And the Band Plays On: A New Plague Met With Silence, Denial

I’ve got a book in front of me: According to the cover, it’s the “20th Anniversary Edition of the Classic Bestseller.” The book is called And The Band Played On: Politics, People, and the AIDS Epidemic. It’s a parable of recent history — a history anyone over age 30 knows, and one from which we’ve learned nothing.

It was written by Randy Shilts, who in the book’s acknowledgments states, “I would not have been able to write this book if I had not been a reporter at the San Francisco Chronicle, the only daily newspaper in the United States that did not need a movie star to come down with AIDS before it considered the epidemic a legitimate news story deserving thorough coverage.”

It’s a striking statement, isn’t it, with the benefit of hindsight? What Shilts in 1987 described an epidemic we now know to be a pandemic, a global massacre by infectious disease. According to AIDS.gov, 36.9 million people currently live with HIV/AIDS and, “Even today, despite advances in our scientific understanding of HIV and its prevention and treatment as well as years of significant effort by the global health community and leading government and civil society organizations, most people living with HIV or at risk for HIV do not have access to prevention, care, and treatment, and there is still no cure.” Thirty-four million people have died from AIDS to date.

Shilts understood what others did not because, as a reporter in San Francisco, he saw the devastation in a way most didn’t. He also acquired HIV himself. His health crisis and the roadblocks that the medical community put before him as a result motivated him to investigate.

A couple of important selections from Shilts’s prologue:

Acquired Immune Deficiency Syndrome had seemed a comfortably distant threat to most of those who had heard of it before, the misfortune of people who fit into rather distinct classes of outcasts and social pariahs. But suddenly, in the summer of 1985, when a movie star was diagnosed with the disease and the newspapers couldn’t stop talking about it, the AIDS epidemic suddenly became palpable and the threat loomed everywhere.

Eventually, Shilts wrote, “there was a threat to the nation’s public health that could no longer be ignored.” But:

By the time America paid attention to the disease, it was too late to do anything about it. The virus was already a pandemic in the nation, having spread to every corner of the North American continent. The AIDS epidemic, of course, did not arise full grown from the biological landscape; the problem had been festering throughout the decade. There had been a time when much of this suffering could have been prevented, but by 1985 that time had passed. Indeed, by the time we learned that Rock Hudson was stricken … hundreds of thousands were infected with the virus that causes the disease.

It’s late May. May is Lyme Disease Awareness Month. Unlike World AIDS Day, which even Google has indexed on its calendar, and likewise unlike Breast Cancer Awareness Month, Lyme disease awareness activities don’t get much publicity. A lot of people work hard to raise awareness, but sadly it’s mostly among themselves — as was the case before Randy Shilts began to publicly document the HIV/AIDS crisis and, more significantly even in Shilts’s admission, before celebrities began to contract HIV or act out in support of AIDS patients. Elizabeth Taylor alone fast-forwarded recognition of the reality of HIV/AIDS by years and saved countless lives in doing so.

I don’t know how to make this plainer: Lyme disease is the AIDS of our time. Ask this HIV-positive man who became an award-winning HIV/AIDS activist how living with HIV compares with living with Lyme. You’ll be surprised, because all of us know how devastating HIV and AIDS have been.

It’s understandable if you don’t know or don’t believe that Lyme disease is a lifelong battle for huge numbers of people because public health agencies and the news media rarely discuss more than the nuisance rash that some (not all) people get at the onset of Lyme disease; some health writers for national news organizations have gone so far as to assert that disabling, lifelong neurological, neuropsychiatric, arthritic, autoimmune and other symptoms of Lyme disease are “likely depression,” and curable with antidepressants, and going so far as to malign and marginalize patients themselves, calling them “vulnerable, confused people,” “conspiracy theorists” and “truthers.” While upsetting, this behavior is not unprecedented: Just look to how the public, the government, and the news media at large reacted to the HIV/AIDS crisis in the early 1980s.

An episode of the Oprah Winfrey Show that documents a historic reaction to a public health crisis: Patients were blamed for their own illnesses, dismissed by a disinterested public. This episode was a touchstone for Winfey, as she broached a taboo topic that even the then-President of the United States wouldn’t publicly discuss, even as his close friend Rock Hudson plead for his life. Hudson’s pleas went ignored. He died in 1985 from AIDS-related health complications.

We are, right now, where Randy Shilts was when he wrote And the Band Played On. Yet only 30 years later, the public still can’t see what’s right in front of them. Health Scares of the Week, from Ebola to West Nile to SARS to bird flu to swine flu come and go and thus far have affected few Americans; meanwhile, one in every 100 Americans each year contracts Lyme, and many of them develop multiple sclerosis-like conditions following prescribed treatment. Patients are desperate, many going bankrupt trying to find help for their disabling condition. They are met with silence. Sometimes even with laughs.

