The inaugural ISEAI (International Society for Environmentally Acquired Illness) Conference “Healing Complex Patients in a Toxic World” was held at the beautiful CIVANA Resort just outside Phoenix, Arizona May 3rd – 5th, 2019.  It was a tremendously successful event with an amazing group of high-vibration people exploring solutions for environmentally acquired illness.  I look forward to the impact that ISEAI has on the patient community in the upcoming years.  Kudos to this amazing group for the impact they are having and will have in the future.

Disclaimer: Nothing in this text is intended to serve as medical advice. All medical decisions should be made only with the guidance of your own personal licensed medical authority.

Disclaimer: This information was taken as notes during the conference and may not represent the exact statements of the speakers. Errors and/or omissions may be present.

Note: As this information may be updated as any errors are found, I kindly request that you link to this single source of information rather than copying the content below. If any updates or corrections are made, this will help to ensure that anyone reading this is getting the most current and accurate information available.  

Prior to the main conference, ISEAI held a "Pre-Conference EAI Basics Course".

Peg DiTulio, APRN spoke on an "Overview of Environmentally Acquired Illness: Considerations In Diagnosing Illness From Exposure To Water Damaged Buildings" and shared:

  • Traditional causes of EAI include lead, allergies, insect-borne exposures, chemicals, asbestos, asthma, food allergies, Lyme, plant dermatitis, carbon monoxide, nosocomial hospital infections, MRSA.
  • Did not see eosinophilic esophagitis 20 years ago.
  • Elevated TGFb1 is seen in pulmonary fibrosis.
  • Lesser appreciated causes and consequences: MARCoNS, tick-borne infections, parasites, viruses, pulmonary hypertension, iatrogenic harm, POTS, EDS, dysbiosis/SIBO, mold and mycotoxins, chemicals, metals, pesticides, herbicides, EMFs, air pollution, MCS, MCAS, sick buildings, vagus nerve dysfunction, dysautonomia.
  • Sees EDS Type 3 in mold patients.
  • TGFb1 is related to autoimmunity.
  • Cipro now has two black box warnings.
  • The list of symptoms for EAI is long; impacts the CNS/PNS.
  • Need to have exposure to WDB on patient histories.
  • Children may present with only 2-3 symptoms with mold exposure.
  • Common physical findings in EAI include: inflammation leading to hormonal dysregulation and reduced oxygen supply, low ADH and fluid dysregulation common in mold, rashes, dry skin, dermatographia, stretch marks, impaired VCS, sluggish pupillary response, dry eyes, dark circles, facial weakness, rhinitis, scalloped tongue, gingivitis, tooth deterioration, nodular thyroid, adenopathy, abnormal spirometry, reduced VO2 max, increased PASP, muscle weakness/atrophy, shoulder girdle weakness, resting tremor, poor balance, Romberg's sign, tandem gate, cold hands/feet, hypermobility, echolalia, speaking gibberish, slowed speech.
  • Low testosterone and low DHEA may be observed in mold illness; improves with treatment; impacts muscle mass.
  • Resting fine tremor is common with high TGFb1.
  • Go slow and low with binders when still in a moldy environment.
  • Common neuropsychiatric signs: anxiety, fear, depression, anger impaired executive functioning, memory issues, inability to learn, distractable/inability to focus.
  • von Willebrand / Factor VIII - related to clotting/hypercoagulation - lower and higher not uncommon. Anticardiolipin antibodies may be observed. High dose fish oil can be helpful.
  • Takes as little as 48 hours for a stew of mold and other substances to form after water intrusion.
  • Mold spores are 1 to 20 microbes. Viruses are 0.004 to 0.1 microns. Mycotoxins are 0.1 to 0.3 microns.
  • Spores and mycotoxins can be ingested, inhaled, or absorbed dermally (through the skin).
  • 98% of mold toxins are free floating, dispersed in the air by vibration or air turbulence.
  • 50% of buildings are water-damaged.
  • Inflammagens consist of fungi, spores, fragments, mycotoxins, bacteria, endotoxins, Mycobacteria, Actinomycetes, VOCs, and more.
  • Evaluation consists of medical history, environmental history, occupational history, neurological testing, VCS, lab testing, MARCoNS, NeuroQuant, SPECT scan, pulmonary function studies, and cardiopulmonary stress testing.
  • Does the environment smell musty? If so, that's mold.
  • Risky buildings include visible mold, carpeted, HVAC poorly maintained, flat roof, high humidity, history of water intrusion.
  • High risk occupations include teachers, IEPs, plumbers, renovators, flippers, contractors, and electricians.
  • VCS is a great tool to show the extent of inflammation.
  • If treating mold and the VCS is not improving, look for other toxins such as metals and chemicals.
  • Labs
    • TGFb1 - Cambridge Biomedical - suppresses TRegs and raises risk for autoimmunity. Not to be run with LabCorp.
    • If SED rate is elevated, it may be unlikely that other pathways are elevated. Mold will not raise SED rate; though another concurrent condition could.
    • MMP9 - LabCorp or Quest - interferes with the blood vessels and blood-brain barrier.
    • C4a - National Jewish Hospital - false positives can occur with poor handling. Some draw correctly but do not handle the specimen correctly during transport.
    • C3a - Quest - acute Lyme. Can also be elevated if mold treatment improves the immune system such that it starts going after Lyme.
    • MSH - LabCorp or Quest - < 8 is a problem.
    • VIP - LabCorp or ARUP.
    • ADH/Osmo - not Quest, as it was replaced with Copeptin as a surrogate marker.
    • Copeptin - Quest - Vasopression surrogate marker.
    • Urinary mycotoxin testing can be done through RealTime Labs, Great Plains, or Vibrant.
    • IgE and IgG antibodies to mycotoxins can be explored.
    • Other markers may include VEGF, anti-cardiolipin antibodies, von Willebrand panel, ACTH/cortisol, testosterone/DHEA, CD4+/CD25++, HLA/Genie, immunoglobulins.
    • NeuroQuant is a brain MRI that looks at volumetric changes of brain structures.
    • Additional testing: ECG/stress testing, 24-hour event monitor, cardiopulmonary testing, tilt table testing, neuropsych testing.
  • If you have an HLA for Lyme, you can't clear Lyme when you are killing and need binders during treatment.
  • Multi-susceptible HLAs are at higher risk for MCS.
  • MARCoNS is a biofilm producer, destroys MSH, and people feel better with treatment.

Lauren Tessier, ND spoke on "Water Damaged Building Induced EAI: Initial Treatment" and shared:

