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Wednesday, December 24, 2008

My Christmas Present to my Baby Brother!

I have decided to write my brother a letter and post it here on his website as my Christmas present to him!!

Justin the time that you have been gone has been going by so fast! But I think I can speak for everyone when I say the pain in our hearts feels the same. I have no idea what happen or why you were taken from us. Lots of people keep telling me that this was your destiny, to save people from this disease! But I still don't get it. Nor will I ever until the day I come home and meet you in Heaven. There are about a million songs on the road that remind me of you and make me think of you. I have to admit I think about you just about 10 - 15 hours a day, now keep in mind I sleep for 8 hours. You have come to see me in my dreams 2 times so far. One of the times you were about 8 and you just sat by my side, didn't say much. It was almost like you were trying to tell me something but I wasn't listening to you. I cry so easily now! It use to take a lot for me to cry but anything makes me shed a tear! Cruz and Allen miss you soo much. They have no idea why this happened the way it did. They really just don't get it at all! You would be soo proud of Kristiana well I should say I know you are b/c I believe you are with us ever day! She started crawling yesterday! I love you so much. I know you love me too even though we didn't say it all the time nor show it. Every year for the past 5 yrs I have gotten you name for Christmas. And just about every time you either wanted a CD or a hoody! It is very hard for me to go into the stores that remind me of you. I went into PacSun in CA and I had to walk out I couldn't stand it! When you were in the hospital I bought you a Big Black hat from there and TJ had him sign it that night for you! Tony wore it the other day I really wish I could have given it to you! Every time I see a boy your age around me I just want to grab him and hug him!!! Sometimes I sit and listen to the way people talk to each other and the little stupid things people get mad about and I just want to tell them my story and how much I would LOVE to nit pick and argue with you right now but I can't! I just really wanted to write and tell you how much I love you and how much work we are doing down here to help save other families from going through this. Tomorrow morning will be different b/c for the past 17 yrs I got to watch you get almost double the presents I did! LOL I know there will be lots of tears tonight and tomorrow but I know you are here with me and I will NEVER forget you and always love you! I smile and talk to you all the time I hope you can see and hear me!
I love you with my great big heart Justin the bee!
Love you big sister!

Wednesday, December 17, 2008

Tuesday, December 2, 2008

T-SHIRTS !!!!

We have pretty much finalized our T shirt designs! If you would like to start order them please send an email to Sunflwz2@yahoo.com in the subject line just put T Shirts. Let me know the size you would like along with Short or Long Sleeve and how many. right now it is looking like the short sleeve T Shirts will be $9 and the long sleeve will be $13 please add $1.50 for all XXL or above. If I need to ship these items to you please give me your mailing address and I will calculate postage and let you know what it will be. You can make checks out to
Justin E Rodgers Foundation and send them to
11695 Castle Ranch Rd
DeSoto MO 63020
ORR you can pay through our Donate button on this website. Send me an email with the sizes and long or short sleeve and pay via the "Donate" button.
These shirts may take about 3 to 4 weeks to get printed and delivered to you. I will place our first order Dec 12. I have to have your check before I can place the order.
They will be light Grey color. The long and short sleeve will have the same design. Our logo on the front and on the back it will say "Not just your average infectious disease... www.lemierresyndrome.com" With angel wings over the shoulder blades. I will post pictures after our first set of orders go through Dec 12.

Thank you to everyone!!!!
Love,
Tammy

Thursday, November 27, 2008

Happy Thanksgiving

Happy Thanksgiving to everyone!
This is a day that we are all suppose to sit back relax and think about what we are thankful for. For all the people that cook relaxing is not in the equation.
I am thankful for my friends and family that have supported us through the last 6 months. It seems to be getting harder but I guess that is normal. It always gets harder before it gets easier. It doesn't help that now the holidays are here.
For those of you in the St. Louis area Justin's head stone has been put into place. My mom and dad picked out a beautiful bench with a great saying on the top.
I hope everyone has a good safe Thanksgiving!

Love,
Tammy

Tuesday, November 18, 2008

T Shirts and other Awareness items

Thank you to everyone that has purchased our new ribbons, bracelets and other items we have.
The Candles I have listed are some of the items we are selling at our craft fair. We have candles with Ribbons attached and we have Coffee and Hot Cocoa Candles too. My mom came up with those ideas and they have been a big hit at the fair. Great unique Christmas gifts.
I have had some emails about T shirts. We are still in the process of creating the logo and trying to figure out the color we want, what we want the back to say and all the good stuff. Please check back with us periodically to update your self with our items. Hopefully we should have a good start on the T shirts by the end of this weekend.
We also have www.lemierresyndrome.com pointing to this site so if you would rather give people a shorter site to type in tell them to go to www.lemierresyndrome.com

Thank you again and please continue to check back with us. It's always changing here!

Love,
Tammy

Wednesday, November 12, 2008

6 months today!

