Lyme disease has been making headlines since 1975 when it was discovered by a mom in Old Lyme, CT who noted several neighborhood kids with the same aches and pains. Initially called juvenile rheumatoid arthritis. It wasn’t until it was officially diagnosed by Willy Burgdorfer in 1981, to be discovered that Lyme disease is passed on from the saliva of the deer ticks.
Lyme disease is the fastest growing vector borne infection in the United States. Lyme disease infects over 300,000 people a year; 25,000 people per month.
The testing for Lyme disease is spotty at best. According to the CDC, there is a two tiered approach to testing: An ELISA screening test and if that’s positive, then a Western Blot is performed.
The issue with this type of testing is that the ELISA is not that sensitive & 50% of cases can be missed because they are negative by ELISA, but have a positive Western Blot.
Lyme disease is no joke. It is the great imitator and can cause more havoc to he body by triggering a PANS/PANDAS event. PANS is Pediatric Acute Neuro-psychiatric Syndrome.
- exhibit life changing symptoms such as OCD
- severe restrictive eating
- personality changes
- decline in math and handwriting abilities
- sensory sensitivities
PANDAS is Pediatric Acute Neuro-Psychiatric Syndrome caused by Acute Streptococcus infection.
- Presence of obsessions, compulsions and or tics
- Abrupt onset of symptoms or a relapsing-remitting course of symptom severity
- Prepubertal onset
- Association with streptococcal infection
- Association with neuropsychiatric symptoms
PANDAS has been a diagnosis for over twenty years, initially diagnosed by Dr. Sue Swedo and colleagues at the National Institute for Health.
A Lyme disease infection can trigger a misdirected immune response, where the immune system becomes activated to fight an infection, but then crosses the blood brain barrier (BBB) and starts to attack the brain causing an autoimmune encephalitis. Now the child suddenly starts to regress and display autistic like behaviors.
LOCATION, LOCATION, LOCATION…
You might be thinking, I live in an urban area, we’ve never travelled to Old Lyme, Connecticut, must less ever seen a deer, therefore my child’s issues cannot be Lyme related.
- 50% of Lyme Disease patient’s never saw a tick
- 50% of patient’s never had a “Bull’s Eye” rash
- Refer back to the above statistics-Lyme is not limited to the eastern seaboard
On the Western Blot, the CDC requires 5/10 bands for IgG to be considered positive. Providers who are trained or utilize the ILADS criteria, who may consider treatment based on 1-3 bands that are specific for Lyme in a child with autism. Also these providers may also be considering PANS, especially if the child has had recurrent infections, prior to diagnosis.
Pathway to Healing
Healing the body from Lyme disease whether someone has autism or not is a multifactorial approach. Our neurological, immunological and gastrointestinal systems do not work in isolation of one another. Healing the gut is where recovery starts. Here is a listing of the body systems and areas to address the basic building blocks for recovery:
Once those are addressed (which is never ending in a child with autism), you can then simultaneously look at the body systems:
- Neurological system
- Immune system
- Gastrointestinal system
It is important that you work with an experienced Lyme Literate provider (LLMD) in order to treat your child’s Lyme disease. It’s not as simple as treating with a course of antibiotics and calingl it a day. Some times our children with autism require more intense treatment, extended courses of antibiotics, or even immune modulating therapy, such as IvIG or Hyperbaric Oxygen Therapy (HBOT), or Low Dose Immunotherapy (LDI).
If you noticed that your child suddenly regressed into the world of autism, or that their symptoms become intensified, it is imperative that you think about Lyme disease and/or PANS. Arm yourself with information to bring to your provider, check out the following websites for more information: