And the Band Plays On

December 1, 2017 Update: In response to  a number of people telling me that their Lyme-related cognitive problems (which I understand all too well!) make it difficult to get through lengthy written articles like this, I am creating audio podcast episode versions of some articles, in addition to new content, including interviews with experts, authors, Lyme patients, et al. If you’d prefer to listen, scroll to the end of this article for the audio version.

I’ve seen more Lyme disease headlines over the past couple of months than ever before. It’s a good thing and a terrible thing. It means that news organizations and magazines are finally paying attention to this often-devastating disease and making an effort to inform the public about it. It’s a bad thing because, as has been the lede of many of the stories, researchers have predicted that 2017 will be one of the worst on record for new Lyme infections because of a mild winter and a warming climate in general that is making more of the country a haven for ticks.

A Google search of news that mentioned Lyme disease over the past 30 days (March 26 – April 26, 2017) returns 43 pages of results. That’s a lot. By comparison, searches for other common and life-affecting infectious diseases HIV and Zika return 72 and 32, respectively.

Comparing these results to basic facts about the disease highlights some details that warrant discussion:

In this way, it’s easy to see that Lyme is by far the most prevalent infectious disease, and yet it receives a token amount of federal research dollars, particularly when broken down on a per-patient basis. And yet Lyme makes the news more often. The news media, in other words, show a greater acknowledgment of the disease than federal public health agencies. That comes down to the nature of the news, though; as I’ll discuss below, most of the substantive coverage of Lyme comes from local news outlets, and the reason for this is that those outlets reflect the realities of their communities—whereas national news organizations are more likely to report what they are told by federal health authorities are the reporting priorities. This designation is supremely important to keep in mind.

The news and other media don’t acknowledge this.

In reviewing the news stories about Lyme found over the past 30 days, most of them fall into a few general buckets:

• Lyme disease is on the rise because tick populations are exploding.
• Climate change is leading to expanding tick habitats.
• Check for ticks after you go outdoors or you’ll be sorry.
• You Won’t Believe How This Medical Mystery Turned Out.
• [Insert Celebrity Name] Models New Sunglasses After Bravely Surviving Lyme Disease And Curing Herself With Forty-Six Million-Dollar Experiment Treatment In Germany and Southeast Asia!

Don’t get me wrong, all of these stories (yes, all of them) are worth telling as long as they are told responsibly. But they’re repetitive and they almost never relay any new information. They also aren’t particularly helpful in the fight against this raging epidemic. Stories that describe Lyme symptoms and how to check for and remove ticks safely are useful, of course, but these stories too often really do describe the basics and in doing so emphasize, for example, the importance of the bullseye rash that accompanies recent Lyme infections. Unfortunately, many people who contract Lyme never see or develop this telltale rash. A growing number of stories about Lyme also report concerns about the poor reliability of Lyme disease blood tests, which is a good thing, but many still do not, and that oversight can cost a patient dearly if that patient happens to be one whose blood tests come back negative despite his or her having contracted the disease.

There’s another pattern in Lyme disease reporting that I and many others in the Lyme community find interesting. Most people tend to rank national news broadcasts and networks as “top tier” journalistic entities, with local news taking a backseat. This paradigm is without a doubt flipped when it comes to reporting Lyme disease.

National news broadcasts, with few exceptions, report the most basic of basics: evening network broadcasts and national newspapers, for example, will report the link between climate change, ticks, and Lyme when this story comes out. Morning news-entertainment programs, cable news, and national magazines are likely to focus on celebrity stories that inevitably tie together a personal horror story that ends happily with book or fashion product sales, “medical mystery solved!” stories accompanied by a few basic (and sometimes wrong or partially true) facts from federal officials—and that’s all.

The best and most responsible broadcast news reporting about Lyme that has been done to date was the 2016 “Lyme and Reason” special produced by local New York City news station FOX5NY (no relationship to Fox News cable network). It took years before the U.S. responded appropriately to the HIV/AIDS epidemic, but when it did respond, it did so comprehensively and aggressively—because everyone was at risk of contracting HIV not only from sexual relationships, but also innocently through blood transfusions and immorally (as reported at the time) through shared drug needles.

