U.S. CitiesCity-Data Forum Index
Go Back   City-Data Forum > General Forums > Health and Wellness
 [Register]
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
View detailed profile (Advanced) or search
site with Google Custom Search

Search Forums  (Advanced)
Reply Start New Thread
 
Old 05-03-2013, 06:36 AM
 
Location: Oxford, England
13,035 posts, read 20,407,188 times
Reputation: 19758

Advertisements

I was diagnosed with Lemierre's Syndrome 6 weeks ago whilst in France and spent my vacation on an agressive antibiotics drip in Hospital. Apparently it is a very rare condition affecting less than one in a million but I was wondering whether anyone else on C-D has ever been diagnosed with it or knows anyone who has ?

Basically it is a very dangerous bacterial infection which starts in the tonsils as a normal sore throat often does, descends into the Thyroid Glandular area and enters the Jugular blocking it completely. Many people end up with severe pulmonary complications and mortality rates are still very high as it is unknown to most Medical Practitioners ( including a lot of ENT specialists) and is often misdiagnosed as Strep throat .


I have so far been on extremely high doses of antibiotics and my Jugular is still completely blocked. I am having another Doppler scan next week which I hope will show it is starting to unblock but so far I am severely ill, exhausted, weak and breathless within seconds of doing anything. I was told I was extremely "lucky" to be caught at an earlier stage and had a pretty close shave apparently.

I am trying to find out what experiences other sufferers might have had, and also hoping to raise awareness of this potentially deadly illness . My symptoms were a severe sore throat , difficulty in swallowing, feeling exhausted and weak, hard swelling on the left side of my throat ( almost like a tumour) and feeling as though I had the flu. Because it was only on one side and very unusual compared to "normal" sore throats I did go to see a GP in France who referred me immediately to the Emergency room where I had different blood tests , blood and throat cultures and a CT scan . The fact I was diagnosed promptly and the problem identified might just have saved my life.


I would simply urge anyone with similar symptoms to PLEASE mention Lemierre's Syndrome to your Physician and have it checked out. Too many people have died because it is so rare it "flies under the radar".


I still have weeks of antibiotics to look forward to, many tests and scans and it will probably take me months to recover. There is still a small chance a small blood clot could enter my heart,lungs and brains but I am supposed to be mostly on the safer side of this danger now. Many people have not been so lucky and have had to have their Jugulars taken out and many other surgical procedures. Many have died.
Reply With Quote Quick reply to this message

 
Old 05-03-2013, 06:57 AM
 
Location: Bucks, UK
523 posts, read 3,058,142 times
Reputation: 1116
very interesting indeed - had never heard of the condition, and i suppose that isnt really surprising given that apparently it is nicknamed "the forgotten disease".

wishing you a speedy and uneventful recovery.
Reply With Quote Quick reply to this message
 
Old 05-03-2013, 08:18 AM
 
Location: Oxford, England
13,035 posts, read 20,407,188 times
Reputation: 19758
Quote:
Originally Posted by kronenborg View Post
very interesting indeed - had never heard of the condition, and i suppose that isnt really surprising given that apparently it is nicknamed "the forgotten disease".

wishing you a speedy and uneventful recovery.
Thanks. I'd never heard of it, my GP had never heard of it and the Infectious Disease Specialist I saw in the JR Hospital in Oxford had seen four cases in his 40 year career which is pretty scary really....

It has certainly given me quite a fright and I now want everyone I know to be aware of the symptoms "just in case". So easy to dismiss as a bad cold and so dangerous.
Reply With Quote Quick reply to this message
 
Old 05-09-2013, 07:15 AM
 
3 posts, read 7,212 times
Reputation: 20
Hi Mooseketeer,

I had Lemerrie's 5 years ago this month and was also lucky to have it caught so quickly. It is very rare, but there is a big group of us on facebook who have all had it. So go on facebook and check out the group called "Lemierre's Syndrome Fighters and Survivors". Wishing you a speedy recovery! I too was unable to do much in the month after hospital but am happy to say I am fully recovered with no side effects! Hope to see you in the facebook group.
Reply With Quote Quick reply to this message
 
Old 05-09-2013, 08:02 AM
 
Location: North Texas
21,780 posts, read 27,662,423 times
Reputation: 23079
Quote:
Originally Posted by Mooseketeer View Post
I was diagnosed with Lemierre's Syndrome 6 weeks ago whilst in France and spent my vacation on an agressive antibiotics drip in Hospital. Apparently it is a very rare condition affecting less than one in a million but I was wondering whether anyone else on C-D has ever been diagnosed with it or knows anyone who has ?

