Justin's battle with Lemierre's Syndrome: July 2008

Thursday, July 31, 2008

CDC

As I said yesterday I sent an email to the CDC (Centers for Disease Control) and I received a reply back today from them here is what they said,
"Thank you for your submission CDC-INFO. Your comments on Lemierre's Syndrome have been forwarded to the CDC’s Division of Foodborne, Bacterial and Mycotic Diseases for their information. They will contact you directly if they have any additional questions."
So hopefully we will hear from them again soon. Here is the email I sent to them yesterday,
" It was brought to my attention the # of cases is rising dramatically for Lemierre's Syndrome. Anyhow, my 17 year old brother just passed away 3 months ago from that same disease. 2 months prior there was a 14 year old girl that passed away at the same hospital where my brother was. In the last 2 months I have received a total of 23 stories emailed to me of Lemierre's syndrome. It is the most horrifying disease I have ever seen. It literally attacks and kills the organs in the body. In my brother’s case it attacked his Lungs, Kidneys and they also found signs of it in his brain. Dr. Robert Centor, rcentor@gmail.com. He also has a website www.medrants.com. He has been studying Lemierre’s and sore throats for a long time now. He may be able to help in some way. I have been working really hard to get the word out about Lemierre’s. I asked a dozen Dr’s here in St. Louis and only a few had every heard of it. We are also getting ready to do a news interview to bring more awareness here in St. Louis. I conducted a study on my website and 95% of people that had visited my site and NEVER heard of it. Everyone says it’s a rare disease but you would not believe all the stories that have been emailed to me just in the past 3 months. All the stories I have received took place in the last 3 years. I do believe it is still rare but I also believe it is making a come back and we have to figure out how to stop it or recognize it faster. My brother fought it for 1 month and he lost his battle May 12, 2008 the day after Mother’s day and my 1 year wedding anniversary. I will not give up until someone will conduct another research on this disease and find out why it is coming back and why some people live and some don’t. The last research that was done on this disease was in the 1980’s in Denmark and they said there have only been 120 cases in 100 years. Which is NO LONGER TRUE; I am now studying and figuring out the ins and outs of starting up a foundation or charity to help fund research for this disease. Please do not hesitate to contact me if you like. Thank you for your time, Tammy Valencia"
Hopefully I have caught some one's attention!!!!! Time will only tell!!!
Luv,
Tammy

Friday, July 25, 2008

Researches

I have been asked on numerous occasions if there is any research going into Lemierre's Syndrome or charity or research efforts someone can donate to? I don't know the answer to this question I haven't seen any researching efforts online. I know they did research this back in he 90s in Denmark I believe. If anyone reading this knows of something going on like that please email me or post a comment and let us know.

My mom emailed Kay Quinn to let her know we are ready to do an interview when they are, so it is in the works... I will keep you all updated.

Gordie sent me an email and let me know about his battle with Lemierre's, Thank you Gordie!!! And he said he is working with people in his area getting the word out and learning more about this disease.

Thank you to everyone that is helping us get the word out about this disease! My biggest wish is that someone at one of the University Hospitals in the US will do another study on this disease, there is so much that is unknown about this thing! I'm not sure if its unknown or just not talked about or taught to our Dr's ??? And there are so many people now that have had it or will get it. The last study done said only 120 people have had it in 100 years (that was in the 90) that is so out of date. 5 teenagers (that I have heard of) have had it in the St. Louis area alone in the last 3 years. Justin being one of them. I read online at WrongDiagnosis.com that in order for a disease to be considered rare it has to effect less then 200,000 people. so I guess this disease is still considered rare b/c of that. I found 2 women on that website that had this disease as well.
Well I will never give up on this fight on getting the word out and demanding more research. I post this website as much as I can! I even have it set up as my signature so it goes to everyone that receives an email from me. In California we stayed at Residence Inn and I placed this website as their home page when someone opened up the Internet n their 2 computers they had for customer use. I think we had over 120 hits each day on Sat and Sun when I did that. And I will keep doing little things like that until we learn more!
Thanks for listening and helping me.
luv,
Tammy

Saturday, July 12, 2008

2 months today

Well we lost Justin 2 months ago today to this horrible nasty disease. We still miss and think of you every day little brother! But all the effort we are doing to bring awareness to this thing is really working! This is the only thing that makes me feel better about this whole situation. Everyone gives us kudos for doing this to help save others but honestly I don't know what I would do if I didn't have this website to help me get through everyday. I still think about everything you went through in the hospital, you are the strongest person I know!! You are our Superman!

All I can say to everyone reading this is please don't ever stop talking about Justin, always let people know what took our son, brother, uncle, nephew, cousin, & friend away from us WAY to early.

I talk about him everyday and tell people every chance I get what took my little brother away from me.

Thank you to everyone!

Love, Tammy

Thursday, July 3, 2008

What is Lemierre's you ask ......

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.SymptomsThe 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.TreatmentLemierre'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.IncidenceLemierre'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%

Justin has some great friends!

I was thinking today as I was trying to figure out something to write and it dawned on me I haven't said much about Justin's friends!
Justin really does have some great friends. I wish I would have gotten to know you all while Justin was still here. They have treated us so good through all of this. The night Justin passed away they all did a candle light walk to our house chanting J-Rod & Justin's name! There were so many of them! It was amazing! And some even stopped by the house weeks later just to make sure my mom and dad were OK. Patrick and Stephanie were just there Monday! ;0) At Stephanie's Graduation party last week you all sat around us and told stories and just made us feel right at home! Thank you for everything you have done to make us feel better. I know you all are grieving for him too but the fact that you think about my mom and dad and making them feel better is just amazing! While Justin was in the hospital the boys would come over and cut the grass for my dad with out anyone asking them too! He was soooo lucky to have friends like you! Sometimes I get jealous because I know he is around you all more then me right now. Ha-ahaha! I'm trying to post the song's and the poems you all write for him. I'll have to switch them around and repost new ones and take down old after awhile.

Chrissy, Jamie and my family of 5 are headed to LA tomorrow to hang out with our Aunt Sandy and her family. So all of you that can go check in on mom and dad while we are gone please do... I'll try to post while in LA but my crazy kids might be running too crazy for me to do so.

Brent, thank you for sending me the contacts that you did!! I have emailed them both and we'll see what happens. He sent me contact for the TV show Mystery ER and a NY Magazine writer too. Hopefully something comes of it!
Just in case any of you are wondering I put ZZ Top & Lynard Synard in the music on this page b/c my dad said it was Justin and his favorite. I picked the song about sunglasses b/c Justin loved his white sunglasses! ha-ahaha
I am going to re post the symptoms and the definition of Lemierre's Syndrome so that it is not all the way at the bottom of the page. Everyone please have a great 4th of July and please be careful!!!
Love,
Tammy

Tuesday, July 1, 2008

I'm so happy it's working!

Our awareness efforts are really working! Thank you so much!! We are going to be doing an interview with News Channel 5 as soon as Chrissy, Jamie and I get back from Cali. I have had so many other Lemierre stories emailed to me. One person was from the same High School we all went to. Just wanted to send a big thank you to everyone again for helping us and all your kind words! They mean the world to us! I am having a hard time commenting back to the people that leave comments so if anyone that reads this knows how I can comment back to people that leave us a comment please let me know. You can email me @ Sunflwz2@yahoo.com
Thanks again!
Tammy

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.