By Jennifer Crystal
I knew there was something physically wrong with me, but when my blood work came back clean and I didn’t fit into any classic diagnostic box, the nurses decided the symptoms were psychosomatic.
When I first got sick during my sophomore year in college, the nurses at the health center ran the typical “college” tests: mono, strep, pregnancy. The results were negative, so they told me that my fever, low blood sugar reactions, flu-like aches, exhaustion, and pounding headaches were a result of stress. I rested as much as I could, tried meditation and deep-breathing techniques, and dragged myself to class. When my symptoms persisted, I returned to the health center. The nurses told me I was just run down.
But I’d been taking care of myself since that first visit. I was eating better and sleeping more than I had during my freshman year, when I’d stayed up late partying and subsisted primarily on pizza and beer, and yet had still been perfectly healthy. I did burn the candle at both ends, but sophomore year I couldn’t have done so had I wished. I was too tired to do any of my usual activities like running, skiing, and participating on committees. I knew there was something physically wrong with me, but when my blood work came back clean and I didn’t fit into any classic diagnostic box, the nurses decided the symptoms were psychosomatic.
“Maybe you should see someone in counseling about all of this,” one of them said.
At the impressionable age of nineteen, I worried the nurse was right; maybe these symptoms were all in my head.
Ironically, they were in my head, but not as a result of hypochondria or any mental illness. Tick-borne bacteria and parasites were attacking both my body and brain. There were real spirochetes in my head, not psychiatric illnesses. My fevers, body aches, and hypoglycemia were caused by Lyme disease, and two of its co-infections Babesia, and Ehrlichia. But it would be another eight years before a Lyme-Literate Medical Doctor would figure all of that out, and by that time, I would have been told “it’s all in your head” by more people than I can count.
Unfortunately, my plight is all too familiar to patients of late-stage Lyme disease complicated by co-infections. At some point in their journey to recovery, many have been told that they’re crazy, too. And not just by medical practitioners. Sick patients, needing only support and care, also heard this message from family members, friends and co-workers. So common is this write-off of those suffering from unknown ailments that there’s an entire chapter in Denise Lang and Dr. Kenneth Liegner’s book Coping With Lyme Disease titled “I’m Not Crazy, I Have Lyme!” When I first read that chapter after being accurately diagnosed with tick-borne diseases, I wept. I knew exactly what it felt like to be so misunderstood.
I also knew exactly what it meant to feel “crazy” from Lyme. As Lang and Dr. Liegner write,
“…talk to a thousand Lyme patients and you will get a thousand variations of the same story: people who are normally easy going become moody and belligerent; those who are outgoing become lethargic; mood swings cause the breakup of marriages and career relationships; the inability to concentrate results in job losses, plunging grades in school, and accidents; short-term memory loss affects habits and speech; and everywhere there is depression, a loss of self-esteem, and suicidal thoughts from people who have never had a history of such things.”
The important thing to recognize is that these psychological manifestations are secondary to Lyme, not its root cause. At the 2017 International Lyme and Associated Diseases Society conference in Boston, Dr. Phillip DeMio of Ohio, who specializes in pediatric tick-borne illnesses and autism spectrum disorders, emphasized the fact that psychological symptoms of Lyme are not primarily psychiatric. He drew an analogy to head injuries, noting that a person acts strange because of a concussion, in the same way that a person with Lyme disease may exhibit unusual behaviors, but that’s not because either have a pre-existing psychiatric condition.
Mental illness is real, and should be evaluated and treated with respect when it actually is the root cause of a person’s unusual behavior. But a good doctor whose patient presents with a sudden onset of psychological symptoms, without precedent in their medical history, should look for all possible root causes, which could be psychiatric, but are more likely to be tick-borne illness, or some other disease.
No one should be written off as crazy, even those with mental illnesses. The word is pejorative. If you’re experiencing new symptoms, be they physical or psychological, or if you notice behavioral changes in a friend or family member, at least be open to the idea that the root cause might be other than psychological. In my case, it was tiny spirochetes and parasites put in my system by a microscopic deer-tick. If my college health center nurses had considered tick-borne illnesses from the start my long-term health problems could have been a lot smaller, too.
 Lang, Denise and Liegner, Kenneth. Coping With Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment. 3rd ed. New York: Henry Holt and Company, 2004 (70).
Oh does this hit home…..
I’d like to say this is getting better, but I’d be lying. College kids are still showing up at support group desperate because their own mothers won’t believe them.
Something has to change, and soon.
Lyme/MSIDS is a systemic infection that when it gets into the brain can cause untold damage – even suicide.
Please support those you know who are infected. And if you are infected, develop skin of metal and do not let the nay-sayers bring you down.