  • It takes time to get sick and will take time to recover.
  • Step 1: remove exposure - internal or external.
  • Step 2: gut preparation - glutamine, RESTORE, AIP diet. Detox prep: drainage - PEKANA, UNDA such as 13, 20, 40, 243.
  • Step 3: Binders and glutathione, if tolerated
  • Step 4: Correct inflammation
  • With mycotoxicosis, steps 1-3; fungal infection, steps 1-3 + antifungals; mold allergy, steps 1-2; CIRS/EAI/chronic inflammation, steps 1-4.
  • Remove exposure - cornerstone, mandatory, unconfirmed needs IEP to explore, ERMI helpful, proper remediation. All treatment is contingent on avoidance. 
  • 90-95% of bile acids are recycled daily. Retox, retox. You are shooting yourself in the foot without binders.
  • Nrf2 is a protein in the cytosol; turns on GST and MPK2 shovels. Mycotoxins inactivate Nrf2 and glutathione production. MPK2 shells lead to toxins going back into the blood.
  • Protect the kidneys; CoQ10 can be helpful.
  • Binders technically "adsorb" or stick to, but do not "absorb" or pull in.
  • The pitfalls of binders include that they are non-specific, adherence can be difficult, dosage amount and schedule, taste and texture, GI discomfort.
  • Binders are best on an empty stomach 30 minutes before a meal (ideally with high fat) and 2 hours before medications or supplements. Take with lots of liquid.
  • Cholestyramine (CSM) has a positive charge. 4 grams four times a day may not be tolerated in some patients. Titrate. Pure resin preferred. Combine with Omega-3 to decrease potential for reactivity or flares.
  • KPU people have issues with arachidonic acid and may have problems with more Omega-3.
  • Welchol is 1/4 of the binding affinity of CSM. 2 tablets three times daily with food is common. Recently went generic.
  • Charcoal is a good option for trichothecenes; 2000 mg twice daily.
  • Clay is a good option for aflatoxin; 1 serving twice daily. MediClay.
  • Less commonly used binders may include chlorella, modified citrus pectin, zeolite, fiber, okra, and chitosan.
  • Okra has 16% of the binding capacity of Cholestyramine, but you get it from your food.
  • Support constipation if present and flow of bile.
  • Bile flow can be supported with oral CDP choline; get the toxins onto the bile acids.
  • Monitor fat soluble vitamins, cholesterol, medications, and trace minerals with binders.
  • Homeopathic cell salts can help with trace minerals.
  • The microbiota consists of the gut, nasal, and oral microbiomes. The microbiome mediates the immune system.
  • MARCoNS may be treated with EDTA/Silver, CSA tincture, botanicals, iodine, xylitol, Lactobacillus sakeii. No longer using BEG spray. Consider dental cavitations. Cats and dogs can be sources. When using nasal sprays, use the opposite-hand, opposite-nostril approach. MARCoNS might not be clinically relevant.
  • We may not have access to silver with the new FDA guidelines for compounding pharmacies. Some patients may be using OTC silver.
  • Probiotics may decrease mycotoxins in the gut. Mycotoxins decrease glutathione. Lactobacillus plantarum (aflatoxin), rhamnosus (aflatoxin), casei, Saccharomyces boulardii (ochratoxin).
  • Fungal colonization can definitely result in mycotoxin exposure.
  • Aspergillus and Candida may colonize the system.
  • Correcting inflammation is a key.
    • Omega-3 can help with binder reactivity, MMP9, low VEGF.
    • Curcumin TGFb1, MMP9, IL6 (mediates neuroinflammation)
    • CBD - MMP9, TGFb1; high levels decrease, low levels increase.
    • Berberine - TGFb1, MMP9, low ADH (Rhizoma Coptidis).
    • Scuttelaria - TGFb1, MMP9, low ADH.
    • Gingko - TGFb1, low ADH.
    • EGCG - MMP9, IL6, low TRegs, TGFb1, supports MPK2 via Nrf2.
    • Resveratrol - MMP9, TGFb1, IL6, low TReg.
    • NAC - MMP9, TGFb1; everyone should be on NAC. Also a biofim disruptor.
    • Glutathione - MMP9, TGFb1 depletes glutathione.
    • Melatonin - TGFb1, MMP9.
    • LDN - IL6, TGFb1, suppresses microglial activation.
    • VIP - TGFb1, MMP9, VEGF, MSH.
  • DNRS may be helpful for ADH as it is secreted by the limbic system.
  • Has found Synapsin to be very helpful for patients; she uses HB12 in Synapsin rather than providing more methyl donors via MB12.
  • Quest Fungitell Assay looks for Beta-D-Glucan in the blood.
  • Just like you don't take an inhaler away from an asthmatic, don't take a binder away from someone with environmental toxin exposures.
  • SBI Protect can be helpful for gut integrity and as a mycotoxin binder.
  • LabCorp offers testing for IL6.
  • VCS requires 20:40 better vision and no obstructive cataracts.
  • Vagus nerve may benefit from gargling, gagging, and singing.
Substance Reduces TGFb1 Reduces MMP9 Increases VEGF Increases MSH Reduces IL6 Increases ADH Increases TReg
Omega-3   X X        
Curcumin X X     X    
CBD X X          
Berberine X X       X  
Scuttelaria X X       X  
Ginkgo X         X  
EGCG X X     X   X
Resveratrol X X     X   X
NAC X X          
Glutathione   X          
Melatonin X X          
LDN X       X    
VIP X X X X      

 

Larry Schwartz, BSME, MBA, CIEC spoke on "Looking In On a Client/Patient" and on "Mold Propensity Index" and shared:

  • Looks for significant changes when coming and going from/to home, work, various rooms in the home, etc. If symptoms don't fluctuate, he may focus on specific issues without higher cost first.
  • Can do "boots on the ground" inspections or virtual inspections.
  • The goal is to create the safe environment to optimize health.
  • He has meters for VOC, formaldehyde, EMFs, laser particle counter, and others.
  • Spore trap testing is at the genus level, not the species level to get to specific mycotoxins.
  • Dust is a period of time even over many years vs. spore trap testing which is 5 minutes.
  • May need to invest in small particle cleaning to make the environment safe.
  • Has created a "Mold Propensity Index" algorithm to evaluate the potential for mold issues.
  • In his experience, the ERMI often comes up higher than it should and can have 1/3 false positive results.
  • Besides water damage, finds other high stress events, Lyme, etc. play a role in his clients.
  • If susceptible, many things can trigger someone to develop CIRS.
  • Group 1 molds on the ERMI are the ones that are more concerning.
  • The equivalent spores is a measurement of the number of DNA hits for the species; concentration.
  • Group 2 are the more common household molds.
  • The raw scores on the ERMI can provide great information.
  • He likes to add up the raw scores of the 5 species that are part of the HERTSMI-2 calculation. Then he adds the raw scores of all Group 1 molds including the HERTSMI-2 molds.Then he looks at the ratio of the sum of HERTSMI-2 raw scores to the sum of all group 1 raw scores. If the ratio is 5-15%, there may not be a lot of correction needed. If less than 1/3, that's generally a pleasing outcome. 1/3-2/3 is a range that he is nervous about. Higher is very concerning.
  • Higher ratios may be higher risk environments and may want to move and leave behind belongings.
  • He uses a cassette and a 2 square meter collection.
  • Mold Propensity Index is a questionnaire that looks at the exterior, roofing, external drainage, internal drainage, HVAC, plumbing, foundation, topography.
  • Crawl spaces are the number one worst problem; sump pumps are terrible.
  • Mycometrics and Envirobiomics offer ERMI.
  • Realtime Labs offers EMMA testing.

