by Matt Richtel
Merredith’s mother had made a narrow escape from the Nazis. At its core, the experience was a story of how the body politic can overheat and turn self into other.
In Austria, Bea’s grandfather had been a baron and the personal physician to the kaiser—in effect, Austria’s surgeon general. His son, Paul Von Domeny, played an important societal role too as a doctor and World War I hero.
They were also Jews. When anti-Semitism took root after World War I, the family converted to Catholicism to avoid persecution. In the end, though, assimilation didn’t work.
The Nuremberg Laws were passed in 1935, denying basic political and social rights to Jews, who were identified not by religious belief but by bloodline. This nationalism proved to function as a kind of autoimmune disorder: Hitler was attacking productive, healthy, essential parts of the whole of Germany and Austria. On Kristallnacht, in November 1938, Merredith’s mother saw her father and mother taken into the street, put on their hands and knees, and made to lick shards of glass from broken windows.
Beatrice, Merredith’s mother, told her this one night when she was ten and they had watched a documentary on Kristallnacht. Merredith’s mother never drank alcohol, and she never cried. This night, she did both.
Merredith’s mother told her: “My parents were told they were Jewish vermin and had to clean up the street. I have never forgotten it. My mother, my beautiful mother, they made her lick until blood was gushing from her mouth. I was terrified.”
Merredith asked, “Are we Jewish?”
“We were Jewish enough.”
As the war started, Merredith’s mother and her parents narrowly escaped to London, where her father’s business had an office. They changed their name again to Sutton, so it would be neither German nor Jewish. With her parents, Merredith’s mother lived in London during the Blitz, volunteering as a Girl Guide—part of the group that was a precursor to the Girl Scouts—leading other girls into the tunnels to survive the bombing. Her grandfather, Paul Von Domeny, died in Theresienstadt, a concentration camp, in March of 1944, a victim of Hitler’s autoimmune machine.
Perhaps it is no wonder Merredith’s mother got sick.
When Merredith was a little girl in Denver, her mother had joint pain, exhaustion that felt like brain fog, and gastrointestinal troubles. Merredith and her sisters made fun of her because they didn’t know any better.
“I think about my mom sometimes and I cringe, with that little guilt,” Merredith reflected. Her mom took supplements and all kinds of pills, whatever the doctors told her to take to feel better. “She was in pain, and nobody had an answer.”
It wasn’t until the early 1990s that it was confirmed that her mother was suffering from ulcerative colitis and Guillain-Barré syndrome, a rare and nasty disorder. Here, our elegant defense, the immune system, turns against the lining that coats the ends of long nerve cells that extend along the periphery of the body. The linings of the nerves, known as myelin sheaths, are crucial because they help the body to quickly and efficiently transmit information by insulating these cells and, in effect, keeping out other information. In Merredith’s mother, though, T cells and B cells had begun to cooperate in attacking the myelin sheaths.
“Guillain-Barré is called a syndrome rather than a disease because it is not clear that a specific disease-causing agent is involved. A syndrome is a medical condition characterized by a collection of symptoms,” notes a description of the illness furnished by the National Institute of Neurological Disorders and Stroke. More evidence of the fact that there’s no bad guy to identify. Just self, turned inward.
Further proof of the autoimmune mystery comes from the same organization: “No one yet knows why Guillain-Barré—which is not contagious—strikes some people and not others. Nor does anyone know exactly what sets the disease in motion.”
The sum of this history left Merredith genetically predisposed to autoimmune disease. Then she began to experience her own trauma.
In her junior year of college at Northwestern, where she’d gone on scholarship, she was raped. She was devastated, and the assault, like so many such college incidents, went unaddressed. She returned home and never went back. And she was still dealing emotionally with a previous sexual assault. When she was fifteen, she was assaulted by a priest in the family’s church. She’d had a cold at the time, and he said he’d make her some soup. Instead, he climbed on top of her, pinned her down, tried to kiss her, stuck his tongue down her throat. She escaped, but was left wondering if there was something about her that made her a victim, made her needs invisible.
