More on the “forgotten disease”

Dear Dr. Centor,
Thanks for providing a important communication resource to so many medical interests and to those who had had personal medical experiences through this medical blog. Your helpful information on Lemierre’s Syndrome and providing my testimonial comment about my daughter’s experience in today’s posting was amazing.
Through efforts like yours and another example, the training efforts of Dr. David Arvold, Meredith’s internist at St. Luke’s Hospital in Duluth, more doctors are finding out about this rare but devastating disease. Dr. Arvold has done sessions at two Duluth hospitals and I believe Lemierre’s was only familiar to one of the doctors who attended, he had a 20-year-old sister who had Lemierre’s when he was in medical school in the 1970s.
Through your blog, I have also learned a more diplomatic way to describe what I’d term a “hiccup of medical incompetence” using the term “premature closure” of a diagnosis.
I’m going to keep looking at your site for future topics!
Thanks,
Kristie

As I read the story about Kristie’s 19 year-old, I can only wonder how this disease has been consistently overlooked. I do not think, Steve, that an immediate link should be drawn to Lemierre’s, but why are doctors not performing a simple throat swab or running a blood test for an edge on early diagnosis?

In February of 2004, I went for a voluntary surgery for tubal ligation. Within the following week, I had a sore throat, to the point of being unable to swallow. I went to the hospital and was told it was strep throat (no throat swab performed), given an antibiotic, and sent home. Four days after my first visit to the hospital, I returned, unable to talk or swallow due to the enlarged glands under my jaw.

Gradually, the swelling reduced so that I could function again. But within two weeks, I was running a 101-degree fever constantly. I made an appointment to be seen at a doctor’s office. The day I was to go to the office, my right lung collapsed. The doctor refused to see me.

I went to the hospital and was admitted. After an X-ray and CT scan, I was put into ICU. I had major lung surgery the following day, and was put into a medically induced coma for recovery. After 26 days, two rounds of different pneumonias, a 50 pound weight-loss, a tracheotomy and a DVT in my leg, I woke up.

All of my agony of that experience, nevermind the months of rehabilitation and the pain I live with today could have been averted with a throat swab.

(Dr. Centor, please feel free to pass on my e-mail address to Kristie’s mother.)

Dear Dr. Centor,
It’s now a year later from this first posting–and my daughter is now approaching her second Lemierre’s Syndrome anniversary. Not an occasion to mark with celebration–but certainly a time of somber realization that this disease continues to challenge its young victims (in particular) who are still tragically affected. As I learn more about other Lemierre’s patients, I realize that it is such a serious disease that many who have had it will mark their annual anniversaries for many years following their ordeal. My daughter will be 21 on August 25, so we are marking that milestone birthday with continuing gratitude for her survival.

Here are some important Lemierre’s updates that I want to share. Just reading that the Fleming Forum has an “At a Glance” posting on August 16, 2007, which suggests “Routine cultures of throat swabs for Fusobacterium necrophorum, especially in the young adult, should be considered.” It follows a sixth month audit by “Aames et al investigating the prevalence of the organism doing anaerobic cultures. A total of 1157 swabs were examined with F. necrophorum yielded from 57. The majority of isolates came from the 11-25 age group (77% of all swabs positive from F. necrophorum).”
Here’s the final article paragraph: “There is increasing evidence that route screening for F. necrophorum should be included in all throat swabs, especially in persistent or recurring infections. This would not be cost or time prohibitive although it would potentially delay laboratory reports.” And it furthers, “The authors propose a follow up study to assess the incidence in asymptomatic individuals and thus establish the carriage rate in the population.” To read further, here’s the link: Link 1

Last week I also came across of a newly published medical case report of a pregnant Lemierre’s patient. The article encourages more ob/gyn doctors to become familiar with Lemierre’s. This is a frightening thought: having this disease inflict pain and devastation two victims at a time! I also found two summer 2007 Lemierre’s patient postings, a 17-year-old girl in Illinois and a 26-year-old young mother in Utah. Both will hopefully recover but the younger woman seems to have some worrisome residual impairments. Here’s the link about the pregnant Lemierre’s patient report: Link 2

Here’s a site that documents dozens of Lemierre’s patients and their struggles as they support each other: Link 3 Some lived and others did not. There are some many poignant heart wrenching messages, especially in the earliest posts.

