I was at a Lyme disease conference this week listening to Dr. Robert Bransfield speak. He cited some scary figures –
- That one single case of autism can cost $3.2 million over the course of a lifetime; and
- That 20% of autism may be associated with Lyme disease.
We certainly know that Lyme disease has extensive neurological manifestations, causing cognitive, psycho-emotional and behavioral changes – all things that that are hallmark in autistic-spectrum disorders.
Perhaps we should be testing more of our autistic kids for Lyme disease. We test for candida, heavy metal toxicity, food sensitivities, copper/ zinc imbalance and so on … why not test for Lyme as well?
Sounds easy and sensible. But there are also some inherent challenges in all of this –
1. Lab testing for Lyme disease and related co-infections is not 100% accurate. Certain tests are worse than others. The ELISA test, for example, is not highly sensitive and yet is the first test ordered by physicians. When it comes back negative (which is usually will even in positive cases), they abandon the idea of Lyme disease. Certain labs are better than others too. I don’t rely on lab results from large labs such as Quest and Labcorp for these infections, rather I use specialist labs such as IGeneX, who have developed more sensitive, and therefore more reliable, testing methodologies.
2. Treatment options –what if a child does test positive for Lyme disease? Then what? Are we going to give long-term antibiotics to a child with autism who is already struggling with yeast overgrowth? No, most likely not. But there are many more natural treatments such as herbal antimicrobials that can be used – we just need to select ones that have known activity against Borrelia, the bacteria that causes Lyme disease. Hyperbaric oxygen treatments are well indicated for cases of Lyme/ autism as they help both issues at once.
3. Politics/ resistance by pediatricians. If you think you’re having a hard time communicating with your pediatrician about biomedical treatments for autism, just wait to see what happens when you go in and raise the possibility of your child having Lyme disease as well. At the least they might think you’ve gone bonkers. Even worse, they might well start suggesting Munchausens by proxy (a terrible situation in which caregivers create illnesses for their children/ dependents to get attention) – which might seem ridiculous to us, but I have had parents accused of that for simply trying to get their schools to provide digestive enzymes and a gluten-free diet for their kid. Lyme disease is both misunderstood and controversial (yes, even more so than autism), and many doctors are resistant to considering it and dismiss it prematurely.
It is hard to know for sure how strong the association is between Lyme disease and autism. I predict it’s higher than we might think. You might want to consider having your child tested if any of the following situations are present:
- You live or lived in areas with a high incidence of Lyme disease such as the north east, the mid west, the south east, the south west and the north west. Ok so I’m being facetious here, but Lyme is found throughout the entire United States (and many other countries also) and is currently the fastest growing infectious disease.
- Your child is unusually fatigued and lethargic.
- Your child’s autism developed after a period of normal neurological development – for example, your child became autistic at 18 months, rather than being born with it.
- Mum is showing signs of chronic fatigue syndrome/ fibromyalgia, or neurological issues such as Bells palsy, multiple sclerosis, parkinsons, or ALS. Lyme disease can be passed from mum to baby in utero.
- Your child has joint pain, muscle aches, or consistent pain of any kind.
The first step would be to do a Western Blot test through IGeneX lab, which costs $200. Further testing for coinfections might be needed, but the Western Blot is a good starting point. Contact Dr. Nicola’s office to set up a phone or office consultation if you would like to discuss this for your child.