Sonia Rapaport, MD presented "The EAI Roadmap: How to Approach the Patient with Environmentally Acquired Illness" and shared:

  • ISEAI is 210 members strong.
  • Need perspective; look underneath what appears before us.
  • Cannot do protocol-driven care; too complex.
  • Need a holistic systems biology approach; understand the networks that form the whole are more important than the sum of the parts.
  • Genetics, external triggers, internal response/symptoms.
  • Interaction of genes to the environment or epigenetics; makes us who we are.
  • Respiratory tract is one of the most significant routes of entry.
  • External triggers can be through the skin, intestines, respiratory tract, urinary tract.
  • External triggers include damp buildings, infections (viral, bacterial, fungal), pollutants, toxins, VOCs, trauma, abuse, ACEs, EMFs.
  • Cell Danger Response persists abnormally; whole body metabolism is changed, organs are impaired, and chronic disease results.
  • Reactions can be by system. Nervous system involved in POTS, vagus nerve dysfunction, pain, cognitive function. Immunity in MCAS and autoimmunity. Hormones in fatigue,sleep, weight gain, urination. Mitochondria in fatigue and cognitive function. Psychological in anxiety, depression, concentration. "Boundaries, Detoxification, Elimination" in MCS, constipation, food reactions.
  • Cyclical amplification is when an external trigger leads to symptoms and a downward spiral. Where can you intervene to stop the downward spiral?
  • Mitochondrial dysfunction leads to dysautonomia. The autonomic nervous system (ANS) depends on good mitochondria.
  • EAI Severity model includes Category I, II, IIIA, IIIB.
  • Cateogry I can leave their home, get better, and are generally well.
  • Category II are more involved, have started the downward cycle, slower decline, tolerate treatment.
  • Category IIIA are incredibly sensitive, stuck in fight or flight, and have immune/nervous/endocrine system collapse.
  • Category IIIB have the addition of a psychological or cognitive component that interferes with their ability to get care; example where someone with OCD can take months to get on their supplement protocol.
  • The biggest predictor of healing is internal and external support network.
  • She stopped testing for HLA-DR about 2-3 year ago; there is no literature to support a correlation. The 1-5 types did not have low MSH. Did not correlate with symptoms or outcomes. How does it change treatment?
  • It is suggested that 24% of the population has predisposition to biotoxin illness using the HLA-DR assay; if you add them up, it is really 81% if you look at all of them and consider that each person has two.
  • Coxsackie and HHV-6 downregulate HLA expression; consider HLA epigenetics. TGFb1 downregulates HLA.
  • Testing is with VEGF, TGFb1, CD57, MMP9, thyroid function, Osmolality, ACTH/cortisol, MARCoNS, and urinary mycotoxins.
  • She mentioned a case that had done several prior interventions and then needed limbic system retraining and went from a wheelchair to playing basketball. 

Robert Naviaux, MD spoke on "Is It Safe To Heal? The Metabolic Features of the Healing Cycle and Recovery from Chronic Illness" and shared:

  • It is illegal to import Suramin without an IRB and and IND.
  • Autism is rising 2-10 fold since the 1980s.
  • His research can be followed at http://naviauxlab.ucsd.edu.
  • The health of the environment determines the health of the children.
  • Lyme, PANDAS, and Alzheimer's are next on their list to evaluate for patterns.
  • Ability to treat is not what makes disease different but what makes it similar to other chronic complex disorders; this is the window into treatment.
  • The search has been on pathogens. The recovery back is a different path; recovery is not the reversal of what got us there. It has a beginning, a middle, and an end. The CDR stages are supported by specialized forms of mitochondria.
  • Inflammation, proliferative/replacement, restoration - all have different mitochondria to restore health.
  • There are thousands of ways to illness; one choreographed process to regain health.
  • Do not see healing as the reversal of the path that led to disease but as the activation of the path that leads you to recovery.
  • When something is acute, you treat the injury. When the illness is chronic, you unblock the process of healing.
  • Cells have to use internal energy, internal materials, and internal analysis to create a healing cycle.
  • Would like to work towards treatments that support injury for time to heal, remove the support, support strengthening and recovery; need good food and sleep.
  • 90% of adults over 65 have at least one chronic illness today.
  • Metabokines are signaling molecules that control progression through the healing cycle. Extracellular ATP is a metabokine; one of hundreds.
  • Blocks in the healing cycle cause normal healing stages to persist abnormally and lead to a chronic illness.
  • Anti-purinergic drugs can help to restore healing.
  • Regulation of purinergic signaling unblocks each step and leads to healing.
  • CDR will burn until extracellular ATP is catalyzed.
  • Injury provides the fuel and stimulus for the healing cycle to occur.
  • If extracellular ATP is not metabolized completely, there is an incomplete progress of the healing process itself.
  • There are many cycles of injury and recovery throughout life; some cells are left behind with each cycle which leads to accumulation of dysfunctional cells.
  • When the body is under siege, organ systems begin to disconnect and can be in different stages of healing.
  • With military personnel receiving vaccines, if they were given in the middle of the combat theater, there was a much higher risk (20 fold) of coming home with Gulf-War Illness.
  • The pathway to illness is not the same as the pathway out.
  • He looks at global health using the health of the coral reefs as an indicator.
  • There is a shared core pathway in many chronic illnesses.
  • All neurotransmitters are metabokines.
  • All life, including plants, has a similar signal that leads to a danger response.
  • All stressed cells leak ATP.
  • Can we improve the cell by allowing it to keep the energy that it produces?
  • Suramin is the first of a new class of medicines not previously seen.
  • There are likely natural options in our rain forests and coral reefs but these have not been searched for.
  • Need to signal that the war is over and you can return to normal metabolism and use ATP for growth and recovery instead of starting endless wars.
  • Health is the use of metabolic pathways for growth and healing instead of for defense.
  • Most illnesses are a perfect storm of many things. It is not "this or that", but many things.
  • May need only a handful of treatments to help many different illnesses.

Neil Nathan, MD spoke about a "Step-By-Step Diagnosis and Treatment of Mold Toxicity" approach and shared: 

  • May need to treat MCAS and limbic system dysfunction before you move forward.
  • Anything you give, patients may not accept until they are "safer".
  • It is important to understand what each person needs and what they need first.
  • Treat the cause or causes, not the downstream effects.
  • All patients have mitochondrial dysfunction and methylation issues but treating these first may not be the right thing. "When" is important.
  • Treat each component when the body is ready to do so; timing is everything.
  • Learning where a patient is in the CDR model is key to determining appropriate interventions.
  • Concern about iatrogenic PTSD; being dismissed, not heard, or invalidated.
  • New models include CDR, Horowitz' MSIDS, Bredesen, and Biotoxin Pathway.
  • Mycotoxins are one of many different toxins in mold illness but are easier to evaluate with current technologies.
  • Mold is not creating enough toxin until it is in an indoor environment. You can have outdoor allergy, but not likely biotoxin illness from outdoor molds.
  • If you have mold, it weakens the immune system and predisposes one to Lyme; and vice versa.
  • The vast majority of MCS is triggered by mold and Bartonella.
  • Electrical dysthymia (EMF sensitivity) is often triggered by mold.
  • Mold makes everything worse.
  • Mold symptoms can be basically anything. It may look like Fibromyalgia, CFS, "atypical" MS/RA/Alzheimer's/Parkinson's.
  • Asthma and chronic sinusitis are big clues for mold.
  • "Atypical" anything is probably mold.
  • Psychological symptoms can include anxiety, depression, depersonalization, cognitive impairment, mood swings, OCD; think mold.
  • Electrical shocks, ice-pick pains, parasthesias in odd places, vibrations, resting tremor, increased sensitivity to everything.
  • Vibrations are often mold or Bartonella.
  • Mold illness is diagnosed with urine mycotoxin testing being at the top of the list.
  • VCS, Shoemaker labs, HLA-DR, and MARCoNS are not as useful in his work.
  • HLA-DR did not correlate to response to treatment.
  • Mycotoxin Labs include ELISA testing from RealTime, BioTrek, Vibrant and LC/MS from Great Plains.
  • LC/MS is more accurate and more specific.
  • Vibrant has 31 different mycotoxins including some that others don't yet measure.
  • When possible, he may do both RealTime and Great Plains and then repeat the one that showed something later if only one is positive.
  • Challenge testing can be important; 500mg liposomal glutathione twice daily for 7 days (or until not tolerated). Sweating, sauna, bath, or hot tub can be helpful provoking tools.
  • Stop all binders for 3 days before the urine collection.
  • The first test is the tip of the iceberg. The next test is 80% likely to be higher than the first.
  • On repeat testing, higher levels may be: re-exposure, improved detoxification, excessive binding, excessive killing or mold releasing toxins, or stimulating mold to make toxin.
  • No test measures mycotoxins from Wallemia.
  • MARCoNS - there is a 50/50 split on the value of testing and treating MARCoNS. He has not been impressed. It helps a few people, but is not a cornerstone of healing.
  • Can use binders while still being mold exposed; the binders can make one better but cannot make one well if still being exposed.
  • Most of his patients are colonized; mold is growing in the sinus and/or the gut.
  • Testing for mold can be done with plates, ERMI, or an IEP (indoor environmental professional).
Mycotoxin Cholestyramine Welchol Activated Charcoal Bentonite Clay Chlorella Saccharomyces Boulardii NAC
Ochratoxin X X X        
Gliotoxin       X   X X
Tricothecenes     X X X    
Aflatoxin     X X X    
Zearalenone       X   X  
Enniatin B       X   X  
Chaetoglobosin ? ? ? ? ? ?  ?

