Archive for the ‘Heart Issues’ Category

Suspect Lyme Carditis? Start Empiric Antibiotics, Case Report Suggest (And Lyme Carditis is Not Rare!)

https://www.medscape.com/viewarticle/920145

Suspect Lyme Carditis? Start Empiric Antibiotics, Case Report Suggest

By Jennifer Garcia

October 21, 2019

Lyme carditis, caused by infection with the spirochete Borrelia burgdorferi, is a rare but potentially fatal complication that may be prevented with rapid empiric antibiotic treatment.

In a new case report, public health officials describe two patients from areas where Lyme disease is endemic. The patients presented with vague, nonspecific signs and electrocardiogram (ECG) changes suspicious for Lyme carditis.

Although borreliosis was suspected and was tested for, neither patient received antibiotic therapy while awaiting test results, and both subsequently died.

“Guidelines recommend simultaneous initiation of empirical antibiotic therapy and Lyme serologic testing when Lyme carditis is suspected. Lyme carditis can progress rapidly, and waiting for confirmatory diagnostic therapy to initiate antibiotic treatment may result in negative outcomes,” write Grace E. Marx, MD, MPH, from the Centers for Disease Control and Prevention in Fort Collins, Colorado, and colleagues.

The authors note that their objective in reporting the cases was

“to remind clinicians of the importance of early recognition and treatment of Lyme carditis.”

The report was published online today in the Annals of Internal Medicine.

The first patient was a 57-year-old man from Vermont who had a 1-week history of fever, fatigue, chest pain, and shortness of breath. Erythematous macules were noted on the trunk, and ECG revealed first-degree atrioventricular block. Despite consultation with an infectious disease physician and positive results for B burgdorferi, antibiotic therapy was not initiated, and the patient died 12 days after initial presentation.

The second patient was a 49-year-old woman from Massachusetts who presented with nausea, vomiting, and severe headache. A CT scan and an ECG were normal. The patient was discharged with antiemetics and analgesics. Two weeks later, she reported syncopal episodes, fatigue, as well as bladder and bowel incontinence. An ECG demonstrated atrioventricular dissociation. Continuous cardiac event monitoring and Lyme testing were ordered. Two days later, results of Lyme testing came in positive, and antibiotics were dispensed. The patient died the following day, before the first antibiotic dose was taken.

Postmortem histopathologic evaluation of heart tissue in both patients revealed

“lymphohistiocytic pancarditis with immunohistochemical and molecular evidence of B burgdorferi.”

The authors acknowledge that Lyme carditis is rare and that only nine other fatal cases have been reported in the literature. However, given the risk for rapid progression in these patients, current guidelines recommend

“temporary pacing by an external pacemaker for patients with symptomatic or high-risk electrocardiographic features.”

_________________

**Comment**

I pray to God that this information is getting to doctors.

Please know Lyme carditis is NOT RARE!  It’s just rarely reported. Also, the fact there are already nine known fatal cases in the literature should cause every doctor to pause and consider. ER doctors also need to know this as many people start off in the ER with heart symptoms but are sent home when they can’t seem to find anything initially.  Unfortunately it isn’t until the heart issues become much more severe or end in death that they are taken seriously.

How many more have to die before doctors wake up?

I personally know patients with serious heart issues that were pooh poohed by doctors. I hope they are still alive.

In this article, CDC expert Dr. Forrester comments that 4-10% of Lyme patients get carditis.  If we take the CDC’s estimate that 300,000 people contract Lyme each year, that’s 12,000 –  30,000 with Lyme carditis. https://madisonarealymesupportgroup.com/2019/02/21/diagnosis-treatment-of-lyme-carditis/

Does that sound rare to you?

https://madisonarealymesupportgroup.com/2018/07/09/with-unexpected-death-autopsies-should-look-for-lyme-carditis/

Excerpt:  “Lyme expert Dr. Daniel Cameron has done a nice job of summarizing five cases in a blog. http://danielcameronmd.com/autopsy-study-reviews-cases-due-to-sudden-cardiac-death-from-lyme-disease/
Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. (March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract
Excerpt:

Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”

Please get the word out.  Enough people have died.

