Amy Elifritz was 20 years old when she died of TSS on 13th June 2010 in USA. Her mother, Lisa, has spent the last six months researching TSS and consulting Dr. Philip Tierno, the prominent, independent, specialist for TSS.
We are Please to post her report, in memory of her beautiful daughter. (PDF reader required)
KATIE OF GUILDFORD HAD TSS TWICE
My name is Katie and I am 15. I had been using tampons for at least a year before I got toxic shock. I had read the warning on the packet about it, but it said that the disease was rare and I thought it couldn't possibly happen to me! I hadn't read about the symptoms of Toxic Shock and wouldn't have connected it to what I had, even though they match nearly exactly.
The first time that I got toxic shock was on holiday in Spain in December 2008. The night before I was taken ill, my family and I played tennis and I felt fine! In the days before, I had been on my period and had been using tampons. In the early hours of the morning I was sick and fainted every time I tried to get up - I couldn't even get to the toilet by myself. After a day of this, my parents called the Spanish doctor and he referred me to the hospital, as my temperature was very high. An ambulance was called and I had to be carried downstairs by my Dad, as I couldn't walk without fainting. Once in the hospital, I was admitted to a ward. As well as the sickness and fainting, I suffered acute stomach pains, diarrhoea and I also had a rash around my eyes and all over my body that the Spanish doctors claimed was sunburn - but was actually another symptom of toxic shock. I don't remember much about the few days I spent in the ward as I was delirious from the fever, but I wasn't allowed to drink and I was so thirsty - parts of my lips and tongue were just peeling off. The pain medication was sometimes late, and I remember being in awful pain from having hiccups. My liver failed and my skin turned an orange colour - I had no idea how sick I was, as I joked about finally getting a good tan! I had an intravenous line (IV) in my arm and got phlebitis from it, so they had to change it. There weren't enough nurses in the ward and my Mum had to care for me a lot. As I couldn't get up, every time I had diarrhoea, she sorted out my bedpan and cleaned up - when I was sick as well.
Finally, I was diagnosed with septicaemia which had caused liver and kidney failure (instead of just a tummy bug as they assumed when I was in the ward) and I was taken to Intensive Care. They inserted a central line and a catheter and also put me on oxygen, as my lungs were weak and had fluid in. At this point, my brother had to fly back to England by himself, as my parents stayed in Spain with me. The doctors said my condition was stable but critical, and there was a chance that I may have died. However, they changed my antibiotics, and the new ones finally started to work and my condition improved. After 4 days, I was readmitted back into the ward. I could now walk the distance to the toilet and I was starting to eat food again. On Christmas Day my parents wheeled me (I needed a wheelchair for longer distances) down to the hospital cafeteria!
I spent a week in the ward, until I was well enough to fly back to England with a medical escort. When I arrived back in England, they removed my central line and discharged me from hospital. At home, I worked on getting my strength back. The skin on my legs and arms began to peel, followed by the skin on my hands and finishing with the soles of my feet. It took about a month for my skin to return back to how it was before I was ill. Also, a little bit more hair than usual would come out when I showered and combed it through; although not a large amount - my hair was quite thick anyway and you couldn't see the difference.
We didn't find out what caused the sepsis in Spain - all the blood tests came back negative and we were told it was food poisoning. After being sick over Christmas, I went back to school although was off for two weeks due to severe tonsillitis exactly a month after I was ill the first time. Another month later, I was on my period again and still using tampons (as directed on the packet). I was sick continuously with a bad headache, on the Sunday, and thought I had simply picked up another bug. However, in the evening, I felt much better and decided to rest off school, but my parents went to work. Unfortunately in the morning I felt much worse and had a sore throat, and felt dizzy, although I wasn't sick. My eyes were also very red. When my mum came home from work she took my blood pressure (which was extremely low) and temperature (which peaked at 40 degrees). That evening, we went to see the GP who decided to be cautious (given my history and my Mum insisting!) and sent me to hospital. At the hospital it was the first time toxic shock was mentioned, the doctors acted really quickly, an IV was inserted and I was given lots of fluids, but my blood pressure wasn't rising, and my kidneys weren't working properly. They transferred me to Evelina's Intensive Care in London, inserting a central line so strong antibiotics could quickly reach my blood stream, along with some drugs that helped my circulation and giving me an oxygen mask as my lungs had fluid in. Here they also inserted an arterial line to continuously monitor my blood pressure. I spent a day there, and my blood pressure was soon back to normal and so was transferred back to a ward in my local hospital, where I spent a few days before I was discharged.
