My true life story about Flesh Eating Bacteria, Necrotizing Fascitis
Jake George, Feb 6 2004
“You have an infection called, Necrotizing Fascitis and that is what is causing you so much discomfort,” the doctor said, as he asked the nurse to start another bag of IV antibiotics. Trying to remember where I had heard those words before, my brain started to kick in, remembering a news story about a man with flesh-eating bacteria who died last year. Necrotizing Fasciitis. The words went right to my stomach, which responded with a geyser of acid, souring it to the point I thought I was going to be ill.
Necrotizing Fasciitis (common name; flesh-eating bacteria) is a bacterial infection caused by group A Strep bacteria, which is the same bacterium that causes common Strep throat. Usually a course of oral or an inter-muscular shot, of antibiotics, will be enough to kill off the bacteria. Sometimes a very strong variety of Strep occurs. The one that crosses the line, from a simple case of Strep throat, to a potential killer and is known as the "flesh-eating bacteria.” A mixture of bacteria, or bacteria, other than group A strep, can also cause Necrotizing Fasciitis. The bacteria destroys soft tissue at the subcutaneous level, (fatty tissue under the outer layer of skin) and is often coupled with toxic shock syndrome, both are deadly alone, together they are even more so. When muscle is destroyed, it is called Necrotizing Myositis.
How I ended up in the hospital, hooked up to IV antibiotics, was quite unremarkable, for such a dangerous and remarkable disease. Living on Florida’s space coast, I never gave a thought to such an infection. I vaguely remembered a spider biting me on the left side of my neck. That evening the area where the spider bit me was slightly red. I gave no thought to infection let alone flesh-eating bacteria. I thought the disease only happened in areas of poor sanitation or with a person who did not care about personal hygiene. My perception of the disease almost cost me my life. It was error in judgment.
The bacteria can enter the body through an opening in the skin, quite often a very minor opening, even as small as a paper cut, a staple puncture, a pin prick, or in my case a bug bite. It can enter through weakened skin, like a bruise, blister, or abrasion. It can also happen following a major trauma or surgery, and in some cases, there appears to be no identifiable point of entry.
Day one, the bite had grown to the size of an almond under the skin of my neck. What drew my attention was that it was very painful to the touch. I showed it to my wife and she recommended I call the doctor in the morning in case it was infected. I decided to walk off the pain and let it take its course. That was a second error of judgment. If I knew the symptoms of flesh-eating bacteria, I would not have hesitated to contact my doctor.
The early symptoms (usually within 24 hours); are varied, but often include:
1. Usually a minor trauma or other skin opening has occurred (the wound does not necessarily appear infected).
2. Some pain in the general area of the injury is present. Not necessarily at the site of the injury but in the same region or limb of the body.
3. The pain is usually disproportionate to the injury and may start as something akin to a muscle pull, but becomes more and more painful.
4. Flu like symptoms begin to occur, such as diarrhea, nausea, fever, confusion, dizziness, weakness, and general malaise.
5. Intense thirst occurs as the body becomes dehydrated.
6. The biggest symptom is all of these symptoms combined. In general you will probably feel worse than you've ever felt and not understand why.
I exhibited the first three symptoms. It felt as though someone had taken a hot nail and pounded it into the side of my neck. The burning and throbbing made normal activities almost impossible.
Day two, the almond had a major change in shape and size. It was larger and the lump was now visible on the side of my neck, it hurt worse than the day before. By late afternoon, I took my wife’s advice and called the doctor and was given an appointment for the following morning. The rest of the day was spent on over-the-counter pain pills that did not dull the pain in the least.
Day three, I saw the doctor. The lump was the size of a small peach. Besides the pain and lump there were no other symptoms. He put me on an oral antibiotic and said if it got worse to call him or go to the Emergency Room. Unaware of the danger, the symptoms had changed into the advance stage. The advanced symptoms (usually within 3 – 4 days) are:
1. The limb, or area of body experiencing pain begins to swell, and may show a purplish rash.
2. The limb may begin to have large, dark marks, which may become blisters filled with blackish fluid.
3. The wound may actually begin to appear necrotic with a bluish, white, or dark, mottled, flaky appearance.
Experiencing only the first symptom from the advanced stage I was still ignorant of the immediate danger my life was in. The lump had continued to grow over the past two days and the swelling was very noticeable. Also the pain was increasing by the hour. What was a small peach sized lump on Friday became grapefruit sized by Sunday (day five). The pain was quite intense but I held off calling the doctor until Monday morning.