Wrongful Dealth Suit Shows Pitfalls of IDSA Lyme Guidelines

https://www.lymedisease.org/elone-wrongful-death-lawsuit-lyme/

Wrongful death suit shows pitfalls of IDSA Lyme guidelines

Rare Presentation of Endocarditis & Mycotic Brain Aneurysm

2019 Aug 16. pii: S0003-4975(19)31173-7. doi: 10.1016/j.athoracsur.2019.06.073. [Epub ahead of print]

Rare Presentation of Endocarditis and Mycotic Brain Aneurysm.

Author information

1
Division of Pediatric and Congenital Cardiothoracic Surgery, Department of Surgery and Perioperative Care. Electronic address: zbeckerman@austin.utexas.edu.
2
Tecnologico de Monterrey, Escuela de Medicina y Ciencias de la Salud, Monterrey, Mexico; Division of Pediatric and Congenital Cardiothoracic Surgery, Department of Surgery and Perioperative Care.
3
Department of Pediatrics, University of Texas Dell Medical School, Dell Children’s Medical Center, Austin, Texas.
4
Division of Pediatric and Congenital Cardiothoracic Surgery, Department of Surgery and Perioperative Care; Department of Pediatrics, University of Texas Dell Medical School, Dell Children’s Medical Center, Austin, Texas.

Abstract

Bartonella endocarditis can be a very elusive diagnosis. The clinical manifestations can vary and, at times, include multiorgan involvement. This case report describes two patients presenting with multiorgan failure, cerebral mycotic aneurysms and valvular endocarditis secondary to Bartonella infection. The complex diagnosis, decision making, and surgical management are described.

________________

**Comment**

It’s unfortunate that once again the study authors choose the word “rare” regarding Bartonella and/or any tick-borne infection manifestations, as even the most hardened critics admit these pathogens are prevalent and can have highly variable presentations. It would have been much more appropriate that the authors would state it’s the first time these particular findings have been published rather than give people the impression something occurs rarely.

Lyme patients and the doctors treating this appropriately are acutely aware of potential heart involvement:  https://madisonarealymesupportgroup.com/2019/06/04/how-vector-borne-diseases-impact-heart-health/

https://madisonarealymesupportgroup.com/2018/06/03/heart-problems-tick-borne-disease/

https://madisonarealymesupportgroup.com/2017/01/04/endocarditis-consider-bartonella/

https://madisonarealymesupportgroup.com/2017/05/11/bartonella-henselae-in-children-with-congenital-heart-disease/

Again, please keep in mind that current 2-tiered CDC testing is based on blood tests that misses half of all cases and do not look for the organism but the body’s immune response (antibodies):  https://madisonarealymesupportgroup.com/2018/12/16/laboratory-testing-for-lyme-disease/  Current CDC guidelines were created for surveillance purposes only but are being used diagnostically. All patients should be informed that they can still be infected despite a negative test. 

Also, please be aware of the conflicts of interest regarding patents on testing:  https://madisonarealymesupportgroup.com/2019/06/28/who-owns-the-elisa-patents/

64357008_10217935576008450_2638357839671721984_n

There are going to be patients with heart symptoms that have an underlying tick-borne illness but test negatively (seronegative). These people are falling through the cracks of the medical symptom yet could be greatly helped with appropriate antimicrobial treatment. If you suspect you are one of these people or suspect others, please give the validated Horowitz questionnaire to them to take to their practitioner:  https://madisonarealymesupportgroup.com/2017/09/05/empirical-validation-of-the-horowitz-questionnaire-for-suspected-lyme-disease/ It also takes an open mind and trained eye to diagnose these patients, and it can be Lyme, Baronella, or any one of many pathogens transmitted by ticks:  https://madisonarealymesupportgroup.com/2019/08/22/early-diagnosis-necessitates-lyme-savvy-doctors/  I hope doctors are waking up to the growing need for education regarding the growing link between tick-borne illness and heart issues.