Well it's been 6 month today. We have come so far! I have had over 50 cases emailed to me and met so many people due to this horrible disease! Thank you to everyone that has helped us get the word out and emailed me their stories! Your support and help means so much! We have so many ideas on how to spread the word but we have to take one step at a time.
Justin is still in our thoughts everyday and it will continue that way forever! He is watching over us and guiding us along this crazy journey we have just begun.

Again thank you everyone!!!

Your thoughts and prayers for my family and I have meant the world to us!

Love, Tammy

Thursday, October 30, 2008

Another Case and Michael

I received this last night!
Hi Tammy,
I don't know how to post to the site, so I am just sending you a message.My 19-year-old son is at UCLA with classic Lemierre's. They virtually ignored his high fevers and sore throats for more than a week. And being a stoic guy like Justin, he tried to say it was nothing. He was finally admitted to the UCLA hospital system, but fortunately,even though it has spread to lungs and skull, he should be okay. I want you to know it is the subject of the UCLA Med school seminar this week. And they are going to also suggest that the medical profession rethink the mentality that you send them home with Tylenol if it is not Strep. Thank you for making your site on the Web. I believe that Justin is somehow helping us get through this. Please keep it up.
Best regards,
Alice

And please continue to keep Michael, as well as all the other people in your prayers. Michael is still in the hospital! His mother sent this update to me this morning,

Michael just had another echo and it shows that the leakage in his mitral valve is slightly less, but it still is a big leak, and the clot is smaller, BUT he has fluid around his left lung now. They will give him lasik for a few days to see if the fluid will go down. We don't really know what this means as of yet. We need to talk to his cardiologist about it.

Thank you to all the nurses and even Dr's that have contacted me letting us know they are helping get the word out! They have all put up flyers around the hospitals they work and is passing around our website to everyone they can.

I have ordered more business cards so if you see me out or would like me to mail you some please let me know. I should have them this week.

The new bracelets are going to be in this week too. We are asking for $3.00 or up donations for these as well as the pin or magnet ribbons we have. If you live out of St. Louis please email me @ sunflwz2@yahoo.com and all we will need from you is a check for the donation and we will get them out to you, I will let you know via email what mailing address to send it to.. Please add $1.50 for postage. I am going to set up an paypal account so if anyone wants to pay via CC they can through them. I'll let ya know when it is up and running.

Awareness and knowledge is the key to battling this disease! Even if you don't know much about Lemierre's that's all you have to say to people.
"I don't know much about this disease but I know it is VERY deadly and has taken the lives of young adolescents all over the US and the world. So please check out this website!"


Luv,
Tammy

Monday, October 27, 2008

Craft Fairs

Well they seem to be going well. We have had a good response and most of the people we are meeting saw us on the News.
Thank you to everyone that has helped us!!!!
We really appreciate it and couldn't have done it with out you all!
I am now researching Taylor Momsen, she was supposedly in the hospital with a life threatening throat disease! She was released already but makes me wonder what it was!!!!!!! She is a 15 yr old actress that plays a role in the TV series "Gossip Girls"

Wednesday, October 22, 2008

Prayers needed for Michael

Michael is a young man whose life was turned upside down due to Lemierre's back in Feb of 08. He has fought a very long on going battle and has won his battle but today had to go back into the hospital because he has an infection in his heart valve. He has a website of his very own you can visit http://www.prayformichael.com/ I told him and his mother Justin's whole family and all his friends are praying for him. His mother and I have stayed in contact ever since she found out about Justin months ago.. I also learned of a young 18 yr old girl in OH that will most likely be getting a heart transplant too b/c of the damage done to her heart. I'm not sure of her name at this time but we also continue to for pray her.
Thank you!
love
Tammy

Monday, October 20, 2008

Lemierre's

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%

Tuesday, October 7, 2008

Welcome to our site!

Please make sure and read all the way through our website. There is a lot of helpful and useful information here. Pass it along to all of your friends. Even bring it up in conversation the next time you take your children to the Dr. Justin's Dr's told me while he was in PICU that people die from this disease they just don't know this is what it is. For some people there is just not enough time to diagnose them so the Dr's believe their death was caused by Pneumonia or strep. Just 5 years ago the statistics were 120 case in 100 years. NOW the statistics are 1,000 cases a year and 100 deaths a year! This disease is coming back and we have to be more aware! It attacks young health adolescents ages 14 - 25. Everyone I have personally talked to that has survived this disease refers to it as their "Near Death Experience!" This disease attacks the body faster then any Cancer or HIV. Justin went into the hospital April 16, 2008 and passed away May 12, 2008. 4 weeks it took this disease to take him away from us. Every case I have read is a little different, it attacks different organs each time. I've heard it attack the brain, the heart, the kidneys and in Justin's case it went after his lungs. We are continuing Justin's fight! Justin was not old enough to be a soldier but in my eyes he IS OUR soldier. He gave his life to save others in my point of view! We are saving lives and educating Dr's and bringing more awareness to this horrible nasty disease! For more information please also visit www.medrants.com This Dr has been studying Lemierre's and sore throats for YEARS!
Thank you!
Justin E Rodgers Foundation for Lemierre's Awareness

Monday, October 6, 2008

Saturday, September 27, 2008

Tags for balloons

Here is something I wrote up if you would like to attach it to your balloons you release.