 

  • You should not push the dose to where you feel worse with a binder; you may become more toxic.
  • Use the binder based on the mycotoxin with the highest quantity on the urinary mycotoxin testing.
  • He uses binders once a day; 3pm or evenings.
  • Prefers lab-grown chlorella on glass and not pond scum.
  • Constipation is a roadblock for attempting to move toxin out of the body.
  • Low carb, low sugar. Diet matters. Keto is often preferred.
  • Is mold or mold toxin in food a significant issue? Research suggests not.
  • There is some in dried fruit, aged cheese, mushrooms, coffee, beer, wine, processed meat, tomatoes, and fermented foods.
  • Does food impact urinary mycotoxin tests? In some patients, this may occur, but not likely in the vast majority. We need to put away the idea that the tests are useless because of food exposure as that is not the case. More will be published on this shortly.
  • 10% of his patients improved with binders and environmental avoidance. 90% required addressing colonization to improve.
  • No longer uses BEG spray. May use "BE" spray or other options.
  • Some probiotics could be helpful such as Lactobacillus rhamnosus or casei or plantarum for aflatoxin.
  • Not sure that fungal resistance is a concern with long-term use of antifungals.
  • Some people are both mold allergic and mold toxic.
  • Glutathione is the end product of methylation; exogenous glutathione can tell the body that it no longer needs to methylate.
  • IV PC is a superb intervention for many patients.
  • LDI and Transfer Factor ENVIRO can augment treatment.
  • Beyond Balance TOX-EASE GL or PEKANA RENELIX and ITIRES are helpful detoxification support options.
  • DNRS can be a superb intervention.

Joe Brewer, MD spoke on "Mold and Mycotoxin Clinical Update: Role in Chronic Illness" and shared:

  • He prefers the term "damp buildings" as that's what they are, and this is a term found in research.
  • Chaetomium toxins are as bad as trichothecenes.
  • Gliotoxin is predominantly from Aspergillus.
  • Mycotoxins are directly toxic and immune suppressive. They can trigger immune activation and MCAS.
  • Sinuses are a common source of ongoing exposure to mycotoxins.
  • Everyone has mold in the sinuses but not everyone has mycotoxin-producing molds in the sinuses.
  • Almost all bacteria and fungi make biofilms.
  • Uses a systemic antifungal, intranasal antifungal, and a biofilm agent in his protocol.
  • Gentamicin has now been removed from "BE" spray.
  • Relapses are seeing regularly, and duration of treatment is unknown.
  • Colloidal silver is broad-spectrum and addresses many bacteria and molds including spores.

Janette Hope, MD spoke on "A Review of Treatments for Mold Exposed Patients - What the Literature Shows Us" and shared:

  • Fermented foods are good and familiar.
  • Sauna use is inversely related to Alzheimer's disease.
  • Patients really like ozone and she suspects EWOT as well.
  • 3.5 times less caffeine is absorbed from a coffee enema than oral coffee.
  • Tri-Salts work well for people and can lead to big improvements at a low cost.
  • LDA can be helpful as a desensitization option.

Michael Schrantz CIEC, CMI, BPI-BA/EP spoke on "Fundamentals of Environmental Assessments and Remediation" and shared:

  • Diffusers are at times a concern. Some have saturated their environment with essential oils so much that they they could not tolerate the environment.
  • We live in boxes for shelter. Toxins build up in the home.
  • Carpets and rugs are not a good idea.
  • EMFs - Jeremy Johnson - no one knows the magic level of exposure that is safe.
  • Often looks at indoor and outdoor comparison for what is abnormal.
  • Stachybotrys, Chaetomium, and specific Aspergillus and Penicillium species are "indicator molds" for a potential problems in the environment.
  • Many tools and sampling techniques are used.
  • It is important to have critical thinking skills and understand the limitations of each type of sample.
  • Killing is not the solution; removal is the solution.
  • IEPRadio.com

Mary Ackerley, MD spoke on "Treatment-Resistant MARCoNS" and shared:

  • Dogs and cats have MARCoNS.
  • Staphylococcus epidermidis is the most frequent bacteria colonizing the skin.
  • No studies directly link treatment of MARCoNS to CIRS.
  • No research shows that biotoxin illness increases the prevalence of MARCoNS.
  • No research shows that MARCoNS treatment shortens recovery.
  • Treating MARCoNS has not been seen to increase MSH.
  • Many clinicians test and treat automatically when they hear mold.
  • A number of patients reported that it was the most significant part of their progress. Could it be that they are treating chronic sinusitis?
  • Coagulase negative staph is not linked to any symptoms.
  • Coagulase negative staph may play a protective role in protecting us from other staph or other bacteria.
  • There is research on MARCoNS and facial pain.
  • A patient with trigeminal neuralgia improved the pain with lidocaine; the tooth had staph epi.
  • Bacteria and fungi are associated with neurodegenerative diseases and Alzheimer's; staph is higher than controls.
  • In ALS, fungal neurotoxins were found in the brains. Recently, bacteria were found as well.
  • Coagulase negative staph is a gram positive and may open the blood-brain barrier. Treating may remove the trigger and close the blood-brain barrier.
  • Household partners share their staph.
  • Had a couple with MARCoNS that did many treatments and failed; dental treatment led to improvement.
  • Creating Vancomycin-resistance can lead to death.
  • Did see a positive response to BEG in 2012-13; now seeing much more resistance. It has been blamed on antifungals but has been observed in those using BEG only as well.
  • With EDTA/Silver spray, 50% clear in 1-2 treatment rounds; it is also not immune from resistance. Silver resistance is possible. Has seen Vanco intermediate.
  • In 13 people, 62% were positive for dental MARCoNS.
  • Cavitation treatment with surgery or ozone led to another patient feeling better after intervention.
  • No longer uses BEG spray.
  • Compounding pharmacies can no longer mix silver.
  • Goes to the herbals very quickly now including CSA Formula and Biocidin which work equally well.
  • Lactobacillus sakeii is another new tool in the toolbox.
  • The nasal biome is part of the microbiome and is an emerging field; what is the nasal biome?
  • Optimize the nasal biome instead of carpet bombing the intruders.
  • Would like to see Researched Nutritionals create a transfer factor for MARCoNS.