 

 

 

 

 

Endocarditis Caused by Bartonella Quintana, A Rare Case in the U.S.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6667705/

. 2019; 17: e00533.
Published online 2019 Apr 6. doi: 10.1016/j.idcr.2019.e00533
PMCID: PMC6667705
PMID: 31384552

Endocarditis caused by Bartonella Quintana, a rare case in the United States

Abstract

Bartonella quintana is a relatively rare cause of endocarditis in the United States (USA). Historically it was linked with trench fever, but cardiac involvement seems to be more prevalent recently. There are some known risk factors associated with Bartonella quintana endocarditis such as human immunodeficiency virus (HIV) infection, alcoholism, homelessness and poor hygiene. We report a case of 37-year-old African man, with culture negative endocarditis, emboli and rising B. quintana and B. henselae IgG titers. B. quintana DNA was subsequently detected from the mitral valve sample with 16S rRNA gene and ribC primer sets. Eventually, blood culture for B. quintana was positive after 21 days. Patient was successfully treated with doxycycline and gentamicin. There have been a few cases of B. quintana endocarditis in the USA and most of them were associated with HIV infection, homelessness or alcoholism. The case reported here highlights the importance of high clinical suspicious for Bartonella species in blood culture negative endocarditis in the USA in appropriate setting and will help to increase awareness among physicians for early diagnosis and treatment.

___________________

**Comment**

A few points of interest:

  • Patient’s chief complaints:  progressive shortness of breath, chest painoccasional non-drenching night sweats, fatigue, unintentional ten pound weight loss, and intermittent sharp chest pain radiating to the neck
  • Past medical history significant for latent tuberculosis infection and treatment completed 3 months prior to the presentation
  • While living in the Democratic Republic of Congo before migrating to Indiana, patient had a cow at his home and used to drink raw cow’s milk
  • Had Janeway Lesions on hands & feet http://www.healthgala.info/2017/08/Janeway-lesion-Pictures-Definition-Symptoms-Causes-Treatment.html

Janeway lesion Pictures, Definition, Symptoms, Causes, Treatment

Janeway lesion Pictures, Definition, Symptoms, Causes, Treatment

  • Was considered immunocompetent 

For more:  https://madisonarealymesupportgroup.com/2017/01/04/endocarditis-consider-bartonella/

https://madisonarealymesupportgroup.com/2018/09/28/bartonella-infective-endocarditis-with-dissemination-a-case-report-literature-review/

https://madisonarealymesupportgroup.com/2019/08/12/tick-borne-pathogens-bartonella-spp-borrelia-burgdorferi-sensu-lato-coxiella-burnetii-rickettsia-spp-may-trigger-endocarditis/

https://madisonarealymesupportgroup.com/2019/04/25/case-of-endocarditis-caused-by-bartonella-after-mitral-valve-repair/

https://madisonarealymesupportgroup.com/2018/07/10/infective-endocarditis-associated-with-bartonella-henselae-a-case-series/

https://madisonarealymesupportgroup.com/2019/04/24/human-bartonellosis-an-underappreciated-public-health-problem/

 

 

 

 

 

Tick-borne Pathogens Bartonella spp., Borrelia Burgdorferi Sensu Lato, Coxiella Burnetii & Rickettsia Spp. May Trigger Endocarditis

https://www.ncbi.nlm.nih.gov/pubmed/31374162/

2019 Jul;28(7):957-963. doi: 10.17219/acem/94159.

Tick-borne pathogens Bartonella spp., Borrelia burgdorferi sensu lato, Coxiella burnetii and Rickettsia spp. may trigger endocarditis.

Abstract

BACKGROUND:

Infections caused by tick-borne pathogens such as Bartonella spp., Borrelia burgdorferi s.l., Coxiella burnetii and Rickettsia spp. are capable of causing serious lesions of the mitral and aortic valves, leading to a need for valve replacement.

OBJECTIVES:

The aim of the study was to determine whether such cases are sporadic or frequent. An additional goal was to establish effective diagnostic methods to detect these infections.

MATERIAL AND METHODS:

The study involved 148 patients undergoing valve replacement. Blood samples were drawn for serological testing. Samples of the removed mitral and aortic valves were tested with PCR and immunohistochemical staining.

