Discussions By Condition: Rare Disases

Lemierre's syndrome

Posted In: Rare Disases 12 Replies
  • Posted By: nomadchica
  • September 13, 2007
  • 04:48 PM

Hi there! Does anyone have any experience with Lemierre's syndrome? I had an ear infection last year that turned into Lemierre's syndrome (a potentially fatal blood clot in my jugular vein), and was hospitalized for a week. I haven't been able to find much information on it beyond the basics. I've searched the internet, and done a Medline search and reviewed the articles.

I'm wondering if anyone else has had experience with this medical condition, either as a patient or as a practitioner. I'm specifically curious about long-term effects and recovery time, as these are the areas where I've been able to find literally NO information.

Thanks!! :)

Reply Flag this Discussion

12 Replies:

  • I had an experience with this about 5 years ago. I was 22 and perfectly healthy...till my sore throat turned into a weeks stay in the hospital. They took about 4 days to figure it out and still don't know where it came from. They assumed my tonsils. I was lucky to have had a great infectious disease doctor who found it. I ended up having to get my tonsils out after as a precaution - that was miserable. I was also wondering if there were any long term effects, but haven't found much. It would be interesting to find out though.
    Anonymous 42,789 Replies
    • October 26, 2007
    • 06:12 AM
    • 0
    Flag this Response
  • hi robyn -- thanks for your post! i'm excited to hear from someone else who also experienced lemierre's syndrome. i'm sorry to hear about your experience, though -- sounds like it was not fun. so...how are you doing now, health-wise, 5 years later? and did you experience difficulty back when you got out of the hospital? my experience was that for 1 year after being hospitalized (and i was quite sick for a month before being hospitalized), i was tired all the time, and i overheated really easily. i'm usually a very active person (hiking, biking, running), so during that summer, i ended up with heat exhaustion many times (overheated from doing too much in the sun, sweating profusely, migraines). it took me a while for me to figure out what was going on...and the various doctors overseeing my care weren't helpful. i essentially went from someone who spends much of her free time exercising and training for triathlons to someone for whom walking to the store to get groceries was a big excursion.now, 2 years after being hospitalized, i'm doing much much better than i was. but i've been experiencing some hormonal/severe pms problems. i won't go into them here. but anyway...i'm really curious to hear about what your life has been like since your bout with lemierre's! is everything just totally back to normal for you?? have you had any other health problems since the lemierre's fluke?thanks again for your post!kim :)
    nomadchica 8 Replies
    • October 27, 2007
    • 03:50 AM
    • 0
    Flag this Response
  • Chek out my little brother's page that I put together for him, www.lemierresyndromejrodgers.blogspot.com He was diagnosied with it in April of 08 and passed away 1 month later May12, 2008. If you get a chance to check it out leave us a comment. Love, Tammy Justin's older sister
    sunflwz2 1 Replies Flag this Response
  • hi tammy,thanks so much for your post. and i'm so so sorry to hear about justin. i can't imagine losing one of my little brothers -- my heart goes out to you and your family. i took a look at your site, and i'm excited to have a forum for lemierre's survivors (both people who have survived lemierre's and family members of those who died from lemierre's). i look forward to reading more of the content on your site. and i will send you my story, to add to the collection.i'm sure that you and your family have done your own research on lemierre's. but to add to your perspective -- i'm a health care researcher by trade; i've been working as a health care researcher for over 10 years. and for a year after i had lemierre's i performed exhaustive pubmed and medline searches. i collected every journal article i could find that mentioned lemierre's. and i can confidently say that there is VERY little, and glaringly insufficient information available on this increasingly important condition. i am so glad that you and your family are taking steps to increase awareness! i'd like to do what i can to help.kim :)
    nomadchica 8 Replies Flag this Response
  • Hello my name is Jennifer and I had Lemierre's 15 years ago when I was 16 years old. I am now 32 and all is well with my health. I remember when I got out of the hospital (a three week stay in a city three hours from home) I experienced symptoms for at least two years. I lost half of my hair from the high and low fevers( it did grow back). I had cysts on my ovaries from the blood thinners. I too experienced some hormonal problems that put me into a mild depression and messed my cycles up for maybe 6 months. When I was in the hospital I couldn't move my upper left arm. the doctors never did figure that one out. that gave me the most difficulty for the longest time. even years later I would get this pain in my collar bone anytime I was overly tired or sick. But as for long term side effects I don't have any now (at least that I know of). I was really concerned at the time that it had affected my reproductive organs and wouldn't be able to have kids, but I now have two boys and had no problems with my pregnancies. They did do some extra blood work to make sure I wouldn't be high risk because of past blood clotsTo Kim, When I was in the hospital there were only two medical journal articles on record for the doctors to reference! They had them posted with my chart. Many of the doctors came to see what a Lemierre's patient "looks like". They all had to read these articles before they could come in my room. I think I still have the copies somewhere. If you would like to hear more of my story I would be glad to share my experience with you.
