Through the Shadowlands

by Julie Rehmeyer

  So what was I going to do? Did I believe she was going to live or not?

  And then I felt like a miracle did occur—not one that made the cancer melt away, but a miracle nonetheless. A kind of grace entered me. If my mother still believed that she could live, then she could live, goddammit. If she needed me to look at her great swollen cancer belly and be convinced she would survive, that was exactly what I was going to do. I was going to measure her belly every day, and it was going to shrink. I felt complete clarity. I wasn’t in denial about how sick she was, or how unlikely it was that she’d live. But I was somehow able to hold those contradictions all at once, to look directly at the illness and stare it down, to believe that she’d live in spite of it all. My days felt altered, heightened, as though all the mass had been drained out of the world and replaced with light.

  And then, of course, my mother died.

  When her breath slowed, the death rattle drawing out longer and longer until it stopped, I thought, Do I believe this? Now do I accept she’s dead? Is this enough to make me stop believing in my miracle? And then I fled the room.

  Flying to Miami two decades later to see Klimas, my psyche couldn’t reach toward a miracle. I’d come to believe, in a deep, preconscious way, that the world unfolded in a different pattern. I felt like this terrible thing, this illness, had been given to me, and when such things arrive, you can’t return them. The dreadful gift is yours, and the way forward is not to beg God to take it back but to stop pushing it away and get to know it, embrace it, confront it, reach absolution.

  I took that kind of observation about the nature of the hidden world underlying physical reality seriously. But at the same time, rationally, I didn’t see any reason that I couldn’t get my miracle. Some patients had great results from anti-virals, and a lymphoma drug had recently brought full remissions for a few patients. A number of patients had pursued a new theory that CFS was caused by a retrovirus known as XMRV by taking AIDS drugs (since HIV is also a retrovirus). Some reported that they had benefited, even though the research on the XMRV theory was becoming embroiled in controversy. Even if I didn’t get some dramatic recovery, I might at least find a small-scale miracle, something that would pick me up off the floor and allow me to return to my simple hundred-pound handicap.

  So sitting on the airplane, I narrowed my focus, chanting with each breath: Small miracle. Small miracle. Small miracle.

  When I staggered, semi-paralyzed, into Klimas’s office and saw the same sturdy, unflappable face that I’d seen in her pictures on the Internet, I felt like a fan girl meeting a rock star. But being crippled also left me feeling raw, exposed, as though my skin had been stripped off along with my nerve sheaths.

  Klimas smiled and said wryly, “Your legs aren’t working too well for you there! We should be able to get you feeling better.” I nearly cried.

  Klimas laid out her understanding of what this disease was, her voice warm and practical and smart. First of all, she said, she was confident that CFS is not psychosomatic. The abnormalities she’d seen in patients’ blood work were far too consistent for that.

  Her quick-and-dirty explanation for the illness was that it boiled down to neuroinflammation. That was what was screwing up my legs, she said. The international name for chronic fatigue syndrome, myalgic encephalo myelitis, fit with this explanation: “Myalgic” means pain, “encephalo-” means the brain, “-myel-” means the spinal cord, and “-itis” means inflammation. Because the name chronic fatigue syndrome is so misleading, Klimas and others often called the disease ME/CFS, as a way of sneaking the less familiar international name into the American consciousness.Ch6-2

  Klimas said that she found it useful to explain the disease as neuroinflammation because people can grasp the idea quickly and understand that the disease is real and serious. But, she said, the reality of ME/CFS is so much more: It also involves immune dysregulation and autonomic problems and out-of-whack hormones and screwed-up sleep and on and on and on, the menagerie of abnormalities that I’d found overwhelming and confusing.

  The menagerie came together, in her mind, as a problem of “homeostasis.” Ordinarily, she explained, the body regulates itself to maintain a state of health. If your core temperature gets a little low, for example, the body fires up the engines to get back to 98.6 degrees. Similar mechanisms regulate blood pH and glucose levels and oxygen levels and all the other levels, adjusting the internal physiology to maintain health. But in ME/CFS patients, the body had gotten pushed into a different mode, and the state the body worked to return to wasn’t a healthy one.