I called my doctor on the morning of day six. I was told to come right in. At that point things happened fast. He called for a surgical consult and a CT of the neck. I went for the CT and saw the surgeon. The surgeon decided I needed to see an Ear, Nose and Throat (ENT) specialist. I was given a shot of antibiotics and sent home to see the ENT doctor the next morning. Through all of this I did not have a fever so they felt it was safe to wait. Necrotizing Fasciitis is often missed in diagnosis if only one or two of the symptoms are present. Since I only had pain and swelling as well as being on oral antibiotics for five days it was thought to be an abscess of the saliva gland.
On the morning of day six I saw the ENT doctor. The CT just showed a mass of white in my neck indicating infection. The doctor could not make out any detail due to the extensive infection. I was admitted to the hospital that afternoon. By now I started to exhibit advanced stages of Necrotizing Fasciitis.
Two different IV antibiotics (Vancomycin and Maxiprime) were administered every six hours. The doctor took a black marking pen and drew the outlines of the infection and left instructions to mark the new boundaries every hour. I was finally given a pain pill that helped to dull the pain to some degree. As the day wore on the infection stopped spreading but the lump was not increasing in size until it was the size of a cantalope. It was as if the infection were dammed up in the lump. It broke loose. When it did, it spread under my skin expanding into the rest of my neck, down onto my chest, past my sternum, and around the side of my head to the back. There was still no fever, which surprised the doctors.
After eight bags of IV antibiotics the next morning arrived. The ENT came in. He was pleased to see the outward appearance of the infection had gone down. He was not prepared for the extent of its travel. When he pulled down my gown he said, “Wow!” It was then that he told me he suspected it was Necrotizing Fasciitis and that I may need surgery, on little notice, if it spread any faster; if I spiked a fever or my body functions showed increased signs of shutting down. My liver enzymes were already high when I was hospitalized and they continued a slow climb, indicating my liver was on the verge of shutting down. Blood draws increased to every four hours. With the spread of the infection (at its worse it was expanding one and a half inches an hour), is when the I started to experience the critical symptoms (usually within 4-5 days):
1. Blood pressure will drop severely.
2. The body begins to go into toxic shock from the toxins the bacteria are giving off.
3. Unconsciousness will occur as the body becomes too weak to fight off this infection.
The next twenty-four hours went by in a blur. They changed my pain medication and I was starting to get some relief from the pain. With pain relief came sleep. I woke up only to eat, use the restroom or for blood draws. Now that I know what the critical symptoms were I am sure my extreme exhaustion was caused by the change in pain medication and my body becoming too weak to fight the infection. The doctor said my lack of fever indicated that my body was not trying to fight off the infection on its own and depended entirely on the IV antibiotics. The ENT arrived about 8 pm and informed me I was scheduled for surgery in the morning. He gave me all the dire warnings and potential dangers, which were immense.
The surgery would entail a lengthwise cut from the base of my left ear, across my lower neck, and upward to the base of my right ear. They would then go in and start to remove dead tissue and clean out as much infection as they could reach. I asked how they would close the incision with so much infection. He replied that they would leave the incision open and packed with gauze, soaked in hydrogen peroxide. Three times a day they would remove the gauze, remove dead tissue and repack it with new gauze. The body would have to heal from the inside out to be effective. The follow up care would be at a long-term health care facility and I could plan on being there for about three months. Once the infection was done and the tissue in the incision was healthy they would close up the wound if possible or apply skin grafts if they could not. I was mentally prepared for the surgery. What I was not prepared for would be a move to a long-term care facility to dress my wound and wait until it could be closed up.
That evening all my dearest friends came by the hospital to see me. The ENT had just left and I was digesting the news. My jovial self was just not there and my friends noticed. Instead they saw a man who looked like a weather map with contour lines all over my face, neck and chest. I barely had enough energy to walk to the waiting room to sit and talk with them. One of them did not tell me until almost four months later that when he got home he told his wife that he expected to be going to my funeral by the weekend. I looked that bad.
