Lyme Connection Conference 2017: Notes

 

I had the opportunity to attend (and run a Lyme Disease Challenge table) at the 2017 Lyme Connection Health Fair and Conference (Beyond Lyme: Redefining the Future of Tickborne Diseases) on May 18, 2017. Dr. Eva Sapi was presented with the Courage in Research Award. Clinical Neurophysiologist Dr. Elena Frid and Osteopathic Physician Dr. Thomas Moorcroft were the featured speakers. Following are my notes from the conference. Any mistakes are mine.

One theme that emerged from all three speeches was the fact that research about Lyme, etc. is being censored. Why? Why are studies being skewed and misinterpreted, or not published at all? 

Dr. Eva Sapi (University of New Haven)

In the 1980s, they discovered that Borrelia was not just a spirochete but made biofims.

2010 study showed that antibiotics, which are the gold standard, don't work on biofilms.

2012 study: Borrelia Burgdorferi persisted after 90 days treatment in monkeys

Borrelia: most recognized forms are 

a. spirochete

b. round bodies (cysts, granules)

c. biofilm

Biofilms are a collection of microorganisms, like plaque on teeth, like slime in the shower. It has been established that over 90% of bacteria live in biofilm. Biofilms are extra resistant to antibiotics.

Kidney stones (and other ailments) are examples of biofilm-related diseases

The biofilm is like a city, protected by walls. They have channels to bring in food and to bring out the waste. There is a protective layer. 

All borrelia makes biofilms.

At one point in Dr. Sapi's work, her chair received phone calls complaining that her work was not "real science" and asking the chair to shut down her work. She was permitted to continue (fortunately!)

Could other pathogens exist in these tissues? They found chlamydia sitting in the middle of borrelia. Might these two have a symbiotic relationship?

Dr. Elena Frid

NeuroLyme is Infection-Induced Autoimmune Encephalitis

1- infection

2- causes inflammation

3-resulting in autoimmune phenomenon (i.e. ANA (antinuclear antibodies)

Autonomic Nervous System-- responsible for things we don't think about--can be affected (POTS, Blood pressure, sweating, heart problems, digestive system)

Peripheral Nervous System (neuropathy, autoimmune)

This is microscopic; if you do an MRI, you may very well not see any changes.

Glial cells are as important as nerves and are affected by neuroLyme

Einstein's brain had more glial cells than average; could it be a sign of intelligence to have more?

In autoimmune conditions, the glial cells are disrupted

The infection is driving the autoimmune phenomenon

You must treat both--the infection and the autoimmune system--at the same time

Lyme is the Great Imitator; every person diagnosed with ADD, ADHD should be checked for Lyme

February 2017 paper in a Neuropsych Magazine claimed that 50% of people hospitalized for depression have an infection

FIBROMYALGIA DOESN'T EXIST; IT'S A SYMPTOM, NOT A DIAGNOSIS

A bull's eye rash is a gift from G-d because most patients don't get it

Have never seen a patient with just Borrelia; it's not just Lyme

April edition of Neurology (magazine): IVIG article. 320 patients were given IVIG over 18 months in a study of Alzheimers. Study deemed that IVIG does not work for Alzheimer's. HOWEVER, because IVIG is so expensive, the researchers gave only between 0.2 - 0.4 gm/kg instead of the standard/recommended 1.5 - 2.0 gm/kg. Citing this study, insurance companies are not going to pay for IVIG treatments.

IVIG for Lyme: improvement seen in 7-9 treatments; need 2 years of IVIG

Prevention: 

Tick Tock, Buzz Away, Insect Repellant clothing

Deet works when wet, not dry

Permethrin: since 2009, mandated by US military for all personnel, even those who are pregnant

Wear all the time, especially if you're doing high risk activity...like going into your yard!

(Someone mentioned how people are more cautious about using sunscreen than tick repellant.)

Dr. Tom Moorcroft

Lyme is old; 5,300 years old at least. And Borrelia has been around for at least 15 million years

Borrelia has 132 functioning genes, 21 plasmids (highest known in bacteria) and there are over 100 strains

Probably over 1 million cases of Lyme a year, if fully tested and reported (USA)

Yale study showed that Lyme (Borrelia) and Babesia co-occur more often than expected

In the Netherlands, 70% of the ticks have Bartonella

Spirochetes are found in breastmilk; unknown whether it passes

Maternal fetal transmission does exist

Sexual transmission: jury is still out; not scientifically proven but many reported cases

If you've had Babesia, you can't give blood

If the Red Cross knows this persists, why can't the rest of the world? 

Transmission: Cook 2014: minimum attachment time is not known

LITERATURE IS CENSURED! There are studies that aren't being published

70% of people get Lyme in in a friend's backyard

5-10 year olds are in the greatest risk category, boys even more so than girls

Diagnosis is clinical

Could literally list symptoms of Lyme for 3 hours without repeating ay

Lyme in children: about 50% present with GI complaint

other symptoms in children: acute behavioral diagnosis, regression

American Psychiatric Association recognizes Lyme can cause psych symptoms

Detox: 

Happens when you sleep

many Lyme patients don't sleep well

Sleep on incline (Samina bed)

incline your bed with the head up; supports brain detox

melatonin helps heal and detox

meditation can hep

nighttime light exposure (i.e. from smartphones) is not good for you

Blue Bockers -use when watching TV

grounding pad for bed; turn off Wifi in house at night

Chronic Group A strep infections in nose; The blood brain barrier breaks down

Simply Saline and Xlear nasal spray

Butiyko Breathing Method opens up nose (Patrick McKeoun)

Randomized, double-blind, placebo trials take the individual out of the study