RESULTS:

Specific antibodies to

  • Bartonella spp. were detected in 47 patients (31.7%) and in 1 of the healthy controls (1%) (p < 0.05)
  • B. burgdorferi spirochetes were found in 18 of the patients (12.2%) and in 6 blood donors from the control group (5.8%) (p < 0.1)
  • Rickettsia spp. were detected in 12 (8.1%) 
  • C. burnetii phase I and II antigens in the serum of 1 patient. All the participants in the control group were seronegative to C. burnetii and Rickettsia spp. antigens.
  • PCR tests for detection of Bartonella spp., B. burgdorferi s.l., C. burnetii and Rickettsia spp. DNA in the valve samples were all negative.

Inflammation foci with mononuclear lymphoid cells in the aortic and mitral valves were seen in sections stained with hematoxiline and eozine. In sections dyed using the indirect immunofluorescence method with hyperimmune sera, Bartonella spp. and Rickettsia spp. were found.

CONCLUSIONS:

The results obtained indicate that laboratory diagnostics for patients with heart disorders should be expanded to include tests detecting tick-borne zoonoses such as bartonelloses, Lyme borreliosis, rickettsioses and Q fever.

________________

**Comment**

This article shows that tick borne pathogens are common with patients needing heart valve replacements. Unfortunately, testing still isn’t accurate. Finding antibodies, authorities would argue, doesn’t mean a person has symptoms; however, this issue desperately needs further research as finding antibodies does indicate the presence of pathogens.

A point to be made about the low percentage of those testing positive for Lyme might be due to the fact they only tested one strain: Borrelia burgdorferi sensu lato.  There are 300 strains worldwide and 100 in the U.S. (and counting).

Bartonella is similar in the fact that a recent article pointed out that a 14-year-old boy with PANS caused by Bartonella henselae infection was NOT seropositive. Only one of the three blood samples tested positive before culturing and only two tested positive after culturing. A single blood draw might have missed confirming a diagnosis of bartonellosis.

How many doctors are going to hunt these infections to ground? How many have the time and doggedness it requires to find them? It’s far more likely they will take the results from a singular test, close the book, and move onto the next patient.

We desperately need accurate tests that pick up ALL the pathogens.

 

 

 

Infective Endocarditis Without Biological Inflammatory Syndrome: Description of a Particular Entity

https://www.ncbi.nlm.nih.gov/pubmed/31303461

2019 Jul 11. pii: S1875-2136(19)30078-6. doi: 10.1016/j.acvd.2019.02.005. [Epub ahead of print]

Infective endocarditis without biological inflammatory syndrome: Description of a particular entity.

Abstract

BACKGROUND:

Bacterial infective endocarditis (IE) is rarely suspected in patients with a low C-reactive protein (CRP) concentration.

AIMS:

To address the incidence, characteristics and outcome of left-sided valvular IE with low CRP concentration.

METHODS:

This was a retrospective analysis of cases of IE discharged from our institution between January 2009 and May 2017. The 10% lowest CRP concentration (<20mg/L) was used to define low CRP concentration. Right-sided cardiac device-related IE, non-bacterial IE, sequelar IE and IE previously treated by antibiotics were excluded.

RESULTS:

Of the 469 patients, 13 (2.8%; median age 68 [61-76] years) had definite (n=8) or possible (n=5) left-sided valvular IE with CRP<20mg/L (median 9.3 [4.7-14.2] mg/L). The median white blood cell count was 6.3 (5.3-7.5) G/L. The main presentations were heart failure (n=7; 54%) and stroke (n=3; 23%). Transthoracic echocardiography (TTE) showed vegetations (n=5) or isolated valvular regurgitation (n=4). Overall, eight patients (62%) had severe valvular lesions on transoesophageal echocardiography (TOE), and nine patients (69%) underwent cardiac surgery. All patients survived at 1-year follow-up. Bacterial pathogens were documented in eight patients using blood cultures, serology or valve culture and/or polymerase chain reaction analysis.

  • streptococci
  • coagulase-negative Staphylococcus
  • Corynebacterium jeikeium
  • HACEK group (Haemophilus, Aggregatibacter, Cardiobacterium, Eikenella, Kingella)
  • Coxiella burnetii
  • Bartonella henselae

CONCLUSIONS:

Left-sided valvular IE with limited or no biological syndrome is rare, but is often associated with severe valvular and paravalvular lesions. TOE should be performed in presence of unexplained heart failure, new valvular regurgitation or cardioembolic stroke when TTE is insufficient to rule out endocarditis, even in patients with a low CRP concentration.

