If you grew up, as I did, a child of the 1970s in the US (I graduated from high school in 1980), you probably couldn’t escape the influence of Kris Kristofferson. He was big, and he was at his biggest during the 1970s, pumping out country music and mainstream hits, appearing in movies, and generally rocking an awesome beard. Anyway, the 1980s came, and Kris Kristofferson’s career went. Well, it didn’t exactly disappear. Kristofferson continued to work and appear in movies, and his records still sold fairly well. However, he was never again as big as he was in the 1970s.
It turns out that Kristofferson’s 80 now and not in the greatest health. It also turns out that he’s also totally in the thrall of chronic Lyme disease quackery, becoming the latest celebrity I’ve learned of who has fallen for quackery. It is a sad tale indeed, as it started out with Kristofferson being diagnosed with Alzheimer’s disease because he had developed memory issues. That turned out to have been a misdiagnosis, but the diagnosis that replaced it was scarcely better because it is a fake disease much beloved by naturopaths and “integrative medicine” practitioner. I learned about his story the other day from a blog post in The Huffington Post (which, not surprisingly, was quite credulous about the chronic Lyme disease quackery being used to treat Kristofferson), which referenced a Rolling Stone article (which was scarcely better).
The Rolling Stone article describes how he was diagnosed. After describing his problems with memory loss, which doctors suspected to be due to either head trauma he suffered in his youth playing football and rugby or boxing or due to early dementia, possibly Alzheimer’s disease.
Then, earlier this year, a doctor decided to test Kristofferson for Lyme disease. The test came back positive. His wife believes he picked it up from a tick as he crawled around the forest floor in Vermont for six weeks while filming the movie Disappearances.
“He was taking all these medications for things he doesn’t have, and they all have side effects,” she says. She is wearing one of her husband’s tour merchandise shirts. After he gave up his Alzheimer’s and depression pills and went through three weeks of Lyme-disease treatment, Lisa was shocked. “All of a sudden he was back,” she says. There are still bad days, but “some days he’s perfectly normal and it’s easy to forget that he is even battling anything.”
The Rolling Stone article is a profile that’s more about Kristofferson’s more recent career, kind of a “portrait of the artist as an old man,” than about his health problems and treatment for chronic Lyme disease, which make up only a relatively small part of the article. It’s the HuffPo blog post that features a long interview with his wife Lisa Kristofferson, who appears to be the origin and ongoing source of much of the woo and is described as “fierce” and “intuitive.” She starts out describing how her husband was diagnosed with fibromyalgia 12 years ago, which she now blames on Lyme disease and suspects “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,” which is odd, given that she blames the movie Disappearances, released in 2006, for her husband’s Lyme because he spent a lot of time being dragged in a sling across the forest floor because his character had been shot in the leg. She thinks he was bitten by a tick then.
In any case, she elaborates:
During 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.
There are so many red flags here that it’s hard to know where to start. The very first (and biggest) red flag is that Kristofferson was diagnosed at the Whitaker Wellness Institute. Julian Whitaker, as regular readers might remember, is an all purpose “integrative medicine” doctors very much enamored of a whole lot of quackery. For instance, he’s rabidly antivaccine and has used some incredibly idiotic arguments (such as that all children will be born autistic by the 2030s, thanks to vaccines). He’s also promoted the quackery of Stanislaw Burzynski, appearing in one of Eric Merola’s propaganda movie about him.
Before I move on, let’s talk about chronic Lyme disease for a moment. It is, as I and others like to call it, a fake disease. This has to be differentiated from real Lyme disease. Yes, Lyme disease is real. There does even appear to be a post-Lyme disease syndrome, which is seen in patients who had Lyme disease and now have chronic symptoms (such as fatigue, various pains, and difficulty concentrating) after having been treated. Indeed, this is even referred to as category 4 Lyme disease. What causes this syndrome is a mystery, and there is no doubt that there are patients out there with debilitating symptoms after being treated for Lyme disease. However, current scientific and clinical evidence does not support the idea that these symptoms are due to a chronic ongoing infection or that prolonged courses of antibiotics, the preferred treatment for so-called chronic Lyme disease, do any good. Steve Novella has written a good treatment of the issues involved (here and here), as have Mark Crislip and Peter Lipson.
An excellent article in Environmental Health Perspectives concludes:
Lyme disease is a relatively well-described infectious disease with multisystem manifestations. Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, “chronic Lyme disease,” has become established. Chronic Lyme disease is the most recent in a continuing series of “medically unexplained symptoms” syndromes. These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings. We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia.
