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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.
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.
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I was diagnosed by cardiac arrest in 2013. I have a pacer and brain fog,fatigue, nausea,poor memory and no focus, concentration. As well as bilateral arm and shoulder pain. I applied for std and was denied they say it is preexisting. I was dx on 7/30/13 the cut off is July 1 2013. I must of had Lyme for quite sometime before I was diagnosed. What are your thoughts?
Thank you for creating this blog and thank you for the article on Joseph Elone. I followed the articles on him when they first came out and am disgusted that he was not treated for lyme right away. We have many children dying from Rocky Mountain Spotted Fever in the South and many are dying from the long term effects of not being treated for tick borne and other vector borne pathogens. We need to research the pathogens within people and then figure out the most efficacious medications to deal with those infectious agents. IDSA guidelines are useless and we need to come up with a better methodology for treating very ill people. Prophylactic antibiotic treatment should be the norm and we have IDSA physicians taking a wait and see approach when people are bitten by ticks.
Hi. I have had Lyme carditis. The hospital MRI images showed where spirochetes had seeded into my heart valves. Decades later I now have both Bradycardia at age 60 and also “LBBB” — aka Left Bundle Branch Block. Dr. Cameron saw me at age 31. I was multiply infected way back then! Now even after IV Picc therapies with Rocephin and Claforan and years of oral combination ABX Lyme protocols…My Cardiologist informed me that I have no functioning pacemaker cells on the left side of my heart. Thanks to the denial of a prompt diagnosis and denial of antibiotics by stubbornly ignorant Tennessee physicians.
Deplorable the Medical Business Industry is not taking this serious!!!
3 years ago I woke up with such a sore stiff neck, and then then very next morning had a bulls eye rash on my shoulder, I was sick with flu like symptoms fever exaughtion ,muscle aches, headache and light hurt my eyes terribly. I did not go to the doctor, but have since suffered from severe headaches depression mind fog, confusion, dizziness. I went in for test Lyme and it came back negative. I am really concerned what to next
You should include an evaluation by a doctor experienced in evaluating tick borne illnesses.
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?
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.
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.
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.
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?
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.
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.
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.
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
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.
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.
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?
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.
yes, but they are holistic doctors who then charge insane fees just to walk in the door!
I am an Internist who practices allopathic medicine. I have advocated treating the tick borne infection first.
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.
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.
Tears in my eyes because I survived and he did not. So young and full of promise. It took ten years for me to get a diagnosis. I lost my mind, my will to live, and the ability to walk. I am better now, but still not done with experimental treatments. Find a Functional Medicine doctor if you believe you have Lyme disease. I hope to return to finish my degree to fight this heinous disease with journalism if I can find the funding. Someone needs to make a difference.
At age 59, in 2016, I pulled off a brown and black legged tick 9 years ago in Ky. about eight weeks after shoulder surgery. Eight days later, I broke out in a bad rash that turned into big hives all over my body. I didn’t have that circle rash or any other Lyme symptoms because the hives were so painful breaking out (I. E. Felt like someone had pliers pulling my tissues out ) and the itching was terrible…this pain and itching took all my attention. After going to doctors, finally diagnosed by Immunologist/Allergist with Chronic Autoimmune Urticaria. Lasted four years and subsided, came in a mighty way in August 2025 to now only a few hives at night that are tolerable. I have low immunoglobulins. The Lyme test/ Alpha Gal tests had been negative
Around 2018, I started having this “sitting on rocks” (I.e. inflamed muscles) and nerves pinching my pudendal nerve. Then months later, started having mucus and small amount of feces ant times when I urinated. Over about four years went to about 15 doctors. Rheumatologists who said no ANA, ssa, ssb autoantibodies. Went to Women’s Pelvic Center and had an allograft injection where they shoot amniotic fluid from screen pregnant lady and Botox into surrounding tight muscles. Had another test that showed my sphincter muscle might be torn and a scheduled surgery was cancelled so to Covid, but after five months, the mucus disappeared and infrequently did I have the feces problem. I asked Dr. Barry Jarnagin why this was happening…if a hip issue could be causing these issues and he said yes.
Trying to be succinct…but from 2018-2022, went to six orthopedic doctors in Nashville. Many MRIs, CT scan, bone scan with and without contrast. I do have a badly torn labrum, some gluteus medius atrophy, a cyst on outside of joint…but none of these doctors recommended anything but shots and PT. Through own research, learned that these six inside short muscles under the flutes that attach to pubic bone/sacrum and cross under the major glutes are the ones getting inflamed tight/ hard and pinching nerves like the piriformis and obturator internus. This “Deep Gluteal Space” which is only 15 years or so old and most orthopedic surgeons are not trained with problems under the glutes…most are just hip joint specialists and only two in Nashville can operate on a torn gluteus medius.
However…these inflamed tight muscles started spreading to up the back, neck, both sides of buttocks and I know my other hip has issues now. My shoulder surgeries did not turn out well…the last one on blockages in the Axillary nerve has resulted in some lost muscles in the back of my armpit and the trapezius muscles and other muscles would always be tight. In early 2020, got a root canal in their upper molar and the dentist shot was the most painful that shot up into my eye. About three months later I noticed seeing streaking light in peripheral vision at times and more floaters. Saw ophthalmologist and no eye problems. Thought I might have sternocleidomastoid syndrome since neck muscles in back, side and front of neck get real tight at times along with tendons. I had fallen in bathroom at age 52 and busted open my head where I had eight stictches in my head that is sunken in a bit. I have pain in that trigeminal nerve area that comes and goes. I noticed about three years ago that I started drooling out of the left corner of my mouth. So I thought all this might be the result of either a bad shoulder surgery where some muscles are gone, or damage to the trigeminal nerve through that root canal.
