How to Save Your Life (While Fighting Health Insurance Conglomerates)

Lesson 1: Misdiagnosis Really Is a Thing

My health history was fairly unremarkable until, all of a sudden and without warning, it wasn’t.

I was 39 years old in June of 2019 when I first tested positive for Lyme disease. Over the past five years, I’ve been through hell and back—trying to figure how it was that one solitary tick bite could rewire my immune system and upend my life for months at a time.

Each year, the CDC estimates that approximately 500,000 Americans are diagnosed with and treated for Lyme disease, with the numbers continuing to swell. Ticks that carry the Lyme-causing bacteria, once confined to the Northeast (hence the name—from Lyme, Connecticut, where the disease was first discovered in the 1970s), are expanding to other parts of the country and the world.

One of the many complications with Lyme disease is the difficulty around diagnosis. It’s often called the “great imitator” because patients can spend months or years of their lives in search of test results that explain their odd constellation of symptoms. The tests currently in existence aren’t looking for the B. burgdorferi spirochete in your blood, because such technology doesn’t yet exist; rather, the tests detect the presence of antibodies your body has produced in response to an assortment of tick-borne bacteria.

In August of 2018, we had just relocated back to the East End of Long Island. We were moving into our home in Sag Harbor when I noticed a large, circular red rash on my lower right calf. It was unlike any rash I had ever had.

The doctor on call at our local urgent care wanted to know if I had been swimming in the bay water. I answered in the affirmative. She brushed it off as a bacterial skin infection and prescribed a topical ointment. I filled the prescription. I applied the ointment. The rash eventually went away. A few weeks later, one side of my face felt oddly numb, but that symptom, too, disappeared, until it became but a distant memory. I had young children to raise and my first book to write and a full life to live.

I have played back that scenario, over and over again, in my head. If only I could rewind the tape, I would not have opted for an ointment but demanded 21 days of doxycycline, the first-line course of antibiotic treatment when a patient has presumably been bitten by a tick. But then again, I never saw the tick. All it left behind was its trademark rash. But given the area in which we live, the doctor should have known better. There are a great many things to love about living on the far reaches of Long Island. Phenomenal medical care, I’ve come to learn the hard way, is not among them.

My body would try to tell me something wasn’t right, dropping hints here and there, but it would be months—years, really, if I’m being honest—before I’d finally pay attention.

By the following spring, my brain felt encased in an impenetrable fog. At other times, it felt like it was on fire. All of my symptoms were from the neck up. I started forgetting names. Leaving my keys in strange places. All the while, a debilitating depression and crippling anxiety started taking up more and more space until it felt as if I couldn’t take a full breath. Fatigue swept over my body like a weighted blanket. There was never enough sleep.

But one evening, while I stared at my email inbox and realized I couldn’t remember how, exactly, to send an email attachment, I knew I was toast. I burst into tears and powered things down, literally and metaphorically. It would be months before I dared to open my laptop—let alone attempt to write—again.

Lesson 2: “Out of Network” May as Well Mean Out of Your Pocket

I soon found a practitioner based in Manhattan, well versed in treating Lyme disease, who had come recommended and didn’t have a three-month-long waiting list. He also didn’t take insurance. Cue the bills, the tens of thousands of dollars that went onto credit cards we started paying off in installments.

Benjamin Asher, MD, prescribed 200 milligrams of doxycycline to be taken twice a day for three months. That summer, I remember needing to drive with white gloves on like an aristocrat from a prior century. Even a few minutes of sunlight streaming through the windshield resulted in a blistering sunburn. But little by little, I started to get better. By that fall, my mission was twofold: repair my digestive tract decimated by months of heavy-duty antibiotics and tackle my now-fragile immune system.

I began to notice a pattern: Whenever my kids got sick, I got sicker. What took them a few days to recover from often took me weeks before I had fully rebounded, only for the insidious cycle of early-childhood viruses to repeat.

But starting in the fall of 2022, I began having a similar set of neurological and cognitive symptoms, though it would be months before another practitioner would connect the dots. This time, it started with the worst depression I had ever encountered. I went on various antidepressants, none of which put so much as a dent in it. At this point, my husband drove me to a ketamine clinic on the Upper East Side, where, for $500 per infusion, I received eight doses spread across two months. Total out-of-pocket cost: $4,000.

