Here are some well known people who have chronic Lyme disease: singer-songwriter-fashion designer Kelly Osbourne, TV star Ally Hilfiger (Tommy’s daughter), singer-songwriter Kris Kristofferson, punk singer Kathleen Hanna, Marisol Thomas (wife of Rob Thomas), Real Housewife Yolanda Hadid and supermodel Bella Hadid, as well as Alec Baldwin, Amy Tan, and Avril Lavigne. Each of the links above goes to an article in which the celebrity describes his or her struggles with chronic Lyme. George W. Bush was bitten by a tick, saw the bulls-eye rash (not everyone gets it), and received prompt treatment, lucky for him.
But the rest went undiagnosed, often for years, suffering unexplained chronic symptoms like fatigue, joint pain, muscle aches, brain fog, and fevers. Most were told they were “just depressed” and given antidepressants.
I recently wrote a Health Tip about Ally Hilfiger. Kris Kristofferson’s situation was equally dire. Both he and his family sensed his mental decline, which made Alzheimer’s the most likely culprit. He was actually planning a farewell tour. Eventually someone realized his brain had been infected with Lyme bacteria and (thankfully) with intensive treatment his memory is returning.
Kelly Osbourne’s story is typical of chronic Lyme. She barely remembered the tick bite in 2004, but in the years that followed she suffered widespread muscle pain, headaches, stomachaches, and, finally in 2013, had a seizure during her TV show Fashion Police. In her new book There is No F**king Secret: Letters From a Badass Bitch, she opens up about her years and years of physical and emotional misery, her doctors missing the diagnosis, and finally her correct diagnosis.
In addition to all this pain and suffering, researchers looked at health insurance claims for 47 million people and found that the costs of those treated for Lyme could come more than $1 billion a year in the US alone.
Lyme-literate physicians lacking
Why did these celebrities, all of whom had the best care their money could buy, suffer so needlessly and for so long? They, along with probably tens of thousands of others who have less access to healthcare, were all victims of a totally needless three-issue controversy.
1—Possibly most exasperating of all, a majority physicians simply accept an outdated CDC statement that there’s no such entity as chronic Lyme, caused by untreated or inadequately treated Lyme bacteria (Borrelia burgdorferi).
2–Doctors miss the Lyme diagnosis either because they don’t believe the disease exists or they misinterpret the test results. Undeniably, chronic Lyme is difficult to diagnose unless the physician (or often the patient) puts the pieces together and the right tests are requested by the patient or ordered by the doc.
As is the case with many chronic infections, diagnosis depends not on seeing bacteria under a microscope, but on finding antibodies your immune system has created against B. burgdorferi. But B. burgdorferi is very clever, outsmarting your immune system in such a way that it can survive under the radar without being detected. This turns chronic Lyme into a clinical rather than a laboratory diagnosis. A clinical diagnosis is one in which the likelihood of Lyme is so strong (detailed symptom history plus living in a Lyme region) that the doctor can proceed with treatment without fully meeting CDC diagnostic criteria. But most doctors don’t have enough faith in their clinical diagnostic skills—they’re not TV’s Dr. House, who rarely relies on lab tests. Most doctors want to see a positive lab test result before they’ll write a prescription for Lyme disease.
3–To make matters worse, the current standards for what makes a test result positive are simply wrong. The results of a Lyme test called the Western blot are reported in a series stripy bands of immune system reactions. The CDC determined that you needed five of those bands to be positive in order to be diagnosed. Ally Hilfiger had four, which doctors knew about for years, all the while withholding treatment.
Underfunded Lyme research and a burgeoning tick population
Because of these totally unnecessary controversies, Lyme research is seriously underfunded. And the failure to subsidize research and education is coming at a bad time. The tick population is skyrocketing. We now know it’s not just deer that carry the tick, but common house mice as well. The tick increase is attributed to climate change, which President Trump has called a Chinese hoax.
In 2013, the CDC acknowledged that its initial estimate of the number of new Lyme cases was wrong by a factor of ten. Sorry, it’s not 30,000 new cases every year, but more than 300,000.
These days, and not without good reason, many Americans prefer to get their advice from celebrities instead of Washington “experts.” Several celebrity Lyme sufferers are now supporting the Global Lyme Alliance (GLA), a not-for-profit whose goal is to alert everyone about Lyme disease. The GLA funds both research and education.
Now for my pitch
From 6 to 9 pm on August 24 the GLA is presenting a really terrific fundraiser called Sublyme Soiree at the event space Chicago Illuminating Company (2110 S. Wabash). This is a gourmet foodie fundraiser featuring chefs from a dozen leading Chicago restaurants including Lula Café, GT Fish & Oyster, Nayone, and BellyQ (with gluten-free, dairy-free, and vegetarian options).
WholeHealth Chicago has signed on as an event sponsor and many of our staff members involved in Lyme treatment will be on hand to talk about what they do, with some offering mini treatments. Casey Kelley, MD, director of our Lyme program, will be there, having located a babysitter for her new arrival, eight-week-old Charlotte Kelley.
Think about this for a moment: We’ve got a worldwide infectious disease epidemic in our midst and a federal government reluctant to do much of anything except try to take away your health insurance.
So listen up. As of today, 50% of the Sublyme Soiree tickets have been sold and the organizers expect a complete sell-out. To order tickets, click here. If you’ll be out of town that day or just want to make a donation, use the same form.
David Edelberg, MD