Well, it so happens that the risk of contracting Lyme disease—and, though you almost never hear about it, other equally devastating diseases along with or instead of Lyme, all from tick bites—is even greater than the risk of contracting HIV. And while many choose to reject this reality, the consequences can be as devastating. Unlike HIV in the 80s and 90s, many people who contract Lyme are treated shortly after infection and appear to make a full recovery. However, a share of patients—growing rapidly—becomes progressively worse despite short-term antibiotic treatment, with poorly understood illness that can be as severe as (and misdiagnosed for) multiple sclerosis, lupus, and even ALS. Lyme can infect the brain and in doing so it can cause severe psychiatric problems that can mimic anything from bipolar disorder to schizophrenia. Lyme can infect the heart and cause people who outwardly appear to be young and healthy to drop dead without warning. Such events are reported selectively when they happen, but news media tend to take an “if it bleeds, it leads” approach and report the shock factors of such stories without tying together the fuller picture. This is a mistake for public health.

Twitter has become a primary communications outlet, for better and worse.

Over the past 30 days, the U.S. Centers for Disease Control and Prevention—the agency responsible for protecting the public’s health interests—has tweeted alarming information about Zika virus over 20 times. The CDC has tweeted three times about HIV.

The CDC has tweeted twice in the past 30 days about swimming pool pee. Really.

Don’t pee in the pool! Pee in the pool mixes w/ chlorine & uses it up, leaving less chlorine to kill germs. https://t.co/pbZucZ13Sn pic.twitter.com/eh56DNnkOY — CDC (@CDCgov) March 31, 2017

Red eyes or irritated nose/throat after swimming? Pee mixed w/ chlorine can create a chemical irritant for swimmers. https://t.co/pbZucZ13Sn pic.twitter.com/GcBg6SakNl — CDC (@CDCgov) April 15, 2017

The CDC has tweeted zero times in the past 30 days about Lyme disease.

For reasons unknown, the federal agency charged with public health very rarely addresses Lyme disease despite its extreme prevalence and severity. This isn’t my opinion; last year, Emily Lampa, a reporter for Salisbury, Md.-based news station 47ABC, disclosed that she had been attempting to secure an on-air interview with a CDC expert on Lyme during May, which is Lyme Disease Awareness Month, and the CDC declined an on-camera interview because of its Zika efforts. At the time, the CDC was aggressively petitioning Congress for over a billion dollars of emergency funding to combat Zika, which it was awarded. It is worth remembering that Zika has infected approximately 5,000 Americans (300 of whom contracted it on U.S. soil), while 329,000 Americans contract Lyme on U.S. soil every year. (Note: I asked CDC for an interview about Lyme disease recently, and received written responses to my questions. With respect to prevalence–versus–funding discrepancies between Zika and Lyme, a CDC spokesperson stated: “Lyme disease is a public health priority for CDC, but we don’t determine Congressional funding levels. CDC receives its funding from Congress, which appropriated $10.663 million to CDC for Lyme disease in FY 2016. For information on the budget for FY 2017, please contact the Office of Management and Budget.” I will post this Q&A over the coming weeks, during Lyme Awareness Month.)

The Unasked Questions

There’s more to Lyme disease than “check for ticks” and “here are the symptoms” and “ask your doctor.” These talking points are without a doubt primary advisories in the public interest—but this exclusive focus on prevention, which also is the CDC focus, excludes the most devastating aspect of Lyme disease: patients who did get to the doctor, and who despite treatment are failing terribly. These stories are told as medical mysteries from time to time, and as celebrity-survivor stories. But what’s missing in coverage of Lyme is the full picture.

This may be in great part due to the lack of information to tie together the full picture…but as a writer, I am driven by curiosity. Curiosity is driven by questions and answers—and a dogged pursuit of answers even when none are not easily available. I always thought that this also is what drives investigative journalism.

When I pitch stories about Lyme, I’m frequently told by editors that “we give a lot of attention to Lyme.” To which my response is, yes, I read your many stories about tick populations and bull’s-eye rashes. But when was the last time you published or broadcast a story that even asks any of these or more in-depth investigative questions?

