RIP Kris Kristofferson, Diagnostic Quality Warrior

Kristofferson's medical history should be taught to residents and medical students

Photo courtesy of Bryan Ledgard - https://www.flickr.com/photos/ledgard/4854016901/, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=58249494

The family of Kris Kristofferson announced he passed away September 29, 2024. The well-deserved accolades for his career as a songwriter, singer, actor and activist will fill our news outlets and social media pages. I was, and will remain, a fan.

But what I will always admire Kristofferson for is sharing his important story of how he was multiply misdiagnosed and harmed by it.

Over a thirty-year period, Kristofferson was treated for fibromyalgia, blinding headaches, “golf ball-sized, painful” muscle spasms, sleep apnea, knee pains, arrhythmias, and anemia due to too much Tylenol. Then he experienced memory loss. He announced he was retiring because he had been diagnosed with Alzheimer’s Disease in 2013, a neurodegenerative disease that cruelly robs one of their memory and personality. This was on top of all the other medical issues. His medical team were treating each of his symptoms individually, not recognizing they were all indicative of something else, a single disease that caused all his symptoms.

Until one day early in 2016, integrative doctor Mark Filidei observed the muscle spasms in his arm. He stated, “You have Lyme Disease,” and ordered blood tests. The first result was “indicative” and the second test from iGeneX –– known for their highly sensitive tick-borne disease tests –– was “positive.” It turned out that nearly every one of Kristofferson’s medical issues was caused by the bite of an infected tick.

In a 2016 interview, Kristofferson’s wife Lisa was quoted as saying, “About 12 years ago he was diagnosed with fibromyalgia, which looking back, should have been the first indication that a test for Lyme was warranted. But we suspect he’s been infected with Lyme anywhere from fourteen to thirty years because he used to have these chronic muscle spasms, which is a common symptom.”

Knowing what I know about late stage and central nervous system (CNS) Lyme Disease I’m surprised any of his tests were positive. Most tests are dependent on identifying the immune response, not the actual bacteria. But the spirochetal bacterial infections that cause tick-borne diseases like Lyme have a nice trick to fool the body’s immune system; they change their protein expression frequently, eventually overwhelming your body’s innate protection against infections. In a 2023 medical study, they deemed the process “enigmatic”. After a tick bite, spirochetes multiply at a rate of six to seventeen in the first two to three days, burrowing into the bloodstream, organs, and eventually cross the blood brain barrier to affect your spine and brain.

Lyme and other tick-borne diseases are often misdiagnosed as Encephalitis, Alzheimer’s, Multiple Sclerosis, Amyotrophic Lateral Sclerosis (ALS, aka Lou Gehrig Disease) and other neurodegenerative conditions. Inexperienced clinicians unfamiliar with how the immune system responds to tick-borne infections end up treating the ever-multiplying symptoms and not the patient. Then they wonder why the treatments don’t work. Based on almost 20 thousand patient reported experiences (PREs) to MyLymeData, almost 80 percent of patients experienced delayed diagnosis of Lyme and tick-borne illnesses because of insensitive testing methods, ignored positive test results, or their symptoms were flat-out dismissed. With the number of Lyme Disease infections in the US conservatively estimated at 300 thousand each year, and growing, an 80 percent diagnostic delay rate is unacceptable. Lyme is not a Rare Disease.

Spirochetes behave the same way for untreated patients with Syphilis and Relapsing Fever. With climate change causing an explosion of the infected tick population in the US, perhaps the study of bacterial behavior and diagnosis of spirochetal diseases in humans should be featured for all would-be clinicians in medical school and residency.

Treating late stage Lyme Disease isn’t easy or pleasant but he stuck with it. Kristofferson’s treatment regimen included doxycycline, Alinia, Hyperbaric Oxygen Therapy (HBOT), 

Transcranial Magnetic Stimulation (TMS) of the frontal lobe and antibiotic intramuscular injections. After diagnosis and initial treatment, Kristofferson performed on stage over 250 times between 2016 and 2023.

Rest in Peace, Kris Kristofferson.

© Helene M. Epstein 2024