The first dose left me with unrelenting nausea that bordered on vertigo. I burst into tears. The bottom I had reached, the things I would try in order to feel some semblance of relief. During the subsequent infusions, now pre-dosed with Zofran (an anti-nausea medication), I mostly had out-of-body experiences, often drifting through time and space. On my second to last infusion, I had a full-on breakthrough/breakdown, revisiting a childhood trauma from decades past as if it were occurring in real time. The doctor sat with me afterward, gently holding my hand, explaining that it was likely taking up more space in my subconscious than I had thought. All the things we think we’ve processed but that continue to haunt us.

After every session, I groggily made my way to the downstairs café, writing down anything and everything I could remember. Maybe in my notebook, scattered like bread crumbs, were the clues, as if written in a language I couldn’t yet decipher, that would get me well again.

Alas, thousands of dollars later, there was a brief glimmer of hope, but the needle hadn’t budged.

After all that time and money, I was right back where I started.

Lesson 3: When You’re Sick, Everyone Wants an Easy Answer

Meanwhile, my psychiatrist suggested that another source of unknown inflammation was to blame. It felt like I had gone missing, like my light had gone out. I would drop my children off at school and cancel my day and climb into bed and fall back to sleep. Who was this stranger who had taken up residence in my body? Where had I gone? And how could I find a way back to myself?

In January of 2023, continuing to look for answers, I switched medical providers, since Asher was on a medical leave of his own. Leopold Galland, MD, a functional medicine doctor I had waited six weeks to see, conducted a two-hour medical evaluation via Zoom. It was the most thorough health assessment of my life to date: from birth until present. Due to my ongoing neurological difficulties, I also booked an appointment with Olga Syritsyna, MD, a neurologist at Stony Brook University. I specifically chose her because her biography revealed she treated a fair number of tick-borne neurological diseases.

My spinal tap was a nightmare in itself, the gory details of which I will spare you, and the cerebral spinal fluid it retrieved revealed a few irregularities, but nothing as dramatic as my CDC-positive blood test from a few years back. Syritsyna next sent me for an MRI of my brain, which showed an “unusual amount of volume loss due to the patient’s age and white matter hyperintensities diffuse in nature.”

I also failed a number of basic neurological tests. Another neurologist conducted a basic assessment via Zoom and asked me, among other things, to draw a clock. When I flipped over my piece of paper to face the screen, he saw that I had drawn the number two where the 12 belongs. Based upon his facial expression, I knew the clock I had drawn was incorrect, and yet I couldn’t figure out how, exactly, to correct it. My husband, who was seated next to me, had to excuse himself. Sheer terror coursed through our household. Thankfully, our children were still at school. Was it Parkinson’s disease? ALS? Some rare form of early-onset dementia?

Given my past history with Lyme and my array of neurological symptoms, Syritsyna prescribed a month of IV ceftriaxone. Why, she asked, had I opted for oral antibiotics the first time around? (Her presumption being that I had some sort of say in the matter.) I left the hospital with a new puncture wound, a PICC line, and something called a double lumen, through which I soon learned to administer my own medication, which fed into a line that spilled out toward my heart. For the next month, I gave myself daily doses of IV ceftriaxone, assiduously following the 12-step process, the steps interspersed with the swipes of a sterile alcohol swab, so as to avoid the possibility of a serious infection.

I was near the end of treatment and had just finished a very light workout at the Sag Harbor Gym. As a lifelong athlete, it felt incredible to feel my heart again beating outside my chest, even if only walking on a treadmill at an incline for 20 minutes. Afterward, I walked into Provisions, a local health food store, which sits just across the street. It was a warm spring day, and given my short-sleeved T-shirt, if you were paying attention you could see my gauze bandage and the lumen dangling just underneath. I ran into a woman I sort of knew, and when she asked me how I was doing and I showed her my arm, she suggested I simply needed to be drinking more celery juice and taking more oregano oil. Hadn’t I read the Medical Medium? I thanked her for the unsolicited medical advice, proffered by many to this day, and headed home, tears streaming down my face.

As the weeks wore on and my brain slowly started to clear, Galland and my neurologist urged me to stay on the ceftriaxone for even longer. I didn’t disagree. But my GI tract wasn’t having it. I had been diagnosed with ulcerative colitis the prior fall, likely due to the months and months of oral doxycycline to treat my Lyme infection back in 2019. My intestines would never be the same. By the end of my month on IV ceftriaxone, I was racing to the bathroom between 10 and 20 times a day. I soon discovered the location of every single public bathroom in all of Sag Harbor.

One day, when my mother came home with a brown bag of adult wipes and Depends, I knew we had crossed a line from which I wouldn’t return. These weren’t the menstrual pads of my adolescence. My body was healing—and it was also failing me. Both of these things, I learned, can be true.

