Dr. Daniel Cameron: Inside Lyme Podcast

Lyme Podcast: 17-year-old young man dies from Lyme carditis

Lyme Disease Podcast: 17-year-old young man dies from Lyme carditis

Welcome to an Inside Lyme case study. I find that the best way to get to know Lyme disease is through reviewing actual cases. In this case study, I will be discussing a 17-year-old young man who died of Lyme carditis. This case series will be discussed on my Facebook and made available on podcast and YouTube.

17-year-old young man who died of Lyme carditis – an Inside Lyme case study.

This case was discussed in the journal Cardiovascular Pathologist written by Yoon and colleagues in 2015. The background for this case was published in the Poughkeepsie Journal.

He was a high school honor roll student who aspired to be an environmental engineer and loved the outdoors. He had just returned home from a two-week stay at a camp in Rhode Island, a state that is endemic for Lyme disease when he fell ill. He initially was ill for 3 weeks with a viral syndrome with a sore throat, cough, and occasional fever.

His doctor initially saw him for “nonspecific symptoms of upper respiratory tract infection, fever, malaise, and body aches.” writes Yoon. His tests were negative for strep, Lyme disease, and anaplasmosis. He subsequently developed diarrhea, lightheadedness, and photophobia. “However, 12 days after his visits, he was found lying unresponsive on his lawn.” writes Yoon. Within hours he passed away,

While Lyme carditis may be rare, this young man’s tragic death illustrates the potential dangers of relying on serology tests to diagnose and treat Lyme disease. Click To Tweet

The autopsy showed evidence of Lyme disease. The autopsy showed an enlarged heart. The spirochetes that cause Lyme disease were found in the young man’s fresh liver and myocardial tissue. There were also evidence of these spirochetes in the heart, lung, and brain tissues using immunohistochemistry staining and polymerase chain reaction (PCR) tests.

The ELISA and Western blot IgM tests that had been negative while the young man was alive were now positive for Lyme disease. The cause of death was fatal Lyme carditis.

The authors highlighted the dangers of relying on laboratory tests. The authors write, “While Lyme carditis may be rare, this young man’s tragic death illustrates the potential dangers of relying on serology tests to diagnose and treat Lyme disease. It also underscores the ongoing confusion among clinicians over the accuracy and reliability of such tests, specifically the ELISA and Western blot.”

What can we learn from these cases?

  1. Lyme carditis can be fatal.
  2. Lyme carditis can occur in individuals with a negative test.

What questions does this case raise?

  1. Would the treatment have been effective if the young man was treated clinically?

He had the typical symptoms associated with Lyme – fatigue, headaches, body aches, GI disruptions, fevers, light sensitivity – and he had visited a Lyme endemic region with a high probability for exposure to ticks. Furthermore, he lived in Dutchess County, New York, an area that’s endemic for Lyme disease with an estimated 50% of deer ticks infected with the Lyme organism.

Treating Tick-Borne Disease In My Practice

In my practice, each individual requires a careful assessment. That is why I order tests a broad range of tests including blood counts, liver and kidney function, thyroid disease, lupus, and rheumatoid arthritis in addition to tests for tick borne infections. I also arrange consultations such as neurologists, rheumatologists, and ophthalmologists.

I treat adolescents and adults using clinical judgment if tests are negative.

We need more doctors with skills diagnosing and treating Lyme disease if the tests are negative. We also need to give doctors the freedom to treat these difficult cases without undue interference by colleagues, insurance companies, medical societies, and medical boards.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Family tells story of teen’s death to raise awareness about tick-borne virus. From the Poughkeepsie Journalat https://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/27/lyme-joseph-elone/6957983/.  Last reviewed 1/11/20.
  2. Yoon EC, Vail E, Kleinman G, Lento PA, Li S, Wang G, Limberger R, Fallon JT. Lyme disease: a case report of a 17-year-old male with fatal Lyme carditis. Cardiovasc Pathol. 2015 Sep-Oct;24(5):317-21.
  3. Molins CR, Ashton LV, Wormser GP, Hess AM, Delorey MJ, Mahapatra S, Schriefer ME, Belisle JT. Development of a Metabolic Biosignature for Detection of Early Lyme Disease. Clin Infect Dis. 2015 Mar 11.
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6 Replies to "Lyme Podcast: 17-year-old young man dies from Lyme carditis"

  • Diane Young
    02/23/2020 (5:24 pm)
    Reply

    I believe I am suffering from this now. I’ve had problems with my heart on and off for like 15 years. I’m 55 and was diagnosed with Lyme almost 4 years ago but believe I’ve had Chronic Lyme for years. I would have to wear a heart monitor several times in past all showing I was having issues but had no idea why. I’m assuming the Lyme was the underlying cause. I have no local Lyme Literate Doctors ugh so frustrating

    • Dr. Daniel Cameron
      02/24/2020 (11:24 am)
      Reply

      How frustrating. You should include a doctor who is familiar with the range of manifestations of Lyme disease. Call my office in New York at 914 666 4665 with any questions.

  • Eloida Goldie James
    02/22/2020 (3:33 pm)
    Reply

    Why is the mainstream medical industry disregarding this disease, making it impossible for people to afford treatment as it is
    not conventional enough to be covered by health insurance. How many more people need to be infected.before the system changes?

  • Stephanie Surprenant
    02/21/2020 (7:35 pm)
    Reply

    I’ve been suffering from what I’m sure is Lymes for approximately 10 years. Testing negative twice is so frustrating, I’m suffering from all the mentioned symptoms. I’ve been to every medical professional and specialist, to hear my bloodwork says I’m healthy. Now, heart irregularities are occurring. Cardiologist said my heart looks fine after a 2 minute EKG! I woke up in November to a torn retina. When preparing me for surgery they ask if I’ve had heart issues. There it was showing up! I just encouraged my husband to increase my life insurance policy! At 55 I don’t think I should be suffering this much. I’m simply convinced my medical profession is failing me! Why can’t I get help?

  • Ann Marston
    02/18/2020 (6:58 am)
    Reply

    You were asked what treatment might have been effective. You do not seem to have answered that question

    • Dr. Daniel Cameron
      02/18/2020 (9:09 am)
      Reply

      I typically use clinical judgment if the tests are negative or pending. The authors of the case came to the same conclusion. I often start with oral doxycycline but there are other treatments available depending on the case. I have also advised consultations, emergency room visits, hospitalizations and consultations as needed. I have also also added treatment for Babesia if needed.


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