  ME/CFS patients, for example, tend to have low levels of cortisol, a hormone that fires up the body, increasing energy, immune function, and memory. Klimas said she found that when she gave patients regular supplemental hydrocortisone, she could initially get their cortisol levels up to normal. But after a while, she’d have to increase the dose again and again. The body responded to the supplementation by reducing its own production, as if it were regulating itself to maintain a lower set point. Her theory was that many complicated feedback loops stabilized the body in a very suboptimal state.

  Klimas described health and illness as two valleys with a mountain between them. If you push a ball from the floor of either valley up the side of the mountain a bit and then let go, it will roll back to the bottom of the same valley. Klimas’s job, for patients like me, was to push the ball from the valley of ME/CFS all the way up and over the mountain, so it would roll down into the valley of health. There, my body would naturally maintain that healthy state.

  Klimas’s approach was to identify as many different ways my body was out of whack as she could, and then to simultaneously nudge all of them in the right direction. Not only would that make me feel better in the moment, it might get me over the mountain.

  I asked her about the notion that chronic fatigue syndrome is a “trashcan diagnosis,” a wastebasket doctors throw unrelated patients into when they don’t know what to do with them. Is it really a single disease?

  “First, I have to say that that depends on how you define it,” she said. Neither scientists nor clinicians had settled on a single definition of the disease, which was a huge problem, especially for research. Different studies were analyzing different types of patients while describing them all as having “chronic fatigue syndrome.” Some of the definitions of the disease were so broad—for example, including all patients with six months of otherwise unexplained fatigue with no other symptoms required—that yes, patients could have entirely unrelated ailments. Many such patients, for example, were suffering from primary depression.

  But she didn’t find her patients hard to recognize. The problems they had were quite similar: fatigue, difficulties standing for long, cognitive and neurological problems, sleep issues, flulike symptoms—and most of all, an inability to tolerate exercise. Furthermore, when she took up her researcher’s role and looked at patients’ immune markers and gene expression and other biological signals, she found that they looked similar too.

  But, she said, even among her patients, there are different doors into the disease, and as a result there are different doors out as well. Some patients, she theorized, got pushed over the mountain into the valley of ME/CFS because they got a particularly terrible virus; others had messed-up hormones; others had gotten too much exposure to some environmental toxin; most had a combination of those and other nasty shoves. Each patient therefore requires a slightly different combination of counter-pushes to get them back into the valley of health.

  So does that make it one disease or many? She preferred to think of it as one, but with overlapping subgroups.

  In any event, Klimas said, the first step to getting me functional was to do loads of tests. She’d test my blood for immune abnormalities, particularly looking at the functioning of my natural killer cells, the immune system’s appointed assassins for cancer and other baddies. She’d also check the levels of tiny immune regulators called cytokines. (My ears pricked up at the word
“cytokine,” remembering the explanation offered by Rosenbaum, the very first ME/CFS doctor I’d seen, that I had suffered a “cytokine storm” after the vaccine. Klimas said yes, that’s likely what had happened, creating neuroinflammation.) She’d check various hormone levels and look for old viruses that may have seized their chance to reactivate when my immune system started malfunctioning. She’d order an MRI of my brain. She recommended aggressive cancer screening, because low natural-killer-cell functioning leaves ME/CFS patients vulnerable to cancer.

  And right in her office, Klimas would test me for a problem called orthostatic intolerance—essentially, low physical tolerance for being upright. “But I already know you have it,” she said, laughing. “Look at you!” She gestured at my nearly horizontal position, slumping down with my feet propped up on another chair. When most ME/CFS patients are vertical, she explained, their blood pressure drops and their heart rate climbs—that’s why I’d instinctively stayed as horizontal as I could. The problem, she said, is that ME/CFS patients typically have about a liter less blood than people who are healthy, and as a result, there isn’t enough available for the body to get it all the way to the brain when the patient is standing.

