Over the Edge (14 page)

I needed to do that. But everything within me fought it. What a horrendous, ridiculous situation. My own husband wouldn't listen, and now my only recourse was to follow the advice of my tormentor? The sick man who'd done this to me and now threatened my daughter?

My lips twisted. I
wouldn't
do what he said. Whatever he wanted, I should do just the opposite. He didn't deserve satisfaction from his evil. He deserved punishment and ruin.

A half hour seethed by as I envisioned confronting the man. Proving to Brock and the police he was real. I would prevail here. Some way.

The anger tired me. Its clods began to break up, crumble apart. In its place formed defeat. I couldn't catch this man in such a state of sickness. Neither would I woo my husband back. Truth was, Brock saw what he wanted to see. He'd already planned on leaving me. I'd just given him the perfect excuse.

Stalking Man was my enemy. Yet he was the only one who seemed to know how to help.

A long sigh escaped me. My hand rubbed across my forehead as if to buff away the knowledge that prickled there.

I needed medical help. And I wasn't going to find it among Brock's colleagues. My only recourse was to cross the Rubicon, defect to the other side. Go to the people Brock had built a career on disdaining.

I had to find a Lyme doctor.

Chapter 19

THERE WAS A CERTAIN IRONIC JUSTICE IN USING MY HUSBAND'S computer to learn about chronic Lyme disease.

In pajamas, robe, and slippers I propped myself up in Brock's chair, staring at the monitor. My brain was running slower than the Internet. For a moment I couldn't even think what words I should type into Google's search. I needed to find a doctor, but something made me key in
Brock McNeil Lyme.
Thousands of hits popped up.

I dug in. My reading was slow and plodding, but I kept at it. On web page after web page I read of Brock's insistence that Lyme is "hard to catch and easy to cure." That it is "overdiagnosed and overtreated." His name also appeared on articles run in the most prestigious of medical journals. In 2001 his committee's findings on Lyme disease were published in
The New England Journal of Medicine.
Ten years ago. I remembered when that happened. I'd been pregnant with Lauren. At the time I was thrilled at my brilliant husband's success. In that article Brock and the committee stressed that a short round of antibiotics was all that was needed to cure Lyme.

I also read web pages written by Lyme patients or their loved ones in which my husband's name seemed almost a curse. Because of doctors like him, they claimed, diagnosis and treatment for chronic Lyme were difficult to find.

Both of these sides couldn't be right. But how could Brock and his esteemed colleagues be wrong? The whole nation believed them. And
The New England Journal of Medicine
was no slouch of a publication.

My head began to pound. As my fatigue grew I slumped lower in the chair. I longed to lie down, take a nap. But I wanted answers.

As I read statements from doctors on the other side of the argument, I saw a pattern begin to emerge. Researchers like Brock often defined Lyme disease in very narrow terms, ignoring the huge list of potential symptoms patients were facing. Patients fitting these researchers' limited definition of Lyme were used in their studies, while others were disqualified. Meanwhile, doctors treating chronic Lyme spoke of how differently it could affect each patient, especially in the presence of coinfections that often accompanied the disease. Patients with Lyme plus coinfections were typically much sicker. And treating each illness required different medication.

Coinfections.
Stalking Man had mentioned those.
Did
I have a combination of diseases, as he claimed? Is that why I'd gotten so sick?

Lyme was far bigger, the experts said, and much more complex than the Brock McNeils of the world would admit. Studies of the spiral-shaped bacteria or "spirochete" that caused the illness showed how cunning and adaptable it was. In different environments it could change its outer coat of protein, making it invisible to the body's immune system. It could hide in the body's cells. Other times it could wall up like an enemy in a fort by forming a hard outer shell or
cyst
that most antibiotics could not penetrate.

All the various medications needed for long-term treatment were expensive. Insurance companies didn't want to pay.

"Hasn't your dear husband testified on behalf of insurance companies at numerous trials?"
Stalking Man's cynical words tracked through my mind.
"I believe he's been paid for his hard work on the stand."

Uneasiness gnawed at my gut.