Merredith, in an email, wrote me:
Since I have told you about having a priest try to seduce me, and the collective shrug from the powers who putatively were supposed to protect me, and the same at Northwestern, I hope you understand when I say it was the same feeling: the people I trusted were fallible, maybe doing the best they could/not intentionally causing harm, but I was not important enough to cause them to vary from business as usual.
During this period, her physical symptoms became worse and finally exploded.
In the summer of 2001, Merredith and her family went to Playa del Carmen, a resort town south of Cancún, Mexico. One day they swam in the Cenotes, a series of exotic, expansive underground caves. When they got home, Merredith felt feverish and achy. Her joints hurt, the pain was excruciating—but she assumed it was just from the fever. “My head was so swollen that the top of my skull was spongy.”
Her fever spiked at 103.
She went to a doctor, who ran some tests. There was no infection. A fever of 103, and no pathogen!
A different doctor called her back. “I’m really sorry,” she recalled that he told her, “but you have lupus.” The test had shown that she had a particular antibody that was indicative of lupus—the antinuclear antibody—at more than ten times the normal levels. But it wasn’t yet proof.
She was so naive about lupus. “I thought, well, at least it’s not disfiguring.” She laughed, looking back.
Merredith was referred to a clinic in Denver and to a specialist named Dr. Kathryn Hobbs. After a few visits, Dr. Hobbs changed Merredith’s official diagnosis to rheumatoid arthritis, chiefly because there were more drugs approved for a diagnosis of RA than for one of lupus.
Merredith’s course of treatment closely followed the one given to Linda.
Merredith began taking steroids, the first of many drugs that would do as much damage to her as they did healing, leading to fatigue, infection, fever. The steroids made her feel worse. In 2002, she took methotrexate, the cancer drug intended to interfere with production of certain cells by depriving them of vitamin B. One of its “benefits” is that it suppresses the immune system. Its side effects outweighed the benefits for Merredith, who used it for two months.
It was the same with another drug she tried early on, azathioprine, which suppresses the immune system by interfering with cells at the DNA level and has a host of side effects, including some long-term elevated risk of cancer, according to the American College of Rheumatology.
In 2003, Merredith began taking Enbrel, the wonder drug.
It worked great for a while. Until it didn’t. Her symptoms got worse.
There were, by now, other options. A competitor of Enbrel was called Remicade, made by Janssen Biotech and approved by the FDA in 1999. It also worked by blocking TNF. But it wasn’t cheap; a story published in the New York Times when the drug was approved reported that a single treatment of Remicade cost $9,500, less than the $11,400 single-cost treatment of Enbrel.
In Merredith’s case, the only one profiting from her treatment was the medical industry. Monoclonal antibodies didn’t work for her. To ease the agony, she juggled heavy pain meds, like Vioxx and Celebrex, along with tramadol. More drugs, more immune system imbalance, no relief. Bloody stools, rashes, bouts of debilitating pain, and fevers, and not a damn pathogen to blame.
Then Merredith’s own rheumatologist, Dr. Hobbs, came down with strange autoimmune sy
stem symptoms. It seemed to be arthritis of the spine. The doctor had to begin her own treatment. It didn’t work. Dr. Hobbs started getting ulcers on the outside of her body—attacks that were much more pronounced than a rash, as if the skin was being eaten away.
She had developed a very rare, dangerous autoimmune condition known as pyoderma gangrenosum. It appears to involve massive stores of tumor necrosis factor going on the attack against self.
Dr. Hobbs started getting care from a dermatologist named Dr. Meg Lemon, who had vast experience in internal medicine. Dr. Lemon, coincidentally, had also been consulting on Merredith’s case.
Dr. Lemon strongly suspected that Merredith had dermatomyositis. It is a relatively rare condition, characterized by rashes and muscle weakness. But Merredith’s biopsy was negative for the condition, and she didn’t have the blood markers that accompany it.
