When treating Bartonella clears symptoms of autism, what next?
By Debbie Kimberg
My 16-year-old autistic son’s learning disabilities suddenly resolved after treatment for congenital Bartonella and Lyme infections. (See: After 80% improvement in autism symptoms, he’s going to college.) This turn of events totally shocked our family and left us scrambling to figure out our next steps.
Before beginning treatment for Bartonella, Sammy had a tutor named Annie. This sweet, patient young woman came weekly to our home to help him organize his work and make sure he turned it in.
A few months after starting treatment, Sammy began resisting Annie’s assistance. He’d routinely exclaim, “Mom, I don’t need her help! I’m doing fine by myself!”
At first, I thought his angry behaviors were resurfacing. But then I paid closer attention to his grades and realized that he was right. My son, who had suffered with learning differences and ADHD, could suddenly do his schoolwork with no support from anyone else.
Not only did his ADHD resolve, but his grades in his core classes moved from Cs to As. What a baffling and exciting time for our family!
Learning new words
Concurrently, Sammy began asking me the meaning of all kinds of words. They were words that you would expect a 16-year-old to know, such as tremor, simmer, and immature. With Sammy’s new desire to broaden his vocabulary, we played a word game, though we never called it that.
I deliberately began to speak using larger, more advanced words, coyly embedding the meaning into the sentence to ensure he understood it. Interestingly, he was quick to try to incorporate that same word into conversation to showcase his mastery. He was a sponge! Sammy smiled proudly when he spoke, as he skillfully used a new word in a conversation.
Our vocabulary game reminded me of Forrest Gump running from the school bullies who chased him and how the braces fell off Forrest’s legs and onto the dirt road. It was as if a similar shackle on Sammy’s brain had inhibited his learning. Once it was removed, his ability to learn was remarkable.
Nurturing a new stage in learning
Before, our job as parents had involved helping him get his high school technical diploma (targeted to special education students). Now, we needed to help him catch up on all of the learning he had clearly missed due to this disease and the brain inflammation it caused. Our hope was for him to earn a full high school diploma.
This was uncharted territory.
We believed that a private school would be better equipped to handle his new, unique learning needs. But how could I even begin to explain to a school administrator what had happened, and Sammy’s unusual learning needs?
Although I thought it would be a strange conversation to have, I expected that admissions officers would be supportive and want to work with us. Instead, school after school turned us away, even ones whose mission was to support children with learning differences. Sammy’s diagnosis of autism and his previous IQ and psychological testing didn’t meet the schools’ minimum requirements.
I grew more frustrated as every school that we pursued turned us away. I was at a loss for how to help him.
Then I had an epiphany! A different and potentially better path was needed.
Changing educational gears
Since Sammy was doing well in high school, no longer requiring special education classes and wanting to attend a four-year university, we changed gears. Now, we set our sights on what he needed to learn to take his ACT and be accepted to college. We hoped to leapfrog Sammy to a new level.
This decision turned out to be a great one. A highly regarded college-testing prep school heard what had happened and were eager to help. The owner took an immediate interest in our story and moved Sammy to the top of their long wait list.
Sammy’s ACT tutor was a perfect fit – smart, fun, compassionate—and he loved singing too. Typically, a student would receive private college test prep tutoring for 2-3 months. Sammy received weekly tutoring for 10 months. With the help of this amazing school and its staff, Sammy did well enough on his ACT to gain admission to his first choice of colleges.
The future: rehabilitation from autism
I hope one day that many other families will face the same dilemma of helping their child recover from autism symptoms. With proper screening and treatment for vector-borne infections, our education system will need to redefine its services for these children.
New school programs will be required to help recovering children, a type of rehabilitation, if you will. Much like someone might need intensive occupational therapy to learn to walk again after a car accident, those recovering from autism and brain inflammation will need rehabilitation as well.
Imagine if our country could move away from Applied Behavioral Analysis therapy (ABA – designed to increase social abilities like completing tasks, communicating, and learning new skills). Currently, demand for this therapy is so high that young children must often wait years to learn basic language, coping and hygiene skills. Instead, we could enter a new era in which our children are taught to catch up in their schooling and how to refine more advanced social skills.
Therapists would need to develop new programs and be specially trained to help our recovering autistic children become the adults they were meant to be.
And of course, with proper screening and treatment prior to, or in worst case, during pregnancy, hopefully the rates of autism will see a steady decline.
I look forward to this day with great anticipation. I believe it’s not a matter of if, but a matter of when.
There are important steps needed to make this dream a reality:
1) CDC recognition of this important medical cause of autism symptoms,
2) development of effective diagnostic testing and an extensive, flexible set of criteria for a doctor to make a clinical diagnosis of tick-borne diseases,
3) development of effective, reliable and fast-acting treatments for tick-borne diseases.
We need to call on the CDC and government to treat autism as the public health emergency it is. We must screen the 7 million cases of autism to identify those who’ve been impacted by Bartonella and Lyme-related infections. The CDC needs to work more aggressively, beyond the genetic research, to follow the path of a potential infectious cause of symptoms. Bartonella should be at the top of the list.
And of course, infected parents and siblings would need to be screened and treated too.
I say all of this with much love and acceptance to all on the autism spectrum. To our autistic teens and adults, we accept and appreciate who you are. It is okay to acknowledge that you may be sick through no fault of your own. And it’s okay to get treated, so you feel better. It could change your life.
To find a doctor to screen your child for tick-borne diseases, see LymeDisease.org’s Physician Directory or your state’s Lyme Facebook group.
Debbie Kimberg can be contacted through her website. You can follow her son’s wellness journey on Instagram and TikTok at @hijackedbrains.
Disclaimer: The author is not a doctor. This article is the opinion of the author and is not intended to dispense medical advice. Please seek a doctor’s advice for diagnosis and treatment.