All of my usual tricks had failed me. Meditation. Journaling. Yoga. Reading. Walking. Most days, I was still swimming in a sea of despair, though brief glimmers of light occasionally appeared. I held on to those, for however long they would last, for dear life.

Lesson 4: When Adrift in a Sea of Despair, Keep Treading Water

In July of 2023, I was hospitalized at Mount Sinai Hospital for a week and given Remicade, a biologic, delivered via a three-hour infusion. The three previous doses of Entyvio, another biologic commonly used to treat ulcerative colitis, had done nothing to change the frequency and urgency with which I raced to the bathroom.

Ryan Ungaro, MD, my gastroenterologist at Mount Sinai, explained that he had to admit me because, with the drug costing between $15,000 and $20,000 a dose, UnitedHealthcare would deny the claim for weeks and weeks. And I didn’t have weeks and weeks to wait. The Remicade made a difference within 24 hours, and because of my fast response rate, I received a second loading dose 72 hours later. During my stay, I took long walks in the hallways each afternoon and often talked with other patients. One shared a Rumi poem with me. Another sent a small book of Bible verses to my room. Both felt like signs of grace, like signs to keep going. One colonoscopy and two doses of Remicade later, five days after being admitted, I was cleared to go home.

For my ulcerative colitis, I now get bimonthly infusions at Mount Sinai Therapeutic Infusion Center on Madison Avenue, which, thankfully, my insurance covers.

By last August, I felt as if my family had collectively survived a war. We took a road trip up the coast to Maine. Something that would have been inconceivable only the month prior. The whole week felt like a fucking miracle.

It’s a good thing we didn’t know what was coming.

After Thanksgiving came and went, things started falling again like the towers of blocks I used to build when my children were little. When I contacted Galland around Christmastime, my doctor patiently read back to me the exact set of symptoms I had reported to him the prior January.

Thoughts of suicide had become increasingly commonplace. There were times when I made it through not by the day but by the hour, and sometimes by the minute. My husband and mother were terrified to leave me alone. They were just thoughts, I told them. I would never do that to them—or to my children. And yet I also couldn’t imagine a future in which I routinely cycled through months of no longer wanting to be alive, vast swaths of precious time lost to chronic, unrelenting illness.

Many of my closest friends fell by the wayside. Chronic illness has a way of revealing to you exactly who your people are. But there were two friends who checked in with me daily (mostly via text). Both had battled similar demons. They knew the trick was to make it through the day. They kept telling me that this, too, shall pass. To be honest, I didn’t believe them. And yet, I held on. As a mother, as a wife, as a daughter, what other choice did I have?

A question loomed: namely, what to do next. Galland, my doctor based in Manhattan, suggested that I switch providers. He wanted someone who could see me in person and, quite literally, lay hands on me. Now in his early 80s, Galland had treated patients only via Zoom since Covid.

He recommended I see Gerald Simons, a nurse practitioner who teaches at Stony Brook University, practices out of the Morrison Center in Manhattan, and lives in East Hampton—and who is particularly skilled at treating complicated cases such as mine. Galland had heard rumors of his success with some hard-to-treat Lyme patients using Orbactiv, an off-label usage of an IV drug typically prescribed for serious skin infections like staph and MRSA. Together, the two brilliant men went to work on my case.

By the time I met with Simons, who goes by “Jerry,” I was once again a shell of my former self, barely able to care for myself, let alone my family. My mother accompanied me to the first appointment because she was worried I wouldn’t be able to locate the office in Water Mill, never mind understand this new medical provider’s assessment. On both counts, she was correct.

During the first appointment, in January of 2024, besides noting that I had tested positive for ten Lyme-specific bands, Jerry mentioned that the right side of my face had a droopy quality, something neither I nor my mother had noticed. I remembered only that for weeks, I had stared into the mirror and not recognized the person staring back. A nasal swab revealed I was also positive for both staph and strep infections.

Lesson 5: The Medicine That Will Cure You Might Make You Sicker Before It Makes You Better

Thousands of dollars and dozens of supplements and prescription drugs followed. My bathroom counter looked like that of a madwoman. Among them: amoxicillin, Alinia, Bactrim, and more vitamins and tinctures and probiotics than one human should ingest. By late February, Jerry explained that we were no longer treating Lyme but attacking the deepest, darkest cysts and biofilms that were living in my body, growing ever more antibiotic resistant over the past five years.