I was a lucky man I escaped the planned surgery. At 10 pm the doctor came back in because the blood culture tests identified which bacteria was responsible. They changed out my IV for a line that went in a vein at my elbow, to right above my heart and changed antibiotics. They switched to a bag every two hours and he said prayer might help. Next morning the infection had receded almost three inches. I was left on IV antibiotics all the rest of that day and night. My liver enzymes started to improve as well so I was released the following morning with a long-term oral antibiotic follow up.
I continued to get better and after about six months most of the swelling had gone away. I was left with a slight discoloration under my chin and on my neck. I was one of the lucky ones. I had escaped the surgery, he had predicted I would need. Normally surgery is needed to remove the dead tissue followed by many more to clean the wound and close it if possible, and if not to graft skin over the wound to close it.
Since I have had a bout of flesh-eating bacteria, I did some research on the disease. I found the National Necrotizing Fasciitis Foundation, and obtained the information on its causes, symptoms and treatments (sited with their permission). Their quick facts, about Necrotizing Fasciitis, were invaluable in writing this article.
When should you seek medical attention?
Any time all of the early symptoms are present, go to a doctor at once, and insist that this infection be ruled out. The vast majority of cases are misdiagnosed; people have been told that they had fallen, when they didn't, they have had casts put on bones that were not broken, have been given Tylenol for flu and been told to come back the next day; they have been told they have an ingrown toenail, they've been told they have arthritis; they've been accused of burning themselves...many of these people have gone back to the hospital two days later and died. Insist that this be ruled out if you have all of the early symptoms.
Why are so many cases of NF misdiagnosed?
Because the beginning symptoms look like so many other minor afflictions. None of the symptoms are exclusive to NF, and until the patient is so ill, that they are critical, many health care workers don't consider NF. Although the disease is on the increase worldwide, it is still considered uncommon, so many emergency rooms may never have seen a case before.
How rare is NF?
The statistics vary, and are not entirely accurate. A 1996 CDC report estimates from 500 to 1500 cases per year of necrotizing Fasciitis of which 20% die. In 1998 the NNFF estimates the figure to be higher (based on cases reported to us measured against the general population with access to the Internet, which is how all of the cases we get are reported)
How is NF treated?
NF must be treated in the hospital with antibiotic IV therapy and aggressive debridement (removal) of affected tissue. Other treatments will take place depending upon the level of toxicity or organ failure being experienced by the patient. Medications to raise blood pressure, blood, and a new medicine called intravenous immunoglobulin (IVIG) are also used. A hyperbaric oxygen chamber is sometimes used in certain cases involving a mixed bacterial infection.
What's the likely outcome?
Anywhere from minimal scars to death and everywhere in between. For those lucky enough to survive most often at least some removal of skin is required. Often this requires skin grafting. Amputation is sometimes needed to remove the affected limb. Legs, hands, fingers, toes, arms, have all been sacrificed to save the life of NF patients.
What can decrease the risk of death and disfigurement?
Two words: prompt diagnosis!
What's being done to help promote prompt diagnosis?
The NNFF's mission is to educate for public awareness, recognition of symptoms and preventive measures; to offer resources; advocate research; and to offer support for those affected by Necrotizing Fasciitis. We hope that through projects in which we couple with medical professionals, public service campaigns, and media exposure, we can lessen the occurrence of the severe consequences of NF.
Due to elevated liver enzymes I had to watch what medications I took for the next six months. I could not take any medication that metabolized in the liver to give the liver time to recover.
I did run into two residual problems after I was treated for NF. One was my voice had changed. I went from a normal run of the mill voice to one that sounded as if I had gravel stones for vocal cords. My voice was harsh and very rough. I went through almost three months of voice lessons to regain a useful voice. The voice lessons helped and I now have a voice about two octaves higher than before, with just a hint of gravel in it. The second was that the infection affected a nerve that went to my heart, causing the right ventricle to compress, slightly slower than it should. However, a visit to a cardiologist confirmed that it was not a major problem. I will show slightly abnormal EKGs from now on but no long-term problems are anticipated.
As a Necrotizing Fasciitis survivor, I cannot express enough a prompt diagnosis and treatment of this debilitating disease. My combined errors in judgment of not promptly seeking medical care could have had a much worse outcome. For more information on Necrotizing Fasciitis, contact the National Necrotizing Fasciitis Foundation, via their web site at www.nnff.org.