    jenaa0101 1 Replies
    • February 3, 2009
    • 03:49 AM
    • 0
    Flag this Response
  • i had lemierres 5 years ago, i am now twenty and still having problems with my throat. i also had a great team of proffessers, ENT, Nerology, and infectious disease units. my stay in hospital was 3 months. my recovery was up to a year and a futher more 4 years suffering from M.E chronic fatique syndrome. when in hospital i felt like a circus freak for every one wanted to be part of such a big medical case. like most people i know nothing of after care, i have read about clots to absesses to hip athritis and am very nervous. i also had a sever paralisis of my tounge pallet and also thoat. i had to learn to talk again. my symptoms were sever, toncilitis, glandular fever, sinusitis, septicemia, epsin barr syndrom, f. necrephorium and other things that get complicated. also had traces of a disperced clot in my neck. i am glad that now there is support forums and stories from other people out there for when i was diagnosed there was nothing. i am glad to hear that you had "normal" children for i am pregnate with my first baby and am so frightened that my genes will some how pass down, or any other complications for my doctor told me he didnt know the chances of me having children for the disease was very rare and un heard of. like most of you will feel, i am sick of explaining my history to doctors and midwives ever time i go to the doctors. no one has a clue what it is or how serious lemierres is. they just nod and agree. i cant remember much of my time in hospital or any of the year surrounding my illness for i was completely drained. i was treated for lymes disease, meningitus, and diptheria. my body was a pin cushion of I.V drips. it was a very scary time. three hospitals told me nothing was wrong with me and that i was studying to hard for exams. the last hospital kept me in for observations and thank god they did for i slipped into a semi coma state. if anyone has any information of after effects or would like to ask questions or share stories feel free to contact me my email is carve_your_name_into_my_arm@hotmail.comthank you and god luck to everyone.nathalie king
    Anonymous 42,789 Replies
    • October 26, 2009
    • 08:52 AM
    • 0
    Flag this Response
  • I had Lemierre's almost 3 years ago. I was really lucky and only in the hospital for a week, but I had 2 months of IV therapy and 3 months of blood thinner shots. It was a crazy way to finish high school, but I survived and I feel stronger because of it.I'm currently writing a paper about the information available to patients or family of Lemierre's Syndrome (or Lemierre's-like). If you have 2 minutes, please take my survey! I need to have the results by November 24, so please answer soon if you see this. I really appreciate it! Here's the link:http://www.surveymonkey.com/s.aspx?sm=tS5jdwGqreFuhOXpfEHEhw_3d_Also, if you know other patients or family members, please pass this on to them! Thanks!Mary Tellers
    mtellers 1 Replies
    • November 16, 2009
    • 03:57 AM
    • 0
    Flag this Response
  • Chek out my little brother's page that I put together for him, www.lemierresyndromejrodgers.blogspot.com He was diagnosied with it in April of 08 and passed away 1 month later May12, 2008. If you get a chance to check it out leave us a comment. Love, Tammy Justin's older sisterHi Tammy,I am sorry to hear about Justin and hope that your web page helps all those in need of info. I have some questions if you dont mind. My husband has been in the hospital for almost 4 months, the doctors are not sure what is wrong with him. He had cold like symptoms at home for about two months before he finally went to the ER. They ran some test and ct scans and such and immediately shipped him off to a hosptal 2 hours away that had a hematologist and oncologist there. He had blood clots literally from his thighs all the way to his heart and lungs. I am not sure if there were some in his throat or not, so much has gone on all the doctors keep saying is they are not sure what caused it, he has been on blood thinners and iv fluids, antibiotics, and everything but we are sick of hearing the I dont knows from these doctors. My question is can you help us find some doctors here in Texas that have some experience in this Disease? I dont know what else to do. Please send me any information that may help. Thank You for your time.Jenny
    Anonymous 42,789 Replies
    • January 31, 2011
    • 04:10 AM
    • 0
    Flag this Response
  • Hi everyone! I know this post is older but I was diagnosed with lemierre's syndrome and was hospitalized for 16 days…I am a female and 28 years old. Very healthy.I was admitted on 9/7/11 into the Emergency room because I was so tired and had no energy. I laid in bed for three days throwing up everything I ate and became extremely dehydrated. I had went to my doctor a week before he said I had strep throat and an ear infection and gave me 5 days of antibiotics which did nothing…When I was admitted to ER I was immediately hooked up to an IV. I had the shivers sooooooo bad. My entire body would shake because I was so cold. My fevers were an average of 101-103. I was quickly moved up to ICU were I remained f or 16 days. I was hooked up to SO many machines and it took about four days to discover what I had. At that point, I turned yellow from jaundice, my kidneys started to fail, my throat swelled up from the blood clot which also traveled to my lungs. I had issues breathing so for three days I was on a ventilator which was terrifying for