Justin – HAPPY 18th BIRTHDAY!! We still miss you everyday that goes by. You are our super hero and always will be! Anyone who finds this balloon please know it was let go for a young 17 yr old that passed away from a disease Dr’s know very little about. Please help us spread the word! Justin E Rodgers Foundation for Lemierre’s Awareness Inc
www.lemierresyndromejrodgers.blogspot.com
We LOVE you JUSTIN!

Just copy and paste it in a word document or note pad. ;0)

Happy Birthday Baby brother we love you!

I will take pictures of all the gifts Justin will get tomorrow and post them on the site!
Thank you for helping us make this day so special!
Anyone coming to my mom's please try to be there @ 4.

Friday, September 26, 2008

Justin E Rodgers Foundation for Lemierre's Awareness Inc

We are officially OPEN for Business! I received our Tax ID # today! We can now open a bank account and proceed like a normal Non Profit. We are going to set up tables at craft fairs around St. Louis this Oct - Dec and sell hand made candles, stationary, ribbons and anything else we can think of. We will be attaching cards to each item directing them to this website and asking them to help us spread the word of this disease.
We are also able to accept donations now! Any kind of donations are great! Most people think directly of Money but we can accept anything that will help us spread the word, your time, paper to print on, toner or anything at all. We will soon have a website for our Non Profit! All this in perfect time for Justin's Birthday!
Speaking of Justin's birthday don't forget to release your balloon @ 5:00 Sunday!
Anyone that is going to try to make it to my mom's you can come anytime around 4 and please bring your own balloons. THANK YOU!!

Luv Tammy

Sunday, September 21, 2008

My 3rd Cousin Jacob

Hi there! Last Tues I received an email from my 2nd cousin Cindy. She was letting us know that her nephew was sick over last weekend with the flu. After some time passed his dad just couldn't help but think that something didn't seem right and he thought of Justin and what had just happened to us. He decided to take him to the ER. Ends up he has bacterial meningitis. The Dr's told him that if he would have waited any longer he would be in some SERIOUS TROUBLE. When she first told us about him he was still sedated and had a probe in his brain to monitor the swelling. As of today he is awake and looks to be doing much much better! I wanted to share this story with everyone even though it has nothing to do with Lemierre's. We all know and have that little voice in our heads when something just isn't right! Please, please, please listen to that little voice. Jacob I can speak for everyone in our family and every one that reads this site when I say, "We are so glad you are OK and you are one lucky guy to have such a great family! We hope you get to come home soon!"

** Justin's birthday is this Sunday Sept 28th. I have had many emails from all over the US saying they will be joining us in a balloon release in there homes Sunday at 5:00 pm. For everyone that will be coming to my parents house to release balloons we are asking that everyone please bring your own balloons with you. We have no idea how many people will come but please bring your own balloons. Any color that you like! I am going to print out tags for you to attach to the balloon if you like.
Thank you!
Tammy

Wednesday, September 17, 2008

Check this out!!

I received this email just a little while ago!

Hi Tammy,

Just wanted to send you a quick email about something I thought might interest you. I am from Toronto, Canada, and a friend of mine is in medical school at the University or Toronto. The other day in class they did learn about Lemierre's syndrome, the bacteria that causes it, and that it's prevalence is on the rise! I was surprised, but very happy to hear, that future doctors in Toronto at least are learning about it in medical school. Just thought you'd be happy to know that too!
Talia

I'm very happy to hear that Lemierre's is being brought to Dr's attention!!!

Sunday, September 14, 2008

Justin's article

Well between my sister, Stephanie and I think we went to close to 30 stores trying to get our hands on a New York Times. I finally was told the magazine actually comes inside the news paper and that you can find the news paper in the boxes outside the stores. Anyway I never did get my hands on one but Stephanie says she bought some for us. We are also going to call Dr Lisa Sanders (the Author of our article) and see if she could send us some. I think I'm going to call some places tomorrow to see if we can get our hands on a couple more. I didn't realize how spread out they are. I thought it was kind of like the Post Dispatch everyone sold them. Anyway it is a GREAT informational piece! Thank you so much Dr. Sanders for helping us get our word out!

Love, Tammy

Well it's out!!!

