What happens when you get caught in the Lyme Wars
By Mark Barrett
Three slowly moving poppy seed sized dots crawled up my left forearm.
Turning to my girlfriend, I pointed to the three dots, briefly explained that these were ticks that possibly carried Lyme disease, and casually informed her that she should be mindful of them.
Thinking no more of it, we carried on with our hike through Raccoon Creek State Park, little realizing that my life was about to be upended.
Three weeks later I awoke with fever and joint pain, but far more terrifying were the muscle spasms and twitching, with electric shock feelings pulsating through my body. At the emergency room, I underwent a battery of tests before a physician asked whether I had any recent exposure to ticks.
When he heard that I had, he was palpably relieved and confidently diagnosed me with Lyme disease or a tick-borne co-infection, casually prescribing two weeks of antibiotics, and authoritatively stating that I should be better by then. I settled in to await a recovery that would, in fact, not come for months.
After some initial relief from my symptoms, when the antibiotics ran out, so did my recovery. Seeing that combined with inconclusive blood tests, my physician now equally authoritatively assured me that I could not have Lyme disease. When I questioned this remarkable U-turn and the fact that I had received no testing at all for any tick-borne co-infections, he told me, dogmatically, that Lyme disease could not survive a few weeks of antibiotics.
Unwittingly, I had become collateral damage in the “Lyme wars”: the bitter debate between the medical establishment and the patients who continue to suffer symptoms and the doctors who support them.
I continued to deteriorate, dropping 50 pounds over two months with worsening muscle twitching and weakness along with migrating pain throughout my body. At this point, the pain was somewhat reassuring, since given my neuromuscular symptoms, a doctor suggested that I might be suffering from the typically painless ALS, a terminal degenerative disease.
It all began with exposure to ticks
Harrowing as this suggestion was, it seemed reasonable, considering I had begun walking with a cane and could barely climb the stairs in my home. But not that reasonable: Any such suggestion had to ignore the evidence that all my symptoms began on a definite day, three weeks after exposure to ticks.
Astounded by the refusal of my physician to even consider a tick-borne explanation and confronted with my failing body, I connected with a network of patients in similar circumstances, through groups such as the Pittsburgh Lyme Disease Support Group. I was introduced to dozens of Western Pennsylvanians who suffer from debilitating Lyme disease symptoms.
Through them I was also introduced to doctors who, dissenting from the establishment view, take seriously the evidence that tick borne infections persist and treat patients accordingly. But my own battle was only beginning.
Doctors who treat persistent tick-borne infections are an eclectic bunch, ranging from eccentric figures engaged in pseudo-science to rigorous researchers whose work has led them to recognize that the establishment consensus is wrong. Many are simply doctors who take seriously their duty of care for their sick patients.
Figuring out which doctors are which is the first step to healing, but is not easy. In my own case, this was complicated by the difficulty of keeping my job — and my health insurance. After several difficult conversations with my boss where my termination was discussed, something many Lyme sufferers experience, I managed to work out a schedule to work from home. But I had to take a reduced salary and rely on others to take dictation in typing the long law briefs when the muscles in my hands got too weak to type.
I began treating with a local Lyme doctor, but it soon became clear that despite his sincerity, I was not improving under his care. In desperation, I began seeing a leading Lyme doctor in Maryland, over four hours from my home.
I had grown accustomed to doctors becoming indignant when I asked questions, but he walked me through the scientific basis for his diagnosis and treatment. He, an Ivy League trained rheumatologist, explained the role of co-infections in Lyme treatment — it can be a very big but often unrecognized role — and the deficiency in testing for them.
He also explained that the medical establishment works with a very narrow definition of Lyme disease that doesn’t account for all its effects. He noted that the individual host’s response and immune suppression contribute to symptomology. It affects people very differently.
Although he explained his reasoning, he knew that after my experiences, I would not believe him until I started to improve. Which I did after a few more weeks of combined antibiotics and natural antimicrobials. Two months after having to walk with a cane, I was playing soccer and basketball. Although I still suffer from some symptoms, I am far closer to good health than I was before.
I learned invaluable lessons through my experiences. About doctors (they’re not infallible and there’s a lot they don’t know), chronic illness (it’s real and brutal, but some people don’t believe you), about myself and the hidden suffering of others.
But perhaps the most important lesson I learned is this: do everything you possibly can to avoid ticks.
Mark Barrett is a lawyer in Pittsburgh, Pennsylvania. This article first appeared in the Pittsburgh Post-Gazette.