_________________

**Comment**

A low CRP concentration means there isn’t inflammation. Typically, bacterial infections raise CRP, so this study is important because it shows that patients can be infected but NOT have a high CRP. 

For more on Baronella and Heart issues:  https://madisonarealymesupportgroup.com/2019/06/04/how-vector-borne-diseases-impact-heart-health/

https://madisonarealymesupportgroup.com/2019/04/25/case-of-endocarditis-caused-by-bartonella-after-mitral-valve-repair/

https://madisonarealymesupportgroup.com/2017/05/11/bartonella-henselae-in-children-with-congenital-heart-disease/

https://madisonarealymesupportgroup.com/2017/01/04/endocarditis-consider-bartonella/

https://madisonarealymesupportgroup.com/2018/09/28/bartonella-infective-endocarditis-with-dissemination-a-case-report-literature-review/

https://madisonarealymesupportgroup.com/2018/09/07/bartonella-infectious-endocarditis-associated-with-cryoglobulinemia-multifocal-proliferative-glomerulonephritis/

https://madisonarealymesupportgroup.com/2018/07/10/infective-endocarditis-associated-with-bartonella-henselae-a-case-series/

Regarding Coxiella burnetti, or Q-Fever:

https://madisonarealymesupportgroup.com/2019/02/14/impact-of-pre-operative-antimicrobial-treatment-on-microbiological-findings-from-endocardial-specimens-in-infective-endocarditis/

The brown dog tick, Rocky Mountain Wood tick, and the Lone Star Tick are all vectors and Q-fever is endemic throughout the U.S.  Treatment is doxycycline.

https://phc.amedd.army.mil/PHC%20Resource%20Library/QFever_FS_18-048-0317.pdf  This document states Q-Fever is a category B agent (moderately easy to disseminate).

Humans are very susceptible to the disease and few organisms are required to cause
infection. In rare instances, people may acquire Q fever via the ingestion of raw milk or eggs, by tick bites, or by human-to-human transmission.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC88923/  Interestingly, even as far back as the 30’s, Q-fever was noted to have properties of both viruses and rickettsiae. This document states Q fever may occur in patients without any animal contact due to it’s ability to be spread by wind.  The same document states human Q-fever cases have occurred in the following:

  • An OB after an abortion on an infected woman
  • transplacental transmission
  • autopsies
  • intradermal inoculation
  • blood transfusion
  • tick bite
  • sexually in infected mice
  • possibly from infected dogs
  • infected cats

The real kicker on that last one was the 1984 report of 13 people who developed febrile respiratory disease by playing poker in a room where a cat had delivered kittens.  Abstract here:

Kosatsky T. Household outbreak of Q-fever pneumonia related to a parturient cat. Lancet. 1984;ii:1447–1449. [PubMed]

Symptoms were:

  • bradycardia (slow heart rate)
  • fever
  • palatal petechiae (red or purple spots on mouth palate)
  • rapidly enlarging bilateral pulmonary infiltrates (fluid in both lungs)

When Lyme Kills

https://elemental.medium.com/when-lyme-kills

Illustration by Anuj Shrestha

When Lyme Kills

The extremely rare complication you should know about

This story is part of “Tickpocalypse,” a multi-part special report.

Joseph Elone just felt tired at first, like he wasn’t sleeping well. A 17-year-old high-school student from upstate Poughkeepsie, New York, Joseph was a quiet but popular science whiz and electric-guitar lover who had just finished a summer environmental fellowship at Brown University. He’d spent two weeks studying on campus and hiking in the Rhode Island woods and was still riding high from the experience. It was late July, and life had a carefree feeling to it. “He was really happy that he had this chance to really open himself up,” says Joseph’s brother, Emmanuel. “He knew that as soon as senior year started he was going to apply early to Brown.”

Soon, however, Joseph developed cold symptoms — a cough, a sore throat, head and body aches, digestive problems, and a low-grade fever.

Poughkeepsie is located in New York’s Hudson Valley region, an area known for high rates of Lyme disease. Joseph had seen no signs of a tick, a tick bite, or the bull’s-eye rash that is often the telltale marker of Lyme, but he and his parents decided he should see his pediatrician in any case.