Some points from the Day 1 Q&A session included:

  • Dr. Brewer mentioned that Candida auris is more of a hospital setting concern and not a big problem for most of us so far. For ill patients in a hospital in ICU, it is a bigger concern.
  • Dr. Naviaux was asked about supporting the mitochondria in those with CDR. He responded that the stage of where the patient is in the healing cycle matters. If the patient is in the right stage, there can be surprising benefits from mitochondrial cocktails. If not, they may not do much.
  • Since Welchol has become generic, it is Dr. Ackerley's favorite binder.
  • Dr. Rapaport has found diatomaceous earth to be a good binder and also supportive for parasites. Homeopathic Carbo Veg is homeopathic activated charcoal.
  • Dr. Brewer tends to combined EDTA with antifungals now.
  • Air filters mentioned by Mike Schrantz were Austin Air, IQAir, Molekule, and Air Oasis. Focus on filtration of the whole house first. These are effective at removing chemicals; takes a village. There is a difference between portable units and whole house filters. Filtration first, purification second.
  • Dr. Ackerley pointed out that companies that value their employee's brains make sure that the workers have clean air.
  • Dr. Ackerley shared that many have used VIP that were MARCoNS-positive and had no incidence of adverse effects other than the VIP may not work as well; it is not a side-effect reaction.
  • Fluconazole does not work for molds; works for Candida.
  • Dr. Naviaux noted that EMF sensitivity is highly individualized; not just related to the voltage-gated calcium or ATP channels.
  • Dr. Ackerley mentioned that black mold can lead to black thoughts. Stachybotrys may be directly killing neurons.
  • Dr. Ackerley likes DNRS for her patients and suggests getting a DNRS coach.

Joseph Burrascano, MD spoke on "Tick-Borne Diseases: New Information To Help You Manage Your Patients" and shared:

  • Persisters form with inadequate treatment.
  • We want to both treat and prevent persisters.
  • Relapsing Fever (TBRF) Borrelia plays a big role. TBRF is more of an issue than previously thought. Presents clinically like Lyme but does not always have a migratory presentation. More GI complaints and anxiety than Lyme.
  • IGeneX ImmunoBlot can test for 7 different TBRFs; different than the Western Blot.
  • There are no cross-reactivity issues with the ImmunoBlot such as what we had with the prior Western Blot with band 31 and viruses.
  • Can get an EM-rash with TBRFs and 2/3 will be positive with the ImmunoBlot at the time of presentation.
  • There is no reason to do a Western Blot anymore.
  • The Borrelia culture was initially created by Alan McDonald and Eva Sapi and later was available through Advanced Labs. The lab was sold to IGeneX, and they are currently developing the next generation of the culture.
  • The culture will be a feedstock for many different organisms.
  • Sensitivity of blood PCR testing is at best 30%.
  • Borrelia is sensitive to oxidative environments; needs strong antioxidants to grow. In the lab, they have to get the air out and put antioxidants in to let Borrelia grow; it does not grow without it. Sensitive to oxygen. Some relapsing fevers are not sensitive. He suggests not using strong antioxidants; don't add more.
  • "Chronic Lyme Disease" is too vague. "Post-Treatment Lyme Disease Syndrome" is a problem as there is persistence of infections. "Persistent Symptoms Related to Borrelia" or PSRB is another proposed term.
  • Have not been able to demonstrate an autoimmune connection to Lyme. It has auto-inflammatory features drive by the Borrelia that are still there. There are no lingering, dead Borrelia.
  • T-cell response waxes and wanes with the degree of infection activity.
  • The culture is the gold standard and not available yet.
  • Persisters form after antibiotic therapy when not all Borrelia die. They shift to an altered metabolic stage but are still antigenic and later revert to active growth.
  • Treating persisters is with long-term antibiotics, anti-persister medications, and cyclic therapy.
  • Persister regimens include Daptomycin which attacks the membrane and not the cell wall. May add Doxycycline, Clarithromycin, or Azithromycin. May add a cell-wall drug such as Cephalosporin, Monobactams, or Carbapenems.
  • Stevia works in vitro well; in patients, it may not work.
  • Antibiotics alone will not get rid of Borrelia; keep the herbals going after treatment to avoid a relapse.
  • Oxidative therapies are of value.
  • Sauna and hot tubs may help; many Borrelia live in the skin; hot tubs are better to get heat to the skin.
  • Multivitamins, Transfer Factors (minimize autoimmunity), mitochondrial support (always add NT Factor, NADH, CoQ10, etc.).
  • Will not get completely well without exercise.
  • Disseminated Lyme is a neurological disease. 70% or more with Lyme have CIDP or demyelination.
  • He is working on a study using skin biopsies to see small nerve demyelination.
  • 100% have neurological dysfunction and damage to the nerves; clearing in 80% with IVIG.
  • Treat with IVIG and antibiotics concurrently.
  • Most long-term Lyme patients have yeast overgrowth; getting rid of oral yeast makes a big difference.

Richard Horowitz, MD spoke on "Why Can't I Get Better? The Horowitz 16-Point Differential Diagnostic Map" and shared:

  • There are many different Borrelias, Bartonellas, and Babesias.
  • Babesia duncani is now spreading across the US.
  • Bartonella plays a huge role; almost 50% of patients.
  • Persister drug regimens work well for Lyme; his wife is 2 years in remission with not one symptom.
  • He has been exploring the use of Mycobacterium drugs for Lyme with outstanding results.
  • There is persistence of Bartonella, Babesia, Brucella, Tularemia, Mycoplasma, and HHV-6.
  • Viruses are playing a role that is not often talked about.
  • Lyme is the only thing in the medical literature that causes migration neurological symptoms such as numbness, tingling, and burning.
  • Primary sources - chronic infections, GI dysbiosis, leaky gut/food reactions, sleep disorders, environmental toxins, and nutrient deficiencies.
  • The downstream effects can be endocrine, neurological/neuropsych, dysautonomia/POTS, mitochondrial, pain, liver, autoimmune.  
  • 40% of patients had POTS.
  • Clostridia in the gut can lead to creation of proprionic acid as seen in autism.
  • EM rash occurs in less than 20% of patients.
  • A score of over 63 on his MSIDS questionnaire is 2 standard deviations.
  • Neuropathy observed in 94%. Other issues included cognitive dysfunction, musculoskeletal pain, fatigue, dysautonomia, cardiac issues, respiratory issues.
  • If in a wheelchair with Lyme or mold, do sitting and standing blood pressures; over 1/2 now walking with treatment for POTS.
  • IgM Western Blot is a chronic Lyme marker; IgG observed only 10-11% of the time.
  • Bands 23, 31, 34, 39, 83-93 are Borrelia-specific.
  • Babesia FISH is positive 37% of the time when no antibodies are present.
  • Q-Fever observed in 9%, Tularemia in 16%, Ehrlichia/Anaplasma in 14%, Bartonella in 47%, Brucella in 10%, Chlamydia pneumonia in 51%, Mycoplasma in 82%, Babesia in 52%, HHV6 in 81%.  64% have 5-8 coinfections.
  • IR3535 or Avon Skin So Soft is safe as a tick repellent.
  • There is now more Babesia duncani than microti. Resistance is now seen to Mepron/Zithromax.
  • Bartonella and Babesia are the biggest challenges to get rid of.
  • 16 Points:
    • Coinfections
    • Immune Dysfunction - 21% are IgG deficient, 19.3% IgM. 86% have combined IgG subclass deficiencies. Borrelia knocks out part of the lymph nodes that create IgG which is required to recover. IVIG can be very helpful in infections, neuropathy, POTS, and autoimmune encephalopathy.
    • Inflammation - 70% have one or more elevations in several different markers.
    • Toxicity - 60% high in mercury, lead. Mercury has the same symptoms as Lyme. Mold - 71% had 1 or more elevations in urinary mycotoxins in those suspected of mold. 100% had gliotoxins which are immunosuppressive.
    • Allergies - histamine. His wife stopped migraines with a low-histamine diet. Delayed food sensitivity testing.
    • Nutritional/Enzymes - RBC copper, magnesium zinc.
    • Mitochondrial Dysfunction - reason not responding is probably in early CDR state. Tetracyclines impact mitochondrial function. They now do mitochondrial regeneration at the end of treatment.
    • Psych Disorders - 77% experience depression; 67% anxiety.
    • Neurological Dysfunction - 94% had neuropathy
    • Endocrine - 61% thyroid, 72% adrenals. Clomid/Arimidex can help low testosterone.
    • Sleep Disorders - 12% had sleep apnea; Novasom can be done at home.
    • ANS/POTS - over 40%. Vagal nerve dysfunction. May need to use drugs for POTS; Midodrine and others.
    • GI Dysbiosis - 22% had Candida, 18% parasites. Babesia impairs ability to clear other parasites; will see rope worms over and over.
    • Liver Dysfunction - can be the result of Ehrlichia, Anaplasma, RMSF (Rickettsia).
    • Pain
    • Deconditioning
  • Dr. Horowitz is part of the Tick-Borne Disease Working Group
  • Has used Stevia, Oregano Oil, and Biocidin as biofilm busters.
  • May use Doxycycline, Rifampin, Dapsone, Pyrazinamide combos.
  • With Dapsone, focus is to prevent "HARM" which is Herxheimer, Anemia, Rashes, and Methemoglobinemia. Can have side effects that require close monitoring.
  • Believes that Bartonella may be the cause of Behcet's.
  • Recent article has discussed the role of methylene blue in Bartonella.
  • Rifampin has an effect on biofilms.
  • He hardly ever uses IV drugs anymore.
  • Greenwood Herbals has formulas such as Herxing Compound which contains smilax and other herbs.
  • Xymogen IG 26 can increase DAO.
  • 2/3 of kids on the autism spectrum improve with broccoli compounds.
  • 95-98% success rate with his latest protocols.

