Bitten: A Personal Essay by Marcie Wolf

Lyme Disease in Corvallis 

We were damp, exhausted, and giddy. The kind of elation one gets when surrounded by hundreds of morels. We had picked one clear-cut, then bushwhacked, looking for the next.  

I waded in the underbrush dripping with warm April rain, though ferns, Salal, and Vine maples. That was likely my mistake. We had only been in the car a few minutes when I felt a sharp pain on my belly. I lifted my shirt, and there it was, head burrowed into my flesh– legs flailing. A Black-legged, female deer tick;the kind that transmits Lyme disease. It was just past the nymph stage, so tiny that it was difficult to remove. 

Within two hours I was seated before a physician’s assistant, at a local quick care office. He assured me that we have almost no cases of Lyme in Oregon, and that the tick was only attached momentarily so there was little chance of contracting Lyme disease. Reluctantly, he gave me a course of antibiotics, but sternly admonished me not to take them unless I developed a Bull’s eye rash, or flu symptoms.Later, I recounted my story to our friend Gary over a beer at the local pub. “TAKE THE ANTIBIOTICS!” he said. 

I replied, “But, the doctor told me not to unless–.”  

He smacked his hand on the table in frustration. “You need to find a Lyme Literate Medical Doctor,” and he referred me to a local naturopath.  

I had no idea what an LLMD was, and I had seen a doctor. We were leaving for France in a day, and I had plenty else to think about.  

I never developed a bullseye rash or flu symptoms, but months later, my neuralgia worsened–causing pins and needles, electric shocks, and vibrations in my extremities. First one tooth hurt, then another, until they were all painful. My jaw grew tight, and I developed Temporomandibular Joint pain.  

I tried self-massage and facial exercises. My dentist said my bite was ”off.” The bite adjustments were uncomfortable, and after several visits—nothing improved. He dismissed my concern that this was not the underlying cause.  

Over the next year I saw two other dentists, a myofascial practitioner, a physical therapist, a chiropractor, an acupuncturist, an ear, nose and throat specialist, and my general physician. I begged for a referral to a neurologist or someone who might be able to locate the cause of my pain, but instead was told I had to take the antidepressant Amitriptyline before getting a referral. I’d been on it previously for nerve pain, but the pain in my face was different.  

I felt coerced, and that I wasn’t being taken seriously. After several weeks on Amitriptyline with no results, my GP gave me a referral –to a third dentist, not a neurologist. I felt demoralized. 

I developed symptoms so weird I didn’t even mention them to anyone. My bones vibrated, my jaw and tongue had spasms, my skin felt like something was crawling on me, and my eyes perceived motion –as if a bug or something was on the floor. Why bother to tell anyone. No one would believe me anyway. I resigned myself to the fact that I was on my own.  

15 months later, I looked into the mirror and saw one side of my face drooping. I was certain I had not had a stroke. I Googled Bell’s palsy, and learned it was sometimes associated with Lyme disease! Almost overnight I aged dramatically due to my facial collagen being eaten by Lyme bacteria.  

I finally consulted the LLMD my friend had recommended. Soon after beginning antibiotic treatment, many of my symptoms improved. However, because I did not treat the tick bite initially, I will now have this disease for the rest of my life. There is currently no cure. 

I had always heard Lyme disease was not prevalent in our area, and that antibiotics easily cured it. That is what the PA had assured me. But we were wrong. 

The Science of Lyme  

Lyme disease is a bacterial infection caused by the bacterium Borreliaburgdorferi. This bacteria is one of several diseases carried by the Black-legged deer tick. Here in the Willamette Valley, many birds and mammals carry ticks – even in our backyards. The Lyme spirochete is a master at evasion.  

A study done by Tulane University found that Lyme bacteria can survive a 28-day course of antibiotics – including doxycycline, an antibiotic which is known for killing a wide range of things. It has also been shown to evade detection by burrowing deep into tissues. The Lyme bacteria can also form a protective biofilm around itself, helping it to evade antibiotic treatment. The length of treatment of antibiotics must also address the reproduction cycle of the bacteria.  

To make matters worse, ticks may carry other diseases such as Babesia, Ehrlichia, Bartonella, andRocky Mountain Spotted Fever. It’s even possible to contract Babesia from a blood transfusion. In a 2017 study abstract from the National Center for Biotechnology Information, Babesia microti was determined to be the most common transfusion-transmitted pathogen in the U.S. 

In 2012, the Red Cross began testing blood supplies in endemic areas. They found individual accounts contradict reports by the Centers for Disease and Prevention, meaning people outside the endemic areas report having contracted Babesia. The ending recommendation: “Screening should be considered for all areas demonstrating ongoing risk defined as clinical cases or positive blood donors…” 

Another study done in 2016 by board-certified pathologist Alan B. MacDonald, MD, “found two Borrelia pathogens, including B. burgdorferi the causative agent of Lyme disease, thriving inside parasitic nematode worms, worm eggs or larvae in the brain tissue of nineteen deceased patients.” A tick bite delivers the nematode to the victim, and the Lyme hides inside the nematode.  

Most conventional testing is done in two ways: the Elisa antibody test and the Western Blot Test. However, a person with Lyme disease may have a compromised immune system and not show antibodies. Or, if the test is performed too soon, the person may not have developed antibodies yet. 

According to the Global Lyme Alliance, testing isn’t always very reliable. The Elisa test gives false negatives 50% of the time. The Western Blot Test is only estimated to be 80% accurate at best. Many people are wrongly told they do not have Lyme or other co-infection diseases because Lyme can be misdiagnosed as fibromyalgia, multiple sclerosis, and Parkinson’s disease.  

We need to better educate our medical professionals and public about the prevalence of Lyme disease in Oregon.  

Too many are left to suffer.  

By Marcie Wolf