It’s Day 3 of the ILADS 15th Annual Conference! Here are some sound bites from your fantastically-fatigued, note-taking Lyme Whisperer.

Dr. Daniel Kindelehrer: Opening Remarks

“There’s a huge problem out there and we are going to do our best to alleviate suffering.”

Dr. William Padula, OD: NeuroVisual Processing Affected by a Tick Borne Event

“In Tick borne disease, the visual system is disconnected. And requires Neuro Optic Rehabilitation (NOR).”

“Indications of visual dysfunction included headaches, blurred vision, pain around the head/shoulder/neck area, disorientation, motion sickness.”

“There are two visual processes. The Focal process, which allows you to be able to look at something. And the Ambient process, which allows for spatial processing and balance. These two symptoms must remain in balance. Otherwise, there will be problems.”

“A Lyme related event causes dysfunction of this neurovisual process. A Lyme related event compromises the balance between the focal and ambient processes. There is a mismatch.”

“It causes an effect much like when you are driving in a snow storm at night, and suddenly put your high beams on. It causes a borage of rapidly falling snow flakes to appear in front of you and you get tired from the overstimulation.”

“There is something known as the Visual Shift Syndrome. It affects posture and balance. A person can start from one end of the room and try to walk a straight line but will veer off to the right or left instead as if a magnet were pulling them in that direction, unable to walk in a straight line…unless they where corrective prism lens. A regular prism wouldn’t work. It has to be a corrective prism lens.”

“In a study with 20 subjects diagnosed with tick events, we had subjects view a checkerboard pattern and measured Visual Evoked Potential (VEP). In the normal response, we would observe the stimulus, an amplified response, and a release. In Lyme patients, we observed a negative depression before the amplified response. This N75 wave shows the system is in focal collapse. The focal process is not balanced by the ambient process. There were lots of negative numbers in the experimental lyme group.”

“In conclusion, N-75 amplitude identifies visual stress in Chronic Lyme Disease. It represents chronic spatial dysfunction caused by stress from a chronic long-term infection. Maybe what this is really saying…is that there IS Chronic Lyme Disease!”

“Presented by the Padula Institute of Vision Rehabilitation in Guilford, CT.”

Richard Horowitz, MD: Relapsing Fever Borrelia

“There is a new Borrelia on the block. Borrelia Miyamotoi.”

“There is no reliable blood test. But it could explain the reason why some people are resistant to Lyme treatment. They are being treated for Borrelia burgdorferi and it is not B. Burgdorferi.”

“There are 100 species of Borrelia in the U.S. and 300,000 world wide.”

“The three Borrelia species that cause relapsing fever are: Hermsii, Turicatae, Parkeri.”

“Symptoms include a fever of up to 106, headaches, drenching sweats, chills, nausea, vomiting, conjunctivitis, cough. Very non specific symptoms, symptoms you’d expect in lyme or babesia as well. The symptoms will be gone for 2-9 days then recur.”

“Ticks in California have a 0.7-7.5% prevalence of Borrelia miyamotoi in the San Francisco Bay area. It’s as abundant as Borrelia burgdorferi.”

“4% of 639 healthy people in southern New England had evidence of Borrelia miyamotoi. 10% of those with a history of Lyme had B. miyamotoi.”

“2-10% of ticks that transmit Lyme may contain B. miyamotoi.”

“People might test Lyme, but they should also be tested for Borrelia miyamotoi.”

“B. miyamotoi causes unusual hemolytic abnormalities, including strokes, myocarditis, and arrythmias.”

“It can cause fetal death and spontaneous abortion. It is a real concerns and OBGYNs are not screening for it.”

“15 days of antibiotics usually works.”

“One patient I had had severe psychosis. Which babesia can also cause. We finally did a PCR (DNA culture test) for B. miyamotoi and he was positive.”

“This is the new co infection and we need to start thinking about it.”

Dr. Neil Nathan: Methylation

“Got methylation?”

“Methylation is essential for energy production, gene regulation, detoxification, DNA, myelination, neurotransmitter function. There are 200 major reactions in the body that require methylation.”

“The end product of methylation is glutathione. There is no other substance more important than glutathione. If you don’t have proper methylation, your body just can’t “bake” glutathione.”

“Infection is a major disrupter of methylation. Infections result in a deficiency of magnesium, zinc, B12 and B6, all of which are key methylation cofactors.”

“The methylation pathway goes from methionine to SAMe (s-adenosyl-methionine) to SAH (s-adenosyl-homocysteine) to homocysteine back to methionine which goes down to glutathione. This is also connected to the folic acid cycle. And it’s also connected to dopamine and serotonin.”

“If you use methyl B12, the active form of B12, the body will say I have all I need. And it shuts down its own process of methylation rather than stimulating it. That’s why we focus on using hydroxycobalamin B12 in our practice.”

“It’s the same thing for glutathione. If you take glutathione, your body will think it has all it needs and stop making it on its owns. As a result, you run the risk of shutting down methylation. I know what I am saying is highly controversial.”