  I was doubtful. Even before I’d gotten sick, I’d tended to get dizzy when I first stood up, but it hadn’t gotten worse with the illness, nor did I notice my heart racing. Klimas explained that low blood pressure doesn’t necessarily manifest as dizziness. It can manifest as generally feeling like crap—and I certainly did often feel like crap when standing up.

  To formally test me for orthostatic intolerance, Klimas’s assistant strapped me tightly to a table and attached electrodes and a blood pressure cuff to my body. After the assistant monitored me for a few minutes, she tilted the table until it was nearly vertical.

  Although I was strapped tightly enough that standing was effortless, after four minutes, I didn’t feel so well. After six minutes, the assistant said my blood pressure had dropped from a perfectly normal 119/78 to 88/60. Soon thereafter, a wave of heat, light-headedness, and nausea passed over me, and I begged her to stop the test. “Wait!” she said. “I’m just about to take another reading!” She put me down moments before I would have puked or passed out. At eight minutes, she told me, my blood pressure was way below normal at 80/52 and my pulse was 140.

  Klimas’s assistant parked me in a massage chair in the waiting room and hooked me up to a liter of saline to increase my blood volume before she retested me. The massage chairs were the only luxurious things in the office. As I sank into one gratefully, it felt as basic and essential as the IV bag hanger next to me.

  While the IV dripped, I chatted with a young man who, despite his bulging muscles and strapping appearance, had been sick with ME/CFS for three years. I felt stupidly surprised to see such an apparently vital man suffering from this illness—ironic given the number of times people had told me that I looked great even as I strained under the effort of holding a conversation. The young man told me that working full-time from home was all he could do, and he was afraid even that might soon be beyond him. His first stop had been at the prestigious Cleveland Clinic, he said, where he’d been told his problem was psychological.

  When Klimas’s assistant came back for me and had me repeat the tilt-table test, I was able to finish the full 30-minute protocol, though by the end, my heart rate was somewhat elevated. So Klimas prescribed a beta-blocker to keep my heart from racing, and in lieu of IV fluids, she recommended something simpler: Gatorade. The electrolytes and water, she said, would increase my blood volume and help with the problem.

  I was oddly buoyed by failing the tilt-table test so dramatically. It wasn’t just that it suggested a treatment. My relief was more basic: Finally, a doctor had found something clearly, dramatically wrong with me. But my reaction struck me as peculiar. Wasn’t it already obvious that something was clearly, dramatically wrong when I, for example, couldn’t turn over in bed? This, however, was an accepted test, one that generated objective numbers and had nothing to do with my effort or lack thereof. It felt real.

  Klimas and I talked again after the tilt-table test, and I asked her in a small voice whether it was practical to have a child while dealing with this illness. My chest felt tight enough to crush my heart.

  “Yes!” she cried. “Do it! Don’t delay!”

  Oh my god, I thought. I can have a kid! But almost immediately, horror mixed into my exultation: How will William and I deal with that answer together?

  Klimas reported that most of her patients felt great during pregnancy. One had kept herself pregnant almost all the time because it was the only way she felt good, ending up with seven kids (a less-than-excellent strategy, I thought, for coping with illness). Klimas’s theory was that her pregnant patients felt better because pregnancy increases blood volume, helping their bodies maintain their blood pressure when they stood. Three months after birth, though, blood volume drops again and women can end up feeling terrible. Klimas assured me, though, that she would watch carefully for that and treat it before it became a problem. Studies showed no significant risks to the child, she reported, but I should get started right away: Women with ME/CFS tend to go through menopause early.

  “But will I be well enough to take care of a baby?” I asked, forcing my tongue to form the words.