The article is useful because it describes how the chronic Lyme disease (CLD) diagnosis evolved and why patients with unexplained symptoms embraced it, as patients with unexplained symptoms have embraced Morgellons disease. Unfortunately, the result of the rise of the CLD industry has been quackery, as PJ Baker, the executive director of the American Lyme Disease Foundation, wrote in Federation of American Societies for Experimental Biology (FASEB) Journal:
There is no better example of a relentless attack on evidence-based biomedical research and the integrity of outstanding scientists than that associated with the treatment of a poorly defined condition called “chronic Lyme disease.” Here, a scientifically naive general population, the lay press, and legislators, who in most instances are unable to evaluate and judge scientific evidence properly, have been misled by patient advocate groups to believe that extended antibiotic therapy is the best and only solution to this condition. This has resulted in the unprecedented intrusion of government and the legal systems into the practice of medicine and scientific research. Because there is no clinical evidence that this condition is due to a persistent infection, advocating extended antibiotic therapy is not justified and has been shown to be harmful and of no benefit.
Basically, a whole alternative medicine/”integrative medicine” industry has sprung up to use bogus tests to “diagnose” chronic Lyme disease and and bogus therapies to treat it. They’ve become so powerful that some state legislatures now kowtow to them, as Connecticut’s did recently when it protected quacks’ ability to treat CLD patients with long term antibiotics. Not surprisingly, the Whitaker Wellness Institute has a full page of glowing testimonials for its treatment of CLD with intravenous vitamin C, glutathione, hyperbaric oxygen, low dose naltrexone, and various other alternative medicine treatments.
Naturally, it didn’t take long after Kristofferson was “diagnosed” with CLD for the quackery to flow. For example, Lisa Kristofferson describes what she and her husband did after they got the “diagnosis”:
Well, 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.
At this point, did anyone refer you to a Lyme-Literate doctor?
Yes, 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.
Of course, there is no good evidence that HBOT treats Lyme disease, whether CLD or acute, nor is there a good physiologic rationale for it. As for TMS of the frontal lobe? What’s that about? TMS is a treatment that’s not used for Lyme disease, but rather depression. As for intramuscular injections of antibiotics, in the absence of an actual infection such treatments will do nothing but devastate Kristofferson’s natural bacterial flora, particularly in his gut, and breed resistant bacteria.
As for the diagnosis:
But before this, wasn’t Kris misdiagnosed with Alzheimer’s?
Yes, for the past three years, he was treated for Alzheimer’s by two different neurologists. He was on two drugs for it, Namenda and Exelon patches. But finally, a spinal tap and functional MRI ruled out Alzheimer’s, so he quit those meds and the antidepressant for fibromyalgia. They also tested him for Lyme Disease in the spinal fluid and it was negative but the doctor explained to me that Lyme does not live in fluid, it lives in tissue. It bores into tissue so you would really have to do a biopsy of the brain to find it.
This is, of course, nonsense. Lyme disease is routinely diagnosed using serum with a combination of an enzyme-linked immunoabsorbant assay (ELISA) followed by a confirmatory Western blot. The reason for the whole industry of dubious tests for CLD and claims that it’s not in the blood is because there is no Lyme disease in CLD. It’s why labs specializing in CLD diagnosis use PCR to diagnose the disease when PCR is not a reliable means of diagnosing Lyme disease and is not FDA-approved. It is a fake diagnosis, and Kristofferson’s being victimized by quacks promoting it.
Why, you might ask, is Kristofferson seemingly better? I rather suspect that it’s because he’s off all those Alzheimer’s treatments. It might also be because he’s off his antidepressants. Maybe he neer had depression requiring treatment. Whatever the reason, we can be quite sure that HBOT, intravenous vitamin C, TMS, intramuscular injections of antibiotics, and whatever other quackery Kristofferson is undergoing are not responsible.
Of course, the problem with celebrities falling for quackery is this:
With over five million Americans living with an Alzheimer’s diagnosis, I have to wonder how many actually have Lyme and not Alzheimer’s, and what it will take for doctors to look for Lyme before giving someone a sentence like that. Malpractice suits? Complaints to medical boards?
Sadly, the average doctor doesn’t even check or test for Lyme, it’s not the norm. But they should! And now, with treating it, Kris is doing so much better than he was three years ago. I couldn’t even get certain doctors to look at his blood test and agree it was positive. But once he got his clinical assessment from his Lyme doctor, they all seemed to finally agree. And then we got him off all the Alzheimer’s meds and it was like, “I’ll be damned!”
That’s really unusual and wonderful. Certainly, that was the opposite of my experience.
Yeah, what’s that about? Again, I just don’t get it. People are coming up to us all the time now with their Lyme stories and it’s just so tragic! Doctors are not looking for this and then people end up down the road so much sicker. It’s heartbreaking. I am fortunate my doctors are willing to admit when they are unsure about something and have Kris’s best interest at heart.
In other words, Lisa and Kris Kristofferson are now advertising CLD as a disease and CLD quackery. Indeed, this HuffPo piece reads, more than anything else, like a late night infomercial for CLD quackery. I’m glad that Kris Kristofferson is doing well at age 80 and is doing better than he was a few years ago. I’m not happy that his story is being used to sell the fake diagnosis of CLD and the even faker “therapies” to treat it.