Michael Gray, MD spoke on "Clinical Environmental Toxicology" and shared:

  • Aflatoxin has been found in the livers of those with Reye's syndrome.
  • Actinomycetes is found in damp environments.
  • Aflatoxin was found in breast milk in one case at very high levels 8 years after having left her moldy home.
  • Mycotoxins poison cellular respiration by poisoning mitochondria; they threaten to extinguish life.
  • Cumulative organic chemical hypertoxicity is a cause of CFS, immune suppression, hyperactivation, endocrine disruption, neurotoxicity, toxic encephalopathy, reactive airway, Fibromyalgia, MCS, multi organ system inflammation, and Post Lyme Syndrome.
  • Having 12% of T Cells being NK cells is normal; only 7% in WDB.
  • 85% of malignancies are caused by chemical carcinogens.
  • Fibromyalgia is an illness of chemical hypertoxicity.
  • Toxic encephalopathy is the cause of most neurological disorders.
  • Increase in anti-myelin antibodies is seen in water-damaged building patients.
  • MS is a disease of toxic poisoning; mycotoxins and other pollutants.
  • Removing toxins is not the job of the immune system; CYP450 and glutatione are involved in detoxification. High glutathione deficiency is observed.
  • 24% of the population is susceptible; HLA distinguishes between the multi-susceptibles and less susceptible.
  • Multi-susceptibles may need sequestrants (binders) for life.
  • Thoroughly impressed with Annie Hoppers work in these patients.
  • Newborns have an average of 287 measurable poisons.
  • He starts with mold plates; $2.50 a piece from Fisher Scientific.

Kelly McCann, MD spoke on "Diagnosis and Treatment of Environmental Toxicants" and shared:

  • Toxins are produced by living organisms; others are more correctly termed "toxicants".
  • Individuals with high ANAs had more PCBs.
  • Regular nail polish leads to a 10-fold increase in risk of Lupus.
  • Toxicants cross the blood-brain barrier and stay in the brain if fat soluble.
  • Obesigens cause weight gain by activating PPAR-gamma and leading to fat accumulation.
  • PCBs can be found in sardines, farmed salmon, and non-organic butter.
  • There are 100 million undiagnosed diabetics and pre-diabetics; correlated with persistent organic pollutants (POPs); not sugar consumption.
  • Endocrine toxicity can be from POPs, phthalates, arsenic, and other toxins.
  • Lye and mold can cause low testosterone; phthalates, BPA, toxic metals, PFOS, PBDEs.
  • Testosterone levels have been dropping by 1% per year. Average now for a 40-year old has dropped to the 400s.
  • PBDEs are competitive inhibitors for thyroid receptors.
  • Memory foam in mattresses and pillows can lead to solvent toxicity.
  • Think Dirty App - https://www.thinkdirtyapp.com
  • GGT - cheap test; enzyme that breaks down glutathione and can be an indirect measure. Higher GGT equals lower glutathione.
  • WBC is 3.8 is toxicant exposure; think solvents.
  • High homocysteine can be a maker for lead.
  • Thyroid dysfunction can be a toxicant burden.
  • High reverse T3 can be metals, PCBs, and a general inability to detox.
  • High cholesterol can be toxicant burden.
  • Depuration - reducing total toxicant burden.
  • Recommends sauna to everyone; helps with mycotoxins.
  • Cannot remove PFOS and PFOA with sauna.
  • 4-5 times sauna per week leads to 65% less chance of dementia.
  • Many toxins are fat soluble and have to enhance the dumping of fat soluble toxins in the GI.
  • Olestra was helpful in Pringles but no longer available. Use to suggest for patients.
  • Orlistat, Wild Yam, Ginseng, and green/black teas.
  • Binders - Cholestyramine, Colestimide, activated charcoal, rice bran, chlorophyll, chorella, spinach.
  • Cholestyramine can help with some environmental toxins.
  • Treatment for solvents - taurine, SAMe, IV glutathione, NAC, R-Alpha Lipoic Acid, glycine, glutamine.
  • Colon hydrotherapy can be incredibly helpful.
  • Favorite supplement in the world is PC; it sits on every cell membrane.

Lyn Patrick, ND lectured on "Toxic Metals Testing" and shared:

