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“I Want a Mono Test and a Lyme Disease Test Please”

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In a recent Medium article “Medical Knowledge is Not Enough Without Medical Narratives,” New York City writer Shoshana Akabas recounted her first-person experience with a mysterious illness that was finally diagnosed as Central Nervous System Lyme Disease. In the article, she described the isolation of her illness and the solidarity she found in illness memoirs such as Sick, A Memoir by Porchista Khakpour.

Roughly, Ms. Akabas’s diagnostic story goes something like this:

She told multiple doctors about an array of symptoms, including cognitive dysfunction (so severe at the age of 25 that in one year she went from reading 250 books to 3 books), chronic pain, and memory loss. Her physicians seemed to consistently push her towards a diagnosis of depression. Finally, she describes,

One night, I was actually crying to my father out of frustration, resigned to finally make an appointment with a psychiatrist, though I knew in my gut that was the wrong move. “Has anyone done a blood test yet?” he asked. “Like for mono or Lyme?” He trailed off, but the next morning, I called a new general practitioner and asked her to do a blood test for everything she could think of before my appointment. She agreed, and that’s how I was diagnosed. Because my dad, a lawyer, asked if anyone had done a blood test.

It’s a story all doctors hear more often than we want, with the common denominator of “no one is listening to me.”

There are several teaching points from her article. We must remember that people with cognitive dysfunction and memory changes may have difficulty describing their symptoms, that a diagnosis of depression — which she may or may not have had — may be a concurrent diagnosis but not the key diagnosis, and that Lyme Disease will be next to impossible to diagnose if it isn’t even in our differential. Additionally, I would like to highlight another aspect of her journey — her request for “testing for everything” prior to her first appointment.

My experience — 110,000 patient visits strong — is mostly in Urgent Care, so I haven’t done a lot of pre-testing prior to patient visits. However, I do run across patients requesting very specific tests or, even more challenging, very broad panels of tests.

Examples of requests I’ve received include such things as a CXR to “prove” they don’t have lung cancer, a quantitative HCG just in case the urine pregnancy test is wrong, an MRI for low back pain, a strep test for a cough, or a sinus CT for a cold. Usually these requests come from a place of frustration, and usually a family member is involved.

Early in my career, these requests frustrated me, but eventually, I came to see these requests as an opportunity, and I came up with my own little algorithm for specific patient test requests that goes something like this:

  1. ALWAYS take the request seriously. Do not give a knee-jerk reaction, no matter how odd the test seems. The patient may know something you don’t. There may be something in their history you haven’t figured out yet, and God forbid you play hardball and refuse a CXR and find out three months later that the patient did have lung cancer.

  2. Find out the WHY of the request. For example, maybe they want the EKG to “check their heart” because their father just died of a heart attack. Understanding their why, and perhaps then even getting the EKG, will give you a much better chance of working on their hypertension, the thing they really need.

  3. DON’T HURT THE PATIENT. Let’s take the example of ordering an MRI for low back pain without clear indications (such as leg weakness or progressive radiculopathy). Now, apart from the financial hurt to the patient, there is the real chance of a false positive MRI result which will result in a referral to a spine surgeon. Work-ups can take on a momentum of their own, and it doesn’t take much to fall down a rabbit hole with a surgery or invasive procedure at the bottom.

  4. When in doubt, GET ADVICE. If the patient above had requested it, would I have unilaterally ordered a Lyme Test in an Urgent Care setting with the chronic symptoms mentioned above, particularly in the Pacific Northwest? Probably not. However, if a 25-year-old told me she cognitively declined over 1 year from reading from 250 books to 3 books I absolutely would have picked up the phone, reviewed her case with one of my neurologist colleagues, and together, we three (patient, neurologist, and myself) would have come up with the most efficient diagnostic strategy, which could have included a next-day appointment, imaging, and/or blood panels, likely including a Lyme test.

  5. DON’T COMMIT FRAUD. this seems obvious, but sometimes it’s not. Even in the simple case of a Quant HCG to “confirm” a pregnancy, if it wasn’t medically indicated, I would not bill the insurance, and I would document my reasoning accordingly (i.e. “emotional reassurance,” which isn’t a diagnostic code).

Ms. Akabas’s article is well worth a read. We physicians should make the occasional humble pie part of our regular diet.

Addendum: If you don’t run across Lyme Disease workup frequently, the CDC Lyme Disease web section is excellent, and the Lyme Disease Distribution Map is an excellent discussion resource when discussing tick bites with patients.

As Reported by the Center for Disease Control

Matthew Rehrl, MD has served in a C-Suite advisory role on social media within healthcare for over a decade. His current focus is the ethics of AI in healthcare. He reports no conflict of interest. Dr. Rehrl is a 2018–19 Doximity Author.

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