Lyme Disease In Your Nervous System: Three Cases

“Why am I limiting this to only three cases?” I wondered. Physicians who treat Lyme, like our group at WholeHealth Chicago where we see a lot of Lyme disease patients, would tell you there are so many manifestations of Lyme when it invades the nervous system that I really should list as many as possible. But to keep this Health Tip manageable, we’ll keep it to three.

The medical term for Lyme in the nervous system is neuroborreliosis, Borrelia burgdorferi being the bacterial species left behind in your blood after the tick bites you and transfers its intestinal contents. Yes, ugh!

Once you’re bitten, the bacteria spreads quickly. First-stage Lyme sometimes produces that famous bullseye rash, making diagnosis easy. However, most people with Lyme disease remember neither a tick bite nor a rash.

Here are symptoms that can occur with the three stages of Lyme Disease:

 Stage One
–Muscle and joint pain
–Fever and chills
–Red circular bullseye rash
–Swollen lymph glands
–Stiff neck

 Stage Two
–Numbness and pain in the arms and legs
–Poor coordination
–Stiff neck
–Irregular heartbeat
–Meningitis (fever, stiff neck, severe headaches)

 Stage Three
–Chronic muscle pain
–Sleep problems
–Numbness, tingling, and pain in the arms and legs
–Difficulty finding words
–Problems concentrating
–Memory loss, including dementia-like symptoms
–Paralysis of the facial muscles (Bell’s palsy)

Stage One occurs in the days following the bite. As a side note, unlike Covid-19 Lyme doesn’t affect the lungs, but with Covid-19 and Lyme both causing fever, chills, fatigue, and muscle aching, if you live in a Lyme-rich area and think you have Covid-19 but your test result is negative, it might be a good idea to get treated for Lyme.

Treated, as opposed to just being tested for Lyme, since a positive result on a Lyme blood test may not appear for weeks.

Left untreated, many people (though not all) progress to Stage Two, usually within a few weeks of the bite. Your Lyme blood test may be suggestive of Lyme (also called equivocal), but not positive enough for many doctors to initiate treatment. This is because the CDC (Centers for Disease Control) has stringent criteria for a positive lab test result, so stringent that many doctors who work with Lyme patients see that what later turned into an obvious Lyme diagnosis had been untreated in the past.

Even the CDC reluctantly acknowledges that Lyme can be diagnosed clinically, meaning it’s okay to proceed with treatment if there’s a high index of suspicion.

Stage Three can begin weeks, months, or even years after the original bite. The average age for the initial tick bite is 11, yet significant manifestations can be delayed until adulthood. Because Lyme tests are definitely imperfect and can remain suggestive even as you keep feeling worse, you might find yourself getting really desperate as you’re repeatedly told “there’s nothing wrong with you.”

You can see from the list of symptoms in Stage Three that the bacteria are now deeply entrenched in the brain and nerves. Symptoms range from relatively mild (headache, insomnia, and electric-shock sensations throughout the body) to severe (poor concentration to the extent of an Alzheimer’s misdiagnosis, psychiatric disturbances, and chronic muscle pain).

Here are three case histories that show the diversity of experience in Lyme patients.

Case one: a university professor
With no memory of a tick bite or rash, the tenured professor became chronically ill with the symptoms of Stage One and then Stage Two before developing diplopia (double vision). Living in the UK, she saw numerous specialists until, finally, a physician familiar with Lyme made the diagnosis. In her case, the bacteria had invaded the muscles that control eye movement. Her doctor prescribed high doses of antibiotics and she improved dramatically.

The doctor cautioned her, however, that the symptoms could return at any time. Because she was moving back to the US, he gave her a list of medications and their doses to have her local physician prescribe. This sounded fairly straightforward until she found no doctor willing to write prescriptions for such large doses. Finally, she found a knowledgeable physician who prescribed the meds. Her symptoms vanished within weeks. Yes, they recur every few years, but she’s now back in the UK with her original Lyme doctor, and she feels confident about her future treatment.

Case two: the successful lawyer
In 2010, a successful young lawyer went hiking and that evening noticed two large blotchy marks on his legs, which he ignored until he felt a flu-like illness a few days later. He realized he’d been hiking in a Lyme-rich area and was prescribed just a few days of antibiotics. Had he received the three-to-four-week course of antibiotics now recommended, he might have avoided the slow but relentless deterioration of his health, his inability to work, and his financial decline into near poverty.

Nine years later, his main neurological symptoms were with focus, concentration, and word finding. He was simply unable to function as an attorney. At least six major medical centers found nothing wrong with him until more effective Lyme tests appeared on the market and he tested positive for Lyme. While he improved with treatment, he never truly regained his health.

Case three: a young man thinks he’s dying
Also not recalling a tick bite, but remembering trips to Wisconsin, this very healthy young man awoke in the middle of the night thinking he was dying. He had a fever and a splitting headache, his muscles hurt everywhere, and he was experiencing zaps that felt like brief electric shocks all over his body. He was alone in the house with his two-year-old daughter, his wife out of town at a meeting.

Wondering if he’d survive the night, he called a neighbor and asked to be checked on in the morning. He also called his wife on the west coast. After relating his symptoms, she said, “Honey, you must have Lyme disease” and told him she’d be on the next plane home.

Indeed, his tests were positive and he quickly improved with treatment. Lucky for him he was married to our nurse practitioner Katie McManigal, whose specialty is Lyme.

Be well,
David Edelberg, MD