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ILADS konferencia anyaga angolul

2015.03.15

ILADS konferencia, Melissa Bell jegyzetei alapján:

 

Thanks to the Florida Lyme Disease Association and Melissa Bell, who took notes at the ILADS conference

Melissa Bell - Reporting Live from ILADS Conference

Brain on Fire: Infection Induced Autoimmune Encephalopathy

Dr Charles R. Jones, MD:

Treated more than 10,000 children around the world

EM rash is rare entity (fewer than 7% of patients)

Attachment – disease can be transmitted from salivary glands of ticks (known case of 15 minute attachment on 3 year old girl who developed headache, fever, EM rashes, facial palsy, arthritis; tick tested positive for Bb)

WB is not a test for Lyme Disease, but can be used to support a clinical diagnosis of Lyme (only shows exposure to Bb)

Uses iGeneX because uses 2 reference strains, reports more bands
Neurosciences test is better early test

Symptoms include:
Anxiety
Psychosis with hallucinations
Emotional lability
Oppositional defiance/rage
Separation anxiety
School phobia
Sensory processing issues
Food issues
Decrease in cognitive functioning
Hyperactivity

90% of genetic makeup (genome) was created by microorganisms which is important in development of problems with PANDAS/PANS, mycoplasma, HHV6, EBV candida

MMR vaccine induced autism – uses IVIG to reverse symptoms

Once infected with an organism, we make antibodies to infectious agent and ourselves

At this point, an infection induced autoimmune encephalopathy can evolve

Infection induced autoimmune process can impact
Heart, lungs, eyes, CNS, brain, etc.

Dr. Cunningham has identified anti-neuronal antibodies in children with PANDAS/PANS – Dopamine 1, dopamine 2, lysogangiloside, and tubulin

Dr JOnes partners with Denis A. Bouboulis, M.D. on PANDAS/PANS cases

PANDAS/PANS Triggers:
Strep
Lyme and Tick-borne Diseases
Mycoplasma
Candida albicans
Other viruses and triggers

Treatment
Eradicate infectious with antibiotic therapy
IF unsuccessful in stopping encephalopathy, add IVIG to treatment regime

IVIG – replace IgG in patients with immune deficiencies (500 – 750 mg) AND modulate an autoimmune process (higher does for modulation of autoimmune process is required)

Plasmapheresis – invasive and does not work the same way as IVIG

IVIG is extremely expensive; fewer codes to get high does IVIG; 4 accepted CPT codes to get IVIG approved

Setting up 501c3 charitable trust with Dr. Boubolis to fulfill needs of children to allow children to get IVIG. Fundraising necessary because IVIG is very expensive.

Most cases of Babesia are duncani strain which is harder to treat