  “Oh yeah!” she said. “You’re going to get better. The only thing is that you’ll have to make sure you get your sleep, which of course can be a challenge with a newborn. You’ll just need a supportive partner,” she said, beaming at William.

  Uh-oh, I thought.

  Even before we got the remaining test results, Klimas had other treatments that she hoped would help. She prescribed an immune modulator to convince my immune system that my body wasn’t under constant attack. She recommended a rather mysterious drug called naltrexone because she had discovered that tiny doses of it sometimes makes ME/CFS patients feel better—even though the drug’s primary use, at higher dosages, is to block opioids in the brain, thereby making recreational drugs less satisfying and helping addicts kick the habit. She also recommended various research-backed supplements, and as she described them, I flashed back to my meeting with Rosenbaum: This one will help the mitochondria, that one will regulate my immune system, this other one will calm inflammation.

  Sleep, she said, is a huge issue in this disease, but to figure out how to improve my sleep, she needed more information. So she recommended I start using a device to monitor my sleep, and on a follow-up appointment, she’d analyze that data to make recommendations.

  She also discussed how to exercise safely. Of course, she said, avoiding overdoing it was key. She told me to wear a heart monitor all the time and set it to beep when my heart rate got too high. She also said I’d likely do better if I exercised in a horizontal position, making it easier for my cardiovascular system to pump blood up to my head. And she recommended five minutes of exercise alternating with five minutes of rest, giving my body recovery time as I went. I told her about my miracle swim cure, and although she was enthusiastic about swimming as a good, horizontal exercise, she was as flummoxed as everyone else about why it was so restorative for me.

  None of the ideas I’d come in with passed muster for her, though. She didn’t recommend anti-virals unless my test results showed that my viral levels were very high, because the drugs, she said, are expensive and hard on patients. As I figured, the recent ambiguous results on XMRV had convinced her to discourage patients from trying antiretroviral drugs. And the lymphoma drug that I’d heard about was still highly experimental and needed more study before she could recommend it.

  Toward the end of my seven hours in her office, Klimas flopped in one of the massage chairs next to me. She had just returned from presenting at an ME/CFS conference in England, and the jet lag was making her chattily punchy. She described how challenging it was to run her clinic. She could help only a tiny percentage of the patients who needed her, but to expand, she’d need to take insurance, and t
o take insurance, she’d need to double her staff, and to double her staff, she’d have to spend more time on management rather than seeing patients. She was also frustrated that she hadn’t been able to train more young doctors in the field. There was so little research funding that ambitious young researchers were stymied and turned to other diseases.

  I asked her how her patients did—was she really able to help them? “Yes,” she said, and then paused and looked thoughtful. “I don’t think any of my patients are just stuck.” She warned me not to judge my prospects for recovery by what I read on the online patient forum, pointing out that when patients get better, they go live their lives and don’t hang out on the forum anymore.

  I felt a surge of hope—but also of skepticism. Maybe a warning like the one she gave me about the forum applied to her: Perhaps she never saw her patients who got stuck, because they gave up and no longer made the long trek to see her. But I pushed that out of my mind.

  As I left her office, I felt weak with both fatigue and relief. At last, I had found a true authority with a genuinely scientific understanding of my illness and a great deal of caring for her patients. Her very existence felt like a balm for my soul. In a way, she wasn’t doing anything so amazing—she was simply being a good doctor. But with an illness so misunderstood, being a good doctor felt like a noble and brave thing.

  William and I were planning to fly out late the next day, and before that, we planned to go to the Everglades. But in the morning, I was unable to even sit upright for long. We had to check out of our hotel room, so we sat in the car, feeling rather forlorn and homeless as I lolled lifelessly in the seat.

  Then William suggested we go to Klimas’s office so I could rest in one of her lovely massage chair recliners—brilliant. The office manager welcomed us and got me a Gatorade, and once the revolting neon-red fluid slid down my throat, presto! I felt the life come back into me. I drank a second one and was able to walk a bit. I could hardly believe it.