That month, I traveled to the Morrison Center on Park Avenue to receive my first dose of Orbactiv. It was a six-hour-long infusion, and due to the danger of an allergic reaction, the nurses circled me like hawks, checking in every 15 minutes to make sure I was feeling okay. Was my pulse racing? Was my skin itchy? Thankfully, no allergic symptoms arose. Six hours later, my husband picked me up and I climbed into our backseat and slept for the duration of the three-hour drive home.

The next morning, I awoke to the most powerful Jarisch-Herxheimer reaction I had ever experienced in all of my years of Lyme treatment. According to the National Institutes of Health, a Jarisch-Herxheimer reaction is a phenomenon that sometimes occurs in patients who are infected by spirochetes and undergoing treatment with antibiotics.

After the Orbactiv, unbelievable fatigue washed over my body. It felt as if I were being poisoned to death. Fevers and body aches came and went. For a solid week, sweat soaked through my pajamas and my bedsheets. Every night, I slept for a minimum of 12 to 14 hours. My husband moved to the downstairs guest room. My son, then 11, diagnosed me with “a sleeping sickness.” He wasn’t wrong. My husband took over the mornings—the packing of lunches and shuttling of our children to two separate schools. Upstairs, I was deep in hibernation.

But slowly, over the course of the next week, I began to regain not only my physical strength but my mental clarity. The second dose of Orbactiv, in early March, left me feeling fatigued but not nearly as debilitated as the first dose. As the week wore on, I started to research my next book and read novels again, two things that had previously been impossible. The third dose, administered in late March, again left me feeling tired the next day and unable to do much of anything. But the following morning, I awoke and was able to go about my life. I attended a basketball game for my son; I hosted a 9th-birthday party for my daughter. All the ordinary things I had taken for granted but that now lived, forever imprinted in my bones.

We all know we’re living on borrowed time. But I now seem unable to connect, or entirely uninterested in connecting, with those who haven’t faced similar hardships or losses. Chronic illness taught me that at any moment these precious things could be taken away from me. And so I am learning what it means, what it looks and feels like, to live simply for this day and this day alone.

For a patient who had been suffering from chronic Lyme disease for five years, the three doses of Orbactiv were nothing short of a miracle. I don’t use that word—miracle—lightly. Jerry and two Lyme doctors in other parts of the country compare notes and case studies.

Jerry separates his Orbactiv patients into two silos: Some need only the three loading doses, while others, whom he fondly calls his “Orbactiv frequent fliers,” need to come in for doses a few times a year when their symptoms start to flare again, not unlike the biologic infusions I receive every eight days to control my ulcerative colitis. I don’t yet know which of the two silos I will get slotted into. Only time will tell.

During my last appointment, Jerry promised to have me well by Memorial Day or thereabouts. For our grand finale, he asked if I wanted to take the “ice pick” or “sledgehammer” approach. I asked him if there was a middle option. Besides, hadn’t we already done the sledgehammer? Once each week, in addition to my daily antibiotics and supplements, I continue to go in for various IVs. Some weeks it looks like three grams of IV Rocephin (the brand name of ceftriaxone). Other weeks it looks like glutathione and vitamin C and heparin shots. There is always more blood work. There is also no script. Jerry is forever tweaking the protocol, the formula, improvising next steps based on my constellation of ever-changing symptoms.

Lesson 6: When Your Life Is on the Line, Refuse to Take No for an Answer

Meanwhile, though I didn’t yet know it, I was gearing up to fight yet another war, one that required not only an abundance of time but mental and emotional fortitude. My opponent was UnitedHealthcare, the insurance provider offered by my husband’s employer, Columbia University. For the past 20 years and counting, Sudhir Venkatesh, my husband, has been a tenured professor of sociology.

Since February, I have spent dozens of hours of my life speaking with various UnitedHealthcare representatives and their supervisors.

Orbactiv, which is manufactured by Melinta, does not have a generic equivalent and costs $4,000 per dose. After my local pharmacist received the first denial, we were told to send our appeal to OptumRx. We received a rejection not once, not twice, but three times. The letters piled up like uneaten stacks of pancakes. Every time I spoke with a UnitedHealthcare representative, they relayed a slightly different story.

From day to day, these representatives told me diametrically opposed things. Were they reading from a script? Was this a deliberate act of obfuscation? Whether they knew it or not, they were messing with the wrong woman. My life was on the line; I simply refused to take no for an answer.