my family. I had to have blood transfusions for 5 days because I had FOUR blood plates which anything under 20 ,000 is life threatening. I don’t remember much, they had me knocked out for most of it, almost comatose. I had so much blood taken, every test you can imagine. They had to keep me drugged up because they had a feeding tube in my mouth for almost two weeks. It was terrible!! Eventually the many antibiotics started working and after about 10 days I was able to eat real food. I was admitted to Saint Peters Medical center here in New Jersey. I had a terrific team of doctors. I thank god everyday that I am still here. Many times they weren’t sure if I was going to make it. I went home and remained home for about 11 days, I couldn’t walk much for a few days. I am not out for 17 days! And I feel great! So far no side effects (knock on wood) my strength is back, I feel as if nothing happened to me. Although I lost about 14 pounds lol. My doctor said I can’t get it again, does anyone know if that’s really true? I guess I am terrified of it coming back. I never felt so bad in my life. Remember we survived and we are very lucky. I feel bad for the ones who didn’t make it. Thank you all I just wanted to share my story.
    Annagbaby 2 Replies
    • October 11, 2011
    • 04:09 PM
    • 0
    Flag this Response
  • Hey, I am 22 years old and was admitted into the ER on June 25th of this year. I was supposed to pass away but sure enough I didn't! The doc told pulled my parents aside and told them they needed to start saying goodbye. Anyways once admitted I went into a coma for 15 days so I dont remember too much. Just some really crazy dreams. I spent a month in the hospital and 2 weeks on an IV at home. The day after the IV came out I went to the beach and played beach volleyball. Im a very active person so I had to do something that would lift my spirits. I asked my doc the same thing and he said that yes I can get it again but it wouldnt be nearly as bad because our bodies build up an immunity to it. Hope that helps! RyanHit me up if you have any other questions- rvoight@live.comHi everyone! I know this post is older but I was diagnosed with lemierre's syndrome and was hospitalized for 16 days…I am a female and 28 years old. Very healthy.I was admitted on 9/7/11 into the Emergency room because I was so tired and had no energy. I laid in bed for three days throwing up everything I ate and became extremely dehydrated. I had went to my doctor a week before he said I had strep throat and an ear infection and gave me 5 days of antibiotics which did nothing…When I was admitted to ER I was immediately hooked up to an IV. I had the shivers sooooooo bad. My entire body would shake because I was so cold. My fevers were an average of 101-103. I was quickly moved up to ICU were I remained f or 16 days. I was hooked up to SO many machines and it took about four days to discover what I had. At that point, I turned yellow from jaundice, my kidneys started to fail, my throat swelled up from the blood clot which also traveled to my lungs. I had issues breathing so for three days I was on a ventilator which was terrifying for my family. I had to have blood transfusions for 5 days because I had FOUR blood plates which anything under 20 ,000 is life threatening. I don’t remember much, they had me knocked out for most of it, almost comatose. I had so much blood taken, every test you can imagine. They had to keep me drugged up because they had a feeding tube in my mouth for almost two weeks. It was terrible!! Eventually the many antibiotics started working and after about 10 days I was able to eat real food. I was admitted to Saint Peters Medical center here in New Jersey. I had a terrific team of doctors. I thank god everyday that I am still here. Many times they weren’t sure if I was going to make it. I went home and remained home for about 11 days, I couldn’t walk much for a few days. I am not out for 17 days! And I feel great! So far no side effects (knock on wood) my strength is back, I feel as if nothing happened to me. Although I lost about 14 pounds lol. My doctor said I can’t get it again, does anyone know if that’s really true? I guess I am terrified of it coming back. I never felt so bad in my life. Remember we survived and we are very lucky. I feel bad for the ones who didn’t make it. Thank you all I just wanted to share my story.
    rvoight 1 Replies
    • December 16, 2011
    • 05:36 AM
    • 0
    Flag this Response
  • Hi everyone! Thanks so much for posting your responses, and sharing your experiences. For those of you who don't already know about it, there's a great Lemierre's online support group on Facebook -- I've found it to be immensely helpful. Also, since there have been so many more cases (or b/c awareness has increased and doctors are better able to recognize and diagnose cases, there's more published research on this crazy disease.Thanks again for your posts, and I look forward to hearing more about your experiences. :)
    nomadchica 8 Replies
    • October 28, 2012
    • 09:41 AM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Oh, and Mary Tellers, I would love to hear more about the data you've gathered and information you've compiled! :)
    nomadchica 8 Replies
    • October 28, 2012
    • 09:44 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.
Advertisement

8 Health Dangers of Depression

Unmanaged depression can take a toll on your physical health.

Best Cough & Cold Meds for Kids

Help your child feel better, faster.

What HIV Positive Women Should Know About Sex

You can have sex after an HIV diagnosis.

Food Choices for Diabetes

What, when and how much you eat affects your blood sugar.

6 Exercises for Multiple Sclerosis

Ease your way into these stretching and strengthening moves,

Advertisement