Unless you see a tick and a rash, diagnosing Lyme disease can be extremely elusive. After years of disappointing visits to doctors, a functional medicine practitioner finally was able to pinpoint the cause of my debilitating symptoms, using a detailed diagnostic questionnaire. Perhaps your own search for a diagnosis was similar to mine. (I would love to hear about it in a comment!) Perhaps you are still searching for an answer, and if so, I hope my story provides some clues.
In 2012, I caught sight of an engorged tick, just before it swirled down the shower drain. Believing that was the end of it, I thought nothing of the “summer flu” symptoms I developed soon after. Fever, chills, and aches lasted for about ten days.
During the next two months, one person close to me noticed a rash on my back, but failed to mention it. Finally, almost three months after the tick’s body had circled the drain, my daughter spotted the tick’s head, still burrowed and now encapsulated under the skin near my spine, and she squeezed it out for me. I asked if there was a bullseye rash “like the Target logo” around it. There wasn’t. What a relief, I thought.
Two years later, serious health changes had set in. I had been a dynamo all my life, but now my energy was running out by mid-morning. My short-term memory had all but stopped working. Long-term memories of my childhood and my children’s early years were inaccessible. I couldn’t recall names of people I had known for years. My joints ached. My weight gradually increased, despite a good diet. I could not function, and I spent most of the day sitting or lying down.
I scheduled blood work and a visit with my primary doctor. When I mentioned the tick embedded near my spine for two months, he asked, without looking up from his notes, “Was there a bullseye rash around the site?” I answered no. “Well, we can rule out Lyme disease, then. All of your numbers look great!” he beamed. “There is really nothing wrong with you.” Relieved, I returned home, but the symptoms continued to grow worse. Blurry vision, floaters, random shooting nerve pains, and muscle weakness joined the symptoms list.
A friend who lives within a couple of miles from me had been experiencing similar symptoms. A holistic nurse practitioner told her she had “adrenal fatigue.” I decided to see the same NP. When I mentioned the tick bite, she asked about a bullseye rash. Based on my negative answer, she ruled out Lyme disease. She then diagnosed “adrenal fatigue,” and prescribed the same supplements she had given my friend. They did very little good. She also increased my thyroid medication to an unbelievably high level. That did not help either.
Returning to my primary doctor, I repeated my complaints. He referred me to an endocrinologist to test the adrenal fatigue diagnosis and to see if my thyroid was involved in the problem. This doctor did his own blood work. When I repeated my story of the embedded tick, the endocrinologist asked, as all the other doctors had, whether there was a bullseye rash. Hearing my answer, he also dismissed Lyme disease as the cause of my unusual symptoms. After months of trying to get to the bottom of it, he could find nothing. “Your numbers are great, but some of your symptoms suggest depression.” He proceeded to write a prescription for antidepressants, which I refused. As depressing as the symptoms were, I knew I was not depressed! I did not return to that doctor.
After praying to find a doctor that could help me, I heard a radio ad for Dr. Seth Gerlach of Core Health, in the St. Louis area. Although he, too, ruled out Lyme disease initially with the bullseye rash question, he did not give up or tell me it was all in my head. While he continued to search for the root cause of my issues, he started me on some supplements to improve my drainage system. I liked his philosophy toward using supplements. “I use supplements as training wheels,” he explained. “Use them just long enough to get the body to do what it’s supposed to do, and then stop.”
Once my digestion was humming along, he started me on a CellCore product to kill harmful types of microbes. I had a strong detox reaction, also called a “herx” (short for Herxheimer) reaction, from this. A herx reaction is marked by flu-like symptoms, including migraines, nausea, brain fog, and fatigue, and it is a result of the dead bodies of the microbes making their way through the body on their way out. (Ginger tea became my best friend for dealing with this!) My intense reaction to the antimicrobial treatment told the doctor not only that one of my underlying issues could be parasites, but also that my drainage system was not quite ready to handle the long-term detoxing my body needed.
While we worked on further improving drainage with gall bladder and liver cleanses, Dr. Seth learned of a fourteen-page diagnostic questionnaire published by CellCore Biosciences, the same company that produced some of the very effective products I had been using. The survey was designed to identify underlying causes of symptom patterns, including problems with organ systems, toxicity, and parasitic infections such as Lyme (borellia), bartonella, and babesia.
I filled out the questionnaire, which took two or three hours altogether. The results showed that my organ systems were working very well, which explained why the other doctors could not find anything wrong with me. However, I scored very high (and high is bad) on the toxicity and parasitic infections sections, especially in the Lyme disease category. But what about the missing bullseye rash?
I went back in my mind to the day my daughter discovered the encapsulated tick’s head in my back. She had shouted in horror, “Mom, what IS that?!” She had to have seen something bigger than just the 4mm-width raised bump that yielded the goo. Only a large discoloration could have elicited such a reaction. Searching for pictures of rashes around tick-bite sites, I found dozens of them, along with statistics showing that only about 50% of Lyme infections produce a bullseye rash. Other types of rashes are just as common with Lyme.
Later, I asked my daughter to visualize the moment she saw the spot on my back. Was there any rash? Which picture looks closest to it? She pointed to an even-toned pink rash with an irregular edge, saying “It was exactly like that one.” This confirmed the Lyme disease diagnosis from the CellCore questionnaire. No bullseye rash, but positive for Lyme. Now I could begin exploring therapies and treatments.
As you can see, diagnosing Lyme is like solving a mystery or completing a puzzle. It is different for each individual. Wherever you are in your own search for a diagnosis, do not let a doctor dismiss Lyme just because you are missing the bullseye rash!