  • Heavy metals can activate human mast cells.
  • Gadolinium can be from medical scans, cobalt from metal implants, thallium from fracking (often used as irrigation water), cesium from Fukishima, aluminum from antacids and vaccines.
  • Titanium and gold are not inert.
  • Number one toxicant is arsenic; carcinogen and endocrine disruptor.
  • Fish is a source of mercury but not in as high a quantity as amalgams.
  • She asks them to stop eating fish if detoxing mercury; shellfish have cadmium and arsenic. Sardines have PCBs. Anchovies are probably the cleanest.
  • Processed foods are another common source of mercury exposure; HFCS (corn syrup), sodium hydroxide - byproduct is contamination with inorganic mercury.
  • Amalgam is elemental mercury. Fish is organic mercury. Amalgam and HFCS are inorganic. 
  • Reverse osmosis gets chromium 6 out of water.
  • Mercury can be a reason for elevated reverse T3.
  • Leading cause of gout in women is arsenic; lead in both sexes.
  • Cadmium is the sleeper toxic metal that nobody knows about; osteotoxic (bone), renal toxic. Strongest xenoestrogen of any toxicant we are currently exposed to. Involved in periodontal disease.
  • Lead can be found in wine and around gun shooting.
  • Mercury is found in tattoos (red), compact florescents, polyvinyl chloride shoes, living near a crematorium.
  • TOXMAP - https://toxmap.nlm.nih.gov/toxmap
  • Metals are stored in organs, not in fat.
  • Thyroglobulin and TPO antibodies can be correlated to mercury; ANA as well.
  • Lichen planus can be related to mercury.
  • Blood metals are for acute poisoning or food exposure.
  • Toenail excretion of metals correlates to body burden.
  • Brassica plants will uptake thallium really well and can be a source of exposure; confirmed by Doctor's Data.
  • Radiologists found gadolinium scans lead to magnetizing of the brain; can be chelated.
  • Thallium was not seen 5-10 years ago; extremely toxic.
  • Renovation of homes from prior to 1978 can lead to led exposure.
  • 400,000 people in the US die each year from lead toxicity. Labs say 10 and below is safe; reality is 2.3 in an adult and 1 in a child.
  • Mercury is the Asian population is very high from high fish consumption.
  • Whole blood lead level is recommended.
  • As we age, we become our own source of lead from breakdown of the bones.
  • Chelation would take 50 years to address lead if you don't stabilize bone loss.
  • Amalgam and air pollution mercury need urine testing.
  • Organic mercury from fish and vaccines; comes out in the stool; measured in blood. Inorganic from HFCS, skin lightening creams.
  • Only organic mercury is found in the hair.
  • Arsenic you don't chelate; has a 10 hour half life. It is out of the body in 50 hours if you find the source, stop it, and methylate.
  • Non-organic chicken has arsenic from a substance that makes them diabetic. 

Michael Schrantz CIEC, CMI, BPI-BA/EP spoke on "It Takes A Village: Building an Effective Network of Professionals for the Clinician and Patient" and shared:

  • ISEAI is working to build a network to help people inspect and remediate environment in a way that promotes healthier environments.
  • IEPs can help to prioritize exposures and give recommendations that will make the biggest difference.
  • Find an IEP and have them fill out an interview form to have ISEAI vet them and see if they understand to the level needed for someone with CIRS.
  • Find ISEAI Professionals at https://iseai.org/find-a-professional
  • May be able to find IEPs at https://www.acac.org/find/database.aspx

Some points from the Day 2 Q&A session included:

  • Dr. Carnahan mentioned that coconut oil increase transport of LPS (not a good thing). Olive oil is a better choice instead of coconut oil. Glutamine can convert to glutamate. (Sadly, I was unable to attend her talk as it was during the lunch and had to step away.)
  • Dr. Burrascano was asked about Bartonella testing. He suggested sensitivity of Galaxy is 20-30%, IGeneX 35-40%; none of the available tests for Bartonella are great. Mentioned ArminLabs T-cell testing.
  • Dr. Horowitz suggested that VEGF testing has been useful for Bartonella. Bartonella FISH also helpful. There are 36 different species.
  • Dr. Burrascano recommends PCR or FISH for early infections and serology or Western Blot for later.
  • Dr. Gray uses 2 teaspoons of clay in 1 liter of fluid; too much clay can lead to small bowel obstruction. A teaspoon of clay has a surface area of an acre.
  • Michael Schrantz discussed dust collection. If one cleans weekly, sample at the end of the week, but may not be enough time; ideally wait 4-6 weeks. 3 feet or higher off the floor. Sample low impact area items not touched a lot such as the top of a door trim, entertainment center, door frames, ceiling fans). Based on an 18 square foot collection area.
  • Dr. Horowitz suggested that sexual transmission is questioned. It is possible, but Lyme is in the lower numbers; happens on occasion but not commonly. Lyme, Bartonella, Babesia, Rickettsia can all be transmitted to a fetus during pregnancy.
  • Dr. Burrascano mentioned that illness from a tick bite has a different presentation; non-tick exposures lead to milder illness.
  • Dr. Horowitz does not find CD57 helpful as it can be impacted by many things including mercury, HIV, and others.
  • Dr. Horowitz mentioned that treatment with Cephalosporin during pregnancy seems to lead to healthy babies.
  • Dr. Horowitz noted that Bartonella may be tied with inflammatory breast cancers.
  • Dr. Patrick finds tremendous correlation with non-provoked urine testing and whole blood to body burden. 

Annie Hopper spoke on "The Brain, Chronic Illness, and Limbic System Rehabilitation" and shared:

  • She did not recover her own health after many different treatments and therapies.
  • She was homeless as she could not live in her apartment due to EMFs.
  • Limbic system categorizes safe vs. unsafe and assigns a threat level.
  • With limbic system impairment, the filtering process becomes impaired.
  • The limbic system consists of the amygdala, hypothalamus, hippocampus, and cingulate cortex.
  • Causes for limbic system impairment include: mold, bacteria, chemicals, viruses, physical or emotional trauma, EMFs; generally the perfect storm.
  • It is important to ensure that the home and workplace are healthy; this is not a psychological illness; it is not in your head.
  • The program is taught from a platform of common sense environmental awareness.
  • Common issues include CFS, Fibromyalgia, MCS, Lyme; can all have a limbic system impairment component.
  • Limbic system impairment is like having a highly-sensitive security system that has gone awry.
  • The longer your brain is stuck in fight, flight, or freeze, structural changes occur in the brain.
  • The initial trauma activates inflammation and impairs the limbic system leading to a protective and distorted stimulus.
  • This leads to more stress hormones and limbic system priming (less and less stimuli become needed to provoke a reaction).
  • The vagus nerve takes cues from higher up about levels of safety.
  • Cell danger response - there is a feedback loop between the limbic system and CDR; brain and body.
  • Touch, taste, smell, light, and sound all become triggers for greater reactions.
  • We have an exaggerated negativity bias, intruding negative thoughts, focus becomes safety and survival, preoccupation with real or perceived threats.
  • Talk therapy reinforces the trauma loop.
  • What we feed the brain will grow.
  • The five pillars of DNRS include:
    • Recognition of limbic system impairment
    • Identify and interrupt pathways of the past (POPs)
    • Complete full rounds for 1 hour per day (visualization, NLP, creates a context for safety for the brain; stops the release of chemicals associated with a maladapted stress response).
    • Incremental training - a form of neural shaping
    • Elevate your emotional state

Mary Ackerley, MD spoke on "Brain on Fire: Assessment and Treatment of Environmentally Acquired Neuroinflammation" and shared:

