally, serial testing after treatment has been shown to show improvement at the cellular level with the Shoemaker Protocol[45] with the return to normal function of ribosomal and mitochondrial gene expression,[46] which is Micaine's goal.
[1] https://youtu.be/4_8UOUsM_rY
[2] https://chriskresser.com/hla-b27-and-autoimmune-disease-is-a-low-starch-diet-the-solution/
[3] 5 Things You Should Know about Toxic Mold Illness by Chris Kresser, M.S.
[4] https://www.survivingmold.com/docs/Linkage_disequilibrium_in_alleles_of_HLA_DR.PDF
[5] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[6] Chronic Inflammatory Response Syndrome: Assessment & Management Lauren Tessier, ND
[7] Shoemaker R. Diagnosis of Pfiesteria-human illness syndrome. Maryland Medical Journal 1997; 521-523.
[8] (CIRS)Evaluation and Treatment Bruce Hoffman MD
[9] SURVIVING MOLD DOWN UNDER, A Guide to Implementing Dr Shoemaker’s 14 Step Mould Eradication Process in Australia, Dr Sandeep Gupta
[10] Syndrome acquired following exposure to Water Damaged Buildings [CIRS-WDB], Werner Vosloo ND
[11] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[12] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[13] Chronic Inflammatory Response Syndrome: Assessment & Management Lauren Tessier, ND
[14] A Walk Through the Biotoxin Protocol The Evidence-Based Way to Treat Chronic Inflammatory Response Syndrome Bruce Thomas, MD
[15] Shoemaker R, Maizel M. Innate immunity, MR spectroscopy, HLA DR, TGF beta-1, VIP and capillary hypoperfusion define acute and chronic human illness acquired following exposure to water-damaged buildings. 2008. International Healthy Buildings (conference peer review)
[16] The Approach, Diagnosis and Treatment of Chronic Inflammatory Response Syndrome John E Whitcomb, MD
[17] Chronic Inflammatory Syndrome: Assessment & Management Lauren Tessier, ND
[18] The Approach, Diagnosis and Treatment of Chronic Inflammatory Response Syndrome John E Whitcomb, MD
[19] (Shoemaker Protocol) Overview, RJ Oenbrink DO
[20] Dale Bredesen, The End of Alzheimer's: The First Program to Prevent and Reverse Cognitive Decline
[21] SURVIVING MOLD DOWN UNDER, A Guide to Implementing Dr Shoemaker’s 14 Step Mould Eradication Process in Australia, Dr Sandeep Gupta
[22] Internal Medicine Review- Intranasal VIP safely restores volume to multiple grey matter nuclei in patients with CIRS- April 2017 Shoemaker, R., Katz, D., Ackerley, M., Rapaport, S., McMahon, S., Berndtson, K., Ryan, J.
[23] Reversal of cognitive decline in Alzheimer’s disease Dale E. Bredesen1,2, Edwin C. Amos3, Jonathan Canick4, Mary Ackerley5, Cyrus Raji6, Milan Fiala7and Jamila Ahdidan8 & Reversal of Cognitive Decline: 100 Patients Dale E Bredesen1*, Kenneth Sharlin2, David Jenkins3, Miki Okuno3, Wes Youngberg4, Sharon Hausman Cohen5, Anne Stefani5, Ronald L Brown6, Seth Conger6, Craig Tanio7, Ann Hathaway8, Mikhail Kogan9, David Hagedorn10, Edwin Amos11, Amylee Amos12, Nathaniel Bergman13, Carol Diamond14, Jean Lawrence15, Ilene Naomi Rusk16, Patricia Henry16 and Mary Braud16
[24] Shoemaker R. Diagnosis of Pfiesteria-human illness syndrome. Maryland Medical Journal 1997; 521-523.
[25] https://www.survivingmold.com/shoemaker-protocol/Certified-Physicians-Shoemaker-Protocol
[26] Dr. Mary Ackerley_Discuss_the_Shoemaker_Treatment_Protocolv1.pdf
[27] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[28] Chronic Inflammatory Response Syndrome: Assessment & Management Lauren Tessier, ND
[29]Dr. Mary Ackerley_Discuss_the_Shoemaker_Treatment_Protocolv1.pdf
[30] Walk Through the Biotoxin Protocol The Evidence-Based Way to Treat Chronic Inflammatory Response Syndrome Bruce Thomas, MD
[31] 5 Things You Should Know about Toxic Mold Illness, by Chris Kresser, M.S.
[32] Dr. Shoemaker’s 11 Step Treatment Protocol 2/22/2013
[33] The Approach, Diagnosis and Treatment of Chronic Inflammatory Response Syndrome John E Whitcomb, MD
[34] A Walk Through the Biotoxin Protocol The Evidence-Based Way to Treat Chronic Inflammatory Response Syndrome, Bruce Thomas, MD
[35] https://www.envirobiomics.com/product/actinomycetes-plus-hertsmi-2/
[36] SURVIVING MOLD DOWN UNDER, A Guide to Implementing Dr Shoemaker’s 14 Step Mould Eradication Process in Australia, Dr Sandeep Gupta
[37] CHRONIC INFLAMMATORY RESPONSE SYNDROME, Overview, Diagnosis, and Treatment, Keith Berndtson, MD
[38] SURVIVING MOLD DOWN UNDER, A Guide to Implementing Dr Shoemaker’s 14 Step Mould Eradication Process in Australia, Dr Sandeep Gupta
[39] The Approach, Diagnosis and Treatment of Chronic Inflammatory Response Syndrome John E Whitcomb, MD
[40]https://www.survivingmold.com/shoemaker-protocol/mary-ackerley-the-brain-on-fire-the-role-of-toxic-mold-in-triggering-psychiatric-symptoms
[41] Shoemaker R, Hudnell D. A time-series study of sick building syndrome: chronic, biotoxin-associated illness from exposure to water-damaged buildings. Neurotoxicology and Teratology 2004; 1-18.
[42] https://www.survivingmold.com/legal-resources/publications/papers-by-dr-ritchie-shoemaker
[43] Biotoxin Pathway. Bruce Thomas, MD
[44] Ryan J. Wu Q. Shoemaker R. Transcriptomic Signatures in Whole Blood of Patients Who Acquire CIRS Following an Exposure to the Marine Toxin Ciguatoxin. August 8 2015
[45] TREATMENT OF CHRONIC INFLAMMATORY RESPONSE SYNDROME IN THE PACIFIC NORTHWEST, Linda S Goggin MD
[46]Chronic Inflammatory Response Syndrome (CIRS)Evaluation and Treatment, Bruce Hoffman MD
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