I had the opportunity to attend the ILADS 2019 annual event "Chronic Disease = Chronic Infections?" held in Boston on October 31 - November 3, 2019. This was my 14th! ILADS annual event since I first started attending in 2006.  My overall sense was a feeling of renewed hope, of forward progress, and of emerging solutions; more this year than any year past.

While I did not get attend as many of the lectures that I have historically, I did get to several excellent talks that I will attempt to summarize below.

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 training course 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.  

Susan McCamish, CTN presented and shared:

  • She is the formulator of Beyond Balance; products emerged from her own son being in a wheelchair at age 10. With Lyme, co-infections, mold, MCAS, viruses, parasites, and so much more, new tools were needed.
  • With the Beyond Balance products, the synergy of numerous herbs creates an effect greater than the sum of the parts.
  • The goal of the formulas is to support detoxification, organ function, immune function, and microbial burden.
  • The formulas may be used by practitioners with antibiotics or as a stand-alone tool.
  • Products are tested several times including by a third-party testing facility.
  • A generalized approach to chronic illness includes:
    • Detoxification and Drainage Support
    • Environmental Remediation (Mold and EMFs)
    • Mast Cell, Histamine, Inflammation, and Immune Modulation Support
    • Virus and Retrovirus Support
    • Parasite and GI Support
    • Fungal / Yeast Support
    • Lyme and Co-Infection Support
  • Symptoms are a result of the bath, sink, or toilet overflowing. Slow down the faucet and open the drains.
  • Beyond Balance offers a number of different products for Detoxification Support, Core Immune Support, Immune System Support, Inflammation Support, and more.

Eboni Cornish, MD spoke on "Clinical Evaluation: Morgellons and Lyme Disease" and shared:

  • She has been treating Morgellons and tick-borne disease for 9 years.
  • Her first patient got better with a focus on treating the gut and treating Lyme.
  • Morgellons is a dermatological manifestation of tick-borne disease.
  • We are in history with Morgellons where we were with chronic tick-borne disease 15 years ago.
  • She said to practitioners, "You are seeing Morgellons patients even if you don't know it."
  • She works at Amen Clinics and specializes in functional medicine approaches.
  • Morgellons is not an infection of aliens
  • It was labeled "Morgellons" in 2001 due to being similar to what Sir Thomas Browne described in France in 1674.
  • Is it delusional or infectious in etiology? Some call it self-inflicted and accuse patients of putting textile fibers into their own skin.
  • She is working to help legitimize the disease.
  • The association between Morgellons and Lyme disease and Relapsing Fever has been published.
  • Psychiatric symptoms are secondary to infection.
  • One study showed 98% of Morgellons patients were Western Blot positive for Borrelia.
  • The filaments (fibers) are keratin and collagen; they are not living organisms coming out of the skin; they are from epithelial cells.
  • Starts with diet, sleep. If not pooping, you aren't getting better. If you are not sleeping, you are not getting better.
  • Mold, Morgellons, Mast Cells are the three M&Ms.
  • MCAS is epidemic; associated with histamine intolerance.
  • Less GABA and more glutamate is seen with leaky gut.
  • Implements the remove, replace, reinoculate, repair, re-balance protocol for gut health.
  • Suggests not treating Morgellons patients any differently from Lyme patients.
  • Anti-helminthics and biofilm agents may be helpful; toxicity is important to address.
  • Morgellons is more than just an infection.
  • Patients need to be screened and treated for mold; she does urine mycotoxin testing.
  • She sees Chaetomium globosum associated with skin lesions; it is found in high prevalence in her Morgellons patients.
  • Treatment order is often Babesia, Bartonella, then Borrelia.
  • The environmental component is often they key.
  • Many are missing the environment and lifestyle; won't get well if not pooping and sleeping.
  • Perform comprehensive tick-borne disease treatment.

Kenneth Liegner, MD spoke on "Disulfiram in the Treatment of Lyme Disease and Babesiosis - Report of Experience of First Applications in Humans" and shared:

  • Disulfiram is the most highly active compound against Borrelia in vitro.  See study.
  • Anbitioics are useful but suppressive and not curing the infection.
  • There are limitations of antibiotic therapy.
  • Disfuliram has a 60-70 year history of use in alcoholism.
  • He has a patient the was self-declared as "cured". The patient has a psychiatric event and hospitalization while on Disulfiram which can be a potential side effect. The patient did not feel it was the drug, and commented that even if it was, it was worth it. The patient has been clinically-well for 27 months with no ongoing treatment.
  • Three patients had Babesia as well and the need for treating Babesia dissipated; appears to be effective for Borrelia and Babesia as well.
  • It is cheap; relatively safe.
  • Has seen "enduring remissions" for six plus months with no ongoing treatment.
  • 85% had obvious, lasting benefits; some required re-treatment.
  • A significant number may experience peripheral neuropathy that usually resolves.
  • Some developed emotional disturbance which required discontinuation of therapy.
  • With biofilms present, bacteria are 1000 times more resistant to antibiotic therapy.
  • Carbon disulfide is the breakdown product of Disfulfiram; a small, diffusible molecule. It may penetrate biofilms.