  • The brain takes a major hit in inhalational toxicity.
  • Neuroinflammation can progress to neurodegeneration.
  • Limbic system rehabilitation can be a great tool and correlates to her observations with the NeuroQuant MRI.
  • Severity Assessment include:
    • Level 1 - basically well, usually easiest to get back to baseline
    • Level 2 - slow decline, multiple issues such as mold and Lyme, tolerate treatments
    • Level 3 - neurological, psychological, hypermobility, dysautonomia, often adverse childhood events (ACEs).
  • 37 mold symptom cluster chart - anxiety and insomnia in close to 100%. 1/2 of the symptoms are related to the brain and autonomic nervous system.
  • Dr Theo has said that mold patients always do worse on 16 different cognitive studies.
  • Mold rage has become a common issue.
  • Crippling OCD; even around how to implement treatment interventions.
  • Visual hallucinations are an organic issue.
  • Amygdala is running the show; people are running in fear.
  • Hypermobility is involved commonly in Level 3 patients.
  • Neuroinflammation is blood-brain barrier permeability, pro-inflammatory cytokines and leukocyte invasion lead to microglial activation.
  • Contributors include infections, toxins, Lyme, Toxoplasmosis, viruses, PANDAS/PANS, MCAS, TBIs/concussion.
  • Low VEGF has been associated with completed suicides.
  • MMP9 is associated with blood-brain barrier permeability.
  • IL6 has been well-studied in these conditions.
  • Major causes of psychiatric issues are inflammation and infections.
  • NeuroQuant is a volumetric MRI of the brain. Used for Alzheimer's and TBIs (traumatic brain injury).
  • Smaller hippocampus and larger ventricles is the pattern observed in Alzheimer's.
  • TBIs are more common than people recognize.
  • With Fibromyalgia and CFS, most looking for mold and Lyme often find them.
  • Can show limbic system dysregulation on the NeuroQuant.
  • The amygdala is the fire alarm. Fire alarm goes off every time a mosquito flies by.
  • Endotoxemia triggers the amygdala; eating is a primary trigger.
  • Thalamus at 90% or greater is a clue for MCAS.
  • Brain on fire may really be a swollen brain.
  • Mast cells play a role in neuroinflammation.
  • Dr. Theo thinks that mast cells are in the amygdala.
  • Mast cells are very triggered in CIRS and Lyme.
  • Mast cells increase blood-brain barrier permeability.
  • Some histamine is useful for motivation.
  • Ketamine can be very useful.
  • Leaky gut, leaky brain, leaky mitochondria.
  • Mold inflammation + traumatic brain injury + Bartonella increases the chances of psychological and cognitive symptoms.
  • TBIs open the blood-brain barrier allowing toxins to enter the brain more readily.
  • 80% of indoor cats and 100% of feral cats carry Bartonella.
  • It is premature to diagnose Lyme or mold based on a NeuroQuant.
  • Brain retraining strategies can be useful.
  • Treatment for MCAS may include LDN, PEA (starts most on it), Luteolin.
  • Melatonin helps with the health of the blood-brain barrier.
  • Best diet short-term is eating nothing at all.
  • Loves the combination of CoQ10 and NADH for mitochondrial support.
  • Uses CytoQuel from Researched Nutritionals the most in her practice for inflammation and pain
  • VIP is useful; some patients have been on it for 5-6 years with no ill effects.
  • She stabilizes the mast cells before adding VIP in order to improve tolerance.

Neil Nathan, MD spoke on "Elephant in the Room: Mast Cell Activation" and shared:

  • Concussion or whiplash can lead to cervical trauma Fibromyalgia.  Causes a persistent inflammation of the spinal cord which is treatable with FSM (Frequency Specific Microcurrent). Can take a whole layer of inflammation out of a patient. Single treatment can reduce pain and symptoms by 50-80%.
  • At least 50% of his patients have Mast Cell Activation Syndrome.
  • Mast cells are a bridge between the immune and nervous system. Direct neurological connection to the vagus nerve.
  • Mast cells have many contents beyond histamine including serotonin, serine proteases, and others.
  • VEGF and TGFb1 are significantly made by mast cells.
  • The role of mast cells is to coordinate the immune response to infections and toxins.
  • In genetically susceptible individuals with exposure to specific toxins, mast cells may become activated.
  • MCAS symptoms often appear within minutes after eating; can even be triggered by water.
  • Has had about 250 patients that did DNRS with "fabulous success".
  • Localized edema can be MCAS.
  • Difficult to get MCAS tests done properly; need a cold centrifuge and need to catch a snapshot when the MCAS is fired up. Without a refrigerated centrifuge, 5% of histamine is all that will be captured.
  • Can make a MCAS diagnosis without positive testing; treat it.
  • Treatments are largely benign; not treating leaves patients to the winds of fate.
  • It is not a lifelong issue to have MCAS.
  • Trigger is almost always mold, often Bartonella, sometimes Lyme.
  • Many of his MCAS patients are cured.
  • Quercetin 250-500mg 30 minutes before each meal and at bedtime can be very helpful.
  • Loratadine as an H1 blocker and Famotidine as an H2 blocker may be used; can use Zantac.
  • 50% benefit from a low-histamine diet.
  • NeuroProtek LP, ADO, AllQlear (tryptase inhibitor), Perimine, PEA/Mirica may be used.
  • Fexofenadine, Ranitidine, Ketotifen, Cromolyn may be used.
  • The more you do, the quieter the mast cells, the better the course.
  • Claritin or Allegra are patient favorites.
  • One of his favorites is Ketotifen; H1 blocker, leukotriene inhibitor, and mast cell stabilizer.
  • "If some is good, more is not necessarily better."
  • Working on the limbic system also works on MCAS.
  • Back up and treat the vagus nerve and limbic system first. Then can treat mold, Lyme, and other issues more successfully.

Some points from the Day 3 Q&A session included: 

  • DDAVP can lead to a drop in sodium and potentially seizures in some patients.
  • Oxytocin helps with urinary frequency and amygdala and hypothalamus retriggering; people become a little more positive and less triggered.
  • When the limbic system is regulated, you will still smell a fire, but the early warning in a hyperactive limbic response is a distortion.
  • SNPs - no matter what the SNPs, if the limbic/vagal/MCAS are not quiet, they cannot take any materials for SNP optimization; better for stronger constitutions. These are potential, not expression. The focus on genes becomes a barrier to healing and adds to the limbic system dysregulation.
  • There was a question around doing DNRS and addressing environmental exposure to mold in terms of whether or not that could be enough for the body to then take care of Lyme. Dr. Ackerley and Annie Hopper suggested that could be the case. Dr. Nathan indicated that there would be much faster forward progress overall.
  • Dr. Nathan cautioned against taking glutathione exogenously as it can shutdown endogenous glutathione production and slow methylation. If one uses HB12 and 5-MTHF, they can then make glutathione.
  • NAC can helpful for gliotoxin. If Chalymydia pneumoniae is present, NAC can destroy the elementary body and lead to porphyrins and what seems like a long herx, but may be a porphyria.
  • Dr. Nathan noted that mold allergy is like any other allergy in terms of the symptoms. Mold toxicity is a whole different issue with a larger, more systemic set of symptoms.
  • A question was asked about an EMDR app. Dr. Ackerley did not feel this was a good direction as EMDR should be guided by a professional. She also suggested not doing EMDR and DNRS at the same time.
  • Dr. Nathan suggests that a high protein, low carb diet is often best for Lyme and mold, but with porphyria, patients may need more carbs. Diet is widely personal and varies over time.
  • Dr. Nathan mentioned that you cannot distinguish between Candida and mold in someone that has a die-off resulting from Saccharomyces boulardii use.
  • Dr. Ackerley mentioned that charcoal after a meal can be helpful for endotoxemia in those with SIBO.
  • Dr. Nathan shared that SIBO is a recognition of GI dysbiosis that has been around for some time. Look bigger than SIBO for GI needs. The "gut is the center of everything" model is not always true; fix the mold first.

Wally Taylor, MD shared this recap of the event:

Disclaimer: While I attempted to accurately represent the statements of the various speakers, it is possible that the above contains errors or inaccuracies. If you have any corrections to the content listed above, please Contact Me


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  BetterHealthGuy.com is intended to share my personal experience in recovering from my own chronic illness.  Information presented is based on my journey working with my doctors and other practitioners as well as things I have learned from conferences and other helpful resources.  As always, any medical decisions should be made only with the guidance of your own personal medical authority.  Everyone is unique and what may be right for me may not be right for others.