I had trouble finding information on Le Mierre's disease or Lemierre's Syndrome. It's pretty rare. I needed to find out about it recently because my 39 year old brother in law was diagnosed. It was kind of bizarre.
He suddenly had this grapefruit sized lump in his neck. The next day it was the whole side of his neck was huge. He was in pain. At first, the doctors weren't sure what it was. Then we heard he had a collapsed jugular vein. Sounded pretty scary since the jugular is pretty vital...
Fast forward a few days and we find out that LeMierre's or Lemierre's Syndrome is rare (less than .8 in a million) and it was coined in the early 1900's. Before antibiotics was almost always fatal. It's so rare that many don't test for it. It starts with a sore throat for many although for my brother in law, it simply started with swelling and we all know that a sore throat doesn't typically warrant antibiotics.
Lemierre's is a staph infection. How it starts looks pretty technical to me so I won't go into it here but if you get the disease you need heavy antibiotics for several weeks. my brother in law spent a week in the hospital and is now home and expects to be on his IV for 6-8 weeks.
Our neighbour joked that since he got such a rare disease, he should probably be told he's much less likely to win the lottery. I think we'll wait until he's fully recovered to break that news to him.
Hearing about the surfacing of rare illnesses and knowing that something seemingly minimal such as a small anaerobic bacterium that can suddenly almost kill you can happen out of nowhere is pretty frightening.
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Discovery Health Channel did a Mystery Diagnosis episode (303) called the "Deadly Sore Throat" with a patient history about Lemierre's Disease. This past week it ran twice on The Learning Channel. I personally know the case well, it was my daughter.
Since researching this disease for the past 22 months, we decided (me and my daughter with some encouragement) that the only effective way to try to make my daughter's near-death experience relevant was to try to make Lemierre's Disease more well known. I think doctors hesitancy to prescribe antibiotics for sore throats has contributed to its worldwide reemergence since the 1980s. I hope that more doctors became aware of this disease and more studies are done to determine why it's back and with a venegence.
From what I have found, I do not believe an infection caused by fusobacterium produces a positive reading on any strep test. So even though a patient is very ill and needs antibiotics, many doctors won't prescribe them for someone with an infection caused by fusobacterium in its early stages because they don't have a reading to indicate another bacteria-type infection is even there. One source indicated that 10% of all sore throats could be caused by fusobacterium.
So, if the infection continues to progress, by the time the infection is realized and the diagnosis is made, some pretty heavy-duty antibiotics (IV--full 6-8 weeks) are needed, that is if the patient survives to that point.
My hope is that every pediatrian and internist in the United States, heck the world, becauses informed about Lemierre's. And if some of the general public is familiar with it, too, all the better.
All the best to your recovering brother-in-law. He and my daughter are two of the lucky ones, they survived this forgotten disease. I wonder how many Lemierre's deaths could be going undetected today?
An update: for more Lemierre's Syndrome info, there is a Yahoo.com Lemierre's Syndrome Support egroup that offers a mother lode of info about the disease. Here's the link:
http://groups.yahoo.com/group/lemierres_syndrome/
Thank you so much for commenting and for posting that link. I have forwarded it all to my brother-in- law.
Cheers,
Dana
Here's another resource about Lemierre's: www.medrants.com -- your brother-in-law may want to check out the Aug 24 and 23, 2007, posts. A number of article hotlinks provide additional helpful info.
Dr. Robert Centor is an expert on sore throats and started raising awareness about Lemierre's Disease back in 2002 on his blog. His ideas about having further studies done on Fusobacterium necrophorum is something that every Lemierre's patient would probably agree is needed.
My 25 year old grandson, very healthy young man started with sore throat, so severe, he went to er and turned away. Three times he was turned away in one week. Second week, he was admitted to ER with 82/38 blood pressure, rapid respiration and 184 pulse. He had one week in ICU, then air lifted to larger hospital, and spent 5 weeks in ICU, testing, testing, he had infection in his blood, his kidneys shut down, his liver enlarged and not functioning, and the very worst kind of pneumonia. They diagnosed him with Graves Disease, more testing, and finally came up with Lemierr's Syndrome and cancelled out the Graves Disease. He has had the clot in his juglar for 5 weeks and as of today, he is still in hopsital and waiting for the clot to reduce. Just wanted to tell people, that it will affect other main organs. Judy
Judy,
Thank you for posting. Very frightening that the instances of this disease are dramatically increasing and yet so many go undiagnosed until it gets to the critical stage. Praying for the health of your grandson!
I just spoke with my brother in law who says that his health has completely returned to normal. When he went for his final follow up appointment the doctor told him he was a medical marvel. Because he'd been very physically fit working in construction labour, his body was in good shape to fight the illness.
When he became ill, the CDC (Center for Disease Control) in Ontario got involved. His diagnosis came between doctors in Georgetown and Brampton.
My friends just lost their 17 year old son this morning to le mierres. He had been in the hospital for a month.
"My friends just lost their 17 year old son this morning to le mierres."
Sincerest apologies for your loss. That's a tragic loss.
Did they treat it as Le Mierres from the start or had it progressed before they knew what it was?
This was my 17 yr old brother that passed away, they didn't realize it was lemierre's syndrome until he was already in the hospital for 1 week. They killed the bacteria however there was just too much damage to his organs.
check out his story @
lemierresyndromejrodgers.blogspot.com
Also some nurses and Dr's at the hospital where my brother was told my mom, people are dying from this disease they are just not aware that’s what it is until it is too late. They are putting Pneumonia or blood clots or something else on the death certificates. So I do not believe the 4 - 10% death rate the websites claim it is. I believe it is much higher!
i had this last year and was admitted to the er with a high fever and persisting sore throat. i was a very fit and healthy kid and came out of nowhere. first regular, then PICU for a week...very scary stuff!
My 16yr old daughter spent 6wks at sick kids/2wks of home care with this disease. It infected her blood, she had a bi-lateral pnumonia(damaged her lungs), enlarged liver, blood clot in her jugular vein. My daughter was on her death bed! I never knew Lemierres existed!
My heart goes out to the family of the young man that died.
I'm glad it sounds like your daughter is ok now. My brother in law fully recovered after LeMierre's but we now know how lucky he was.
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