• When Lyme disease affects so many people in the United States, why is the federal government doing so little to research it or even talk about it, yet gives so much attention to far less common diseases, such as Zika and West Nile virus, swine and avian flu, and even SARS? (Lyme has been prevalent throughout the history of these diseases, all of which drove headlines.)
• Why do so many patients who are treated with Lyme disease go on to become sicker and sicker?
• What is behind the common depiction of these patients as mentally ill and not physically ill?
• When Lyme disease can affect the brain—just like closely related syphilis—and cause mental illness, why are patients who are diagnosed with Lyme and who display symptoms of mental illness dismissed as crazy rather than treated for a physical disease that can produce mental illness as a symptom, not a cause?
• How common are other tickborne diseases that coincide frequently with Lyme disease, such as the malaria-like babesiosis, the scar-producing bartonellosis, the Alpha-gal red meat allergy and others? If they are also on the rise due to growing tick populations, why are they never discussed by news media or by public health agencies?
• Why is there a “Lyme war,” with the CDC and infectious disease doctors on one side, claiming that all cases of Lyme are easy to diagnose and permanently cure, and patients, Lyme disease specialists and some lawmakers on the other side who claim that many people become chronically ill to the point of disability unless they are provided ongoing treatment? (And a related question news producers, editors and writers need to ask themselves: Why do we always defer to the opinions of the health authorities over the first-hand experiences of thousands of patients?)
• Beyond interviewing celebrities who write about Lyme disease as part of book promotion tours, do we ever consider how these stories add up? The pool of well-known people is a small one, so what does it say about how common Lyme disease is when Kelly Osbourne, Avril Lavigne, Yolanda (Foster) Hadid and two of her children, Kris Kristofferson, Ally Hilfiger, Daryl Hall, Marla Maples, Amy Tan, Alice Walker, Jennifer Capriati, Debbie Gibson and Jamie-Lynn Sigler all have spoken in national media about the devastating severity of their Lyme disease, as well as the extreme challenges treating it. Kelly Osbourne says the disease almost killed her. Avril Lavigne bawled on morning news programs that doctors told her she was “crazy” and not sick at all (also my experience, and also the experiences of thousands of people who have contacted me over the past 18 months). Kris Kristofferson was diagnosed with Alzheimer’s and told it would kill him; when he was correctly diagnosed with Lyme disease, he was given extended antibiotic treatment and his dementia improved greatly. Without treatment, he would have “died from Alzheimer’s.” Daryl Hall has called Lyme a “scandal” and a “quiet plague.” Amy Tan has openly discussed hallucinations produced by the disease that she needed her pet to help her discern whether they were imagined or not; with antibiotic treatment, these and crippling physical symptoms went away. Ashley Olsen was reportedly diagnosed with Lyme disease a couple of years ago and hastily disappeared from public view. She is no doubt suffering in private. What does all this say about the disease? If so many well–known and wealthy people suffer from it, how many average people suffer from it, and how much worse is their suffering without the financial resources that these celebrities have? Why is Lyme addressed only by news media as a seasonal health advisory and not investigated as what it is—a historic plague that is being downplayed by the very agencies responsible for protecting our public health?

Surely someone in the news media has the wherewithal to question and challenge public health officials when those officials claim that Lyme is being addressed responsibly and adequately, and that the huge numbers of patients who seek help for their ongoing suffering are fully cured and simply need to “talk to a counselor who can help you find ways of managing your life,” as the CDC ultimately advises patients whose bodies stubbornly have refused to accept that they are totally well.

Lyme disease is more than a disease-of-the-month story, as inconvenient as that may be. It’s an investigative story, and it needs to be assigned to competent, curious, demanding, won’t-take-empty-rhetoric-for-an-answer investigative journalists. If only there were any way to convince the New York Times, the Washington Post, broadcast news producers. I’ve spoken with representatives of all of these, and aside from a few one-off outings such as this excellent 2013 “room for debate” feature published by the New York Times…most national news outlets just don’t want to go there.

Why not, though?

This is an epidemic that affects anyone who steps foot outdoors. The discrepancies are glaring, the socio-medical and scientific research controversies are oh so juicy. Why are so few of us giving this story the nuanced, detailed coverage it demands?

May is Lyme Disease Awareness Month, and during the month I will investigate these and other questions about Lyme. My life has been devastated by this illness. That was the motivation for the first article I wrote about it, comparing today’s Lyme epidemic to that of the HIV/AIDS outbreak. Now, 18 months later, I have heard from and met countless people who are in the same predicament I am—or much, much worse. Some are bedridden, some in constant agony.

When I was growing up, my mother always told me I would argue with God. My answer now is the same as it was then: If God lied to me, didn’t make any sense, or couldn’t give me a reasonable explanation for why He does what He does, of course I would. Why would any omniscient entity have created me as the stubborn person I am if it didn’t want me to be who I am, and what kind of God would respect me if I didn’t seek truth even when doing so may be uncomfortable? That’s how I’ve always seen it.

Federal agencies should never be mistaken for God—not in this country—and yet they’re generally accepted as unquestionable, absolute authorities.

All any of us wants is goodwill efforts made towards finding answers to the mysteries that no one wants to talk about.

This May, I’m going to ask some questions. And if it takes arguing with godlike authorities and risking criticism, well, given the stakes and the suffering we’ve already been through some of us (shout out to my fellow bold HuffPost bloggers Dana Parish, Mary Beth Pfeiffer and Dr. Richard Horowitz) are willing to do it.

A hallmark of progress being made is healthy, impassioned debate. It’s time we have a talk.

This article was originally published on April 26, 2016 at Huffington Post.