Country music legend Kris Kristofferson was a multi-hyphenate talent long before that term was even coined. A four-time Grammy-winning singer/songwriter, Golden Globe movie actor, television actor, Rhodes scholar, Golden Gloves boxer, helicopter pilot, college football player — he has achieved more in his lifetime than an entire roomful of less-talented celebrities.

Somewhere around 2010, Kristofferson began suffering from memory lapses. The severity of them wavered – at times he might forget the lyrics to some of his own songs during a performance; at other times he might completely forget what he was doing from moment to moment. His friends couldn’t help but notice the decline in Kristofferson’s memory, and the family sought to find out what was wrong.

Doctors delivered the grim diagnosis of Alzheimer’s, the incurable and terminal brain disorder that inexorably drains a victim of their memory, personality, language, talent, and vibrancy. It is a tragic and devastating illness for a family to experience.

Kristofferson had the hardship of also having to deal with other, seemingly unrelated, afflictions such as extreme joint pain, involuntary muscle spasms, arrhythmia (for which he wore a pacemaker), and severe headaches. He took so much Advil for the headaches that he became anemic and needed iron supplements. His wife ultimately took her husband to an integrative care doctor who, upon examining the singer and seeing the uncontrollable twitching in Kristofferson’s forearms, declared, “He’s got Lyme disease.”

An immunoblot test by IGeneX confirmed the doctor’s diagnosis and the country legend stopped taking all of the medications that were prescribed for illnesses he didn’t actually have. He began treatment for Lyme disease.

In a short time, his symptoms started to improve. Kristofferson’s health turnaround was so dramatic that his friend, Nashville singer-songwriter Chris Gantry, was quoted in Closer Weekly magazine as saying, “It’s like Lazarus coming out of the grave and being born again.”

While Kristofferson’s health journey has been blessed with a happy turnaround, he and his family lived for three years in the dark shadow of an incorrect Alzheimer’s diagnosis. His story is a high-profile reminder that misdiagnosed illnesses, left uncorrected, can have disastrous — even damaging — consequences for patients.

This is especially true for tick-borne diseases, because many of their symptoms mimic other illnesses whose medications, when prescribed in error, can actually harm the patient rather than help.

Take depression, anxiety, and feelings of hopelessness, for instance. Those are some of the symptoms that Lyme disease can present. Physicians, either by training or practice, tend to follow Occam’s Razor, a principle that is often stated as “the simplest explanation is usually right.” A headache will more likely be the result of eyestrain than a brain tumor. Stomach pain will more likely be the result of food poisoning than colon cancer. So if they’re presented with symptoms that look like a form of mental illness, they’ll conclude it probably is, and they’ll treat it accordingly.

Suspecting a psychological or neurological source for these symptoms, the physician will likely prescribe psychotropic medications (i.e., drugs that affect behavior, mood, perception, or thoughts by changing the balance of chemicals in the brain).

When properly prescribed to patients actually suffering from these conditions, the drugs can dramatically improve their quality of life — the ability of Xanax to blunt an impending panic attack, or Adderall to calm the torrent of ping-ponging thoughts demanding equal attention from ADD, or Fluoxetine to dull the impulse for violent aggression. They can allow function to emerge from dysfunction.

But if a patient who is mis-prescribed one of these medications takes them on a regular basis, the medications themselves can alter brain chemistry in an undesirable way, often creating mental illness or neurological disorders where there were none before (e.g., paranoia, muscle twitching, depression), or by amplifying mild symptoms into extreme ones.

Unfortunately, if medications don’t seem to be working, even smart doctors won’t always recognize that their original diagnosis was incorrect and test the patient for something completely different. Instead, they may increase the dosage, or switch to another medication to treat the same class of illness — or worse, prescribe additional medications to treat new symptoms brought on by the mis-prescribed medications — leaving the patient feeling frustrated, angry, and without relief.

This was the case for our son Alec (read about his illness journey here). His tick-borne illness produced symptoms that fooled his doctors, and they prescribed treatment and medications for various forms of mental illness. The trouble was, none of the meds helped for long, because his illness wasn’t in his brain — it was in his blood.

The tragic irony of this was that Alec could feel that something else was wrong with him and it was being missed. But the healthcare system often has a momentum of its own, and like a supertanker that requires miles to turn itself around, the system can be slow to recognize when it’s off-course, much less correct itself.

A second mindset among some physicians can best be described as “when the only tool you have is a hammer, everything looks like a nail.” A psychiatrist may see a mental illness lurking behind every severe headache. A gastroenterologist may suspect diverticulitis when presented with abdominal cramping. A cardiologist may think ahead to a heart bypass when they encounter a patient who is weak and wheezing.

