Leaning About Lyme Disease
- Singer-songwriter Kris Kristofferson, known for writing the hit song “Me and Bobby McGee,” had been falsely diagnosed with Alzheimer’s. Instead, the country star was actually suffering from a tick-borne illness known as lyme disease.
- According to the Centers for Disease Control and Prevention, Lyme disease, which is caused by “caused by the bacterium Borrelia burgdorferi and rarely, Borrelia mayonii,” is the most common tick-borne illness in the United States.
- People get infected with Lyme disease when they’re bitten by black-legged ticks.
- When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don't hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor's perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn't work.
Kristofferson, an 87-year-old Texan known for writing the hit song “Me and Bobby McGee,” had been falsely diagnosed with Alzheimer’sa progressive disease described by the National Institute of Aging as “a brain disorder that slowly destroys memory and thinking skills, and, eventually, the ability to carry out the simplest tasks.”
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“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.”
According to the National Institute of Health, Fibromyalgia is an incurable “chronic (long-lasting) disorder that causes pain and tenderness throughout the body, as well as fatigue and trouble sleeping” and what causes this condition is unknown.
Meyers describe the painful spasms Kristofferson suffered across his back and legs as “horrible,” noting how he treating the discomfort with “acupuncture, heat and massage, then finally a spinal cortisone shot by a rheumatologist, and a low dose anti-depressant.”
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“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,” she continued. “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.”
Following the filming of the 2006 adventure drama, which featured Kristofferson in the role of Quebec Bill, Meyers explained how her husband had been diagnosed with “moderate to severe sleep apnea, warranting a bi-level CPAP machine, which he tried and refused to use.”
Kristofferson’s wife added, “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.”
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She explained how after his correct diagnosis, he was prescribed medicines called doxycycline and Alinia. He then began Hyperbaric Oxygen Therapy (HBOT) and Transcranial Magnetic Stimulation (TMS) of the frontal lobe. Then, when he stared working with a Lyme specialist in California, Kristofferson was prescribed antibiotic intramuscular injections.
Meanwhile, in another interview with Closer Weekly, a longtime friend of Kristofferson told the news outlet following his correct diagnosis, “Kris is as sharp as he's been in the past 20 years because of his treatments. His wife, Lisa, and his eight children see a different Kris now. It really is a modern-day medical miracle.”
What is Lyme Disease?
According to the Centers for Disease Control and Prevention, Lyme disease, which is caused by “caused by the bacterium Borrelia burgdorferi and rarely, Borrelia mayonii,” is the most common tick-borne illness in the United States.
People get infected with Lyme disease when they’re bitten by black-legged ticks.
“It is transmitted to humans through the bite of infected black-legged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migraines. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks,” the CDC explains.
“Laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics.”
The CDC recommends listening to the following Lyme disease prevention steps:
- Use insect repellent
- Remove ticks right away
- Apply pesticides
- Reduce tick habitat
Some of the early signs and symptoms (showing up between 3 and 30 days of a tick bite) of Lyme disease, according to the CDC are fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes, or erythema migrains (EM) rash.
Later signs and symptoms, which could occur within days of the bite or months later include:
- Severe headaches and stiffness in neck
- EM rashes on various areas of the body
- Loss of muscle tone or drooping on face (Facial palsy)
- Arthritis and severe joint pain
- Heart palpitations or an irregular heart beat
- Disease or shortness of breath
- Nerve pain
Leading Experts Urge Us to Be Proactive
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told us in a previous interview, “because finding a doctor who is up to the latest of information is important.”
RELATED: Second (& Third) Opinions Matter When Deciding Between Surgery or Radiation
As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options. Also, in some instances the specific course of treatment is not clear cut. That's even more reason why understanding the potential approaches to your disease is crucial.
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At the National Cancer Institute, there is a patient referral service that will "guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments," Rosenberg says.
Cancer Research Legend Urges Patients to Get Multiple Opinions
Furthermore, getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers. "So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility," Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.
RELATED: Mental Health & Cancer: A Third of Patients Aren't Getting the Help They Need
Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of cancer
- You have a rare type of cancer
- There are several ways to treat your cancer
- You feel like your doctor isn't listening to you, or isn't giving you good advice
- You have trouble understanding your doctor
- You don't like the treatment your doctor is recommending, or you're worried about its possible side effects
- Your insurance company wants you to get another medical opinion
- Your cancer isn't improving on your current treatment
Bottom line, being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to take control of your health.
How Common Are Misdiagnoses?
Kristofferson’s story reminds us of a shocking study about how frequently patients are misdiagnosed. According to the study, published in BMJ, an estimated 371,00 people in the U.S. die every year due to a misdiagnosis and around 424,000 people are permanently disabled. The study said an estimated 800,000 Americans in total suffer “serious harm” due to misdiagnosis every year.
The researchers for this particular study focused on "serious harm," but also noted that less detrimental misdiagnoses were likely occurring on an even grander scale. According to STAT, authors believe the number of diagnostic errors that happen in the U.S. each year could be between 50 and 100 million.
Despite these shocking numbers, most misdiagnoses do not have dire consequences.
Advocating for Yourself While Navigating the Medical World
David Newman-Toker, the lead author of the paper, told the outlet, “The risk level just walking through the door in the doctor's office that something horrible is going to happen to you because of a diagnostic error is actually quite low.”
Pushing For A Correct Diagnosis
When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don't hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor's perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn't work.
As a patient, if you don't feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
"The truth is you have to be in tune with your body, and you realize that you are not the statistic," he said.
Be Pushy, Be Your Own Advocate… Don't Settle
Dr. Murrell says not every patient will “fit into” the mold, so it's important to “educate yourself and be your own health care advocate.”
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is,” Dr. Murrell said. “And I think that that's totally fair. And me as a health professional that's what I do for all of my patients.”
"Always Get a Second Opinion" San Diego Resident Lynn Brooks' Survivor Story
Contributing: SurvivorNet Staff
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