The very title of Shilts’s book refers to the obliviousness and disinterest of, well, everyone when the AIDS crisis was emerging — there was an explosion of illness. The band played on, undisturbed and uninterrupted.

The band is playing on now, as you read this. This is one of a number of stories about Lyme disease. Some will tell you not to buy the hype, that the disease is a myth. (Here are some reasons to question that story.) Some relay more balanced information but, as with early HIV/AIDS stories — as Shilts warned, a Cassandra that no one wanted to hear until the shame of how the public reacted to the AIDS crisis was part of history, not part of the present — they tend to focus on celebrities. And by the way, the celebrity factor is stunning: The public became suddenly aware of their own risks of HIV when Rock Hudson died from AIDS complications, and when Elizabeth Taylor took on HIV/AIDS research and treatment as a lifelong commitment, and when Magic Johnson contracted it years later. A few well-known people put HIV and AIDS on the public radar.

Here’s a list of celebrities who have spoken out publicly about the devastation of Lyme disease: Alec Baldwin, Shania Twain, Avril Lavigne, Kris Kristofferson, Yolanda and Bella Hadid, Kelly Osbourne, Amy Tan, Jamie-Lynn Sigler are a few. Ashley Olsen was revealed to have been suffering with Lyme and has all but disappeared from public view since that time. Twain recently admitted that the break she took in her career was due to Lyme disease; Kelly Osbourne, too. Who can forget Avril Lagivne crying on Good Morning America, telling the world that doctors “tell you you’re crazy” when you have Lyme disease.

It’s not only doctors. Articles continue to be written asserting that people who have Lyme disease are “just depressed” or may have a more complex mental illness that makes them think they are in excruciating pain, experiencing paralysis and other symptoms that cause disability. Remarkably, people read these stories and don’t think any further. How people think, “Tens of thousands of people, including high-profile celebrities, are publicly stating that they can no longer work because of multiple sclerosis-like and Alzheimer’s-like symptoms that are treatable with antibiotics, following a tick bite, a characteristic rash, and diagnosis with Lyme disease — and all of them are imagining it or doing it for PR. That makes sense!” No. It makes no sense. This phenomenon has never in the history of mankind occurred, and it’s not occurring now. People are seriously, extraordinarily ill with a disease that has reached epidemic status, but which is always brushed off as no big deal. You need to know about this because, unlike HIV, your ability to prevent yourself or your children from contracting Lyme disease and ending up as a lost soul who can’t find help is much less under your control. One ill-fated tick bite, and your life can be changed forever.

The CDC estimates that over 300,000 Americans are diagnosed with Lyme disease each year. The CDC unfortunately also insists that Lyme can be easily diagnosed and easily cured, permanently. So strange for a public health crisis of the sheer magnitude of Lyme disease, relatively little — $24 million per year — is invested in researching the disease pathology, diagnostic tests, and treatment.

Three weeks ago, the CDC issued a report profiling five extreme cases of serious health complications resulting from intravenous treatments for presumed late-stage Lyme disease. Based upon these five extreme cases from among more than 300,000 annual cases by the CDC’s own estimate, the CDC concluded that all treatment for persisting Lyme disease is high risk and should be discontinued.

Three years ago, the Canadian parliament passed a federal law called the Federal Framework on Lyme Disease Act whose preamble reads in part:

…the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness

Think about what those words, codified in federal law by a neighboring nation, say: United States Lyme disease treatment guidelines deny existing infection and abandon sick people with a treatable illness. Take that in.

And the band plays on.

As with AIDS and Rock Hudson, respectful Lyme disease stories have made the news most often when a celebrity who has Lyme was involved. Avril Lavigne was put on the cover of PEOPLE, and she said through tears, “This is what they do to a lot of people that have Lyme disease. They don’t have an answer for them, so they tell them … ‘You’re crazy.’”

And the band plays on.

My experience was the same: The first neurologist I saw gave me thousands of dollars of tests (some of which my insurance did not cover, including an MRI I paid out of pocket for) and then concluded, “I wouldn’t be surprised if a nice, long beach vacation didn’t make all your symptoms go away.” A year later, after my leg was going intermittently paralyzed and I had double vision, I saw another neurologist. Two years and dozens of labs later, he concluded that the many lab anomalies, some of which were “very concerning,” didn’t add up to multiple sclerosis or any other known condition. “Something is definitely going on with you,” he said. “Something neurological. But unfortunately, we have no idea what it is.” And without a diagnosis, I was dismissed — that was all they could do. He told me to come back if two of the following three things happen:

  • Double vision for longer than one week, in consecutive days with no break.
  • Paralysis of a limb for longer than one week, in consecutive days with no break.
  • Incontinence. That is, losing all control of my bowels.