Here is the link to the article!

http://www.nytimes.com/2008/09/14/magazine/14wwln-diagnosis-t.html?_r=1&sq=lemierre&st=cse&oref=slogin&scp=1&pagewanted=print

Tuesday, September 9, 2008

more and more cases

I have had 3 more cases emailed to me this week!! AND did you hear!!?!!? One of Dr Phil's young interns had strep throat and then passed away 1 week later. Kinda of interesting huh! Well I emailed the show 3 times letting them know about Justin and our website and that I heard of the intern that passed and thought maybe he had Lemierre's, but no word back. Justin from ID his mother said they had 5 cases of Lemierre's pop up in the last 6 months!!! They did a news paper interview and gave them our website info for people to go to to learn more about Lemierre's!!! If you get a chance to do any interviews or talk with any people that can get our info out as well please do so. I have soo many ideas running through my head on ways to bring about awareness! I would love to just start contacting all the major city's news papers and talk to them all about doing an article.. Don't forget the New York Times Magazine comes out Sept 14th!!! Also Justin's birthday is Sept 28th in 3 Sundays please, please, please release a balloon to him at 5:00 that evening and wish him a happy 18th birthday! Take pictures and send them to me if you could. It doesn't matter if you live in CA, ID, WI, Canada, Mexico we would love to see everyone that did this for us so take pictures and email them to me @ sunflwz2@yahoo.com The 2 colors we are using to promote everything we do is Green and Blue.
Thank you to everyone that emails me their stories about their Lemierre's battle!

Tuesday, September 2, 2008

New pictures & Justin's Birthday

My mom and I added some new pictures to the site during the last week. If anyone has pictures of Justin they would like us to possibly post or would just like to share with my family and I please email them to me. sunflwz2@yahoo.com

Justin's 18th birthday is Sunday Sept 28. My mom would love for everyone to release a balloon on that day in honer of Justin. It doesn't matter where you are CA, FL, CO, Canada, Mexico anywhere if you would like to release a balloon for Justin we would appreciate it. I am going to make up little tags to put on the string of the balloon. You all can copy and paste it onto a note pad or word document and print it out then attach it to the balloon and let them go 5:00 pm your time Sunday Sept 28th. Take pictures if you can and send them to me. We can post them here and let everyone know what part of the country or world you are in. Anyone in St. Louis can come to my mom's and let their balloon off with us if you like. If not you can let them off at your house or park or anywhere you chose! I will post more about this as we get closer to the date. ;0) OH and don't forget Sept 14th pick up a New York Times magazine and check out the article about Lemierre's! It's Justin's story but I don't think they are going to give out his name!
Thank you very much!!!
Luv,
Tammy

Friday, August 22, 2008

Lots of Hits

We have had lots and lots of new people to our website in the last 3 days!!! Over 500 just in the last 3 days!!! We have had over 2,000 in 2 months!
We decided on a name for our nonprofit, Justin E. Rodgers Foundation for Lemierre's Awareness!!!! Our lawyer is working on all the paperwork now.
I have had 4 cases of Lemierre's emailed to me this week that have all occurred over the summer!!! The emails just keep coming from people who have been effected by this disease. And all the stories sound so much a like. Everyone at the end of their email always asks if there is anything they can do to help. I really appreciate that. The only thing I can say in return to that is request a flyer and maybe put it up around your home town. OR Fwd it in a email to everyone in your address book. That's about all we can do right now is talk about it to people and pass the word around more. If you don't know very much about Lemierre's just take the person you are talking to to our website. Once we get our Nonprofit up and going I will be asking for Volunteer's all over the U.S. and then some. I will actually have a website where you can sign up to volunteer. You don't have to be here in St. Louis to help.

Thank you so much to everyone that has helped us get the word out!!!
luv,
Tammy

Friday, August 15, 2008

New York Times

We have just found out it will be the Sept 14th issue of the New York Times our story will be in. There will be an article on Justin and his Lemierre's Battle. The Author's name is Lisa Sanders and it looks like she has been writing about Diagnoses for at least 7 + years. I do not think they will name Justin as the patient but the important thing is millions of readers will now be more informed on Lemierre's!!!!

I received a packet of info from the State's Attorney General Office on starting a Nonprofit Organization and I have printed out a bunch of info from the Internet too. So my family and I will get together this weekend and start brain storming. First thing first we need to come up with a name. If anyone has any ideas you can email me. I like having Lemierre's in the name so people know what we are fighting but then again I would love to have Justin's name in there too because he is the reason we are fighting SOOO hard! We have lots of work cut out for us but it will be totally worth it!!! I have looked and looked and have not found anyone trying to bring awareness to this disease through a nonprofit. So that is just what we are going to do. We will have fundraisers and all sorts of things going on to promote the awareness of this disease that hurts many many people and families. I don't want to just target it hurting teens because I have heard of 30 - 40 year olds getting it as well. Look at what Dr. Robert Centor wrote on his website this morning! "Finally we had an epidemiologic study which defined the extent of this disease. I have extrapolated the Danish data to the United States. Assuming the same incidence, I estimate that we have approximately 1000 patients with Lemierre’s yearly and 100 deaths. I would put the confidence range of these estimates at 50% greater or less than this estimate." So everyone sitting back thinking this won't happen to me or my kids will not be effected from this or Dr.'s thinking "nah that's not what my patient has" is not going to fly anymore. This thing is getting bigger and bigger and more and more people are being effected as the months go by. Just a few years ago they were saying 120 cases in 100 years now it is 1,000 in 1 year!! We need to start getting scared and making sure if it does happen we (including our Dr.'s) are well educated and it is take care of right away! That's why I am going to put my heart and soul into these awareness efforts!
If you have never been on Dr. Centor's blog site you should check it out! www.medrants.com

Thank you again and go get the NY Times Sept 14th!
Luv,
Tammy

Saturday, August 9, 2008

Happy Birthday Jamie!!!

