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Tuesday, January 25, 2011

Mystery Diagnosis Reminder

Tomorrow is the day!!! I can't wait to see Michael and his family on TV!

I am so happy they chose them to do the show about. Michael has been through so much! He is such a strong young man and I hope one day I get the opportunity to meet him and his wonderful family!

Lemierre's will be featured on Mystery Diagnosis Wed. evening 8/7c. I hope everyone gets a chance to watch!!! If not you can always visit their site

www.health.discovery.com/tv/mistery-diagnosis/

We will be having our watching party here at our house. As Justin's niece Kristiana says, "Mommy, you got my popcorns?" ;0)



I have had so many families reach out to us and tell us their story and how grateful they are to our site and all we do. THANK YOU!!! I love hearing that we are making a difference! I have started researching CME departments. They will be my next contact. From what I know they are the ones that hold educational classes and lectures and keep the Dr's up to date on all information!

So you better believe they need a letter form us!

love to all,

Tammy

3 comments:

cassandra said...

hello my name is cassandra. I live in long island new york. Iam 23 yrs old and this is my first time opening up about my experiance to some one else that exprianced it.I was 14 years old, when the dr's found out that I had lemierres. I went through flu like sympthoms,my skin was turning into yellow patches, then the time I got to the hospital they took some test but still could not find out what was wrong with me. I then, that night in the hospital fell into a coma. the total I spent in the hospital was about 2 months. They told my mother, friends, and rest of my family there may be side effects. but my mother, dr's and myself did not see any signs of them. Until I turned 18 then I had to go into a pysc ward for about a month because I kept seeing my dreams from my coma. Basicaly it all came back to me but while I was awake and waLKING around. they did not properorly dignoise me so that was another journey until the right dr told me i have p.t.s.d ,(flash backs from my experiance with the lemierre's. night terrors axity nerve damage, cause the bacteria was going to my head so my head filled up with water.I had a seziur disorder but because of lemierre's it worsend and i have full blowin epelepsy (gram mall and petite sezuris) thaNk you for allowing me to share half of my story with you. If you have any questions you can contact me at foxcassandra21@yahoo.com sincerly cassandra fox

flutiefan said...

i found out about Lemierre's by reading about an NFL quarterback who had it, Tory Smith. as i was reading through the symptoms, i realized i very well have had it back in approximately 1997 when i was in college. my question is, is there a way to post-diagnose? my doctors at the time were stumped. i had all the signs of spinal meningitis, but the test came back negative. high fever, throat abscess, unable to turn my head/neck, photosensitivity (aka photophobia), major lethargy, vomiting...you name it, i felt it. i was in the hospital for a week, getting every antibiotic known to man. i don't remember the bulk of my time (mostly just the last day). but i do remember the pain. one day, the meds just seemed to take effect, though, and i was finally released.

will i ever know if it was Lemierre's or is it just too late?

Sunflwz2 said...

I'm not 100% sure but I would say that if you really think you had it, and it sounds like you did, they might be able to scan your neck and see if there is any scar tissue int he jugular vein, or any pther signs of the disease. I know some people that recover from it the clot never really goes away it just shrinks.
Hope this helps


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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.