MRIs and Memories...A PANDAS and Lyme Blog

I lay down on the table, fit my head into the slot. The lab tech drapes a warm sheet across my legs, gives me earplugs, then fits something cushiony over them to further cover my ears. The table slides, spaceship-like, into the cave, pulling me backwards. I stare up into a way too-close wall and close my eyes.

The knocks are deafening, resounding. Beeps go off, then the sound of someone softly sneezing again again again again. Silence. I make up stories in my head to ward off the claustrophobia and remind myself that the room is cold; I can feel the air on my bare feet that stick out from the blanket. I can breathe. I wonder, annoyed, why I don't have headphones and music as I once had previously when getting an MRI in a different location. I think about being on my bicycle, sunny days cycling with friends, talking, adding miles onto my odometer. I'm here because I want to continue cycling. Because I want to figure out how to end or at least manage the pain.

I'd been in this room before. I'd suffered these loud knocks and beeps with tiny earplugs that kept popping out, felt the vibrations of the beast as it tried to determine a medical quandary. Instead of lying on the table, I'd stood by it, holding the foot of my little son as he laid unmoving on the table so he would know I was still there for him.

Four years ago, my son received an MRI for his brain. Something was terribly wrong with my 8-almost-9 year old. Was it--a tumor? Our happy-go-lucky boy was suddenly full of tics, horrible thoughts, nightmares, even when awake. He was sleep-walking, angry, ripping things up and writing on toys. He tried to hurt himself. We had to hide all the knives and scissors in the house. What had possessed our child? 

The MRI provided no clues. We put the little guy through a couple of 24-hour EEGs that gave us no information. We tried; the doctors didn't know much, and we got no answers. PANDAS and Lyme often don't leave those types of footprints. 

He was in 3rd grade that year and since a diagnosis couldn't be made, and his life was in danger, he was eventually prescribed antidepressants and mood stabilizers. He gained 6 pounds in a month and we shifted his diet to more protein and low-sugar, which stabilized his weight. He had always been a thin, muscular little bicycle rider. He was the kid who rode 20 miles with his dad when he was 6.

In fourth grade, he cut his hand with scissors. The meds were not working although we had changed some, increased others. In fact, I had a feeling they were getting in the way of his thinking. We consulted more doctors, hospitals. There were no answers for us. A neuropsychologist met with him over several days and told us that he was depressed because he had a low IQ and couldn't meet our academic expectations. "But he read all of The Chronicles of Narnia at the age of 9--himself!" I protested; "I KNOW he's very smart!" The school psychologist agreed with me.

No one we saw knew to test for Lyme correctly. There had been one Lyme test done, LabCorp or Quest. Band 41 showed up. This wasn't enough to provoke a re-test or further examination.

Not one of the many doctors with whom we worked--pediatrician, neurologist, psychologist, psychiatrist, urologist, gastroenterologist--diagnosed PANDAS. Two hospitals missed the diagnosis.

I kept questioning and researching. I knew the doctors were wrong when they blamed our parenting skills or my depression over my son's mysterious illness or the color of the sky at the moment.... "Why do you think you know more than the doctors?" I heard but I persisted. My child's life was at stake. Something neurological was going on; I knew it. I became convinced that my kid had PANDAS.

We eventually ended up with a Best-in-our-County neurologist who also wondered about PANDAS. He put our son on 10 days of amoxicillan (not a high dose) and then concluded that maybe he didn't have PANDAS when we didn't see a change. 

He didn't know about Herxheimer's reactions, that die-off of bacteria can result in a worsening of symptoms. He didn't know about using higher doses of antibiotics for PANDAS. Apparently, he hadn't read Saving Sammy, the Boy Who Caught OCD or studied in depth Dr. Madeleine Cunningham's work (the Cunningham Panel wasn't yet on the market) or Dr. Susan Swedo's research. He didn't know that ten days was not enough. He also didn't look for Lyme Disease.

