A Slow Slipping AwayKris Kristofferson’s Long Undiagnosed Battle with Lyme Disease.
By Dana Parish
K ris Kristofferson, still crooning and gorgeous at 80, is a Country Music Hall of Famer who ranks among the most versatile of American talents. He’s been a Golden Gloves boxer, a Rhodes scholar, a college football player, an acclaimed actor, a military officer, a helicopter pilot, a Grammy-winner, a self-described screw-up and an icon.
Like many, I was stunned and elated to read in Rolling Stone that Kris’s long-diagnosed Alzheimer’s turned out to be Lyme disease, and that with proper treatment, he is back on the road, doing all the things he loves, and being his blazing, irreverent self again.
Here, Kris’s fierce, intuitive wife, Lisa, tells us how she shepherded him through a haze of missed opportunities and misdiagnoses and got him back.
QWhen and how did Kris’s Lyme symptoms begin?
AAbout 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. We were in LA at the time, in Malibu, and I just don’t think doctors were looking for it or aware of it there then. But now we know it’s everywhere. There are signs on my local playground that say beware of ticks.
QCan you describe his fibromyalgia?
AHe had massive, painful spasms all over his back and legs— it was so horrible— his nerve endings were causing golf ball-sized, painful contractions that we battled with acupuncture, heat and massage, then finally a spinal cortisone shot by a rheumatologist, and a low dose anti-depressant. This eight-month period he was in so much pain he could not work. Two years earlier he had spent six weeks in the woods in rural, remote Vermont making a film called Disappearances. He was on the forest floor for much of the shoot, being dragged in a makeshift sling and carried by his son in the film, because he had been “shot” in the leg.
QSo, after so many years, how did he finally get diagnosed with Lyme?
ADuring the aftermath of that film, Kris was diagnosed with moderate to severe sleep apnea, warranting a bi-level CPAP machine, which he tried and refused to use. He had painful knees and annual knee shots, a pacemaker for arrhythmias- which we now know could be from Lyme- so much Advil for headaches that he got anemic. After a year of iron supplements and seeing a hematologist, he just wasn’t healthy-looking so I took him to an integrative doctor, Mark Filidei, at Whitaker Wellness Institute. Upon examining Kris and watching the muscles in his forearms constantly twitching, he announced, “He’s got Lyme disease,” and ordered a blood test. The first test from LabCorp came back suspicious, the second test by IGeneX was positive. This was in February 2016.
QExcellent that the doctor knew to go to a reliable lab for Lyme like IGeneX. Most physicians don’t know that the tests are only about 50% accurate at the major labs and that Lyme should be clinically diagnosed based on symptoms. What did you do when you found out his diagnosis of Lyme?
AWell, we got the news when we were on tour in the UK and Ireland, so immediately upon landing in the US, I went to a local pharmacy and picked up Kris’s prescriptions for doxycycline and Alinia. Soon after, we also started Hyperbaric Oxygen Therapy (HBOT) and Transcranial Magnetic Stimulation (TMS) of the frontal lobe.
QAt this point, did anyone refer you to a Lyme-Literate doctor?
AYes, luckily, Kris’s cardiologist did her residency in New Jersey so she understood the cardiac involvement in Lyme and said go to a Lyme specialist. We began working with Dr. Steve Harris in California, who added antibiotic intramuscular injections to Kris’s protocol and is continuing to treat Kris.