Once denied by UnitedHealthcare, I applied to Orbactiv’s “patient savings program.” We were, however, immediately disqualified because we earn more than $75,000 a year, the limit for a family of four. When I asked the Orbactiv representative whether she thought that if my family made $76,000 a year, we would be able to afford $12,000 out of pocket for IV medication, plus the associated medical and administrative fees, her silence spoke for her. She eventually admitted that she, too, paid the minimum balances on high-interest credit cards in order to pay off the medical debt she had accrued over the years. The American way, I suppose. I then asked to appeal for medical necessity. Half a dozen calls to her supervisor went unreturned.

But a few days later, the Orbactiv representative left me a message letting me know that UnitedHealthcare did, in fact, cover Orbactiv. Was I hallucinating? I listened to her voice message again, playing it over and over.

After more phone calls—and hold music seemingly designed to make the listener concede defeat and hang up—I was told that, this entire time, we shouldn’t have been sending my letter of medical necessity and relevant lab work to OptumRx, because Orbactiv is an IV medication and OptumRx doesn’t handle such medications. Instead, we should have been contacting Optum Specialty Pharmacy, which supposedly handles such claims. Here I owe a huge debt of gratitude to a woman at the Morrison Center named Kimberly, who, when I grew weary and wanted to give up, kept pushing the ball forward. She refused to back down.

Due to HIPAA laws, Optum Specialty Pharmacy doesn’t accept emails, only faxes. Kimberly faxed both a two-page letter of medical necessity from my medical provider and my lab work. Despite screenshots showing it had been received, the pharmacy claimed it never got the fax. So she faxed it a second time. And then a third time.

A pharmacy representative eventually called and said they had made a mistake and that Orbactiv was indeed covered. However, she informed me there was a nationwide shortage, so they couldn’t fill the prescription because it wasn’t available.

I asked the representative to hold the line and promptly dialed Andrew at White’s Pharmacy in Sag Harbor. Only two weeks prior, I had forked over my credit card there, paying $4,000 for my first dose.

“Andrew, it’s Amanda Fairbanks. I have a representative here from UnitedHealthcare with us on the line,” I said. Andrew had been one among a small team of people responsible for keeping me alive. “Do you mind answering a quick question for me? If I needed another refill of Orbactiv, how long would it take you to get it?”

“I can probably get it here by tomorrow,” Andrew said. “No problem.”

I thanked him for his time and asked the representative to wait on the phone while I called one of the Orbactiv representatives with whom I had become well acquainted. This time a woman named Tiffany answered the phone.

“Tiffany, it’s Amanda Fairbanks calling. I’m sorry to bother you again, but I have a UnitedHealthcare representative on the line saying there’s a national Orbactiv shortage and it can’t be ordered. Is this possibly true?”

“What?” Tiffany asked. “That’s ridiculous. We definitely don’t have a national shortage.”

I thanked Tiffany for her time and promptly switched back over to the UnitedHealthcare representative. I told her I realized we all need decent-paying jobs, and I hoped hers came with better healthcare benefits than my husband’s plan did. Before she could respond, I ended the call. The representative never called me back.

Within the hour, my doctor’s office received a fax stating that Orbactiv had finally been approved. Julie, a pharmacist on Long Island, called to ask when I’d like to fill the prescription and where I would like it to be mailed. I gave her my home address.

Over the past few weeks, while I have sat on hold for a dozen-plus hours, I’ve often thought of the thousands (the tens of thousands?) of other patients around the country speaking with UnitedHealthcare representatives who are told no and who consequently go about their lives without the life-changing medications they so desperately need—or who assume tremendous medical debt for something that should be covered by their health insurance policies.

UnitedHealth Group, which owns UnitedHealthcare, and its hired hands should be ashamed of themselves. From my perspective, each and every one of them—from the CEO to the COO to the CMO to the tiny cogs in the labyrinthine machine tasked with answering calls from sick patients, only to deny them care—should be held accountable.

Eventually, each of us will pick an unlucky card and pay a visit to the kingdom of the unwell. I hope your visit is short and your departure is swift. Should you arrive in this unfamiliar place, when you are at your sickest and at your most vulnerable, my hope is that you will be treated with dignity and decency. You should never be denied the care and the coverage you need while fighting to stay alive, while fighting to save your life.

Amanda M. Fairbanks is a journalist based in Sag Harbor, New York, and the author of The Lost Boys of Montauk: The True Story of the Wind Blown, Four Men Who Vanished at Sea, and the Survivors They Left Behind. She frequently writes about the East End of Long Island for The New York Times and is currently at work on her second book, about Gardiner’s Island, a private island that has been held in the same family for 16 generations and counting.