Sickened by a disease that ‘doesn’t exist’: Lyme

Intuitively, I knew I had Lyme disease.

In late 2006, after suffering for weeks with flu-like symptoms and a bizarre intermittent low-grade fever, I visited my highly regarded Northern Virginia doctor and told him what I suspected.

“Lyme doesn’t exist in Virginia,” he informed me with confidence.

“But many of my friends and neighbors have Lyme in Rappahannock,” I said.

“Everyone thinks they have Lyme,” he said, dismissively.

He reluctantly tested me for the Lyme spirochete bacterium. It came back negative and I was refused antibiotics. And so the long nightmare of getting a correct diagnosis began.

My symptoms continued and I began to feel worse, now having slight breathing difficulties (later diagnosed as mild asthma). I sought treatment in Warren County, a place, according to one doctor, with an “epidemic” of Lyme incidences. (In 2011, Warren’s rate was second highest among Virginia counties.)

In Front Royal, I was handed over to a young man fresh out of medical school. Surely he’d be up-to-date on this hard-to-diagnose disease, I thought.

“You have fibromyalgia,” the young doctor said.

“What about the fever? And shortness of breath? And dizziness? And arthritic pain? And severe fatigue?”

“Does your neck hurt? Lyme patients have neck pain. Means it’s going into their brain,” he informed me.

“Doctor, that’s what I’m trying to avoid!” I said.

“Fibromyalgia,” he contended. “See it all the time.”

Once again I begged a doctor to run a Lyme test. He called me several days later to inform me it was negative, a slight cockiness to his voice. I was perplexed and frustrated. Why were the tests coming back negative? Why did these doctors not know of the disease’s pervasiveness in Virginia?

I began investigating Lyme. I soon found that Lyme did exist in Virginia, and yet the figures appeared low compared to my observations in Rappahannock. I called our local doctors’ offices. They had reported to the state health department only a few cases, but admitted the incidence was higher.

What was going on?

I spoke with the chief tick tracker of Virginia. He confirmed the figures were indeed low because, while the U.S. Centers for Disease Control mandates that doctors turn Lyme occurrence statistics into their local health departments, there are no repercussions for non-compliance.

I also discovered doctors are required to use the CDC diagnostic Lyme guidelines, whereby patients must have a positive test result and/or the telltale bull’s-eye rash to be given antibiotics. In other words, doctors were not allowed to treat patients based solely on their subjective symptoms.

Okay, so I didn’t have the bull’s-eye rash. Maybe I’d been bitten atop my head, where hair hid the rash. But why didn’t the test come back positive? After more research I found that the test is only accurate about two-thirds of the time. And the rash? About the same rate of occurrence.

These poor diagnostic tools coupled with the underreporting of Lyme led to misdiagnosis by many doctors. It was now obvious to me I had fallen through the cracks. Hence my Northern Virginia doctor — and any other doctor who hadn’t kept up with recent research, such as the fledgling Front Royal physician — was unable to diagnose Lyme correctly.

I called up The Washington Post’s “Health” section and told them of my woes. “It’s pervasive out here,” I said.

“You’re outside the Beltway. Most of our readership is inside,” an editor explained.

“But the deer are headed your direction, carrying the ticks and this disease with them.”

She graciously allowed me to write an article on the inaccuracy of Lyme testing. About the same time, the Rappahannock News let me author a three-part Lyme series in March 2007.

That summer, I headed to Colorado for vacation. A week later I took a nose dive. I couldn’t concentrate. I slept for all but two hours during the day and was only slightly functional. At one point, I told my acupuncturist I’d had a good day: I was able to make one coherent phone call.

I learned I had the Lyme “brain fog” brought on by the anaerobic conditions of high altitude. Now my neck hurt terribly. The spirochetes were happily eating their way through my central nervous system.

Now desperate, I met with a Lyme expert at Johns Hopkins. It had now been a year-and-a-half since the onset of my symptoms, I told him. The doctor had seen some 500 Lyme patients. But even though he was convinced I had Lyme, he could not diagnose it as such due to the strict CDC guidelines.

Then, as he wrote out a prescription for doxycycline, he dropped The Bomb: The antibiotics would most likely not work because I was now in “late Lyme,” a condition very difficult to treat, occurring when a patient is not treated within three months of disease onset.

I dutifully took the antibiotics for two weeks. I felt worse. I called the doctor. This to him confirmed Lyme. It was the “Herxheimer effect,” he told me, a reaction from the quick die-off of bugs and resulting detoxification stress on the body.

After four months of antibiotics, he informed me I was not likely to get better, even if he switched me to the very expensive intravenous antibiotics. I was distraught and running out of options.

One day, during aquatics, I felt as if someone had jammed an ice pick in one side of my jaw.

Weeks later, I noticed discomfort in my hand. I rubbed it. Searing pain radiated out from the point. The pain soon spread to my knees. I feared waking up in the morning for as I stood up, the burning would radiate out from my knees and envelope my entire body.

I returned to my Northern Virginia doctor, explaining I felt as if someone had doused me with gasoline and lit a match. He gave me Lyrica and told me to go to a pain doctor.

I did, but there was no magic pill. Mostly my pain slowly abated over two years due to alternative medicine. Every modality possible, approved by the FDA or not. I tried it all, and it worked. I live a pain-free life now thanks to the non-conventionall road I was forced to take after conventional medicine let me down.

The CDC last week finally came clean that Lyme is underreported, that actual cases are probably at least 10 times the reported rate. Still, more research needs to be carried out. Testing and vaccines need to be fine-tuned. Doctors need to be better informed and allowed to diagnose a patient based on subjective as well as objective criteria.

And when will all of the Lyme controversy finally be resolved?

Probably when a parade of deer climbs the U.S. Capitol steps and drops a load of ticks in the halls of Congress — which, at the rate Lyme is spreading, could happen any day.