Relying on a negative Lyme disease test can prove deadly
In August of 2013, a 17-year-old boy died suddenly from cardiac arrest. Initially, health officials blamed the Powassan virus for his death. But a recent report in Cardiovascular Pathologist finds that the young man died instead from Lyme carditis.
In the summer of 2013, a young man from Poughkeepsie, NY, died suddenly after suffering from flu-like symptoms for nearly 3 weeks. Initial reports suggested he had died from complications due to the Powassan virus, a rare illness, transmitted by ticks that can be fatal.
However, a paper published in the March issue of Cardiovascular Pathologist, 3. reports the adolescent, in fact, had died from Lyme carditis.
Negative Lyme disease tests overshadowed the patient’s clinical symptoms. A diagnosis of Powassan virus was changed to Lyme carditis after the young man’s death.
According to the report, the ELISA and Western blot IgM tests, conducted as part of the autopsy, were positive for Borrelia burgdorferi, the agent that causes Lyme disease. Additional tests, including PCR (polymerase chain reaction) and immonohistochemistry (ICH) staining found Borrelia spirochete present in the patient’s liver, heart, lung, and brain tissues.
“The findings support B. burgdorferi as the causative agent for his fulminant carditis and that the patient suffered fatal Lyme carditis,” the authors write.
The high school honor roll student had 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.
According to his parents, he initially developed a mild cough, occasional fevers, a sore throat, malaise, headaches and body aches. Serology tests for Lyme disease and anaplasmosis were negative.
The young man’s symptoms progressed. He complained of gastrointestinal problems, light-headedness and photophobia (light sensitivity). According to the Poughkeepsie Journal, he was instructed to rest and stay hydrated.
A few days later, he collapsed suddenly in his backyard. The young man had gone into cardiac arrest. “Doctors in Westchester tried to diagnose his condition but were stumped,” states the Poughkeepsie Journal. The teenager died several hours later. He was just 17-years-old.
When an individual manifests symptoms consistent with Lyme disease and has been exposed to a tick endemic region, clinicians should consider a Lyme disease diagnosis, even with a negative test result.
Because Lyme disease symptoms are often compared to those of the flu, people may tend to equate the two illnesses, and mistakenly assume that Lyme disease is harmless. That is not necessarily the case. If the infection is not treated appropriately in its initial stage, the disease can progress, causing debilitating symptoms, chronic illness and, in rare cases, fatalities.
What is Lyme carditis?
Lyme carditis occurs when the Lyme spirochete (Borrelia burgdorferi) enters the heart tissue. It is considered rare with only a handful of fatalities reported. The condition can be extremely challenging to diagnose, since patients typically describe classic flu-like symptoms. In fact, one study found 94% of patients with Lyme carditis exhibited nonspecific symptoms, including fever, malaise, headache, arthralgia, and/or myalgias. 1
Children and adolescents can also be affected. A 2009 study in Pediatrics, Lyme carditis in children: presentation, predictive factors and clinical course, evaluated 207 pediatric patients with early disseminated Lyme disease and found that 16% had Lyme carditis, 42% of those patients had advanced heart block, with 27% exhibiting complete heart block and 4 patients with severely depressed systolic ventricular function. 1
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.
The young man appeared to fit the requirements for a Lyme disease diagnosis. He had the typical symptoms associated with Lyme – fatigue, headaches, body aches, GI disruptions, fevers, light sensitivity – and he had visited a tick 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.
Yet, the young man was not diagnosed, nor treated for Lyme disease. It is unfortunate that his negative test results overshadowed his clinical symptoms and history.
The Centers for Disease Control and Prevention (CDC) point out that patients tested during the first few weeks of illness often test negative, because there’s not enough antibodies in the bloodstream to be detected. The ELISA and Western blot can miss up to 60% of well-defined Lyme disease cases. 2
Physicians who treat Lyme disease according to guidelines put forth by the International Lyme and Associated Diseases Society (ILADS) are encouraged to treat patients based on clinical judgment even when tests are negative.
Last updated: June 10, 2019
Related Articles:
5 things to know about Lyme carditis
Lyme carditis causes complete heart block in 26-year-old man
References:
- Costello JM, Alexander ME, Greco KM, Perez-Atayde AR, Laussen PC. Lyme carditis in children: presentation, predictive factors and clinical course. Pediatrics 2009;123:835–41.
- 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.
- Muehlenbachs, Bollweg, Thadeus, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. 2016 May;186(5):1195-205.
Tasha Rodriguez
02/06/2023 (1:56 pm)
I’m in need of help I’ve been bitten by a tick and my test are coming back negative. I’ve been having heart problems stomach problems headaches can’t barely walk I’m allergic to red meat milk products joint pain can’t breathe I lost my job.