The doctor saw little reason for concern. Joseph likely had the flu, he said. He prescribed the standard regimen — rest, fluids, and the like — and suggested they give it time.

But a few days later, Joseph’s symptoms worsened. He was feeling light-headed and said he was sensitive to bright light. He returned to the same doctor, who ordered blood tests for strep throat, Lyme disease, and another tick-borne illness called anaplasmosis. The results were all negative.

Joseph and his family were aware that the antibodies indicating the presence of Lyme disease can take weeks to show up in tests, but even if Joseph were to develop the disease, they weren’t worried. Joseph was young and otherwise healthy, and Lyme is usually curable in a matter of weeks with antibiotics.

“It just seemed like he had a cold or something, or a little fever, but nothing crazy,” Emmanuel says. “It wasn’t something that you would take seriously in the moment.”

August 4, 2013, was a hot and hazy Sunday in Poughkeepsie. Diane’s 49th birthday was the next day, and the family had planned a barbecue that night. Late in the afternoon, Benedict and Emmanuel were getting the backyard ready while Joseph and Diane drove to the drugstore for cough drops. They had just come back, Diane walking toward the house ahead of Joseph, when she heard her son collapse behind her.

Joseph lay on the lawn, a few steps from the family’s front door, unconscious. Diane began screaming. The others came and started screaming, too — calling to Joseph and hugging him, but he didn’t respond.

EMTs rushed Joseph to a local hospital, where doctors spent several hours working to revive him. His breathing was shallow, his heartbeat erratic. Later that evening, he was transported 50 miles south to Westchester Medical Center. Not long after he arrived, in the early hours of August 5, just three weeks since he had started feeling sick, Joseph was pronounced dead.

It would take at least four months and several incorrect diagnoses to determine the cause of Joseph’s death, but ultimately, examinations revealed the presence of Lyme bacteria in several of his organs, including his heart.

The Elone family, devastated by Joseph’s loss, was shocked all over again. They had never heard of anyone dying from Lyme disease.


According to the Centers for Disease Control and Prevention, the number of confirmed cases of Lyme Disease in the U.S. rose 131% in the two decades leading up to 2017 and 17% from 2016 to 2017 alone. More than 300,000 new cases are now diagnosed annually, and as climate change and other factors trigger a dramatic increase in the tick population, experts expect the disease to become more common still.

If Lyme is detected early, the standard two-week course of antibiotics usually works well, and most people recover quickly. But about 20% of those who contract the disease continue living with its effects for months after treatment. The corresponding diagnosis, Post-Treatment Lyme Disease Syndrome (PTLDS), stands to affect more than two million people in the U.S. by 2020.

There is also a very small subset of Lyme cases in which the disease proves to be fatal. Although such instances are extremely rare, they are uniquely devastating. They may also be underreported — and preventable.

Joseph Elone’s death in 2013 occurred the same year the CDC released a report of three other deaths related to Lyme. The discovery of the four cases, a small but nevertheless unusual number, led to further inquiries that uncovered numerous additional instances in New York state that had previously gone largely unnoticed, leading experts to wonder if Lyme deaths might actually be more common than previously thought. The new focus on Lyme deaths also shined a light on a cause of the fatalities called Lyme carditis, raising questions about doctors’ awareness of that condition, and the screening procedures used to detect it. Advocates say those questions have yet to be resolved.

“One preventable death is one too many.”

Timothy Sellati, a veteran Lyme researcher and the chief scientific officer of the Global Lyme Alliance, which funds research and awareness programs, says the number of deaths associated with Lyme carditis are underreported. His group and others have begun calling for revised methods of diagnosis to detect the condition earlier. While the overall number of deaths from Lyme disease remains small, “One preventable death is one too many,” he says.


Given the absence of swift and reliable testing to detect Lyme disease, confirming its role in any death is a slow process. At first, all experts could say was that something had weakened Joseph Elone’s heart, compromising its function. The cause of death initially recorded was myocarditis (an inflammation of the heart muscle) and meningitis (a bacterial infection). Another tick-borne illness, Powassan encephalitis, was also suspected at one point.