Robert Mozayeni, MD spoke on "Mast Cells: Considerations in the Lyme or Bartonella Patient" and shared:

  • Treatment and persistent activation of mast cells without infection is possible.
  • Borrelia can degranulate mast cells.
  • Everyone gets mast cell activation with infection, but to what degree does it remain?
  • Mast cells are rare in the blood, but dense in mucosal and epithelial tissue.
  • Bartonella is found in the blood vessels and lymphatics.
  • Bartonella incidence is higher in lesional skin; though has been found in non-lesional skin.
  • There is an overlap between MCAS, Bartonella, and hypermobility.
  • Bartonella may impact the glymphatic system.
  • EDS (Ehlers-Danlos Syndrome) Type 3 has resolved in some patients with Bartonella treatment.
  • The host response determines the disease more than the microbes.
  • Herxheimer reactions may be mast cell driven.
  • Nearly all of his patients get H1/H2/mast cell support.
  • Stimulation of auto-antibody production may be mistaken as autoimmune disease.

Theo Theoharides, PhD, MD spoke on "Clinical Applications of Brain Mast Cells, Exosomes and Mitochondrial DNA Involvement in Lyme Disease" and shared:

  • With brain fog, patients can have neuropsychiatric and cognitive issues.
  • Antihistamines can cause brain fog as well.
  • Mast cells respond to mycotoxins and to Borrelia and other microbes.
  • Mast cells may begin to fire uncontrollably.
  • Different mast cells can respond differently to the same trigger.
  • Mast cells express CRH receptors; stress will trigger mast cells without histamine or tryptase release.
  • Luteolin or quercetin may be helpful; often derived from fava beans or peanut shells.
  • If a child is hyper and has a problem with strawberries, look at the genes and may need to avoid phenolics.
  • Look for source and purity of products.
  • Flavonoids are poorly absorbed in the gut; olive seed oil can increase absorption by 3-5 times.
  • If you give a lot such as a powder; 10% may be absorbed. Giving over 1 gram or so can negatively impact the flora.
  • Often likes to use folinic acid.
  • Luteolin is yellow; not white. If a product claims to have luteolin and is white, it's probably not what it claims to be.

Tania Dempsey MD spoke on "Mast Cell Activation Syndrome: A New Paradigm for Understanding Autoimmune Encephalopathy and Polyneuropathy" and shared:

  • Mast cells are sensors and effectors in communication with the nervous, vascular, and immune systems.
  • Mast cells produce many different mediators and inflammatory cytokines.
  • Mast cells play a key role in our defense system against pathogens.
  • Mast cells impact nerves and the nervous system.
  • Metabolic Syndrome is an autoimmune disease.
  • Do mast cells cause autoimmunity, mimic, or amplify? Probably all of these are true.
  • In the brain, mast cells are on the brain side of the blood-brain barrier.
  • It is a vicious cycle that promotes more and more neuroinflammation.
  • In September - November, there could be allergens, stress, or other factors; a common time for flares with patients.
  • Mast cells are a driving force and amplifier for development of autoimmune neuropsychiatric disorders and other neuropathic conditions.
  • When symptoms do not resolve with the treatment of inflammation and infection, think mast cells.  

Thalia Farshchian, ND spoke on "Matrix Metalloproteinase-9 as a Diagnostic Tool in Mast Cell Activation Syndrome" and shared:

  • Mast cells are a subtype of white blood cells and release substances involved in inflammation and allergy.
  • Mast cells are high in the skin, lungs, and gut; interfaces with the outside world.
  • Hives, itching, dermatographia, acid reflux, bloating, loose stools, joint pains, runny nose after meals, headaches, brain fog, palpitations, blood sugar instability, low blood pressure, painful urination, increase urinary frequency are common symptoms.
  • Common triggers include mold, parasites, EMF (mast cells are 10 times more active around EMFs), metals, toxins, methylation issues related to histamine detoxification, and limbic system issues.
  • MCAS is more common in women due to estrogen.
  • Comorbid conditions: IBS, sick building syndrome, Lyme and co-infections, EDS, POTS.
  • Labs may include histamine, tryptase, chromogranin A, urinary biomarkers; often hard to find with these tests.
  • MMP9 reduction supports collagen and reduced pain and inflammation.
  • MMP9 is seen in allergic and inflammatory conditions.
  • Mast cells produce MMP9.
  • Often likes to use a provocative challenge where they test MMP9, provoke with a high histamine smoothie, run again in 10-15 minutes and look for an increase in MMP9.
  • Therapeutic trial is then considered with: testing -> MCAS diet -> retesting.
  • Has seen a 39% reduction in MMP9 with a low histamine diet alone.
  • Ideal MMP9 is below 250. <399 could be mold without MCAS. => 400, she would put her money on MCAS.
  • Histamine provocation showed an average increase in MMP9 of 57%.
  • It is better to do the diet first and then add the MCAS stabilizers. Doing both simultaneously resulted in a reduction of only 11%.
  • MMP9 can be elevated by many factors.
  • Low oxalate and/or low salicylate diet may be needed in some.
  • No fermented foods, no leftovers, consume low-histamine foods.
  • Once histamine is created in leftovers, it cannot be destroyed.
  • Holy Basil, EGCG, curcumin, pantethine, luteolin, homeopathic histamine, hesperidin, ellagic acid, pomegranate may be helpful.
  • Consider the vagus nerve, limbic system, EMF, and mold.
  • Reducing EMF reduces MMP9.
  • You don't have to have MCAS for the rest of your life.

Tania Dempsey MD spoke on "Bartonellosis and the Trifecta: MCAS, EDS, and Dysautonomia" and shared:

  • MCAS is related to EDS and dysautonomia; a trifecta. Sees overlaps with Bartonella.
  • Regardless of underlying infection, treating MCAS can make a big difference.
  • POTS entered the "expanding disease cluster" conversation in 1993; MCAS in 2007.
  • The triad is POTS, EDS, and MCAS.
  • The pentad adds gastroparesis and autoimmunity.
  • The "hot mess" adds Chiari, SIBO, ME, endometriosis, glucose intolerance, complex regional pain syndrome, and others.
  • Conditions are becoming more complex over time.
  • Can have MCAS without allergic symptoms.
  • Primary MCAS is since birth or early childhood and then worsens.
  • Secondary did not exist prior but then a trigger leads to MCAS. Pathogen-induced MCAS; PIMCAS.
  • MCAS affects every single organ system.
  • MCAS is a player in pain syndromes.
  • MCAS is involved in interstitial cystitis, vulvodynia, and related pain syndromes.
  • Target MCAS to control inflammation and modulate immune response.
  • MCAS can lead to release of substance P.
  • MCAS can lead to neurological and neuropsych symptoms.
  • MCAS and POTS; nervous system problem. 
  • MCAS, EDS, and POTS are all related.
  • Triggers for MCAS are: pollen, foods, animals, dust, viruses, bacteria, fungi, mold, parasites, metals, pesticides, BPA, stress, temperature changes, hormones, microbiome, diet, and many others.
  • Lyme can induce MCAS.
  • Mast cell activation is seen in malaria and Anaplasma.
  • Can develop EDS type 3 from an infection.
  • The host response to the infection is the key.
  • HLA DQ8 is a predisposition to celiac disease.
  • Cunningham Panel results may be driven by MCAS.
  • Grain-free, gluten-free, low histamine diet.
  • IVIG can lead to significant reactions and discontinuation in the MCAS patient population.
  • Depersonalization may be a Bartonella symptom but can also be related to MCAS.
  • Bartonella impacts the mast cells; addressing MCAS may be enough for some patients to improve.

In a side conversation with Stephen Fry MD of Fry Labs, I learned:

  • When they look at those with neurological disease impacting the brain, fungal organisms are what are observed.
  • 80-85% of cancerous tumors are associated with mycotoxins from fungi.
  • People are colonized with fungi.
  • Alphaviruses colonize as well and open the door to the fungi which then can result in mycotoxins and eventually lead to cancer.
  • Some antifungals may be synergized with Doxycycline.
  • Chikungunya is one of over 20 alpha RNA viruses.
  • There are 130 or more tick-borne viruses.
  • EBV titers may be cross reactive with other viruses.
  • Some doctors may use Ribavirin as a trial; people will often have significant die-off reactions due to viral burden.
  • The utlimate killer is the fungi; but the viruses open the door.
  • The average Westerner has 10 virues; in the tropics, 20.
  • Fresh fruit and vegetables are key.
  • Antifungals and enzymes may be helpful.  
  • Rope worms are not a living organism.

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.   

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