My processing abilities were slowing, but I pressed on. I had to read many paragraphs three and four times before I could retain the information. I read about Lyme symptoms—of which I had plenty. I gazed at pictures of the deer tick that carried
Borellia burgdorferi,
the Lyme spirochete. How small the ticks could be. But the ones in California had an easy-to-spot marking—black turning to red on its back.

I typed in a new search:
Lyme tests.

Many more hits surfaced. I delved into the background of the tests' development—apparently another major issue at the heart of the Lyme wars. Tests measured the presence of certain antibodies in the blood, which the body produced in response to different proteins in the spirochete. Years ago when the criteria for reading the Western blot test were developed, the "bands" of antibodies chosen for inclusion in test results were so controversial they'd caused a huge ruckus in the medical community. For some inexplicable reason numerous bands exclusive to Lyme had been excluded from the criteria. Still the Centers for Disease Control had adopted these criteria, and doctors across the country used them to this day.

Also at issue was the series in which CDC testing was done. The CDC process was to give a test called the ELISA first. Then, if the ELISA showed positive—and only if that was the case—run its Western blot. The Lyme community insisted the ELISA test was unreliable, which resulted in many patients slipping through the cracks thanks to a false negative result.

Stalking Man's words about my Lyme test results mocked me:
"Of course it's wrong."

The saddest part was how much damage a false negative result could inflict. Lyme
could
be easily fixed if treated soon after a tick bite. But delays gave the spirochetes time to reproduce and burrow deep into body tissue. Worse, patients were often misdiagnosed with ailments such as Chronic Fatigue Syndrome, MS, fibromyalgia, arthritis, depression, and other illnesses. The misdiagnosed patients may then be given steroids to calm their swollen joints. The steroids suppressed the immune system, allowing Lyme spirochetes to reproduce all the more. The patient inevitably worsened. All because of a wrong test result.

In more recent years a few labs had sprung up that ran their own tests for Lyme, whose criteria for reading Western blot tests included bands of antibodies that better covered the spectrum of the disease. And they administered both the ELISA and Western blot tests at once. To floundering patients who'd fought symptoms like mine for years, these more reliable and complete tests finally gave them a diagnosis: Lyme. But researchers like Brock stood by the CDC criteria. All else to them was mere quackery, leading to so-called overdiagnosis.

I sat back in my chair, considering that. If Brock was wrong, what a double whammy for Lyme patients. First they were denied a diagnosis because of ineffective testing. Then, when they got worse as a result, they were denied the treatment they needed to halt the disease.

Rubbing my neck, I checked the clock. Twelve thirty. I had to eat something. I shuffled into the kitchen and chose a can of soup from the pantry. Leaning against the counter for support, I tried to pull back the tab on its lid. It wouldn't come. I pulled harder, pain shooting through my knuckles.

My hands were too weak to open a can of soup?

I set my teeth on edge and tried again. The lid began to roll back. By the time I had the whole thing off, tears filled my eyes. My hands and fingers throbbed. That would be the last one. No more opening cans for me.

What would I eat?

I poured the soup into a bowl and heated it in the microwave. Shuffled it over to the table. The bright sunlight streaming through the sliding glass door pierced my eyes all the way to the back of my head. I rummaged in our junk drawer for a pair of old sunglasses and shoved them on. The pain had intensified everywhere in my body. I made my way to a cabinet to swallow three extra-strength aspirin.

Finally I sat down at the table to eat.

Oh.
I brought a hand to my cheek. I still hadn't looked for a doctor. What was wrong with me? That's what I'd planned to do in the first place.

I concentrated on eating. Slowly the soup disappeared. When I was done I stood up and gazed with longing at the couch in the den. With much effort I turned away and headed back to the office. I collapsed into the desk chair and hooked my cane over one of its arms. The light was less bright in here. I slid my sunglasses on my head. Surveyed the computer.

Where . . . ? What was I . . . ?

I clicked the search button. Up rose all the hits for
Lyme tests.
My eye fell on one site—evidently the story of a young patient. I followed it.

