“If the cure doesn’t work, it means you don’t have Lyme disease” (NOT!)
Dr. Dan Kinderlehrer practices internal medicine in Denver, Colorado. In the following excerpt from his forthcoming book, he discusses how his personal experience with Lyme disease led him to focus his medical practice on the treatment of tick-borne infections.
Sometimes there is a moment in a person’s life that, although seemingly insignificant at the time, heralds a drastic and unalterable change in everything that follows. For me, it was August 15, 1996.
The “insignificant event” was, I thought, a virus. I had a fever and chills. The fever was high, 104 degrees, and the chills made my teeth chatter and the bed shake. My body ached so much I felt like a discarded New England Patriot’s tackling dummy.
But I had no other symptoms commonly associated with the flu, no cough or respiratory congestion, and influenza does not occur in the summer. I didn’t have the upset stomach or diarrhea typical of a stomach bug, either. I never saw an insect bite, and I didn’t notice a rash. For two days I was so sick I stopped worrying I would die, and started fearing that I would live. On the third day, it was all just a memory.
It seemed quite strange, but since I was able to resume full activity, including several three-mile runs, I didn’t think much of it—until one week later, when it hit again. Once more, the fever, chills, and muscle aches lasted two days and then went away. Still pretty strange, I thought, but since I felt well after this relapse I chose to ignore it.
Denial works well when you feel okay. But when the symptoms recurred for the third time a week later, the denial stopped working and I began to worry. This time I went to see a physician friend of mine. Upon examination, he palpated an enlarged spleen. He ordered some blood tests, and the laboratory reported a positive antibody test to Lyme. The diagnosis came as a relief. The cause of my problems was a simple bacterial infection. Two weeks of antibiotics would clear it, and then I could resume my normal life.
Was I in for a surprise!
I tolerated the antibiotics without difficulty, and the fever and chills did not return. But instead of feeling better, I felt worse. The next symptom that hit me, and hit me hard, was insomnia. One night I woke up at 4:00 a.m., and couldn’t fall back to sleep. The next night I woke up at 3:00 a.m., the next at 2:00 a.m., and then 1:00 a.m., unable to go back to sleep. This went on for weeks. I only slept a few hours a night. I was exhausted. But even worse, I became consumed with anxiety.
I would lie awake through the dark hours of the night riddled with fear. Initially the apprehension focused on my sleeplessness, anticipating the difficulty of getting through the day in my worn-out state. Gradually the anxiety generalized into a constant dread that something terrible was about to happen—impending doom.
It wasn’t rational. It wasn’t something I could control with reason. It was just always there. It felt like a black cloud was enveloping me, cutting me off from any future. It was pure existential terror. It was so intense that some nights, as I lay awake with insomnia, I shook so violently that I added disrupting the San Andreas fault to my list of fears—and I was living in Boston!
Although I’m a physician, I had little experience with Lyme. So I mustered what energy I could—I phoned a Lyme specialist in Boston at the Tufts-New England Medical Center, my alma mater, who was considered a world expert in Lyme disease and asked for advice. He listened courteously to my story as I described my history of symptoms and lab tests, but what he told me came as a shock.
“You don’t have Lyme,” he concluded.
I was confused. “Well, then, what do I have?”
“Something else,” he replied.
“But what about the lab tests?” I asked. “Using the Western blot technique, the assay demonstrated the presence of antibodies highly specific for Lyme. I even repeated the tests one month later, and they confirmed the initial results. Isn’t this the CDC criteria for the diagnosis of Lyme?”
“The laboratory must have been wrong,” he informed me.
“Why do you think I don’t have Lyme?” I responded.
“Because if you had Lyme, you’d be better by now.”
My first taste of controversy
I thanked him for his time, hung up the phone, and tried to make sense out of what I had just heard. I considered this doctor’s logic: if the cure didn’t work, I didn’t have the disease. I had had an acute illness with fever, chills, and muscle aches. I had blood tests that confirmed a diagnosis of Lyme. I lived in an area endemic for Lyme. I had seen deer ticks on our dog. I continued to feel terrible, but I didn’t have Lyme because I wasn’t better. I was getting my first taste of the controversies surrounding Lyme disease.
Next I consulted with a friend and colleague, a physician in upstate New York who treats a lot of people with Lyme. When I told him what the Lyme expert had said he replied, “Welcome to the Lyme wars.”
He informed me that there are two different Lyme camps: those who maintain that Lyme is hard to get and easy to treat, and those who believe Lyme is easy to get and hard to treat. The so-called Lyme expert was a strong proponent to the former. Given my personal experience, I now subscribed to the latter.
What is clear now is that while the Lyme expert was categorically wrong when he denied I had Lyme, he was correct that I did indeed have “something else.” The something else was a co-infection, specifically Babesia. However, this bug was under the radar in 1996. If I were taking my history now, I would immediately suspect this infection.
I have shared my story here because there are millions of people today suffering as I did: people who are losing their cognitive function, are severely depressed, anxious and irritable, in chronic pain, and tired beyond exhaustion; people who are losing their jobs, are disabled, are going bankrupt, and whose families are breaking up; people who are contemplating suicide—and sometimes following through. The toll in medical costs and lost income is huge. The toll in human suffering is beyond calculation.
No magic pill
The bad news I learned on my journey is that there is no single treatment regimen that will cure any chronic illness—no magic pill, no simple injection. Healing from chronic illness requires a multipronged and multidimensional approach. Each person is different, and treatment protocols need to be individualized. It requires assembling the pieces of a puzzle, with each person presenting his or her own clues. There is no single recipe for success.
While Lyme has been the worst thing that has ever happened to me, it has also been the best. This experience has been profoundly humbling. There were times I felt so poorly that the only way I could get through the day was to tell myself that tomorrow I could commit suicide.
But Lyme has also blessed me with deep compassion and empathy for others who are suffering. Lyme has stirred in me a passionate commitment to help others who are challenged with this illness. Lyme has filled me with hope that each and every patient coming through my office door will get well. I can’t think of anything more rewarding or more gratifying than helping people restore their well-being.
My medical practice is now limited to treating people with tick-borne infections. And despite living in Colorado, where the state Department of Health continues to deny that one can acquire Lyme disease, I have a long waiting list that keeps growing. There is a huge need out there for more Lyme literate practitioners, and I hope this book will help both physicians and patients better address this tremendous demand.
Excerpted with permission from “Recovery from Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness” by Daniel A. Kinderlehrer, MD (Skyhorse Publishing), available for preorder now.
Read another excerpt of this book: No “cookbook answers” for Lyme treatment, whether acute or chronic