Today is my brother Jamie's birthday! We are actually getting mom and dad to go out with us tonight! I can't wait to show Jamie what I made him! I'll tell you all about it in a couple days. I don't want to ruin the surprise! LOL
We had 102 people at the website yesterday!!!!! Another big day!!!
Keep forwarding those emails and the flyers. I have had a few requests for the flyer so please if you don't receive one contact me and I can send it to you. Sunflwz2@yahoo.com It should be real easy to open it is in a word document, it even has Justin's picture on it!!! So people can put a face with the name!
I've had so many people that I know over hear other people they don't know talking about Justin all this promotion is really working!
Someday we will all be able to make sense of this and we will know exactly what our plan on earth was. When Justin signed my wedding picture he put "I wish you many happy years and I will always be with you." And that was exactly to the day 1 year before he passed away. My little brother was taken from us on my 1 year wedding anniversary but I don't mind sharing that day with him. They are both days I WILL NEVER forget! I will always miss and love him but I know I'll see him again and at that time I will thank him for writing that for me and waiting for me the night he passed away!
We love you Justin!! And I promise you we are going to fight this horrible disease with all of our strength!

luv,
Tammy

Friday, August 8, 2008

WOW!!!

The response from the emails have been amazing to say the least!! We have had over 300 people visit our site in 3 days!!! Usually we have anywhere from 10 - 40 people visit a day, yesterday we had 108!!!! Justin is really becoming famous!!
My family and I would love to hear the progress on the 2 in OH and the one in NC that currently have the disease! If you could please email me, sunflwz2@yahoo.com . I know some don't like to share details but we just want to make sure these teens are ok. I was forwarded a great Power point presentation describing a lot of different things about Lemierre's. It's just amazing. From what I gathered from this presentation is that 10% or more sore throats have this bacteria that causes LS. Its when the people are not given the correct antibiotics when Lemierre's starts to develop. I think there are other ways our children are getting this disease but we just are not made aware of it yet.
Every week I get an email or a comment to this website of another patient that currently has or had Lemierre's in the last couple months. If this keeps up that means I will get at least 52 - 104 cases emailed to me each year. And the old research shows 120 cases in 100 years. Justin's website is PROOF they are WRONG saying 120 in 100 years.

Thank you!

Tammy

Wednesday, August 6, 2008

Flyer

One of my family members created a flyer promoting Justin's website and Lemierre"s awareness. I emailed it to everyone in my address book and put this message in the body of the email.
"Hi there! One of my family members created this flyer to pass around to everyone we know. Please open it up, print it and pass it around to everyone you know. Also forward this email onto everyone in your address book. I promise we can save lives! I have had 25 cases of lemierres emailed to me in the last 3 months and I now know of 4 teenagers that did not survive. All of the ones who have survived have some sort of breathing problem now or other major problems. This disease attacks young healthy adolescence ages 13 - 24. It literally attacks their organs and shuts them down. I had a Dr call me the other day about a case and I really feel like the knowledge Justin's website is provided him has saved his patients life! Please pass this on this is not a chain letter this is not a joke. I will be printing this flyer out and putting it in my children's school and placing it everywhere I can Dr's offices, teacher's lounges, dentist offices everywhere! We will soon be doing News interviews and who knows we may end up on Oprah! ;0)
All I'm asking is you click on forward and add everyone in your address book then click on send! It will maybe take a total of 5 min.. If you don't wanna do it for the lives you could save do it for my little brother who's life was cut way too short at the age of 17! This disease took him away from my mom, dad, my sister, my brother myself and my 3 kids.

Thank you!

Luv,
Tammy"

If you would like me to send you this flyer please send an email to: sunflwz2@yahoo.com

We had 87 hits on this website yesterday and I believe it was due to the emails we all sent and forwarded on. THANK YOU!

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

Tuesday, June 24, 2008

Happy birthday dad!

Today is my dad's birthday! HAPPY BIRTHDAY DAD! I won't tell you all how old he is, I don't want to embarrass him. ;0)
I want to say a personal thank you to Caitlin. She emailed my self and my mom letting us know she had Lemierre's syndrome 2 years ago. From what it sounds like she went through everything Justin did, life support and everything. Thank you for sharing your story with us Caitlin and thank you very much for helping us get the word out about this nasty disease!

