The ILADS 2017 event was my 12th ILADS annual ILADS event. Almost 900 people attended which is impressive for a condition that many don't consider to be "real"; acceptance and understanding of Lyme disease is growing.
Much of my time at this event was spent networking, talking with potential future podcast guests, and talking with people in the exhibit hall. As a result, I did not get to attend as many of the lectures as I have in past years, but I wanted to share the information I learned from those I was able to attend.
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.
Kristine Gedroic, MD spoke on "Management of Cytokine Storm and Herxheimer Reactions in Tick-Borne Disease Patients" and shared:
- The drain is over-flowing in those with Herxheimer reactions. We have to slow down the faucet or open the drain.
- Herbal protocols allow us to slow down the faucet and to open the drain.
- The depth of the sink is synonymous with one's constitution.
- Some patients may not tolerate treatment as well as others and possible explanations may include: matrix toxicity, membrane toxicity, microbiome dysregulation, yin deficiency or depletion, and trauma.
- We have to detox, control infections, and restore/repair membranes.
- In yin-deficient patients, they may need to rebuild before doing anything. This may include a focus on nutrients and diet, and then standard care follows.
- Detox and drainage has to consider the extracellular matrix. This is used for transport and storage as well as intercellular communication.
- When the toxicity of the matrix has surpassed its capacity, the toxins move into the cells.
- Homeopathics can be helpful in supporting drainage and cannot themselves create traditional allergy responses.
- It is not uncommon to see early symptoms return as you go back through the German model of homotoxicology; which is to return to health in the inverse of how the illness occurred.
- Oral membrane stabilizing therapy is helpful for detoxification as toxins can be on the cell membranes.
- Inflammatory fats lead to cold fingers and toes, Raynaud's, and thicker, darker blood. These are known as VLCFAs or very long chain fatty acids. These can be produced by viruses and molds. They become stuck in the upper bowel, liver, and gallbladder.
- Colonics can be helpful in those with SIBO. They can help to get the mucoid plaques to move off of the upper gut.
- Numbness, tingling, and paresthesias can be the result of early demyelination related to inappropriate fats that protect the nerves. Fungi produce enzymes that keep us from using these fats to protect us. Sphingomyelinase is blocked. One can have electrical small fiber symptoms. Prometol may be used to support the myelin.
- Food should be our medicine. Grass fed butter, coconut oil, EFAs, and palm oil.
- The optimal ratio of omega 6 to omega 3 is 4:1 and is found in SR3 oil. Healthy omega 6 oils are important for mitochondrial health.
- She uses a "Power Drink" with her patients as an oral membrane stabilizing therapy. It may include milk, almond milk, or coconut milk with egg or whey protein powder, Phoshatidyl Choline, Balance Oil (SR3), Evening Primrose Oil, and electrolytes.
- Lipid rafts connect our cells and are involved in communication between cells. If they are too big, it creates rigidity to the cell membrane and can block cell receptors. The goal is to reduce the pro-inflammatory lipid rafts with oral or IV butyrate.
- The list of benefits of butyrate is long - it is a natural promoter of resolvins and protectins which are the active signal in the body to turn off inflammation. It also helps with gene regulation.
- Spirochetes can use lipid rafts.
- There is a difference in the approach to treatment in a stable patients as compared to a depleted patient. For a stable patient, they may start with PC, EFAs, a multi, and probiotics. For depleted patients, they may need to add Prometol, electrolytes, trace minerals, high quality protein, and adrenal support as well.
- To support the microbiome, eliminate sugar and processed foods and add bone broth and fermented foods.
- The intestinal barrier has two layers; an aqueous and lipophilic. Chronic Lyme feeds on lipids to produce its own bi-layer. The longer the duration of the infection, the more there is a drop in lipid layers needed to heal the gut on a functional level. A broken gut barrier can lead to higher histamine responses.
- It is often helpful to supplement patients with bile salts. It may require a significant amount of bile salts in a patient with SIBO as the upper-area is offline.
- PC coats the lower microbiome.
- It may be important for vegetarians to eat meat until they are better.
- So many patients have been traumatized.
- Tips for Herxheimer reactions: increase ECM drainage, Parsley/Burbur/Pinella, alkalinize (Alka Seltzer Gold, Alkabase, Magnesium carbonate, Potassium bicarb, lemon water), low dose naltrexone (LDN).
- Since they introduced drainage in their office, there has been a 75% reduction in Herxheimer reactions.
- Fevers burn off bad fats in the body, but Tylenol and other interventions have led to higher issues with bad fats over time.
- Butyrate can be difficult to tolerate at the onset in those with SIBO.
- More stubborn SIBO also has a fungal component (SIFO) and butyrate is nature's antifungal.
- Parasites are a huge issue for many with histamine responses that need to be explored.
Joe Brewer, MD spoke on "Mold and Mycotoxins in Chronic Illness Patients: New Insights Including Gliotoxin" and shared:
- He is working with urinary mycotoxin testing and nasal antifungal therapies in a spray.
- Nasal Amphotericin is less tolerated and can cause irritation.
- Relapses are often seen when therapy is discontinued.
- There may be a regrowth of mold in the sinuses.
- May need to use 1-2 days per week for maintenance therapy.
- Mycotoxin-induced immune suppression can lead to inability to control infections.