In the office, “I had trouble convincing other people,” Dr. Lemon told me of her diagnosis of Merredith. But Dr. Lemon could see the evidence with her own eyes. She could see the rashes, and she knew of Merredith’s regular experiences with pain and weakness. “I saw her rash, and I said: This is what you’ve got.”
In the end, though, Dr. Lemon conceded that Merredith is a classic example of something she sees all the time with autoimmunity. “We listen to their stories and we try to fit them into the box, but millions of people don’t fit into a box. They’re not making up what they’re experiencing, they’re not flakes. We just don’t know what’s wrong yet.”
For these people, Dr. Lemon said, “science has not caught up yet.”
At some point, hopefully soon, the cause of the symptoms will become clearer, and a more specific treatment than Humira or Remicade or steroids will arise. Dr. Lemon noted that the progress in the last few decades has been immense. Hope is real, and reason for optimism great.
But it is also time to see the invisible women. Their plight is genuine. Witness what happened to Dr. Hobbs, Merredith’s rheumatologist.
“It was one of the most hideous fucking cases,” Dr. Lemon said.
Dr. Hobbs’s neutrophils began to eat away at her skin. Skin is the first layer of the immune system; it’s the shield. She tried all kinds of treatments to stop the attacks.
Merredith, who by now had become friends with Dr. Hobbs, said Hobbs’s treatments became a mixed blessing. They offered hope of slowing the immune system, but the double-edged sword of reducing her defenses meant that when infection came, Dr. Hobbs was less able to fight it off. Dr. Hobbs texted Merredith pictures of boils on her body.
In February 2015, she texted Merredith: “This is pretty much the most awful thing that’s ever happened to me. I can’t stop crying. I’m so scared about all these docs thinking that I’m going to die.” In March, Dr. Hobbs texted Merredith that she was close to getting sepsis, which is a systemic infection that gets into the bloodstream and overwhelms the body.
On October 9, she texted Merredith: “I’m sorry, M. So very sick right now. Trying to stay out of hospital. I have more bad bugs. I take IV antibiotics four times a day.”
Widely beloved, Dr. Kathryn Hobbs died on October 25, 2016, done in by her own immune system and the impossible challenges of threading the needle of trying to treat it.
“She died,” Dr. Lemon said, “of absolutely the most hideous autoimmune disease.”
By this time, Merredith had spent more than a decade looking for a way to put the brakes on her immune system. It ravaged her physically, emotionally, spiritually. She lathered on medicines intended to slow the attacks of her immune cells on her joints and GI tract, her skin and her heart muscle. The medicines left her open to regular infection. She was a walking pharmacy, an alphabet soup of drugs. This is the detailed list she made for me of drugs that she was taking in 2014 or had regularly taken prior to that:
Steroids (I could take them only when there was an actual infection; not sure why)
Methotrexate
Imuran
Enbrel—injections, for about a year, maybe two
Medications for pain and other side effects: Opioids (stopped taking them for pain a few years in)
Bextra, Vioxx, Celebrex
Adderall (as needed, for brain fog)
Tramadol (as needed, for pain)
Topamax, Neurontin—these are anti-seizure medications; really not sure why they prescribed them.
Valium, cyclobenzaprine—to help with sleep. Exhaustion often forces patients like me to self-medicate with caffeine, but then we can’t sleep. I ended up finally quitting the sleep meds because I was too spacy afterward, and if I combine that with lupus brain fog, it’s not a good scenario for a patient who is still trying to function and work. But I probably took cyclobenzaprine, in particular, for a decade, on and off.
She couldn’t tell what made her worse, her condition or the meds. Her own rheumatologist had an autoimmine disease and died from side effects of the same medication that had been prescribed for Merredith.
In late 2015, Merredith had awakened with a new set of symptoms. She’s a terrific writer, and nothing I can write can compare with the poignant email she sent me about what happened next:
I was sitting on my bed in the late morning after the third consecutive night of pain so bad it awakened me from a drugged sleep. I had returned from Mexico and *again* was sick, but these were new symptoms. I was exhausted, exasperated, desperate, and hoping I’d find something that would add some context or insight to what was going on.