Fifth grade began and so did our first visits to real PANDAS doctors. More than a year and a half after the sudden onset, more than two years since some random symptoms emerged, my son was finally diagnosed. We saw three different doctors over the course of that year and the diagnosis was confirmed. When antibiotics didn't help, he finally received his first IVIG. During this time we briefly saw a developmental pediatrician in our vicinity who took our insurance but didn't truly understand PANDAS. He got annoyed with my son's behavior in his office.

Six months later, we had a diagnosis of Lyme as well. This led to major Herxheimer's reactions as we began treating without detoxing. He had joint pain but much of his Lyme was neurological. No surprise there, but his horrible reactions to the die-off of bacteria were shocking and life-threatening.

We quit that Lyme doctor after he couldn't help me detox my son and suggested we bring him to ER on a Sunday afternoon. We then tried homeopathy and acupuncture. The acupuncturist was fantastic and could have been a great therapist in addition to her own work. The homeopathy never kicked in and the homeopath believed that antibiotics would compromise the effects of her remedies. We tried an OCD specialist who didn't believe homeopathy would work (it worked totally for a fellow PANDAS parent who started at the same time,) yelled at me for taking notes when we met and told our son that his sister had PANDAS also. Finally, we shifted gears and after a six-month wait, saw the famous Lyme pediatrician Dr. Charles Ray Jones. Added a Lyme psychiatrist. We removed him from the mood stabilizers. His appetite fell off completely; he didn't like his favorite foods anymore. 

Sixth grade. My son broke his arm after a week of school and needed a scribe. He would go to school one day, then have trouble going the next. He never showed any fever or sickness bur constantly raged at home, cried, was not himself. "Mommy, hold me," he'd beg. "I'm gonna have a rage." By November, I had revisited a Lyme social worker for guidance and we pulled our son out of school to be tutored at home. We added one last doctor to the team although we were running up our credit card debt with all the doctor bills. She had come highly recommended.

This doctor was special. In the beginning, we didn't go to her because she doesn't work with insurance. Well, neither did the psychologist, the psychiatrist, the neurologist, the OCD specialist, the homeopath, the Lyme doctor, the acupuncturist....we were running out of money and my husband was working part time so that he could be at home to take care of our son. I was teaching other people's children, and frankly, it was sometimes a vacation to be at work.

After more IVIGs, treatment for Lyme, a diet that eliminated all the food sensitivities, after following every direction given by the integrative pediatrician and trying different remedies for our son's migraines and rages, our son suddenly returned to us. It had been over three years that we'd pretty much lost our little boy.

Over his seventh grade year, he continued to slide up and down, react to any germ that floated his way, any stressor. But he never fell quite as low as he'd been. He was excited to study for his bar Mitzvah and wanted desperately to return to school and his friends.

More and more, like a foot stuck in quicksand, our son began emerging from that dark, gritty place. We kept waiting for him to be sucked back in, but it's been many months and he's with us. A recent IVIG returned him to PANDAS world for a couple of days but he recovered. He estimates that he's about 65% there. We still have a ways to go, if we can hold onto that 65%.

My son gained some weight, lost more weight and is growing. He still wears some of the same clothing he wore a few years ago; nothing is completely linear with him. One of these days, he will go through a large growth spurt and require larger sizes. One of these days, he will be taller than me. Already, he's a stronger bicycle rider who taught himself to unicycle. 

And so I, too, have an MRI at the same place our journey started years ago. I meet with the sports doctor to discuss the pain in my right hip.  I tell her why I'm reluctant to get a steroid shot, that steroids are contraindicated for Lyme and I fear it will make my hip a breeding haven for the spirochetes. She questions my Lyme infection and wonders if it's current. I tell her that the IgGs show it's active right now. It's language doctors understand. And then I tell her just a little about my kids both having Lyme and that yes, it's congenital.

I leave her office, sad that my too-young back is showing arthritis, herniated disks and disk bulges. I come home, and with my husband's urging, make an appointment to get professionally fitted for my bicycle. Something's gotta change--either my handlebars or my bicycle. Because I'm gonna continue bicycling no matter what.