“A methylation protocol I follow involves L-5MTHF, hydroxycobalamin B12, phosphatidylserine, and vitamin B6 in the form of pyridoxal-5-phosphate. I have this protocol to 51 patients with Chronic Fatigue and Fibromyalgia. Low and behold the majority got better.”

“You can improve things dramatically with these simple vitamins. First, we made sure to address food allergies, adrenal function, thyroid function before hand if these were underlying factors.”

“My study results showed that after 9 months, all patients were in the normal range for glutathione and methylation factors.”

“Typically, it takes 5 weeks or so to improve. 53% of patients did report side effects. This is not rare. Many patients cannot be put on full protocol immediately. Give much less and less often when first starting out. Like one dose every 3-4 days then nudge it up.”

“What to avoid? Folic acid and cyanocobalamin.”

“What to measure? We use Health Diagnostics for the methylation panel and you can use 23 and Me or Genova for genomic markers.”

Joseph Brewer, MD: Mycotoxins

“In an April 2013, study involving detection of mycotoxins in patients with Chronic Fatigue Syndrome, we showed that both chronic fatigue syndrome and mycotoxin exposure caused the same symptoms: fatigue, neurologic issues, endocrine abnormalities, immune dysregulation, oxidative stress and mitochondrial dysfunction. Half of the patients had a background of Lyme Disease.”

“Mycotoxin induced immune abnormalities could make individuals more susceptible to the effects of Lyme.”

“Mycotoxins suppress ALL aspects of the immune system.”

“Some immune suppressants used in medicine are derived from mycotoxins/mold.”

“You can do a urine assay for mycotoxins. Chronic mycotoxin exposure will cause a positive urine assay.”

“Mycotoxins exposure can come from exposure within buildings or ongoing internal mold colonization, such as in the sinuses.”

“How does your body excrete mycotoxins? Through the urine, liver and sweat.”

“The sinuses are a chronic reservoir for mycotoxins which can readily form biofilm. If treated with antifungals this can improve.

“Biofilm is somewhat of a nightmare. To break up biofilm you can use EDTA, polysorbate 80, mupirocin, intranasal nystatin, liposomal amphotericin.”

“We use the NasaTouch Device. We’ve seen a 25-50% reduction in symptoms with these intranasal treatments.”

Dr. Burrascano, Dr. Fallon, Dr. Lee: Laboratory Advances

Dr. Burrascano:

“PCR testing, a urine test, has low sensitivity because the urine contains nucleases.”

“The T-cell assay is another indirect test. The test available through InfectoLabs of Europe has a specificity of 80%.”

“The Sapi culture method takes up to 16 weeks and has a sensitivity of 94%. It covers both European and U.S. based Borrelia species because of the polyclonal antibodies used.”

“Borrelia often exists partially or wholly in red white blood cells and white blood cells. We need to use chemotractants to free up the organisms.”

“In order to increase the spirochete load for a specimen, blood should be drawn in the afternoon. Or at the time of symptom flares. And there should be no previous antibiotic exposure for at least 4-6 weeks.”

“The Sapi culture technique to date has collected 5,500 samples since 2011. This represents the largest Borrelia burgdorferi culturing experienced in the world. Culturing B. miyamotoi requires special media.”

“It’s always been thought that Borrelia burgdorferi has yeast like properties.”

“Borrelia serum banks are great but they are not helpful for using to culture Borrelia, as the blood has to reach the lab in 24 hrs to be cultured. Otherwise, it will get stale.”

Dr. Brian Fallon on the SpiroFind Assay (Lyme Research Center at Columbia)

“The holy grail of testing would be to test for all species at all stages.”

“Current tests query the weaker immune response, which is the Innate response consisting of macrophage activity, phagocytosis, and the inflammatory response. In school, we were taught that the innate immune response does NOT have memory.”

” I have NEWS for you. The innate immune response does in fact have memory and can be trained to sustain an immune response to a specific pathogen. Monocytes retain an “immunological scar” that allow them to have “trained immunity”. They can be trained to sustain an immune response to a specific pathogen.”

“The goal of the Columbia Lyme Diagnostic Study is to conduct a rigorous validation study of the SpiroFind Assay for the U.S. market.”

“The primary hypothesis is that the SpiroFind will be positive in the early infection (EM) and significantly more so than the ELSIA or Western Blot. It will be negative after standard antibiotic treatment for antibiotic based assays. It will have good specificity and distinguish between Lyme, non Lyme, and healthy individuals. The study will involve 200 previously treated individuals and 200 controls.”

Dr. Lee: Novel PCR Lyme Testing, 16S rDNA

“In science, you don’t have to be polite. You have to be right.”

“You don’t have to use a two tier system to diagnose Ebola?!”

“My approach to PCR testing is to first use a DNA primer and a DNA sequencing based test. 16S rDNA has been in the literature for 20 years. It can be used to amplify diagnostics. If you have a test kit that can amplify DNA and then do DNA sequence testing, you can test for Borrelia.”

“There is no false positive for Lyme bacteria identification of Borrelia burgdorferi w/16S rDNA sequencing.”

Once again, thank you speakers and thank you ILADS! You’ve given us all much to read up on and to hope for.