It was only in December when reports surfaced that tests had found Lyme spirochetes, or bacterial residue, in Joseph’s heart tissue. Sure enough, in March 2015, a prominent medical journal confirmed that Joseph’s liver, heart, lung, and brain tissues all contained evidence of Lyme. The official cause of Joseph’s death was Lyme carditis.

Lyme carditis occurs when Lyme disease bacteria invade the tissues of the heart, disrupting electrical signals between the organ’s upper and lower chambers. That, in turn, causes an abnormal heart rhythm and a problem known as “heart block.” Heart block can be mild, but it can also become serious very quickly. Patients typically experience many of the symptoms characteristic of Lyme disease — fatigue, coughing, headaches, and the like — plus cardiovascular or pulmonary symptoms like light-headedness, fainting, shortness of breath, heart palpitations, or chest pain. Like Lyme itself, the condition is generally treatable if detected early. (Depending on the severity of the case, people are given oral or intravenous antibiotics; in some instances, they may need a temporary pacemaker.) But if Lyme carditis is not treated in time, it can be fatal.

According to the CDC, Lyme carditis occurs in approximately 1% of Lyme cases reported to the agency; in one 2008 epidemiological study, the condition was named as the main cause of death among patients who die from Lyme disease. A 2009 study of 207 pediatric patients with Lyme disease found that 16% had Lyme carditis. All three of the additional deaths cited in the CDC report issued the year Joseph died were linked to the condition.

The other three victims were two men and one woman, the youngest 26, the oldest 38. In November 2012, one of them, a Massachusetts man, complained of malaise and muscle and joint pain in the weeks before being found behind the wheel of a car after it veered off the road. In July 2013, a New York state corrections officer who had also worked as a landscaper was hanging laundry on his front lawn when he clutched his chest in pain, staggered, and dropped to the ground. He had experienced chest pain on and off for at least several days, his wife later said, but had not seen a doctor. That same month, just a few days before Joseph’s death, a Connecticut resident collapsed after more than a week of complaining of occasional shortness of breath and anxiety. In all three cases, Lyme carditiswas found posthumously.

When Joseph Elone became known as the fourth case of death from Lyme disease in the space of a year, reporters from the Poughkeepsie Journal combed through 1.2 million death certificates from non-New York City counties in New York state searching for more fatalities that might be linked to Lyme. They found nine Lyme-related deaths over 13 years. Not all of those cases involved Lyme carditis, and the details of each weren’t analyzed.

The CDC has officially identified just nine cases of fatal Lyme carditis in the United States between 1985 and 2018, but if one newspaper can find nine Lyme deaths in one state in a shorter period of time, some experts believe the real number may be higher.

“I think they are underreported,” says Renu Virmani, a cardiac pathologist who has studied Lyme carditis deaths and runs a cardiac research organization in Maryland called CVPath Institute. Her suspicion, she says, is based on the fact that Lyme carditis occurs in one out of every hundred Lyme cases, but medical examiners rarely consider testing people who die from sudden heart failure for Lyme.

“Nobody thinks of doing that until after you made the diagnosis,” she says. The only deceased patients who are tested for Lyme posthumously are people who tested for Lyme while they were still living, she says. And since it is well-established that many Lyme cases go undiagnosed while the person is still living, it stands to reason that at least some fatalities may happen with no one knowing.

“It’s very unusual for a medical examiner to make the diagnosis of Lyme disease,” Virmani says. “Very unusual. And I’m sure there are people who die of Lyme disease.”


Lyme carditis isn’t the only source of Lyme-related deaths. People with underlying health conditions can be overcome by Lyme disease, and suicide is a risk for PTLDS patients who become severely debilitated or depressed. But those risks are relatively well-known.

Lyme carditis, on the other hand, often goes overlooked. The condition is so rare that most people and doctors are barely aware of it, if they’ve even heard of it at all.

After Joseph Elone’s death and the report of the three other Lyme carditis deaths in the same year, officials in Duchess County, New York changed their public health advisory to doctors weighing Lyme as a cause of illness. Now physicians are told to ask about cardiac symptoms in possible Lyme cases and to check cardiac cases for possible exposure to ticks and symptoms of the disease. (Forty-two percent of the pediatric Lyme carditis patients identified in the 2009 CDC study had advanced heart-function problems.)