Otherwise, it was essentially, “We tried. We looked. We have no idea. Try to take your mind off of it because, unfortunately, that’s all that can be done at this time.” I appreciated the honesty, frankly.

And I was surprised and disappointed to discover that so many medical doctors today are one hundred percent dependent on existing laboratory tests to determine whether or not anything is wrong. Even if a patient is falling apart, in excruciating pain, even with paralysis, most doctor do not investigate once labs come back inconclusive. In my mind, this lack of medical investigation is a perfect recipe for cultivating a new epidemic such as HIV/AIDS. We now know that AIDS victims may not be symptomatic for 10–15 years, and during its incubation period, those infected can unwittingly transmit it to countless people. Within a decade, the contagion is exponential before anyone even knows the disease exists. This happened prior to the known emergence of the AIDS crisis and the HIV virus in the 80s, and it is bound to happen again if medical professionals refuse to investigate prevalent, consistently presenting medical issues about which not much is known.

Ally Hilfiger, daughter of designer Tommy Hilfiger, has been making the rounds with Bite Me: How Lyme Disease Made Me Crazy, Stole My Childhood, and Almost Killed Me, a memoir of her disastrous young life with Lyme disease. She told New York magazine: “I sat down at my computer and decided one day. I said, ‘Listen, enough is enough, I’m going to sit down and write this.’ And I started writing. There was something outside of me that was propelling me. It was my duty, and I did it,” she added.

Hilfiger said about another prominent case of Lyme, that of Yolanda Hadid (formerly Foster), a star of The Real Housewives of Beverly Hills whose devastating illness has been dismissed as a mental illness such as Munchausen’s by proxy, “It’s very sad what they’re going through, the Hadids, because nobody should ever be questioned about a disease that they’re going through, or what they’re telling people that they’re feeling … Nobody should question a disease.”

And yet they do. I don’t have the space to go into it here, but in an important series of articles called “Deconstructing Lyme Disease — Room for Debate“ (from 2013, and in desperate need of an updated take based on newer science), The New York Times discusses the Lyme disease controversy from multiple perspectives. This includes, of course, a high-profile person — Amy Tan, author of The Joy Luck Club, who describes a horrific Lyme experience that closely reflects my own. She wrote:

Many members of the medical establishment who dictate the official criteria for Lyme diagnosis, treatment and insurance coverage still maintain that Lyme is easy to diagnose. They discount research that shows Lyme bacteria can evade detection by standard blood tests. And they play down late-stage cases like mine, which require intensive, long-term treatment, insisting the disease is always cured with a simple round of antibiotics.

A slide used by the U.S. Centers for Disease Control and Prevention (CDC) during a May 24, 2016 conference call for medical professionals about Lyme disease, stating that the CDC-recommended Lyme disease blood tests are 100 percent sensitive in late-stage Lyme disease. Above, bottom: 8 discrete studies published in peer-reviewed journals concluding that these tests are 18 to 67 percent sensitive. CDC did not cite sources for its 100 percent sensitivity claim, and did not respond to a request for citation.

This is reality. One that people can’t understand and don’t seem to give a damn about until their lives are personally affected.

Last month, musician Jesse Ruben gave a live performance debuting a new song, “You Are Not Alone Anymore,” at a Lyme disease awareness event in Amsterdam. He said, “this is a song that I started writing when I was at the worst of my symptoms, and I finished when I got better. I’ve never played it for an audience because I never felt like anybody would get it.” It’s an anthem for people who live with Lyme disease, who are suffering in dark recesses not because they are sequestering themselves, but because they’ve been pushed aside. At the event, Ruben discussed how his family encouraged him to seek professional help for depression after doctors continued to tell him that his medical tests were normal, and that his symptoms may be all in his head. He sought psychiatric help. It didn’t help. Ultimately, he made a full recovery after he was properly diagnosed and treated for Lyme disease — but not before damage was done. He did need psychological help after the physical illness was under control, so that he could make sense of the trauma of the illness itself, and of being told that his illness was not real.

And the band plays on.

We all know that celebrities and well-known people have access to special treatment — yet in this truly inexplicable trend, even they are told, when they present with devastating health issues, that they are not ill — Avril Lavigne was lazy, Ally Hilfiger was crazy, Yolanda Hadid has Munchausen by proxy, Amy Tan was told that Lyme is rare and while something may be wrong — something that can’t be diagnosed — it is not Lyme. I was told the same. She started antibiotic treatment and her health improved. So did mine. So did Ally Hilfiger’s, so did Avril Lavigne’s. So did Jess Ruben’s.

