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

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

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

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

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

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

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

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!

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

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!

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.

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

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...

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!