Now, a week after being discharged for the second time, I am still recovering and have noticed some of the same after effects as last time - my skin is beginning to peel and a few more hairs than usual have been falling out. I am glad now that I know the real reason for being so sick both times - and definitely won't be using tampons again. I think that I am very lucky to still be alive - having survived toxic shock twice, and I really hope that other people will be more aware of the risks and quicker at spotting the symptoms than I was!
USA PRESS AGENCY FILES REVEAL MORE CASES OF TOXIC SHOCK SYNDROME - (1ST JANUARY 2009)
(USA readers are invited to add more detail if they know about these TSS cases).
KELLY NEFF, a 16 year old student at Lincoln-Way East High School in Illinois had been using a new sports-type brand of tampon for the first time shortly before she died of Toxic Shock Syndrome in August 2007. Kelly's uncle Carl was spokesmen for the grieving Neff family and said that Kelly had been experiencing flu-like symptoms since Saturday. She started her period on the previous Wednesday and her mom became concerned on Monday and tried to make a doctor's appointment, but the doctor had no free space. Kelly's parents took her to Loyola University Medical Centre in Maywood, but she died suddenly.
DANIELLE GRAVES, an 18 year old college student from Iowa, thought that the hamburger she had eaten had given her stomach ache, so she went to bed early. She woke up that evening with vomiting, diarrhoea and a fever, took some medication and went back to bed. This was a Saturday in December 2005. When she woke up the following afternoon she was worse and her temperature had soared to 104 degrees. She was taken to the local hospital where staff noticed her tampon and found very low blood pressure and a red rash. By late afternoon, Danielle was on a helicopter to Mercy Medical Centre in Des Moines. On Monday she was pale and unconscious, hooked to a ventilator with several IVs attached. Her lungs and kidneys failed and she was revived from 3 cardiac arrests before succumbing to the fourth. She died on the Tuesday afternoon from staphylococcal toxic shock syndrome.
KOURTNEY MATTHEWS from San Jose, California, was 16 when she died of tampon-related Toxic Shock Syndrome in November 2004. It started with flu-like symptoms and within 24 hours Kourtney was dead. Her mother Tracy said "Since nobody's been talking about TSS for years, you think tampons are safe. I'm never going to see her get married and have kids. It's really hard when you think that all she was doing was taking care of her personal hygiene".
JAMIE ZIMMERMAN, a high school student almost died of TSS when she was 17 years old in April 2002. One Saturday night she went to a party with friends. She was on her period, so she wasn't feeling great to begin with. Things got worse when she started to suffer from a headache, nausea, chills and an upset stomach. By 9 pm she asked her friends to take her home where she was violently sick. Her mother gave her some medication and she went to bed. Two days later she was in a coma and had to be rushed to hospital.
LISA MENGARELLI from Illinois, was 18 in 1997, when she nearly died from a mystery disease, later diagnosed as an extreme case of Toxic Shock Syndrome. Then 8 years on, in October 2005, Lisa was diagnosed with osteoporosis. "I wasn't shocked at all", said Lisa, "the medication that I have to take puts me at higher risk of brittle bones. I'm at the point where another chronic condition is not unexpected". Lisa also suffers from Raynaud's phenomenon, which is a circulatory disorder and Lupas, which is a chronic inflammatory disease characterised by fatigue and skin rashes. Lisa said that although she is only 26, she feels like she has the body of an 80 year old. It is not reported if Lisa's condition is due to her suffering from Toxic Shock Syndrome.
DOLORES SHEA, aged 30, died of Toxic Shock Syndrome in October 1989 after suffering flu-like symptoms. Four years on, in July 1993, a Chicago newspaper reported that a Santa Anna, (California) jury failed to find the tampon manufacturer (Kimberly-Clark Corp) responsible for her death, but the judge overturned their verdict. This ruling means a retrial in the wrongful death lawsuit brought by Dolores's husband Michael.
DONNA MARIE DAVIS, age 31 from Illinois, died of TSS in 1979. Her family finally got permission to sue the tampon manufacturer (Johnson and Johnson) which took place in January 1990. After an 11 hour deliberation, the jury ordered the company to pay $905,000 in compensation.
MEGHAN DURAN, a 14 year old student, about to start at Mira Costa High School in Manhattan Beach, California, suffered from Toxic Shock Syndrome in September 2004. She had flu-like symptoms and a rash, and two days later became critically ill. Although she has now recovered, it was reported that she still gets tired very easily. She said that she had never heard of TSS. Her mother said "with something this serious and this dangerous, there should be a more prominent warning on the outside of the box".
