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Monday, May 19, 2008

Awareness

Well the first post to this site is going to just be about Lemierre's Syndrome and the definition.



Lemierre's syndrome (or Lemierre's disease) is a disease usually caused by the bacterium Fusobacterium necrophorum, and occasionally by other members of the genus Fusobacterium (F. nucleatum, F. mortiferum and F. varium etc.) and usually affects young, healthy adults. Lemierre syndrome develops most often after a strep sore throat has created a peritonsillar abscess, a crater filled with pus and bacteria near the tonsils. Deep in the abscess, anaerobic bacteria (microbes that do not require oxygen) like Fusobacterium necrophorum can flourish. The bacteria penetrate from the abscess into the neighboring jugular vein in the neck and there they cause an infected clot (thrombosis) to form, from which bacteria are seeded throughout the body by the bloodstream (bacteremia). Pieces of the infected clot break off and travel to the lungs as emboli blocking branches of the pulmonary artery bringing the heart's blood to the lungs. This causes shortness of breath, chest pain and severe pneumonia. Fusobacteria are normal inhabitants of the oropharyngeal flora. This is a very rare disease with only approximately 160 cases in the last 100 years.

Symptoms
The first symptoms are a sore throat, extreme lethargy, fever, and general body weakness, but after a week or two these symptoms are followed by a spiked fever, rigors, swollen cervical lymph nodes and septicemia (infection of the blood) which can cause complications in other parts of the body including abscesses of lung, brain, and other organs, kidney failure and also effects on liver and joints if untreated.

Treatment
Lemierre's syndrome is easily treated with antibiotics, but because sore throats are most commonly caused by viruses, for which antibiotic treatment is unnecessary, such treatment is not usual in the first phase of the disease. Lemierre's disease proves that, rarely, antibiotics are sometimes needed for 'sore throats'. If a persistent sore throat, with the symptoms are found, physicians are cautioned to screen for Lemierre's syndrome. Fusobacterium necrophorum is generally highly susceptible to Beta-lactam antibiotics, metronidazole, clindamycin and third generation cephalosporins while the other fusobacteria have varying degrees of resistance to beta-lactams and clindamycin. The disease can often be un-treatable, especially if other negative factors occur,i.e. various diseases occurring at the same time, such as; meningitis, pneumonia etc.

Incidence
Lemierre's syndrome is currently a very rare disease, but was quite common in the early 20th century before the discovery of penicillin. The reduced use of routine antibiotics for sore throats by doctors may have increased the risk of this disease, with 19 cases in 1997 and 34 cases in 1999 reported in the UK. The incidence rate is currently 0.8 cases per million in the general population, leading it to be termed the "forgotten disease". The mortality rate was 90% prior to antibiotic therapy, but is now generally quoted as 15% with proper medical treatment, although one series of cases reported mortality as low as 6.4%.[

9 comments:

Terri said...

This is awesome. I am going to pass this on to everyone I know. We have told everyone that will listen about Justin and Lemierre's syndrome.

angelsfan4life02 said...

I've never heard of Lemierre's Syndrome until just a few days ago, and i wish they would have found an absolute cure for it years ago, also sorry to hear about Justin, i have heard alot about him... and i will send this link to everyone that i can

Laura said...

This is great that awareness is being raised. I will continue to talk to people about Justin and Lemierre's syndrome to try to help educate more people about this syndrome.

Laura

J. Carroll said...

I've been wearing my blue bracelet since Thursday and when people ask about the meaning, I don't think they realize just what they are asking. I give them the whole story... getting the message across and having faith that they will tell at least 2 people, and those 2 will tell 2 more, and so on and so on. What a great site! I'm going to send this website to everyone I know.

amy said...

I am so sorry for your family's loss. Your story has really touched me (I read about it in the West Magazine). I will keep you all in my prayers. I also am spreading the awareness of this disease on to my family/friends. Life is so precious..it took us 3 years to have our son..he was born on the same day (3/6/08) Justin's niece was born. Thank you for spreading the word- know that you will save others.

Peg Richards said...

My son had this same disease at the same time as Justin and luckily he was diagnosed in time. He was on a class trip to Germany and got sick with a sore throat that continued to get worse each day. On the day he was supposed to return, the airline wouldn't let him fly home because he was so obviously sick. They allowed him on the plane the next day which was April 1st. He made it to Cincinnati and was rushed to the hospital with severe side pains. He was transported to a community hospital in Florence Kentucky. They did chest x-rays and extensive blood work. After a day in this hospital they did another chest xray and realized that he had a substantial amount of fluid that was going to need drained. The pediatrician recommended that we transport him to Children's Hospital in Cincinnati. It was her a few days later that they made the diagnosis. But the initial bloodwork taken at the first hospital is where the bacteria grew. We were very lucky. He was placed on six weeks of IV and oral antibiotics and has made almost a full recovery. He continues to get sore throats due to enlarged tonsils caused by mono. He needs to be on steroids until they remove his tonsils on July 7th. So three months into this disease and we are still dealing with the aftermath, but we know we are lucky. The more I read the more I realize just how lucky we are. I also continue to ask doctors whether they have heard of LS and the answers scare me. My ENT just yesterday really didn't know of it. I had to explain to him what it was. We are so sorry for your loss of such a beautiful boy. May he live on in your hearts and minds. I hope your crusade helps to make more Doctors aware of this horrible disease.

Seebs said...