Basically it is a very dangerous bacterial infection which starts in the tonsils as a normal sore throat often does, descends into the Thyroid Glandular area and enters the Jugular blocking it completely. Many people end up with severe pulmonary complications and mortality rates are still very high as it is unknown to most Medical Practitioners ( including a lot of ENT specialists) and is often misdiagnosed as Strep throat .


I have so far been on extremely high doses of antibiotics and my Jugular is still completely blocked. I am having another Doppler scan next week which I hope will show it is starting to unblock but so far I am severely ill, exhausted, weak and breathless within seconds of doing anything. I was told I was extremely "lucky" to be caught at an earlier stage and had a pretty close shave apparently.

I am trying to find out what experiences other sufferers might have had, and also hoping to raise awareness of this potentially deadly illness . My symptoms were a severe sore throat , difficulty in swallowing, feeling exhausted and weak, hard swelling on the left side of my throat ( almost like a tumour) and feeling as though I had the flu. Because it was only on one side and very unusual compared to "normal" sore throats I did go to see a GP in France who referred me immediately to the Emergency room where I had different blood tests , blood and throat cultures and a CT scan . The fact I was diagnosed promptly and the problem identified might just have saved my life.


I would simply urge anyone with similar symptoms to PLEASE mention Lemierre's Syndrome to your Physician and have it checked out. Too many people have died because it is so rare it "flies under the radar".


I still have weeks of antibiotics to look forward to, many tests and scans and it will probably take me months to recover. There is still a small chance a small blood clot could enter my heart,lungs and brains but I am supposed to be mostly on the safer side of this danger now. Many people have not been so lucky and have had to have their Jugulars taken out and many other surgical procedures. Many have died.
I had never heard of this disease; I'm sorry you had to suffer with it, it sounds awful. I'm glad to hear you are on the mend; I hope you make a full and complete recovery!
Reply With Quote Quick reply to this message
 
Old 05-10-2013, 02:50 AM
 
Location: Oxford, England
13,035 posts, read 20,407,188 times
Reputation: 19758
Quote:
Originally Posted by NewPoster111 View Post
Hi Mooseketeer,

I had Lemerrie's 5 years ago this month and was also lucky to have it caught so quickly. It is very rare, but there is a big group of us on facebook who have all had it. So go on facebook and check out the group called "Lemierre's Syndrome Fighters and Survivors". Wishing you a speedy recovery! I too was unable to do much in the month after hospital but am happy to say I am fully recovered with no side effects! Hope to see you in the facebook group.

Hi, my first other Lemierre's sufferer ! Lovely to meet you. I am so glad you are fully recovered . Do you have any residual problems at all ?



I am not on Facebook but have looked at the "Lemierre's Syndrome fighters and survivors'" page on Hubby's page. I must admit some of the photos really freaked me out, especially the person who had their Jugular taken out....

I had another Doppler scan on Wednesday and the Jugular is still mostly blocked though there is a tiny bit of blood flow which I am hoping is progress of sorts.

I am still on super strong doses of Augmentin and Amoxicillin which is making me feel absolutely wretched and I think my blood circulation is starting to suffer a bit now with tingles in one hand if I stand too still.

Unfortunately because I feel so weak and exhausted I find it difficult to do pretty much anything. I get breathless just making a cup of tea at the moment which is pretty bad and not great for my moral either... :

I am going to do a couple of minutes an hour on my exercise bike to get the blood flowing and am trying to get up and move a bit but I have hired a wheelchair as walking at all is really quite an ordeal at the moment.

I kept being told how "lucky" I was, I can't say I feel that lucky ! I suppose considering how dangerous and lethal it can be I should be grateful. Considering my medical history ( I had Leukaemia for 10 years and now suffer from Chronic Fatigue Syndrome as well as other health issues), I feel I have been rather hammered with bad "luck" though. And until I was 21 you could not have had a healthier,fitter, stronger and more athletic woman....Aaarrrrrrrrgh !

I hate being ill, but I have to say this gave me and my Husband quite a fright.
Reply With Quote Quick reply to this message
 
Old 05-11-2013, 09:22 AM
 
3 posts, read 7,212 times
Reputation: 20
Hi again,

Sorry to hear you are having such a rough time right now. I was definitely experiencing some of that post-hospital. I was barely able to walk for a few minutes without being exhausted and remember finding this very upsetting. My doctor explained that it was all because of my blood levels and low hemoglobin and that once that came back up I'd have more energy. She was definitely right. I'd say it took me 3 months to feel fully back to myself, but I have no residual symptoms now which is amazing.