TRICIA ZAILO, a university student in Michigan, died of Toxic Shock Syndrome in December 2000. She was using a tampon and suffered from a fever over 102 degrees, vomiting, diarrhoea and sunburn-like rashes.
LESLEY HUDSON, age 33 from USA, survived Toxic Shock Syndrome in May 1996. "It came on suddenly" she said, "fever, diarrhoea and swollen red hands. I couldn't even get out of bed. On the third day, I was opening a new pack of tampons and decided to look at the warning leaflet. My symptoms matched those on the leaflet. I called my doctor who advised me to get to the Emergency Room right away. I was hospitalised for 4 days, before being fit enough to come home. It took a long time to completely recover though".
AMY PAVELL, a teenager from Naperville, Illinois, nearly died from Toxic Shock Syndrome in July 2003. One morning she wasn't feeling too well, but put it down to being on her menstrual cycle. By late afternoon she was exhausted and couldn't hold down sips of water. By evening, her family rushed her to Edward Hospital with a temperature of 104 degrees. The doctors identified very low blood pressure and recognised that Amy had TSS and treatment began. She was kept in for a week before being allowed home.
BETTY O'GILVIE from Kansas, died a horrible, bizarre death in 1983. A raging infection caused by a tampon made by International Playtex, resulted in Toxic Shock Syndrome. In December 1996 her family sued the company and the jury awarded them $1.5 million in compensation and $10 million in punitive damages. After lawyers' fees and expenses were deducted, the O'Gilvie family received $4.96 M of those punitive damages and the Internal Revenue Service is also going to get a big portion of it.
In LOS ANGELES COUNTY in March 2005, it was reported that five cases of Toxic Shock Syndrome had been discovered in teenage girls from the previous September. All of the teenagers at UCLA and Miller Children's hospital were critically ill, but survived. However, a 16 year old girl in Santa Clara County died in November 2004 from probable TSS, according to the county's medical examiner.
The CALIFORNIA DEPARTMENT OF HEALTH said that in the state, eight people had died from Toxic Shock Syndrome in 2002 and that there were four deaths in each of the previous three years.
The JOURNAL OF CLINICAL MICROBIOLOGY in June 2004 found that cases of TSS in one region of Minnesota had more than tripled from 2000 to 2003.
CLAUDIA FROM GLOUCESTERSHIRE HAD TSS IN JANUARY 2008
Claudia was in Canada on a ski course, training to be a ski instructor when she got Toxic Shock Syndrome. Her first symptom was itching and she assumed it was a yeast infection, although she hadn't had one before. That was on the Friday and she had started her period on the Thursday. Over the weekend Claudia felt that it wasn't too serious and there was less itching, however it was very red and painful. Then on the Monday she began feeling ill and then at about five o'clock she was sick. She kept on being sick and then had diarrhoea whilst being sick. She had no control. Claudia says "it's all a bit of a blur, but I slowly became unconscious. I can remember certain things like I couldn't keep any drinks down. But the problem is, these symptoms are exactly like flu and that is where the danger is. Everyone thought I had the flu"!! After three days of being in bed Claudia was taken to a clinic. She could not really move herself, as her muscles were non existent.
Luckily, the Doctor at the clinic said "get this girl to hospital now" as they knew what was wrong with her. They had seen that Claudia still had her tampon in place. She was so ill by this time that she was incapable of removing it herself. Claudia went into the hospital on the Wednesday. She's not sure of the treatment as she was semi conscious. The next day Claudia noticed a blue rash. Also, her legs, feet and hands swelled up and she couldn't move. Then her palms and soles started to peel. However, she did recover quickly and was in hospital for only five days.
Three weeks later and back in England Claudia says "now I'm walking normally again, although I'm definitely more tired. I'm quite a strong person, well I hope I am. I am trying to keep myself motivated, but it is hard and when I found out my hair might come out I was a wee bit upset. You see I'm on my gap year and I'm going to South America in April, so this is why I'm worried about getting TSS again. I won't be using tampons again, that's for sure".
