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Wednesday, February 24, 2010

Google Alerts

When my family and I first started this mission I set up a "Google Alert" for the word Lemierre's Syndrome. This simply means anytime that word is posted on the internet I would get an email and a link to the website it was posted to. At first I would get maybe 1 or 2 emails every few weeks. MOST of the time it was junk and some sort of Spam. However, in the past 3 months I have received at least 1 a day. And in the email have been 3 links of 3 different websites that have posted something about Lemierre's. In the past it was 1 or 2 links at the most per email. I believe the word is really starting to spread! I have read 3 news articles and seen 2 stories in the News in the past 2 months. I think people are starting to open their eyes and see that it could be more then just viral. I do believe Dr. Centor has had a lot to do with this!!! A few people have posted comments on here stating they found our site after hearing his lecture. My plan is in March to send out another batch of letters to ER doctors! I'll let you know how it goes!
Thank you to everyone that has shared their story with me!


Michelle Tetzlaff said...

Hi Tammy, my name is Michelle and my friend Andrea's daughter has been diagnosed with Lemierre's Syndrome this week. Justine Tjaden is 16 years old and in the 11th grade. She is a beautiful young woman, a big sister, a talented softball player and a scholar atudent. I am so sorry for the loss of your brother Justin, sometimes God is just not fair to us. Your blog has educated me on this horrible disease. I was hoping you could help my dear friend Andrea, by sharing some support with the battle of Lemierre's. Andrea has created a blog on Caring Bridge.

Thank you Tammy and God Bless You and Your Family!

Michelle Tetzlaff
Murrieta, CA

Katie Martin said...

Hey Tammy,
I think you're doing a great thing. Since Lemierre's is fairly uncommon, the disease can sneak up on you. I was diagnosed in August of 2008 at the age of 18 after being sick for almost 2 weeks. One night I went to bed feeling funny and the next morning I feverish and couldn't move off the couch. My pediatrician said I had an ear infection and after antibiotics did not seem to help, my mom took me to be tested for mono. By the time I finally made it to the ER, I could barely sit up. I had fevers of 103 and could not keep anything in my stomach. Since my electrolyte levels were so low, I was immediately admitted to the ER even in front of men complaining of chest pains. I was in the hospital for 3 weeks overall with 2 blood transfusions and one hospital transfer. Thank God my parents decided to move me to a Children's Hospital. Though I was technically an adult, the treatment that a general hospital gives a person my age is not as specialized as a children's hospital. I sincerely suggest this choice; it saved my life.
I was a prime example of the Lemierre's prognosis. I developed pneumonia and had surgery to drain my lungs, plus developed multiple blood clots in both sides of my neck, a large one in my jugular.
Honestly, it's hard to recall exactly what happened while I was in the hospital. My parents, older sister, and members of my church were by my side the entire time. A suggestion to those who are diagnosed is to have someone journal while you're in the hospital and once out continue to write down your recovery experience. That is one of my greatest regrets. I wish I wrote down details of my recovery such as ability to eat, walk, weight gain. While sick I lost 20 pounds, approximately 15% of my weight. I've finally, a year and a half later, regained that weight -- in a healthy manner. I still have problems with my lungs, difficulty and pain breathing.
Lemierre's was such a tragic experience, but it has made me a better person, more aware of the important things and people in my life. I realize my mortality and my obligations to my family and friends. It's still difficult to speak about the disease, but the more people are aware, the more lives we will save.
Thanks for what you're doing and God bless!
Katie Martin
Peachtree City, GA

Tracy said...

Just reading this has made me all teary, Yes get someone to journal it, I know it seems like the worst time to be writing, but to me its the only way I know what happened over 3 months of my life.

Prayer is a wonderful aid in fighting this disease,

Thanks again for making this so public, Its sooo awesome to see other people who have been through this ordeal. My parents probably would have loved the support back in 2003 when I was so sick and nearly dying, In New Zealand, we don't see many rare diseases, so my doctors had such a hard time fighting it. Thankfully I'm still here, and have shared my knowledge, and that of my doctors and anyone who wants to know everything about how I got sick and how it was treated, and how I continue to treat it.


The Davenport's said...

I found this website as I was searching about Lemierre's syndrome. My husband almost died from LS when he was 17 years old. After being sick he went to the hospital/doctor many times and was finally admitted through the ER with a fever of 107! He was a healthy, 17 year old boy and ended up being in a coma for 8 days. They could not figure out what was wrong with him, but eventually a young doctor who had once read about Lemierre's Syndrome said that's what he thought it was. My husband was one of the lucky ones who survived this horrible disease and I am so grateful for that young doctor (we named our first son after him). I did not know my husband while he was sick, but a couple weeks ago passed the 9 year mark and I am so thankful that he is here with me and we have a wonderful little family. He is healthy and strong and, aside from a few chest tube scars, you can't even tell he was ever sick. I think about this disease often and I am so happy that someone out there is doing such great work to get information out about it. Keep up the great work and I pray for all those families out there who have been affected by Lemierre's Syndrome!

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Justin's news article in the West Magazine

This was taken from

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