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Friday, January 29, 2010

So many more cases

I'm not sure if the word is finally getting out or what is going on but in 1 week I had at least 5 cases emailed to me and then today I found a news station that had a story on Leimerre's yesterday.
http://www.9news.com/seenon9news/article.aspx?storyid=131693&catid=509

There have been 2 cases here in St. Louis in the last few months.

Thank you to everyone that shares their story with us and helps us to continue in this battle!
I'm now a stay at home mom which I am very excited about for 2 great reasons!!!
One I get to stay at home and be the full time care giver to my 4 children (well 4 when the newest addition arrives hopefully next week) and two I get to spend more time in this battle and getting the word out about this disease.
I have pamphlets printed up all I have to do is start mailing them to those that have requested them. I would like to have another mailing go out in March for ER doctors. These seem to be the next set of Dr.s that tell the sick "It's viral go home and rest".
Thank you again to everyone!
Love,
Tammy

9 comments:

Anonymous said...

Hi
Im so sorry to hear of your brothers battle.My husband was admitted on the 23rd dec and was moved to another hospital,after 1 week we were told they thought he had lymphoma i already lost my cousin 1t 36 to cancer so it was terrible to be told this again.after seeing a vascular surgeon due to the huge lump on his neck they diagnosed him with lemierres.While he was in hospital i read everything i possibly could and it was so good to find out about this terrible disease.My husband is now out of hospital and just waiting for another mri but hopeully all ok.helen.masheder@tarsc.net

irene said...

Hi.
I was admitted in 2003 to Mt. Sinai in Toronto. At first I self-diagnosed strepp, stayed home a couple of days after my doctor put me on penicillin. Didn't get better, got worse.. the whole left half of my head swelled up, with tumors all through the back of my head. Two days later, I couldn't walk (my body decided to have an allergic reaction to my pen.), my knees swelled up, I had rhumatoid arthritis.
They changed the medication, but it was a tought ten days, with lots of team diagnostics.
The body's a weird and complex thing.
Thanks for the site.

Lior Zohar said...

hello tammy
first of all i am so sorry to hear about your little brother.
i'm writing you from Israel,and i understand now how lucky we were, because my 5 yers old youngest son Ori was also diagnosed with lemierres at the end of december.
our good fortune was that day after his fever climbed to 39 and a family doctor diagnosed his illness as a mumps,his fever rased to almost 41 than we rushed to the hospital and we were lucky to find there an exellent doctors that in few hours diagnosed it as lemierres. we spent two weeks at the hospital and my son got antibiotic treatment straight to the vein also with a treatment that cause a dilution of his blood .we continued the treatment at home for another 3 weeks, and thank god today he is healthy.
the doctor that treated us told us a little about the syndrom and told us that doctors don't not know to diagnose it. and that it is very rare. he only heared of cases in the u.s.a but not in Israel.
i wish your family all the health in the world and hope that you will be strong to to contend with your big lost.
sincerely yours
LIOR ZOHAR
ISRAEL

Fred said...

In 1995 I had Lemeirres . I was treated for Mono for two weeks. I got worse and demanded to be sent to Louisville to a special throat Dr. By then it was worse and the lump in my neck was larger. They sent me to hospital for the operation one day later. By then the lump was the size of a grapefruit. The hospital latersaid I was tahe sickest person they had ever admitted that didn't comein on a gurney. I was in intensive care for weeks and finally they got an infectiousdisease dr. to diagnose it. He startyed the regime to treat aboth aerobic and anerobic bacteria and I started top recover. It took months to fully recover. I have since had complications of the Carotid artery closing and causing several small strokes and had to have it operated on. they said scar tissue from Lemierres caused it. to stop up. It has been 15 years now and my life is great I am 62 years old now and getting Married in June for the second time. My wife died 11 years past. I hope to have many good years left. I almost died from this disease mainly because the Doctors did not know what I had and did not know how to treat it until almost too late. I hope things are getting better in this regard.

Kallie T. said...

Hi.
Just wanted to thank you for blogging about this! It's people like you that spread awareness and love that help others:) Reading your page and seeing all your photos of Justin made me cry so hard. I'm so sorry for your loss. My best friend's 16 yr old sister was diagnosed with Lemierre's syndrome about 3 months ago. She got sick with a regular sore throat and fever and those sorts of things. At first they sent her home and said it was just a sore throat, she went back and they told her it had to be strep, after numerous visits she finaly got really sick so they admitted her to our local hospital. From there the doctors still had no idea what to do with her so luckily she was air-lifted to the Denver Children's Hospital. They diagnosed her with Lemmiere's and she spent two weeks there. She is now home and doing great. She is off meds and happy. Thankfully somebody knew what this was before it was too late. we need more awareness! Thank you so much for sharing your story:) I believe It's because of you that people and even doctors are becoming more aware of this horrible illness.

Anonymous said...

Tammy, I practice Emergency Medicine and have seen three cases of Lemierre's in my 20-year career. It is indeed very rare.

Today, I came to work and found a heart felt thank you card from a recent 16 year old that I had picked up Lemierre's in and as he put it, "Saved his life."

I appreciate your desire to spread the word among my Emergency Medicine colleagues. We are specialists in Emergency Medicine, and Lemeirre's is truly a life threatening disease. But if you don't think about it, you will miss it. And as you have personally experienced, the consequences are deadly.

Keep spreading the word!

Anonymous said...

Thank you for this blog. It is four years this month that I had Lemierre's Syndrome. I was 36 then and had three children. My husband was told I had 48 hours to live. I get very emotional thinking how close I came to death. Today I am healthy and we have added to our family through adoption (I decided then I never wanted to be in a hospital again!). I'm so sorry you lost your brother. You are doing a good thing.
Mia

Anonymous said...

OMG!!! I can't believe I haven't found this site sooner, I had Lemeirres Disease 7 years ago, thankfully the only side affects I seem to have is facial paralysis and blindness on one side of my face, Looking at those photos reminds me of what I was like in hospital. Thankfully my doctor was awesome and put me on the right track before they could diagnose it. Its a whole heap better to be alive with a bit odd, than to be dead, I'm sooooo sorry for all of your loss. If I had started something back in 2003 when I had it, it may have helped.

My email is gruvychick50@hotmail.com if anyone wants to chat with me. Please put lemeirres in the subject title so I know its not spam

Anonymous said...

Hi,
I just recently survived this terrifying syndrome, i am 19 years old and a sophomore in the nursing program. i was addmitted to the ER christmas eve and they just thought it was tonsillitis, 4 days later since i was so weak and dehydrated, i was addmitted again and was in the hospital for a week and a half and it took them a week to even figure out what was wrong. i am very thankful for my uncle who is a renal doctor who checked up on me frequently since my kidneys were failing and i am super thankful for my parents who stayed with me every night giving me strength and courage to stay strong and positive. This was a tough time for me and i am thankful to make it. bper2423@my.msmc.edu


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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.