I know a lot of people on the group had a lot more residual problems so 5 years later I do feel lucky. But I definitely didn't feel lucky at the time. If you have other specific questions the people on the group are really great at giving advice based on what they went through. But hopefully in time you will recover as well as I have!
Reply With Quote Quick reply to this message
 
Old 05-12-2013, 03:54 AM
 
Location: southern born and southern bred
11,749 posts, read 12,941,923 times
Reputation: 17205
Quote:
Originally Posted by Mooseketeer View Post
Hi, my first other Lemierre's sufferer ! Lovely to meet you. I am so glad you are fully recovered . Do you have any residual problems at all ?



I am not on Facebook but have looked at the "Lemierre's Syndrome fighters and survivors'" page on Hubby's page. I must admit some of the photos really freaked me out, especially the person who had their Jugular taken out....

I had another Doppler scan on Wednesday and the Jugular is still mostly blocked though there is a tiny bit of blood flow which I am hoping is progress of sorts.

I am still on super strong doses of Augmentin and Amoxicillin which is making me feel absolutely wretched and I think my blood circulation is starting to suffer a bit now with tingles in one hand if I stand too still.

Unfortunately because I feel so weak and exhausted I find it difficult to do pretty much anything. I get breathless just making a cup of tea at the moment which is pretty bad and not great for my moral either... :

I am going to do a couple of minutes an hour on my exercise bike to get the blood flowing and am trying to get up and move a bit but I have hired a wheelchair as walking at all is really quite an ordeal at the moment.

I kept being told how "lucky" I was, I can't say I feel that lucky ! I suppose considering how dangerous and lethal it can be I should be grateful. Considering my medical history ( I had Leukaemia for 10 years and now suffer from Chronic Fatigue Syndrome as well as other health issues), I feel I have been rather hammered with bad "luck" though. And until I was 21 you could not have had a healthier,fitter, stronger and more athletic woman....Aaarrrrrrrrgh !

I hate being ill, but I have to say this gave me and my Husband quite a fright.
just found this,Moose....so sorry you've been so ill. Wishing you a speedy and complete recovery.
Reply With Quote Quick reply to this message
 
Old 05-12-2013, 04:08 AM
 
Location: Mayberry
30,474 posts, read 11,872,045 times
Reputation: 67680
Hi Moose, so sorry to hear this, it doesn't sound fun at all. I'm hoping that you recover quickly! I've heard of this illness, but have no first-hand experience with it.
Reply With Quote Quick reply to this message
 
Old 05-13-2013, 07:16 AM
 
Location: Oxford, England
13,035 posts, read 20,407,188 times
Reputation: 19758
Quote:
Originally Posted by NewPoster111 View Post
Hi again,

Sorry to hear you are having such a rough time right now. I was definitely experiencing some of that post-hospital. I was barely able to walk for a few minutes without being exhausted and remember finding this very upsetting. My doctor explained that it was all because of my blood levels and low hemoglobin and that once that came back up I'd have more energy. She was definitely right. I'd say it took me 3 months to feel fully back to myself, but I have no residual symptoms now which is amazing.

I know a lot of people on the group had a lot more residual problems so 5 years later I do feel lucky. But I definitely didn't feel lucky at the time. If you have other specific questions the people on the group are really great at giving advice based on what they went through. But hopefully in time you will recover as well as I have!
I am glad you had no residual effects, that is such a relief. I was hospitalised again at the week end and kept under supervision for only 1 night. I had a slight swelling in the lymph node of the neck again and breathlessness even at rest as well as tingling in the hands.

All my tests came back normal apart from the Jugular still being blocked but the Consultant recommended I have an open biopsy of the lymph nodes under general anaesthetics which I am certainly not keen on and might still reject.

I am told it is to see whether the nodes are simply reacting to the infection in the jugular or something else but considering I have Lemierre's it stands to reason the swelling is because of the infection "right next door" IMO. I assume they are just being thorough but I might just have an aspiration biopsy first as I really do not want an open biopsy unless absolutely necessary. Considering the side effects can be permanent nerve damage I think I prefer to take a risk for a short while.

Breathlessness really sucks, I had chronic fatigue before so was not exactly in the pinkest of health but at least I could walk upstairs without sounding like an asthmatic Gerbil !
Reply With Quote Quick reply to this message
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.

Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.


Reply
Please update this thread with any new information or opinions. This open thread is still read by thousands of people, so we encourage all additional points of view.

Quick Reply
Message:

Over $104,000 in prizes was already given out to active posters on our forum and additional giveaways are planned!

Go Back   City-Data Forum > General Forums > Health and Wellness
Similar Threads

All times are GMT -6.

2005-2017, Advameg, Inc.

City-Data.com - Archive 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32 - Top