Recently, 79 members of Facebook’s Lemierre’s Syndrome Survivor group (which has 813 members) answered a hastily written survey. I wrote this survey to get a rough idea of their experiences. Over the years I have probably talked with at least 10 patients or families about their disease. Two of the discussions occurred after the teenager had died. As I talk with patients or families I have learned much about the devastation that this syndrome causes. This informal survey did not have IRB approval, as it really represents some pilot data and information to inform the struggle to prevent this horrible disease.

I would like to publicly thank the LSS group for their ongoing interest in helping prevent others from developing this devastating syndrome/infection.

Here are the findings:

1. 1/4 of patients did not seek care for their sore throat. A few patients never had a sore throat (Lemierre syndrome can occur without pharyngitis. Most patients sought medical care within 3 days, but a few either waited a week or when they developed other symptoms.
2. 30% did not have a rapid strep test, and all the remaining patients had negative tests.
3. 57% took no antibiotic for the initial sore throat; 23% took a Zpak; 20% took a penicillin – very uncertain of these data as my question was likely confusing
4. Unlike Dr. Lemierre’s classic description, only 1/4 of patients reported initial improvement. The remainder has progressively worsening symptoms! This raises an important “red flag”. Pharyngitis should be improving over 3-5 days. Worsening ALWAYS requires further evaluation.
5. When the patient originally improved, the symptoms worsened usually within a couple of days, with one or two worsening a week later.
6. Lemierre syndrome patients have long hospitalizations with the average probably around 3-4 weeks. This is a financially costly disease with even worse health costs.
7. Many patients had intensive care stays, with some being a week or longer.
8. Patients received a variety of antibiotics. We have no consensus on the best treatment. Many patients received clindamyin or metronidazole (flagyl) or piperacillin/tazobactam (Zosyn) or penicillin alone or some other combination often including one of these drugs. There was also no apparent consensus on the duration of antibiotic therapy.

My thoughts –

1. We have no consensus on how to treat teenage and 20-somethings. Of interest, 60% of the patients did not receive antibiotics – this despite a concern that we prescribe too many antibiotics for sore throats and that reported prescribing rates are generally higher.
2. Some patients apparently developed the Lemierre syndrome despite penicillin – would need to better define these questions and investigate further.
3. We could use a standard recommendation for antibiotics and duration.
4. The survey does not include any data on anticoagulation, but anecdotally, many patients now are prescribed anticoagulation. We could use a standard recommendation here also.
5. Many physicians consider sore throats in these patients as routine and relatively unimportant. We have not done a good job of teaching the “red flags”. Physicians need to know when the sore throat is not longer “just a sore throat”.
6. I do need to develop a better survey, get IRB approval and collect more complete data. I should probably survey some ID physicians also to see if we can develop a treatment consensus.