TOXIC SHOCK SYNDROME FOLLOWING A NOSE OPERATION
Paula, from South Yorkshire, went to hospital on Wednesday 10th January 2006, for a 2 hour operation on her nose. She had slipped in the shower the previous year and dislocated it. The operation was normal and Paula was back on the ward for 1 pm. The nurse told her husband that she had a local reaction to morphine and was being sick. Also Paula's blood pressure was a bit low. She didn't come round from the operation before being really sick. She drifted in and out of sleep all day and didn't remember seeing her husband who was there most of the day. The specialist came the same day and told her everything went well and that she could go home. Paula kept telling the nurses that she didn't feel well and at about 6pm her husband noticed a red rash on her skin. The nurses told him it was nothing to worry about, she was just flushed from the operation.
That night Paula started being sick again. The nurse said it was just blood from the operation, but she vomited blood at least 15 times throughout the night. She'd had 4 anti-sickness injections, but they didn't work. On the Thursday, Paula's husband phoned to see how she was. The nurses told him that she was fine and ready to come home. He was really shocked when he came in and saw Paula. She had not managed to eat anything or go to the toilet on her own. The nurse was telling her to get dressed, but she couldn't even stand up. Her body was even more bright red and very swollen, and she had lost control of her bowels. She had pains in her stomach, a severe sore throat, her blood pressure was still dropping and her temperature was very high. So Paula was kept in hospital and put on IV fluids.
At about 5pm on Thursday, they decided that something was wrong. A Doctor came to see Paula and did loads of blood tests and arranged for a chest x-ray. About 6.30 pm they took her to Intensive Care. Her husband was told that night that she was critical and may not make it. She was in Intensive Care for 6 days and everyday something else seemed to go wrong. Paula's liver and kidneys were failing and she was given treatment to help pump the blood around her body. Then she had fluid on her lungs, which they drained. Her lungs partially collapsed because she didn't have the energy to inflate them. Then a heart valve became weak giving her an irregular heartbeat. Her blood sugar was low and her platelet levels were very low.
After 6 days in ICU, Paula returned to the ENT ward and began recovering quite well, but she needed physiotherapy to get her walking again. The Doctors in ICU couldn't understand how she could have Toxic Shock Syndrome. They thought she must have left a tampon in. The packs in her nose were only in place for 24 hours, but Paula had become ill immediately after they had been removed. (AKTA says that it's possible the nasal packs contained rayon, which reacted with Staphylococcus aureus in Paula's nose to produce toxins).
Once she was home her hands and feet started peeling. She had to take iron tablets as she had become anaemic. She also needed to take ramipril to protect her heart. Paula noticed that she suffered from short-term memory loss and also she lost some hair. She got very tired and it took a long time before she got back to normal. Although this episode was not related to tampon use, she knows that she could be susceptible to TSS and so has decided not to use tampons.
ALISH, A 17-YEAR-OLD SOUTH AFRICAN, SURVIVES TOXIC SHOCK
Alish's mother Marinda tells the story of her daughter's fight for life.
On Sunday, 5 August 2007 we woke up as usual to go to church. I woke Alish, my daughter, to get ready and she was up and very lively as usual. Due to the fact that she came in very late the previous evening, her father gave her permission to lie in a little bit. The rest of the family left for church and on returning at 11:30 we found her still in bed complaining of a headache and a very stiff and aching neck. Shortly after she started to vomit and was developing a fever. Symptoms were typical that of gastritis and I gave her a tablet against the nausea and vomiting. For the rest of the afternoon she was lying down and was very dizzy. By about 9:00 she started to complain about a rash on her thighs and on checking I discovered that it was also on her back, chest and stomach, but was looking a little bit better. However, when she started to complain about pins and needles on her face and hands, I really became concerned and we took her to the emergency unit of a local hospital. The doctor diagnosed her with an "allergic reaction" to the tablets I gave her, gave her an antihistamine injection and prescribed Mucaine. On my question about the pins and needles I got no answer.
The following morning, I had to leave for Bloemfontein at 5:00 and on greeting her, I noticed that her breathing was very shallow and fast. I alerted my husband to please check on her, because I was concerned about the matter. Apparently, not long after I left she started to vomit again and was very weak. My husband took her to a GP, who immediately put her on a drip, she was dehydrated and diagnosed with jaundice. After an hour or two on the drip there was no improvement and she was rushed to the hospital where she saw a specialist who immediately admitted her to the Intensive Care Unit. By this time her blood pressure was very low and they had to put a drip directly into the heart. In the meantime I had to get a flight back from Bloemfontein and rushed to the hospital, where I found my child very ill and hardly able to open her eyes to speak to me.