Also My uncle Greg told me that Kay Quinn (the Healthbeat lady from news channel 5 here in St. Louis) sent a message to my Uncle Tim and is researching Lemierre's and is looking at possibly doing a story on it and Justin!!!!!!!!!! That would be amazing. I read an article yesterday from 2004 that talked about Lemierre's and how it is on a rise. So for 5 years its been on a rise, then how come 95% of the people that come to Justin's website have never heard of it. We are making a difference thanks to ALL OF YOU!!! Please don't ever give up and stop talking about Justin and this nasty disease that took him from us! I know My family and I won't!
Luv, Tammy

Monday, June 23, 2008

3 More Stories

This is really frustrating to me. This disease is obviously not as rare as researchers think anymore. I know I have said this a million times and I will say it a million more until the right person listens to me! I have had 3 cases emailed to me over the weekend!!! They all left comments on the other posts so check it out. Since I began this site 1 week after Justin passed (4 weeks ago) I have had close to 20 stories emailed to me of Lemierre's Syndrome. 20 that all happened in the last 3 years. So WHY are researchers saying 120 cases in 100 years!!! I am happy to hear that 90% of the cases I have heard about the patients have lived but it breaks my heart that my little brother didn't. I don't understand why him and this other teenager didn't make it? What made their cases so different. I've heard people say "the doctors have to catch it in time". I really believe the Dr's caught it in time in Justin's case. Or so I thought. All the other cases sound just like Justin's. One case I read about the young man had symptoms for a month, then finally they figured out what he had. I don't get it, a month and he still came out OK. This just goes to show how strange and unpredictable this disease is. I think one of the MAIN problems with diagnosing this disease is the time it takes to diagnose it. From what I have heard they have to let the bacteria grow in a dish type thing then slowly add antibiotics to it to see how it reacts. And I believe this all takes around 3 - 4 days.. Again I'm not a medical expert by any means so I could be wrong, but this is becoming less RARE there has to be a blood test that can be done or something to that nature to diagnose this horrible disease faster. I think the awareness we are doing here is working but it is so hard to hear of all these cases and still researchers say its rare. How many teenagers or young adults does this disease have to hurt or take from us before the big Doctors and researchers take the word RARE away from the description of Lemierre's Syndrome. I really do believe this one little 4 letter word "RARE" is hurting our awareness efforts. When a Doctor or nurse hears the word RARE they most likely think to them self "well if it is rare then this person most likely doesn't have it". I COULD BE WRONG but deep in my heart I don't think I am. I have now stopped myself from saying the word rare when explaining Lemierre's Syndrome. I consider winning the lottery rare but not a disease that is really harmful to our sons, daughters, sisters, brothers, nieces, nephews, friends, cousins, or enemies. This is no longer a RARE disease in my vocabulary or on this website.
Thanks for listening!
Tammy

Friday, June 20, 2008

Stats

I added a stat counter to our page down below the BIO I added for Justin. Its really neat, It tells us how many loads our page gets everyday. It also tells us out of those page loads who is re-occurring that day and who is new. Check it out I think between yesterday and just this morning we have had 83 page loads!
Today is Chrissy's Birthday!!! Happy 22nd Birthday Chrissy! June is a month full of Birthdays! Mine was the 5th , Chrissy's is today and my dad's is Tues the 24th. And Father's day was last weekend. This has been a hard month to get through but we can do it! It really brings comfort to me and the rest of my family when people tell us how they are going to tell their Doctors and pass along this website to everyone they know!
I have had a few people tell me how scary this disease sounds. It is scary and people should be scared of it, but if we can demand to doctors that our children be tested through blood instead of a swap in the throat we may just be able to save lives. I'm not sure if that is what it is going to take or not. All I know is I want everyone to know the name Lemierre and know that it hurts and kills young healthy (or not healthy) adults and teenagers! I was so upset when I went to the Dr myself and asked her if she had heard of Lemierre and she said no! But then I have heard lots and lots of Doctors and Nurses have never heard of it. I want to change that, I want them to know what it is and what it looks like and if they ever find a patient with it to send them straight to the hospital! Most cases I read about the patient is in and out of the ER or Doctors office at least 5 - 15 times before they figure out what it is they really have! To me that is just insane! When they couldn't figure out what Justin had I was getting so mad and aggravated! He had a temp of 103 - 105 for over a week before they figured out what it was! I kept thinking this is 2008 they should be able to figure out what a person has faster then this. But this bacteria is so sneaky and from what I've heard can grow with out oxygen. I don't know much about medical things at all but from what I read this is a really hard disease to diagnose. Please, please urge your doctor to learn more about this disease!

Monday, June 16, 2008

Father's Day

I want to wish all the Father's a Happy belated Father's Day.
I haven't been able to publish a post because I kept getting an error message on my computer.
Anyway Happy Father's Day to all those wonderful Fathers out there. Including mine!