Also, new for August 2007, is an article in The American Journal of Medical Science entitled, “Fusobaterium Endocarditis in a Previously Healthy Young Adult.” The article’s abstract references the first reported case of monomicrobial F. necrophorum endocarditis in an adult. Here’s that link: Link 4
Even the Sunday comics’ pages won’t keep Lemierre’s out of my mind. Last Sunday’s Rhymes with Orange featured a picture of three black market organ sellers standing by their coolers marked hearts, kidneys and livers, counting their piles of money for recent sales. The fourth organ seller sits on a “tonsils” cooler, holding his head in disappointment because he hasn’t sold a thing. It made me think that tonsils (as the main culprit in Lemierre’s Syndrome) can cause life threatening illnesses, too, and maybe they just don’t get the attention and respect they deserve. Have you ever seen a photo of the bacteria responsible for Lemierre’s? Here it is: Photo

A medical reenactment of my daughter’s Lemierre’s experiences continues to appear on Mystery Diagnosis and is entitled “The Deadly Sore Throat” on The Learning Channel (TLC) and Discovery Health Channel. The next airings on DHC include Monday, Sept 17 at 10 pm; Tuesday, Sept 18 at 1 am and Sunday, Sept 23 at 6 pm (all Eastern Times given). If awareness of Lemierre’s can be raised a thousand people at a time—don’t we still have a long way to go!

An excerpt from How Doctors Think by Jerome Groopman, pg. 235 from a Dr. Coley who was speaking about the death of a young woman, Elizabeth Dashiell: “A disease that… can attack a person in perfect health, in the full vigor of early maturity, and in some insidious, mysterious way, within a few months, destroy life, is surely a subject important enough to demand our best thought and continued study.” It reminded me of Lemierre’s Syndrome excepting that Lemirre’s strikes faster—it can be days, not months, before it takes or nearly destroys a life.

My daughter may have had a near-full recovery but that’s still not good enough and something that I am just not willing to accept. She required two emergency brain surgeries (including a craniotomy) in five days, has some permanent facial numbness, struggles with continuing short term memory issues and temperament affects, and for that she’s considered really lucky? If an extra throat swab and a few extra moments in the laboratory could have helped her to avoid all that—it should be done!

Thank you very much for all your information and help during the past year, Dr. Centor. I believe the Lemierre’s Syndrome ideas and information that you offered several years ago in DB’s Medical Rants is similar to what the study that the Fleming report is now citing in the 2007 audit report. Why weren’t we listening?

My 15 year old daughter woke up on Saturday, March 3, 2007 with her throat extremely sore, glands extremely swollen, and her face was very swollen. We went to the doctor on Monday, March 5, 2007. The doctor suspected mono which was confirmed on Wednesday March 6th. She was vomitting and was very lethargic for the remainder of the week. I could see her pulse in the vein on the left side of her neck. We suspected she was dehydrated and called the doctor. We went to the doctor on Saturday, March 10th at noon. He thought the mono was looking better but agreed she was not drinking enough fluids. At this point she could barely walk, she was so week and was “out of it”. By the afternoon, she was very disoriented and was having trouble resting and getting comfortable. By midnight 3/10/07, we drove her to the emergency room. She couldn’t walk down the stairs and we had to pull her out of the car at the hospital into a wheelchair. Within an hour, she had been intubated and was being transferred to another hopsital in our area via Flight for Life. Her PSO2 levels were in the upper 40′s. We were told she probably wouldn’t survive the flight to the other hospital, but it was our only hope, as they could give her ECMO there. They had no idea how she got so terribly sick so fast. They never started her on the ECMO, thank God. She spent the next four and half weeks on a ventilator in the PICU. She was in a medically induced coma, and she had 6 chest tubes at one point to treat the pneumothoraxs that had developed from being on the ventilator for so long. They found she had mono, pneumonia, septic, influenza A, a staph infection and they suspected Lemierre’s. However, since they had started her on antibiotics in the emergency room, they couldn’t get accurate cultures. She was trached in order to be weaned from the ventilator. She spent two weeks in inpatient rehab (PT, OT, and Speech), followed by two months of day rehab. Not to mention how she struggled through the horrific effects of the drug withdrawal; all while being weaned from the ventilator. Three days before she was supposed to have her trach removed and leave the hospital, she had two seizures which the neurologist suggested was related to the drug withdrawal as she was completing the weaning from the methadone. She was still on oxygen and could barely walk from the bed to the toilet in her cramped hospital room. This was a beautiful, vivacious, and athletic teenager who spent her days with elderly stroke victims learning to walk, swallow, and remember things! This was devastating. By the grace of God, she survived and today is thriving! She is back to the beautiful vivacious and athletic girl she was 18 months ago! We are 100% convinced that she had Lemierre’s as suggested by one of her Infectious Disease doctors. She has a residual cough and some lung damage, but otherwise is healthy and thriving. We need to spread the word to pediatricians and doctors everywhere that Lemierre’s is out there and it is affecting young people everyday.