My heart wrenching, I read the testimony of Karen Forshner, mother of Jamie, who'd contracted Lyme from her while still in the womb—another possibility Brock contested. Soon after birth Jamie became very ill. Lyme tests, even the CDC ones, returned a positive diagnosis. He was treated and got better. The antibiotics were stopped. And he relapsed. With more treatment he improved again—until doctors said the treatment had to stop. This cycle happened again and again. Electron microscope pictures of Jamie's tissue showed the presence of spirochete-like structures after treatment. But skeptics said they weren't
burgdorferi.
Treatment ceased for good while the Forshners awaited new tests. Over a year went by. Jamie relapsed, fell into seizures and died.

He was five years old.

Karen quoted Brock as one of the leading voices insisting Jamie did not have Lyme. Brock declared that the spirochetes would not survive a short-term bout of antibiotics.

Jamie's autopsy results proved Lyme spirochetes were still in his brain.

"If public policy was prevention oriented instead of anti-antibiotic hysteria oriented," Karen had said, "my son would be alive today. I am not alone. Other mothers have also lost their children."

I sat back, gulping air. Brock's writings about Lyme helped cause the death of a
child?
I stared at the desk, trying to wrap my mind around the thought. How did Brock sleep at night? How did he
live
with himself?

Only one way. By clinging to his opinion. If he changed now, if he refuted his own findings over the years, he'd have to face the fact that he'd helped cause pain and suffering, even death, to innocent patients.

No wonder he refused to believe me.

A second horrendous thought hit.
This
was the disease Stalking Man had threatened to infect my daughter with. I hadn't known Lyme could kill. I clearly remembered Brock insisting no one ever died from Lyme.

My weary eyes focused again on the screen. Jamie's story had taken place in the late '80s to early '90s. Brock would have been in his thirties. Young enough in his career to make a mistake. Yet he hadn't changed his tune since.

Chest tight, I read more stories. They were easier to process since they weren't full of scientific information. But the reading was so much harder. This wasn't cold data on tests and spirochetes and what constituted the disease. These were stories about real, suffering people. Those who went undiagnosed for years—until a Lyme-literate doctor finally sent them for proper testing. Children who lost years of school, adults who went from athletic to bed-ridden. Bad enough they fought such horrible illness, but at the same time they had to fight the medical community. Doctors didn't want to treat them. Insurance companies didn't want to cover their meds or disability. Many of these patients went into severe debt. Some of the doctors who did finally treat them—with positive results—were hauled before medical boards and saw their licenses revoked.
Then
they were sued by the insurance companies, who wanted compensation for the medications they'd covered for the "false diagnoses."

Dr. Brock McNeil had testified in some of those trials.

These Lyme doctors lost everything. Still their patients flocked to support them, staging rallies and raising their voices. "When will we finally be heard?" they cried. "When will science finally open its eyes to our plight?"

Nausea roiled in my stomach. How had I not known this? How had I not realized what was going on out there?

My head dropped, chin nearly touching my chest. How had I not known? Because I'd only heard Brock's side, his research. Seen his success in the eyes of the medical community. But all along there had been thousands of patients—with symptoms like mine—who longed to be well.

I leaned back in my chair, spent and sick to the core. I thought of Brock in his research every day, teaching his classes. So far removed from these patients' outcry. If he were forced to face these debilitated people every day as the Lyme doctors did, would he remain as insensitive? As certain of his beliefs?

Instead he was hidden away in his shiny lab. With his shiny little mistress.

"I want you to change your husband's mind."

No way would I ever be able to do that. No way.

I pressed the back of my hand to my forehead. Took deep breaths. My mind slid away. For a long time I sat there in suspended consciousness . . .

Doctor.

The memory arose from nowhere, and my brain snapped back. I still needed to find a doctor.

My fingers groped their way to the keyboard. I typed in
Lyme literate doctors
and hit
Search.
Over 12,000 sites came up. My exhausted eyes started to run down the list when a name snagged.
Carol Johannis.
I turned it over in my mind. Dr. Johannis. Yes. I'd heard Brock speak that name in derogatory terms. Some vague memory whispered she was local.