We missed Justin very much on this day. We did go visit him and got some great ideas for his headstone and burial site.
I have had some great emails coming my way from people passing along this website and awareness in general. We are close to having 300 votes on the website for the top poll, I think that's pretty darn good for only having this website up and going for 3 weeks.
My Uncle Greg and I posted Blogs on KSDK.com and he received a reply from Kay Quinn saying Lemierre's sounds like a very interesting story and she will look into it. I also had some people email me saying they have connections with channel 4 news, SLU & Barnes Hospital. We are all doing a great job here and hopefully we can beat this horrible disease and not let it hurt anyone elses family!
Thank you again!
Love,
Justin's Family

Friday, June 13, 2008

One month

Well it has been one month since Justin was taken from us because of this horrible nasty disease. I first off have to say a huge Thank you to everyone that is thinking of us and praying for us (Justin's friends and family) it really does help in times like this! Everyday I get 2 or 3 new posts of people I don't know nor does my family telling us how sorry they are for our loss and that they are thinking and praying for us and myself and my family has to say THANK YOU!! I'm really happy about how much traffic this website has gotten. It looks like everyday I have 10 - 20 new votes on the top poll. A friend of the family said she is going to work on getting us a logo started for this awareness. We can put it on T Shirts and all sorts of stuff to get the word out. My mom talked with A Doctor that has been researching sore throats for a really long time. He asked my mom if he could use Justin's story when trying to teach other Doctors that a sore throat is not just a simple sore throat it could be much much more.

I've learned so much in the last month about this disease and how MIS diagnosed Strep Throat is. I believe this to be like Cancer. Doctors are not exactly sure how people get cancer we just know they do and some survive and some don't. That is how I feel about this disease but I think this disease hits you a lot faster. We found out Justin had it and within 3 weeks of knowing what it is he passed away. And we never got to say goodbye and Justin never knew that is what he had. Cancer patients most of the time have months to try to fight and when the worst comes of it they say their goodbyes and they know what took them away. In my eyes this needs awareness just like cancer. I again emailed Oprah and some others about this story. In the next couple weeks I am going to type up a generic letter about Lemierre's and maybe send 4 or 5 letters out a week to doctors I find online. If you would like a copy of this letter to send to your Doctor or Doctor's in your area just send me an email.
Thank you again for all your LOVE, SUPPORT AND PRAYERS!

Tuesday, June 10, 2008

Cards and Ribbons

Sorry I haven't posted in awhile Google would not let me log in.. Kept saying wrong email address. Oh well.....
I passed out cards to family and friends I have seen over the weekend and so has my mom. Everyone seems to love the idea. My cousin Sara made Ribbons to sell at her school and also to people at the hospital while Justin was in the PICU. She came by my mom's the other day and dropped off a whole bunch she made. If anyone is interested in some please email me and let me know. They are blue with Justin's name written in silver. They are $1.00 a piece. I can mail them to you and you can mail me a check or what ever works for you. The coffee shop in Eureka also told my Uncle Tim that we could set up some information there about Lemierre's and Justin's story.
I have now emailed; Oprah, Regis and Kelly, Ellen, Tyra, Mike and Juliet, all the news channels, Discovery Health and many more TV shows. My Uncle's friend posted the article on a Blog on News channel 2's website. It got a lot of comments. People are just shocked that Dr's do not know about this disease. I actually googled "Misdiagnosed Strep Throat" yesterday and so many things came up. There is actually a website called www.wrongdiagnosis.com !!!! I understand Dr's make mistakes (they are only human) but it just seems that every story I read they either didn't do a throat culture or they did but they didn't send it out to be looked at. Also I found a website called Sciencedirect.com I found some interesting articles about Lemierre's there too. One of them came from Australia and it was a warning to all ICU and ER nurses letting them know Lemierre's is making a big come back and what to look for. Another was urging Physicians to do blood work for sore throat patients and making sure they monitor them more. These were both written around 2006.
We have gotten a lot of responses from the news article!! I guess I will just keep on emailing until someone will listen. Maybe I'll start mailing letters and calling too.

Wednesday, June 4, 2008

Justin's News Article

My mom just called and told me Justin's story made it out today in the West Magazine in the Rockwood area. I copied the article from the site and put it towards the bottom of this page.

My Cousin Jessica had a GREAT idea!!! It was to email or mail letters to all the University Hospital's around the US. I googled University Hospitals and already sent 7 emails. So far I hit SLU, Upstate NY, Cincinnati OH, Cleveland, and TX. I think I sent 5 emails to different people at Upstate NY. My goal is to try to send out 5 emails every other day to different people at different University Hospitals.

Thank you for helping me spread the word! Who knows we may have already saved a life! I had someone tell me they know someone whose teenager was sick with a sore throat and the Dr couldn't figure out what they had. That person sent them to my website. And my mom had someone do the same thing. If we have saved 1 or 2 lives from this website and its only been 2 weeks, can you imagine what will happen if we keep this up!! Its going to take a lot of people and a lot of time to bring awareness to this illness but I know we can do it!

Love to all, Tammy

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...