The house was quiet; I was trying to work from home since I was too tired, and in too much pain, to go into my office. I had been up most of the night trying whatever I could: stretching, pain pills, massage, a hot bath, a cold bath—but the pain remained, like someone had plunged knives into both sides of my body and was just . . . turning and driving those knives deeper and deeper into my muscles. There was no relief, no matter what I tried.
I needed a solution: I still have a business to run and kids to parent, so I couldn’t drug myself senseless. That morning I turned to Google as kind of a Hail Mary: these symptoms were both new and excruciatingly painful, and I wanted to preemptively check on whether the new pain was maybe a part of my condition or a side effect of treatment. My rationale was, if I was going to call my doctor, I should check first that this wasn’t “part of the condition,” as I had heard so many times across the years. I typed in “minocycline + autoimmune,” thinking maybe I’d see side effects or protocols. I expected to find something reassuring; and instead I found something called “minocycline-induced autoimmune syndrome.” In short, what I was taking could either cause my condition or make it worse. I remember thinking, “What the actual f**k?” as I skimmed through those abstracts, one after the other. My doctors had prescribed chronic minocycline and told me it was “less toxic,” but either hadn’t bothered to look up the studies, didn’t know about them, or didn’t care—statistically either it worked or it didn’t. But what if the other things I was doing—avoiding sun, avoiding sugar, etc.—were what was helping, and minocycline was either *not* helping or making it worse?
What came to my brain, unexpectedly unburied, was this line from Yeats’s poem, “Among School Children”:
How can we know the dancer from the dance?
In my journey since my diagnosis up until that day, I had been a dutiful patient. I had done what they asked, minus the steroids and methotrexate family because I had unhelpfully (to them) pointed out that they made me feel worse. In just my mother, myself and my daughter, that’s three generations of women who trusted Doctors/Medical Advances to help them even as the help made them worse.
I felt like I was stepping off a path—almost physically. Alone.
I was not going to be protected or saved. It sounds melodramatic, but it didn’t feel urgent or exciting. Instead, it was just that other options had been eliminated. I could either keep taking something that had demonstrably also *caused* my disease, move on up the healthcare ladder to even more horrific treatments, like Rituxan, w
hile waiting for the next Breakthrough Drug to wend its way through the FDA . . . or I could try to help myself.
I remember looking skyward that day, one of those Boulder early winter days with coolly transparent sunlight, to where my mother must be, or must symbolically be. I asked her, out loud: “Is this tough enough yet?”
I felt immeasurably sad, but not terrified. Looking back, I think it’s because having one path closed off to you is weirdly freeing. It’s just . . . math.
A new journey began for Merredith, an experiment that was day one. Was there some way she might find to save herself (not that she hadn’t been trying already)? Merredith went back to basics, with diet, lifestyle, and a bunch of other natural methods—she researched meticulously—that offer some clues to the way many of us can find balance. (For instance, she takes vitamin D, because she can’t have sun, and a cocktail of supplements—C, B, iron, CoQ10—that have proven less toxic to her.)
Dr. Lemon has much to say on this topic. Some of it sounds counterintuitive, but now that you know more about the immune system, and its delicate balance, it should make lots of sense.
Dr. Lemon said it is not uncommon for patients with strange rashes or other unusual symptoms to come into her office with a widely used refrain: “They say their immune system is weak. They’ve gone down the rabbit hole of the Internet, reading people who proclaim themselves experts telling them to boost their immune systems. When people tell you your immune system is weak, they are wrong. Anyone who wants to boost your immune system doesn’t know what they are saying.”
Or rather, not in the way they mean it.
Dr. Lemon thinks one great way to keep your immune system in balance is to . . . eat the food you drop on the floor. Her philosophy, as she puts it, is that people need to stop oversanitizing their world so that their immune systems are introduced to lots of bacteria, parasites, and other pathogens and can react to them as millions of years of evolution have refined them to do.