It’s human nature to try to fit new data into the patterns that are already familiar to us. It’s how we make sense of the world around us, and give it order. But such an approach can prevent us from discovering inspired solutions to vexing problems. When it comes to healthcare, continuing on with a treatment plan that has shown no efficacy in improving patient wellness should set off some alarm bells to push the reset button and reevaluate the symptoms and possible causes from a different perspective.

If you’re the patient, and you hear these alarm bells ringing in your head, you’ll need to assert your right to have a voice in your treatment plan. The same goes if you’re not the patient, but are close to them.

The goal of all medical treatment is “best outcome.” This means even if a cure isn’t possible, the treatment leaves you better off than you’d be without it, and with a prognosis that includes a measure of relief from the affliction — or in terminal illnesses, comfort.

But how can you assure a best outcome if you feel you’ve been misdiagnosed?

If it’s evident to you that your physician’s current treatment plan isn’t providing any relief or benefit to you, and you believe you might have been misdiagnosed, here are some steps you can take to advocate for your health:

Disclaimer: Don’t take any of the following as medical advice. These are action items you can take on your own behalf in managing your healthcare. Don’t make any changes to your treatment plan without consulting a medical professional first.

1. Seek a Second Opinion (or more): Arrange to see another doctor for a second opinion. As Kris Kristofferson’s family did, it might be worthwhile to seek a doctor in a different area of care who can provide a truly different perspective or propose alternative options. Time is of the essence, but it can also be tricky. Since tick-borne illnesses may take some time to develop antibodies that show up in blood tests, you might have to get a second opinion some weeks down the timeline of your current treatment plan.

2. Communicate Your Concerns: Discuss your concerns openly with your current physician. Ask questions to understand why they have proposed a specific diagnosis or treatment. Ask the physician if there could be harmful side effects taking the prescribed medications as a result of a misdiagnosis. Yes, it’s an uncomfortable question. But it’s better to ask uncomfortable questions than to needlessly suffer uncomfortable side effects.

3. Research Your Condition: Do some independent research on your condition and the suggested treatment. This can help you formulate specific questions and bring potential options to discuss with your physician. Don’t just wave your Google search results in your physician’s face to point out their mistake — that just puts professionals on the defensive and less open to alternatives. Instead, explain that you believe the underlying cause of your illness has not been conclusively determined because your current treatment plan has had weak or no beneficial results, and you’d like to eliminate other sources of illness before continuing with the current plan. Make your doctor understand that you intend to be an active participant in your healthcare, and you want both of you aligned toward the goal of a correct diagnosis and treatment plan. See the article below about a new tool for DIY research.

4. Consider Alternative Treatments: If you feel your physician is dismissing your concerns, or being condescending towards you for broaching the subject, find another doctor who is more open-minded to exploring alternative causes for your illness.

5. Request Further Tests: If you feel that the tests you’ve taken so far have been inconclusive or off-target, and that other necessary tests haven’t been performed, request them. In the case of tick-borne illness symptoms, this might include an IGeneX immunoblot test (there are several tests for tick-borne pathogens, and some are more accurate than others). Remember that it can be just as helpful to rule out a cause as to pinpoint one. Having a comprehensive view of your health situation can only help lead you to the right diagnosis.

6. Keep Personal Health Records: Keep detailed personal health records, including test results, symptoms, timelines, and other relevant information, to give healthcare providers a complete picture of your situation.

7. Patient Advocacy: Consider involving a patient advocate, a person who helps navigate the healthcare system, and can assist in communication between you and your healthcare provider. But stay engaged, and don’t let the advocate drive your care … they are speaking on your behalf, not making your decisions for you.

8. Seek Guidance from Trusted Individuals: Discuss your concerns with trusted friends, family, or others who may have experience or knowledge about your condition. Sometimes, a lay perspective can provide valuable insights that you or your doctor haven’t thought of. But tread carefully here — don’t substitute their advice for professional medical care.

9. Therapy and Counseling: If the disagreement is causing you stress or anxiety, consider therapy or counseling to help manage your feelings during this time. Stress and anxiety can exacerbate certain symptoms and result in additional misdiagnosis.

10. Ethical and Legal Advice: In extreme cases, if you believe your concerns are not being addressed appropriately, you may seek ethical or legal advice to understand your rights as a patient.

Remember, the ultimate goal is to get an accurate diagnosis and appropriate treatment. Toward that goal, you are the most important advocate for your own health, and it's vital to take an active role in your healthcare journey. You could be one correct diagnosis away from relief.