I would like to introduce myself...My name is Caitlin. I am 21 years old. As a random and boring night, I thought I would just play around on google. From the deepest depths of my heart I would like to tell you how very sorry I am for your loss. As a surviver of this horrible freak disease, it breaks my heart to hear of someone leaving us due to this sickness...if there is anything that I can do to help your family, please let me know (even if it is as simple as answering a few questions)...you can find me on Myspace as Caitlin Sebaly. I hope to hear from you soon....

love,
caitlin

angelnpink@gmail.com said...

Ive never heard of this Lemierres Syndrome before. we are currently going to an ent dr over my daughter constantly keeping strep throat or throat infection 8 times in 12 months. She also has acid reflux. She is 10 yrs old and weighs only 56lbs.. Im so hoping that something can be done. We have fought and argued with ped and dr to get her to ent dr. I will definitely print this off and take it with me when we go. Will keep you in our prayers.

Amy Robertshaw said...

Lemierre's Survivor

Justin's Family,

I had Lemierre's Syndrome 7 years ago... I was admitted to a local hospital in Norwalk, CT after being sick for 8 days and seeing numerous doctors in my plan. I was sent home with the exact diagnosis of your son on the 7th day with a "Z-PACK". Upon waking up on Saturday morning, my Mother knew it was time to go to the hospital...Later on that night, my liver enzymes were depleting themselves and my blood pressure dropped drastically to about 60/40. I was immediately rushed to Yale New Haven Hospital due to the lack of supplies (dopamine) @ Norwalk. I was admitted to YNHH August 3rd 2001 and thankfully released on September 4th 2001. I am now 23 yrs old and am ready to help you and yours.

I want to express to you my deepest condolences to your family for your loss. I can understand the pain, frustration, anxiety, confusion etc. of everyone involved, including Justin himself. I can further explain my condition during that time and before hand when I was previously a VERY VERY healthy 15yr old....

What I can do for your family?? I've really wanted to get involved to spread awareness, but couldn't find a single person (including doctors) other than my family and relatives who knew the severity of this disease.


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Justin's news article in the West Magazine

This was taken from http://www.westnewsmagazine.com/news02.html

Rockwood student dies rapidly from little-known disease
By Diane Plattner

In April, Eureka High School student Justin Rodgers began to complain of a severe sore throat and was dead approximately one month later from an unfamiliar disease. Now, his mother hopes to spread awareness about the deadly disease.
Justin died in the early morning hours of May 12, the day after Mother’s Day, after losing a battle with Lemierre’s Syndrome, a serious bacteria that is not well-known and even doctors are prone to misdiagnose the disease. Unfortunately, Rodgers’ doctor was among that group after initially diagnosing him with strep throat on April 11, said Sheryl Rodgers, Justin’s mother.
“Justin had said, ‘Mom, this is the worst sore throat I’ve ever had in my life,’” Rodgers said.
She said that Justin’s doctor took no throat culture and gave her son medicine for strep throat. She said her son’s condition worsened over the next few days during which he had increased high fever, chest pain and a lump in his neck. On April 14, Rodgers took her son to St. Anthony’s Hospital, which transported him overnight to Cardinal Glennon Children’s Hospital where he underwent extensive testing, including X-rays and blood work, Rodgers said.
Rodgers said that hospital officials diagnosed him with Lemierre’s Syndrome, a bacteria that can surface after mouth trauma. Last July, Justin was in a car accident that resulted in mouth injuries that required him to get major dental work, including a recent new tooth. In addition, Justin had suffered a broken nose just before the onset of his sore throat, his mother said.
“I wonder if all this woke up the bacteria, which was already living in the body,” Rodgers said.
The last time Rodgers saw him fully awake was a few days later, when hospital officials decided to place her son on a respirator and sedate him with drugs.
“He was out of it but still with us then,” Rodgers said. “He would frown when the doctors worked on him. So he had some responses.”
However, Justin’s lungs kept collapsing, prompting hospital doctors by April 25 to place him on an ECMO machine to help rest his lungs and heart. Doctors at that point also put him into an induced coma, Rodgers said.
“At that point there was no response from Justin,” Rodgers said. “Still, I talked to him and rubbed his sore spots to let him know we were there.”
By Mother’s Day, Justin was leaking too much blood, prompting doctors to decide to remove him from the ECMO, a move they said was risky if his lungs were not healed enough.
“Once they took him off the ECMO, Justin’s face was getting gray,” Rodgers said. “He was holding his own for a few hours, but then he starting going downhill.”
Justin died early the next morning following Mother’s Day with his immediate family, including three older siblings, by his side, Rodgers said.
“He was our baby,” Rodgers said. “I think the hospital tried to keep him going so he did not die on Mother’s Day.”
The tragedy is not the first for the Rodgers family. They also lost a 4-year-old child in a horseback riding accident and had a stillborn child many years ago, Rodgers said.
“I thought God could not possibly do this to us again,” Rodgers said. “I asked why again, why us. But there is no answer. Here we are walking on egg shells again.”
Rodgers said she was at least thankful that Justin’s funeral was so big that people were standing outside, a huge tribute to his life. She also hopes to honor his life with a campaign to help spread awareness about Lemierre’s Syndrome, which she said often hits people between the ages of 14 and 25. It is not spread by kissing but instead lives in the body, she said. Her goal is to make people, including doctors, more aware of its symptoms so they are not mistaken for strep throat.
“I do not want Justin to have died in vain,” Rodgers said. “This is one bad bacteria. It is very serious. People should not treat it lightly.”
To learn more about Lemierre’s Syndrome, visit the Rodgers’ family Web site at lemierresyndromejrodgers.blogspot.com.