I had MRI of back at age 65 again about the tight muscles going up my back and then a few years ago noticed my rib cage gets tight with nerve pain as well. I had an MRI of brain about three or so years ago by PCP because I thought I might have developed MS. Leg muscles started getting tight around 2020. But in last two years especially, my bones start to hurt. Have knee joint issues but haven’t noticed any swelling…started getting shots in knees about two years ago.
Along this journey, especially as the muscle tightness in other hip and along the back, I started maybe the tick bite had something to do with it after all. But I did the Igenex test and it came back negative for the Lyme bacteria. I have always had anxiety coming from an alcoholic father background who was a rager and demeaning, but had out that in the past and I had earned three college degrees, a teacher and coach, etc. But around 2021, starting having bad anxiety along with depression (…but being on a medical journey like I have been can be depressing), but this anxiety was worse and different like I felt I was in the “twilight zone” in a way with some obsessive thinking and bad things way in the past bothering me.
My body at times, feels like a stiff rock. I went to a neurologist a few years ago about four times but all she does is do the Parkinson’s test, says the pain around my ear and left side of head and extending over the trigeminal path at times is atypical migraines and I have chronic fatigue syndrome…just gave me Gabapentin and muscle relaxers to use as needed.
Over last two years, the bone pain has worsened…a swollen collar bone joint that sticks out, I’ve developed two oseotytes in the roof of my mouth according to the ENT, my neck pops all the time and is stiff a lot of the time, shoulder joints hurt. However, my right pelvis is twisted in 15 + degree and rib cage turned in some too…I definitely have musco- skeletal issues that is going to mean that I’m going to have to travel to find a hip/pelvic specialist that knows about the muscles, nerves and fascia under the glutes. “Deep Gluteal Space.” My sacrum is always out of line too when I go to chiropractor every week who tries to beat my pelvis and back back into proper alignment. Last two years especially, it hurt real bad afterwards for a day or two and doesn’t last but a few days. It doesn’t address or help the pain as much as it use to do. The nerves coming from out or under the sacrum are active all the time…know some are being trapped.
One important other symptom I noticed greatly was around the beginning of 2022 when my nerves inside everywhere seem to pulsate or tingle all the time even when I am not nervous.
But with all this bone pain and tight muscles everywhere, I accidentally came across a few months ago some videos of patients who had the Armin test that claims to be able to identify the BB Lyme bacteria. I paid about $700 for the test that said “results of the Elispot tests indicate no cellular activities against Borrelia Burgdroferi activities” which I took as a negative…but also said I had extremely low NK 57 Killer cells that was indicative of Lyme, autoimmune disease or Sjorgen’s Syndrome. I had earlier thought I could have SS since my mother had it with dry eyes and dry mouth, but three different rheumatologists said no after a lot of blood work…no ANA, ssa, ssb. It was the first one who found my low immunoglobulins that were so low that he wanted to put me on hydroxyqluoriquine to just prevent infection of any type. I stated going to Immunologist/Allergist Jennifer Ker for testing every six months but my cousin, who is a pediatric Rheumatologist at Vanderbilt advised against it until absolutely necessary since it affects the eyes.
After reading that NK 57 Killer cells use to be some kind of an indicator for Lyme and asking Dr. AI on google if infectious disease doctors (hadn’t been to one recently) at Cleveland Clinic or Mayo were Lyme literate and the best to see and the answer was to paraphrase…be best to see a ID doctor who had experience with Lyme. The one I researched that was near my home in Glasgow, Ky. was Dr. Lisa Laya (Infectious Disease doctor with experience in Lyme.) She did not have good ratings, but most were about wait time or rudeness. Before scheduling with Cleveland Clinic for a consultation, I decided to see her.
I did have to wait a long time…an hour and 20 minutes which is trivial in the long run, but she was nice, not rude. I had sent in a summary a little more than this long text, so when Inremobed my mask, she immediately said I Bell’s Palsy and Lyme. I tried to mention the possible damage to trigeminal nerve from root canal or the right muscles in sides of after the bad shoulder surgeries, and she said different nerve and cranial 7 nerve affected. I told her how the hip tears/ problems with hips and twisted pelvis could affect the muscles up the back and neck, but she kept saying Inhad Lyme. I told her about the negative Igenex and Armin test and she said she did her own tests. They drew seven vials of blood.
Yesterday, her office called and said I had a positive band…use to have Epstein Barr but not now and some other virus . She wants me to take 30 days of doxycycline and then come back to see her (…a two day hour drive one way. ) I am apprehensive about doing this because of my low immune system and the fact that the iGenex test was false, the Armin test showed no BB cellular Lyme activity, but it did suggest Kyme as a possibility because to the very low NK57 cell count (i.e. 7 ul while normal range is 100-360 according to their gauge. ) I also tested negative twice on the CDC tests I did in the first two years. Another concern is that my early symptoms don’t match what I see on line about the normal symptoms of Lyme. Yes…I was wiped out when the Hives hit hard after the tick bite eight days after I picked it off. But it took a couple of years, before I started really noticing any muscular/joint /neurological issues…but Inhave to admit that those big handsize hives t with the big dusky painful white centers and the itchiness took all my attention. I would also feel much more comfortable if more bands associated with Lyme had been indicated. Just don’t know what to do. What is your recommendation? Should Ingonon with the doxycycline or get a second opinion from another infectious disease doctor. Why didn’t Inhave the typical symptoms Inread about on Lyme that happens in a few months if this is truly Lyme? Thank you so much for your patience. (Apologize for this email.being so long.) Joanna
Your story shows the complexity of interpreting tests and clinical finding.