Thursday, May 29, 2008

More emails

I just sent out 29 more emails to talk radio shows around St. Louis and other cities. Here is the email I sent:
Today I’m emailing you to bring awareness to a very serious illness. This disease is a fast acting killer. It attacks the body faster then any Cancer, HIV or anything I have ever heard of. My 17 yr old brother past away 2 weeks ago from it. The say it’s rare but it is making its way back into our world and needs to be stopped. Doctors do not know much about it at all. Actually I would guess 70% of Dr’s have never even heard of it! I asked 3 last week and they all said “What’s that?” 2 teenagers died in St. Louis with in 2 months of each other from it. The name of this disease is “Lemierre’s Syndrome” also known as the forgotten disease. Everyone that survives it calls it their “Near Death Experience”. It is also known as strep throat gone bad. I’ve emailed every news channel, radio station, news paper I possibly can to get awareness out about this horrible killing disease that no one wants to talk about or research. Please check out my brother’s website and if you can somehow add it to your station’s website to promote awareness that would be amazing. Or even mentioning it once on your show could make a huge difference. That one special Dr may hear it and want to start researching it more.
www.lemierresyndromejrodgers.blogspot.com
What if your son or daughter was diagnosed with Strep or tonsillitis and a couple weeks later was on a ventilator or life support struggling to live. Most of the cases I have read about it took the Dr’s at least 2 or 3 weeks to figure out what the people had. That is ridiculous! WE need to learn more about this disease and research it to stop it from hurting our children. It mostly affects young healthy adults, ages 14 to 19.
Thank you for your time!!!

Tammy Valencia
Sunflwz2@yahoo.com

If you would like to copy it and email everyone you know, radio stations, Tv stations talk shows anyone that would be great too!

Tuesday, May 27, 2008

No replies yet

Well I emailed every news channel here in St. Louis and even a couple talk shows. However I have had no replies yet. I'm sure these things take time. I also emailed around 5 people from the Post Dispatch. My mom had a good idea of creating just a generic letter about Lemierre's Syndrome and mailing it to all the Dr's we can. I created 250 business cards with information on Lemierre's Syndrome along with this website just to hand out to everyone we know. We let off 17 balloons Sat in honor of Justin. I attached notes to the Balloons saying:
These balloons are set off
in memory of Justin Rodgers.
Check out his website & pass it along
www.lemierresyndromejrodgers.blogspot.com
Knowledge is power!!!
We love you little brother!

We won't give up until someone will listen to us!

Thursday, May 22, 2008

Another Case

Today I am going to try to email as many newspaper and TV channels as I can. My mom gave an interview yesterday to a local newspaper that is interested in Justin's case.
Yesterday my mom also spoke to the family whose daughter passed away from this same disease in March. She was also at Cardinal Glennon. Her family is trying to get the word out about this illness as well.
Yesterday I found a blog about Lemierre Syndrome and 4 people left comments saying their Dr told them they had Strep Throat and gave them antibiotics with out even giving them a strep test. That is exactly what Justin's Dr did to him. I feel like some Doctors (NOT ALL!!) are just either getting too lazy to do tests or are just too busy and over booking themselves to do the tests. Or maybe its the insurance companies telling them not to. That is just my point of view or my thoughts on this situation. I hope it is not the truth.
I went to the Dr when Justin was in the hospital b/c I started getting a really bad cold. When I was telling the Dr of my symptoms I mentioned my brother being in the hospital with Lemierre Syndrome. She looked at me puzzled and said "Whats that?" 3 days later I took my daughter in for her 2 month check up and after her visit I asked the Dr (Who has been my family's pediatrician for about 20 years.) if he had ever heard of Lemierre Syndrome. He said No and went and got his medical book to look it up. The book he grabbed was at least 6 inches thick and when he found lemierre syndrome in it he looked at me and said, "Just to show you how rare and un researched this disease is look what they wrote." It was maybe 2 paragraphs long and that was it. Pretty much all the paragraphs said is sore throat and mono like symptoms, something about blood clots & can be serious. That's when I knew we were dealing with a nasty illness.
I know websites say this is a RARE disease but tell me how rare it really is when within 2 months of each other 2 children passed away from this thing not even 30 miles from each other and there is a yahoo support group for those who have survived it.
When Justin first was diagnosed w/this I did a lot of research and everyone I found that survived called this their "Near Death Experience!" I guess the people we should really be bringing awareness to are Doctors and Nurses.

Tuesday, May 20, 2008

Its working keep it up!!!

This site hasn't even been up and going for 24 hours yet and we already have so many people saying how great it is!! Thank you to everyone who is passing on the word!

Like I said this is our first blog/website so please be patient with us! I've had some people say why the long web address? I didn't just want to put LSjrodgers because no one knows what LS is I wanted to spell it out that way if it catches someones eye they will say "Lemierre's Syndrome what's that?" and maybe Google it.

My children's physician had never even heard of it and he was Justin, Jamie, Chrissy and my physician too. He pulled out the book to read about it and in this HUGE medical book there was only 1 small paragraph about it. That's ridiculous! This disease is hurting our children and there is one paragraph about it! I promise that will change!
Thank you!!

Monday, May 19, 2008

Awareness

Well the first post to this site is going to just be about Lemierre's Syndrome and the definition.



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.

Symptoms
The 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.

Treatment
Lemierre'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.

Incidence
Lemierre'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%.[

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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.