Dr. Daniel Cameron
02/06/2023 (2:13 pm)
I advise my patients to include a doctor experienced in treating Lyme disease. I have also advised that they also be evaluated for alpha gal syndrome.
claudia schmidt
05/13/2021 (12:32 pm)
I have been diagnosed with Rheumatoid arthritis… although a few years ago I was sure I had a tick bite on the back of my neck .. it was a bulls eye, but the doctor diagnosed it as exima… I had a lyme disease test about a year ago.. which they said was negative.. the arthritis continues to progress , even though i take several rheumatoid arthritis medicines.. The Doctors refuse to give me antibiotics I caN’T UNDERSTAND WHY THEY WONT JUST LET ME TRY ANTIBIOTICS.. One of the arthritis medicines they had me taking , for a year was rinvoq… It cost $5000 per month.. .. I had a bad reaction to it so they finally le me stop taking it… Now i take a large doese of methotrexate, prednmisone , and Hydroxychoroquine.. Still in agony every day … anmd having great rouble walking… I tried byiong some tetracycaline online… but it came from China and I think it was fake.. it didn’t even help my dog’s pinkeye.. The doctors absolutly refuse to let me try the antibiotic… What can i do?
Dr. Daniel Cameron
05/13/2021 (7:49 pm)
I have Lyme disease patients who have it found it difficult to find a doctor with experience treating more than a rash. There are doctors out there who will at least look for Lyme disease. Keep looking.
Keri
07/14/2023 (9:32 am)
yes, but they are holistic doctors who then charge insane fees just to walk in the door!
Dr. Daniel Cameron
07/17/2023 (6:27 am)
I am an Internist who practices allopathic medicine. I have advocated treating the tick borne infection first.
Laura Olson
02/06/2018 (7:37 pm)
My husband has nearly all of the indications of Lyme disease: exhaustion, ataxia, muscle aches, lack of coordination, headache, etc. and also has two tick bites (still visible) from two months ago. His Western Blot came out with only two bands and therefore was deemed negative. SHould we pursue antiobiotics for Lyme disease?
Dr. Daniel Cameron
02/07/2018 (12:37 am)
You should not overlook a tick borne illness even if the tests are negative. You should also be followed to rule out other illnesses. Call our office at 914 666 4665 if you have any questions.
John Decandia
04/09/2019 (7:31 pm)
Yes you should seek a Lyme disease literate doctor. I have three positive bands 41,50 and 58. My infection disease doctor said you do not have Lyme disease as per CDC regulations 5 bands are required. I have a friend at work who only had two bands and was treated with antibiotics. The Lyme disease doctor should look at the patients symptoms and bands and make a clinical decision. I am starting treatment now.
Heartbroken mom of college student.
08/29/2021 (3:21 pm)
How do we find a Lyme disease literate doctor? My daughter is negative for all the test but she has all the symptoms she’s suffering daily. We’re going to the mayo clinic work? we are in oklahoma.Heartbroken mom of college student. She has been suffering for four years and we have switched doctors and gone to naturalists and try to lots of different things but nothing is helping her. She feels like she’s rotting from the inside out.
Dr. Daniel Cameron
08/30/2021 (7:58 pm)
You might find a doctor through the Global Lyme Alliance, Lyme disease association, LymeDisease, or ILADS website. You could also call my office at 914-666-4665
sue borton
11/27/2022 (8:56 pm)
With all due respect, Dr. Cameron, they are still in denial in the state of Florida in the majority of circumstances. I’ve been down here on the west coast for almost 3 1/2 yrs and none of them have a decent clue on how to treat. They copy, if they are familiar, and/or follow Dr. Richard Horowitz’s protocols to some degree because they truly don’t believe how serious this disease is.
I’m on my third recommended practitioner and, having been a former patient of Dr R. Horowitz and long time survivor of LD (35 yrs), I think I know proper treatment. The doctors of each state in this country need serious training and recognition of this disease. If Dr. Fauci would give as much attention to this horrid illness as he did COVID, we might have a pathway to progress.
sue borton
11/27/2022 (8:58 pm)
John, same here in Clearwater Florida and my paperwork from a Lyme literate doctor in NY couldn’t be more clear.
A perfect place here….to stick your head in the sand.
C.S.
10/08/2017 (8:08 am)
I developed AV block which stopped my heart as an athlete in my 20’s, and I’m now heavily reliant on a pacemaker. I could not access IV antibiotics due to the controversy surrounding Lyme treatment and the costs of obtaining them out of pocket. I had a positive test, known tick bite at the onset of my symptoms and live in the most endemic state. My referral was still refused by the local infectious disease doctor. Even when patients themselves know that something is objectively wrong and have ECG and serologic evidence, it’s nearly impossible to obtain treatment for Lyme carditis.
Dr. Daniel Cameron
10/08/2017 (8:39 pm)
Sorry to hear you are ill. It can be difficult to determine if a tick borne illness is involved. There are oral antibiotics that may be effective if a tick borne illness is suspected.
Aly
08/22/2017 (8:34 pm)
I had our last child a year ago. At the time of her birth I develop HELLP syndrome. From her birth to today. I have every sign and symptoms of lyme disease. Which from my reading can be brought on from a tramatic event. I actually do remember getting bit by a tick 2 months prior to finding out I was pregnant with her. I have had several blood test done but all have came back negative. I am at a loss on what to do. I have been on std for 5 months now without a proper diagnosis. Other then they think I have silent migranes. My symptoms are only getting worse and the migrane meds only make me tired and do not seem to even help the said migranes. There are times I cannot even read simple words. Your thoughts?
Dr. Daniel Cameron
08/22/2017 (11:13 pm)
We are sorry to hear you remain ill. Tick borne illnesses can be difficult to diagnose if the tests area negative. Your story reflects the difficulties finding an effective treatment whether it Lyme disease or another illness. Call the office at 914 666 4665 if you need an evaluation.