- Mycotoxins themselves can lead to symptoms.
- Overall symptom picture may be a combination of both the mycotoxins and the microbial issues due to mycotoxin-induced immune suppression.
- Gliotoxin is associated with Aspergillus.
- Aspergillus is often found in homes with mold exposures.
- In one small review of 10 people doing an ERMI, 8/10 had all 3 types of Aspergillus (fumigatus, niger, flavus). 10/10 had at least one of the three types of Aspergillus.
- Aspergillus is common in water-damaged buildings.
- In one study looking at Aspergillus in the sinuses, 6-32% had Aspergillus fumigatus, 2-17% had Aspergillus niger, 1-6% had Aspergillus flavus. Up to 40% had some type of Aspergillus.
- In 250 patients during the RealTime Labs urine mycotoxin testing, 98% were positive for gliotoxin. These patients had a prior CFS, FMS, or Lyme diagnosis.
- Gliotoxin leads to immune suppression. It can impact the mitochondria, deplete glutathione, impact NK cells, T lymphocytes, macrophages, and monocytes.
- Gliotoxin is the most immune-suppressive mycotoxin.
- It can lead to abnormal cytokine responses.
- Moving out of a home alone is not enough to resolve mold illness.
- Dust under the fridge is often a good source material for testing with the RealTime Labs mycotoxin testing.
- Two girls with long-term EBV improved with nasal antifungal therapy after they were found to be positive for mycotoxins.
- A 70-year old male had hundreds of tick bites and was Western Blot positive. With antibiotics, has some improvement. Later found mold in his basement and was positive for Ochratoxin, Trichothecenes, and Gliotoxin. Did nasal antifungal therapy with the antibiotics and returned to 80-90% normal.
- A 29-year old male with Bartonella was positive for Bartonella henselae and quintana. Was treated with antibiotics. Worked in a parking shed at a golf course and was positive for Ochratoxin. After nasal antifungal therapy, he returned to being completely well. However, he needs to stay on it for 2 days per week to maintain his level of health.
- One of the key takeaways for me was the connection between mycotoxins causing direct immune suppression which may then allow infections of many kinds to become more of an issue. These may include EBV, HHV-6, CMV, Borrelia, Bartonella, Mycoplasma, Chlamydia, Rickettsia, Coxiella, Candida, Babesia, and other parasites.
- Both internal and external sources of mold must be controlled.
- Infections must be controlled.
- Mast cell activation syndrome must be considered; mold and mycotoxins may activate mast cells.
I had several opportunities to talk with Dr. Stephen Fry of Fry Labs throughout the event. I wanted to understand the latest around Protomyxzoa rheumatica and what the most current information available about this organism is.
Dr. Fry shared that they had original identified an organism in a Lupus patient 7-9 years ago; the organism was a biofilm former. At the time, the organism was given a GenBank serial #.
They continued testing specimens for this organism with 10 different probes which found the organism about 50% of the time. Over time and with more advanced technologies, they have been able to more precisely identify the organisms that were being seen.
While Protomyxzoa rheumatica is a real organism, it is not as commonly observed as once suspected. At the time, there were about 200K entries in the database where these organisms are tracked. Today, there are over 46 million.
What was Protomyxzoa rheumatica is now more precisely believed to be an organism similar to Funneliformis mosseae, a fungal organism. Dr. Fry referred to it as "Funneliformis mosseae-ish" as technology and advances in medicine allow them to continue to refine their research and identification over time.
Many people isolate organisms which end up being listed in the NCBI GenBank database with serial numbers. They then look for the closest match that has an identified name rather than just a serial number. Funneliformis mosseae is the closest match. Protomyxzoa is still a real organism, but it is not as common as previously suspected. Funneliformis mosseae likely comes from mosquitoes, ticks, and fleas.
They may do a fluorescent stain and then do more specific RIDI sequencing metagenomic analysis. He mentioned that eukaryotes are fungal, protozoal, and algal. The have a sequencing test for eukaryotes and a separate one for bacteria.
His recent work has led him to the conclusion that what they see most commonly in chronically-ill individuals is fungal and that an antifungal focus is often most helpful. Interestingly, Biaxin potentiates antifungal medications. Doxycycline is synergistic with antifungal medications. Plaquenil has antifungal properties. Combinations such as Doxycycline and Lamisil or Doxycycline and Itraconazole may be helpful for Funneliformis mosseae; these may need to be used for 18 months or longer. Some medications believed to be used for parasites such as Ivermectin are also antifungals.
He shared that an ideal diet would be 10% fat, 15% protein, and the remaining would be complex carbs. Plaques in the body are fungal and like amino acids. A common pattern in Parkinson's patients is a severe, left-sided CCSVI from microbial overgrowth.
I had a brief discussion with Jamie at the DNA Connexions booth to discuss the best options for provoking their urine test. She suggested thirty minutes of vigorous exercise followed by the collection 60 minutes later was ideal, but realized that many with Lyme cannot do this. Other ways to provoke in advance of collecting the urine include rolfing, deep tissue massage, sauna, sexual activity (vigorous exercise), and infrared or ultrasound (per the RK Protocol from Dr. Klinghardt's work).
On the IGeneX Western Blot, band 31 could represent cross-reactivity with viruses, Mycoplasma, or Chlamydia.
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.