If you knew someone to whom this was happening, it would blow your mind. Well, brace yourself, because based upon the sheer prevalence of Lyme, the third most common infectious disease in the country and the fastest-spreading bacterial disease, you’ll know someone soon if you don’t already. And you will wish that someone had done more about it before it happened to that person, who could be you or your child. While we fondly reminisce about those SARS and swine flu scares, Lyme disease is approaching from the horizon like a tsunami — a tsunami coming at us from all sides.

The band plays on while countless people go through this same ordeal. Those I mentioned are only a few of the high-profile people who went through this. There’s your celebrity. Pay attention. And then there’s little old me — not known to anyone, but screaming out into the world for people to connect the dots because the downplaying of the emerging AIDS virus of the 80s and the emergence of Lyme and associated tickborne infectious diseases.

The band plays on. Randy Shilts wrote that by the time the public caught on to the prevalence and severity of HIV/AIDS, it was “too late.” I hate to say this, but the same is true of Lyme. Except that, as we saw with HIV/AIDS, it’s not too late to invest in research. It’s not too late to develop diagnostic tests that work. It’s not too late to support researchers so that they can figure out how this bizarre, misunderstood and miscommunicated disease works and then find a way to manage or cure it.

Silencing conversations about epidemics is extraordinarily dangerous. Yet that is what is happening right now. A reporter from a Salisbury, Maryland news station asked the Centers for Disease Control and prevention to speak with her about Lyme disease, given that it was Lyme Disease Awareness Month. She was told:

At this time, we respectfully decline your request for an on camera interview.

She posted the correspondence on the WMDT47/ABC News website, and it’s telling of the way this disease is being handled. Over 300,000 cases per year, dismissed as insignificant and warranting $24 million in NIH funding, in favor of Zika’s emergency status (like SARS, swine and bird flus, Ebola), which is the top priority at CDC and to which Congress is considering dedicating $622 million to $1.1 billion in response to the White House’s request for $1.9 billion.

Former CDC Director Tom Frieden was quoted in the New York Times as saying: “Three months is an eternity for control of an outbreak. There is a narrow window of opportunity here and it’s closing. Every day that passes makes it harder to stop Zika.”

“This is no way to fight an epidemic,” Frieden said.

To date, Zika has affected 5,365 Americans, 224 of whom contracted it domestically.

Annually, over 300,000 Americans contract Lyme disease in this country. Think about those numbers. You can count to 224. Try counting to 300,000.

Denying funding, refusing to revise medical guidelines that are not working, denying media interviews about Lyme disease…This is no way to fight an epidemic.

I have to tell you, thinking and talking about Lyme disease brings tears to my eyes. Not only because of the terror it has brought to my life. Not only because I’ve now met hundreds of people who are going through similar stories. Not only because, despite so many high-profile cases making the news as blips that come and then are forgotten. But because this has happened before, and histories like this should not repeat. Just as I was alarmed into a state of questioning reality when I saw The Atlantic’s video last year of white supremacists in Washington, D.C. giving a Nazi salute and calling out “Heil, Trump!” I am stunned into otherworldly disbelief when I pause to reflect on how this illness — an infectious disease acquired by over 300,000 Americans every single years — is swept under the rug, patients with serious neurological, arthritic, neuropsychiatric and immunological effects routinely told by doctors that their illnesses are imagined or performed for attention, and described by editors of major national newspapers as “conspiracy theorists,” “truthers,” and “just depressed.” Even if Lyme disease patients were suffering solely from chronic clinical depression, which absolutely is not the case in most instances, do we really excuse and accept journalists diagnosing patients and mocking them? I can’t imagine any legitimate reporter or public health agency referring to someone with schizophrenia or bipolar disorder as “loony” or as a conspiracy theorist. Yet these terms are said as a matter of course about Lyme disease patients, without scrutiny and with impunity.

From And the Band Played On:

Because of their efforts, the story of politics, people, and the AIDS epidemic is, ultimately, a tale of courage as well as cowardice, compassion as well as bigotry, inspiration as well as venality, and redemption as well as despair.

It is a tale that bears telling, so that it will never happen again, to any people, anywhere.

Shilts wrote this in 1987. He died from AIDS in 1994. I, for one, am distraught that despite Shilt’s celebrated efforts to prevent this sort of injustice from ever happening again, the band plays on and no one hears it until it’s playing their song.

Washington, D.C.-based professional writer and unprofessional painter with many passions, including health, decency, Earth, asking questions and lots more.

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