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Monday, June 2, 2008

More cases and stories

I have had a few more cases and stories of Lemierre's Syndrome emailed to me. Which makes me believe more and more how UNrare this disease really is. I think people say it is rare b/c there is not enough research put into it to figure out why it occurs so much now. That's just my thoughts. So far it seems that every case I've heard of this nasty disease it attacks a different organ, in my brother's case it was his lungs. Which makes me wonder what makes it attack a different organ in each case and what makes the symptoms so different. Some cases I've heard of a lump in the neck the size of a lemon and from what my mom says Justin had a small lump in his neck maybe the size of a marble. Online it reads that some patients report having symptoms for months and others only a week or less. I believe my brother was sick for a week or maybe a little less. I know my mom and dad have been on the phone with Doctors from all over trying to figure out just how Justin could have gotten this. He had some recent serious dental work done and he also had a small fracture to his nose right before he got sick. Whoever decides to really get in a study this illness will have to do a lot of digging in the lives of those who have had it in order to begin to understand what happens and why.
I made up some business cards with this website and other info of Lemierre's to hand out to random people or to leave @ Doctor & Dental offices. If anyone else would like to do so you can get 250 cards printed online @ vistaprint.com for under $6. Mine should be here any day now. I also have ideas of selling ribbons, T-shirts and car decals with Lemierre's info on them. I would of course sell them at cost b/c this is for awareness purposes only right now. I currently do not know of any organization researching this disease. Let me know your thoughts on this...

6 comments:

Anonymous said...

I have a comment on your new poll on how to get the word out to all doctors.
I think the best way to get the word out to all doctors is to make an example of those doctors that drop the ball and don't do their job. They are taking lives and should pay dearly for there mistakes.

Anonymous said...

My niece is recovering from Lemierre's Syndrome at the University of Michigan Hospital. It was the quick action of the hospital that saved her life. Her story was much of the same as Justin's except she will live on and not forget. I will say a prayer for Justin. The Doctors did a great job and took all the necessary steps to save her although they did not fully know what they were dealing with. It is a very dangerous disease.

Cheyenne said...

My daughter is recovering from Lemierre's syndrome just recently released from TMC in Tucson Arizona. Her story is very similar to Justin's. She was admitted to TMC on April 22nd and it took the doctors 3 days to diagnoise her with LS. By the 3rd day she was placed in and induced coman and placed on a ventilator, where she would stay for appox 1 month.

Her lungs collapsed a total of 4 times and she had 4 chest tubes sticking out of her. Because of the chest tubes she had a lot of trapped air just under her skin, she blew up to more than 3 times her normal size. They called it subcutaneous emphysema and said it looked worse than it was.

On May 15th I was told that her latest CT scan showed more damage than they had realized. I was told she would be a candidate for a lung transplant and would probably never be without oxygen for the rest of her life.

After reacting very emotionally to that news. I regrouped and stood on faith. I read bible scriptures to her and flat out told the doctors that I was standing on Isaiah 53, I Peter 2:24-25 and Hebrews 11:1. The doctors told my family they were concerned that I was in denial.

I absolutely refused to allow any doubt to affect my faith. The bible says we need only the faith of a mustard seed which isn't a lot but we need it w/o any doubt.

I banned all naysayers from her room.

On Monday May 19th for some reason, I was never told why, the for the second time the doctors tried to wean her off the ventilator. I was called very early in the morning and asked to come down to the hospital (they wouldn't let me stay overnight in the ICU) by the time I got there she was sitting up in bed just fine.

She was released from TMC on May 29to an inpatient rehabilitation center where she would stay for another 2 weeks.

She is now home and continuing PT on an outpatient basis.

Her recovery has been very rapid to the point that the doctors are calling it miraculous. They even referred to her as the miracle girl. She just had another check up and her lungs are sounding very clear. All the doctors have told her that to look at her now, other than the weight loss from being in a hospital so long, they would't know how critical she was. She truly is a miracle.

I am so sorry for your loss and would like to do whatever I can to help spread the word about L.S. so that other young people can be diagnoised early and correctly.

I would be interested to know what the differences were between the two cases where the outcome was so different. Was it the types of drugs or treatment that made a difference in one case and not the other?

On the surface it seems their cases were very similar but I am not a doctor. The only thing different is that Rose was not put on an ECMO machine. My email address is cjjazzcat@gmail.com

bgriesemer said...

The world really is a small place... I graduated from Eureka High School in 2005 and currently live in Colorado. I had LS last year and was in the hospital for about 3 weeks. I have made a full recovery, and have my mother to thank mostly, she was bedside throughout the whole thing. I am sorry for your loss and will keep you in my prayers.

Anonymous said...

My husband had this disease in his twenties and almost died from it. He was in the hospital for 3 weeks and his mother helped nurse him back to health.
His mother told me the near death experience of this changed him, he doesnt handle stress as well, is really irritible among other things.
We are trying to concieve now and are having a hard time. They tested his sperm and there was none there, does anyone know if this disease can cause infertility?

I am truly sorry for your loss, thank you for bringing awareness to the world about this horrible disease.

SDelly said...

This is so bizzare. I thought I was the only one out there.

I was doing a random search on the disease just now and found Tucson, AZ and Lemierre's Syndrome in the same title. (I live in Tucson, AZ as well)

I was diagnosed with it Sept of 2005. It initially started as mononucleosis and got progressively worse (I didn't know what it was at the time, all I knew is that I felt terrible). I was spiking fevers of 104 and dropping to temperatures of 96 hourly, I couldn't keep anything down and I was so tired I was delirious.

Then I woke up one night and my left side was in severe pain and I felt as if I could hardly breathe. I woke my parents up and told them how I felt and I was rushed to the hospital. Later on I found out that I was sceptic (My major organs had begun to shut down) and had I waited even 12 hours longer that I would have been dead.

I had specialists coming to examine me left and right. I even had a specialist flown from another state to look at me because they though I might have caught something from an animal (because I'm a vet tech).

I spent 17 days in the hospital, a good portion of it in ICU. My Infectious Disease doctor finally figured it out (Day 10 of being in the hospital & 2 thoracocyntesis' later). - I had developed a blood clot in my jugular vein which traveled into my left lung, giving me pneumonia. I had to have a chest tube placed (not fun).

The worst part after it all was being on a blood thinner named Coumadin (Warfarin) for the next 9 months. I had severe memory loss from it. I also had to have a PICC line (Central catheter) and had to give myself IV fluids for 6 weeks once I was released.
To think that this "forgotten disease" is now re-emerging is not only shocking but extremely frightening. I really do hope doctors pay attention and keep it on the list of possibilities.

There's also a show on TLC now called "Mystery Diagnosis" and it's in one of the episodes. I haven't seen the particular episode, but to know that it's out there and being made aware of this severe disease is a little relieving.

I am so sorry for your loss.

If you need any more info my name is Stefanie ; sdelrincon@gmail.com


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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.