Lyme prevention advocates want standards like those adopted universally. Doctors in the United States currently follow guidelines for Lyme diagnosis set forth by the Infectious Disease Society of America, but a newly formed group of physicians called the International Lyme and Associated Diseases Society has developed a more aggressive screening approach. It involves more than one blood test, and faster treatments for patients seen to be more at risk, and above all a set of criteria that encourages doctors to move more quickly based on their own professional judgment, even when tests come back negative. Under the older IFDS guidelines, advocates say, some doctors felt penned in by the criteria, concerned about professional blowback for treating cases in which there is no confirmation by a blood test or no classic bull’s-eye rash.

“I think the problem with the IDSA guidelines is they operate from the notion that all patients are going to respond to antibiotics the same way and a relatively short course of antibiotics will cure all patients,” says Sellati of the Global Lyme Alliance. Such a rigid, uniform approach may not permit doctors to be more aggressive when they believe the circumstances warrant it. The new recommendations issued by ILADS, Sellati says, are more nimble. “They want to provide more deference to the physician’s experience, especially if they see a lot of Lyme disease patients. Using a combination of their experience, seeing large numbers of patients, and the broader symptoms that could be associated with Lyme disease, they’re allowed to sort of think outside the box.

He suggests parents not be alarmed about Lyme carditis, but to be aware of it, “especially if a patient has other heart abnormalities, like congenital heart disease or other things that could impair their heart’s function.”


After his son’s death, Benedict Elone called for increased awareness of Lyme’s fatal potential and for more to be done to prevent Lyme deaths.

“Be it Lyme or be it Powassan — people need to know that it can kill a strong, physical guy,” he told reporters. “There is something in our environment that can kill somebody that fast. We really need to know about it, study it, and find some solutions.”

In front of the TV cameras, he spoke lovingly about his son. “He’s a kid who knew who he was,” Benedict said. “He had all kinds of ambition. Teachers couldn’t stop speaking well of him.”

And then he dissolved into tears, repeating the same phrase again and again. “I just miss my son,” he said. “I just miss my son. I just miss my son. I just miss my son.”


This story is part of “Tickpocalypse,” a multi-part special report.

__________________

**Comment**

Well, if this isn’t heartbreaking, I don’t know what is.

There are numerous points that should be mentioned:

  1. The media, researchers, and doctors need to refrain from the word “RARE” on pretty much anything regarding tick-borne illness. Notice out of one side of his mouth, the author states the same year Elone died, the CDC released a report of three other deaths related to Lyme, “which led to further inquiries that uncovered numerous additional instances in New York state…leading experts to wonder if Lyme deaths might actually be more common than previously thought.”  Then, out of the other side of his mouth he announces with certainty that it’s rare. This is illogical and undermines the seriousness of this. All I can say is Zika was handled very differently.
  2. Please take note that spirochetes riddled his body. They were all over. How many dead bodies have to pile up before the CDC/IDSA/NIH believe Lyme is serious and that those with persistent symptoms just might be chronically infected, with spirochetes riddling our bodies? Instead, we have bone-heads saying we have MUS (medically unexplained symptoms), which essentially means he believes we are psychosomatic:  https://madisonarealymesupportgroup.com/2019/06/11/dr-eugene-shapiro-medically-unexplained-symptoms/  Video of Shapiro stating he believes our symptoms are completely unrelated to Lyme, i.e. – MUS. He also states the parents weren’t happy with his findings….gee, I wonder why?
  3. Again, regarding only 20% of patients being in the PTLDS group: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/, microbiologist Holly Ahern states that number is incorrect and only includes those patients diagnosed and treated early. When you add the 10-20% in this category with the 30-40% NOT diagnosed and treated, you get a whopping potential 60% of ALL patients who go on to develop chronic/persistent symptoms.  This is HUGE and downplayed. Little to no research exists on this patient group and yet they are in the majority.
  4. If you want to take a peek at the number of people DYING from Lyme: http://whatislyme.com/rip-lyme-friends-memorial/  Collected by Lyme patient and advocate Lisa Hilton, she’s also made a chart and listing of Lyme deaths: http://whatislyme.com/is-lyme-disease-fatal/, based upon 219 Lyme deaths.  
Is that still considered rare?