The specialist informed us that he doesn't know what is wrong with her, but that she is very ill. Due to the low blood pressure her heart rate and kidneys and all vital organs where monitored very closely and a catheter was inserted. When everybody was leaving she signaled me to stay behind and requested me to please go and get her some tampons, since she is menstruating. The nursing sister told me not to worry, she will assist her in changing the tampon, because my daughter was too weak to help herself. It was however only the following morning when changing the tampon again that they realized something was wrong. A gynecologist was called in, who was able to diagnose her with Toxic Shock Syndrome.
By this time most of the symptoms of TSS were present. Her whole body was swollen, from her face down to her toes. Her fingers and toes were blue due to the low blood pressure and the swelling. Her whole mouth was covered with blisters inside due to the high fever. She had difficulty in opening her eyes, since it was light sensitive and she was very emotional. It was only on the fourth day in the ICU that her blood pressure started to normalize and she was moved to a general ward.
I wasn't aware of the fact that you can develop Toxic Shock Syndrome by using tampons and since have established that there are a lot of mothers and women who aren't. I therefore, decided to alert all mothers of teenage daughters and women in general, should you develop the symptoms as mentioned and you are using tampons, to please inform your doctor immediately. I discovered that most doctors will go through their whole career without encountering one such case, since the occurrence is rare, but you do not know when you might be one of the rare cases. The specialist who treated my daughter did not know what was wrong and had never had a case such as this. His perception also was that it was a "forgotten" tampon that caused the illness, which was not the case.
I always thought of myself as quite informed on health issues, but was quite taken by surprise when my daughter was diagnosed with Toxic Shock Syndrome. I had never heard about it before.
JESSI MARKEE ON ITV "THIS MORNING" 14 JUNE 2006
Toxic Shock survivor, 20 year old Jessi Markee from Croydon, appeared with Dr. Chris Steele on ITV's "This Morning" programme on Wednesday 14th June 2006. She explained how she was on holiday in the USA in November 2005, when she suddenly became ill. She was using a tampon and wondered whether it could be Toxic Shock Syndrome as she remembered a teacher when she was at school talking about it. But TSS is very rare, so it isn't likely to be that she thought.
Jessi's temperature shot up to 102.4 degrees and her eyes were so sensitive that she found the light was dazzling. Her mother covered up her eyes and she began experiencing headache, stiff neck, aching legs, feeling dizzy and shivering. The short journey to the local hospital seemed like ages. Jessi remembers the doctor saying that she's a "very sick pup"! She slipped into semi consciousness and at one point heard a doctor say that she had 24 hours to live. She remembers hearing her mother crying and telephone calls to her boyfriend in England.
After three days in Intensive Care a Specialist Disease Doctor drove in from miles away and identified Toxic Shock Syndrome and the road to recovery had begun. Then Jessi was infected with the MRSA bug and had to overcome that too. One Nurse remarked that she was amazed how Jessi survived.
Jessi said she feels fine now, although she is a little anaemic, gets tired and still has a slight skin problem.
Dr Chris Steele, the resident doctor on "This Morning" said that you have to put Toxic Shock into perspective. It's very rare. In fact there are more cases of malaria in Britain than Toxic Shock Syndrome. He has never seen a case although, when it is identified you have to move quickly.
The symptoms are high fever, vomiting, diarrhoea, a sunburn-like rash, fainting due to the low blood pressure (that's the shock bit), dizziness as the toxins go 'round the body, muscle aches and finally confusion. (Dr. Steele was interrupted by Co-presenter Philip Schofield before he could finish describing confusion).
TSS is mainly menstrual related caused by tampons. A bacteria called Staphylococcus aureus, which lives quite happily in the nose, arm pit or vagina, has a reaction with rayon in a tampon and the toxins finds an entry through the skin and into the blood stream. Other forms of TSS are caused by burns, etc (and blisters caused by football boots said Co-presenter Fern Britton)!
Dr Steele said that women who use tampons should use the lowest absorbency for their needs; change tampons every 4 to 6 hours; wash hands regularly; use a fresh tampon at night; and don't forget to remove the last one of the period. He said that TSS wasn't caused by a forgotten tampon because he had seen one that had been in place for three weeks and had not caused Toxic Shock Syndrome.
Thursday 31st July 2003. (New Dominion Pictures)
Discovery Channel (UK Televison station) screened a reconstruction of the 1980 "epidemic" of Toxic Shock Syndrome in the USA.
Dr Joan Chesney (University of Wisconsin Medical School) was alerted to two cases (Emily Murray and Kayley Wilson aged 19) who presented with what we now know as Toxic Shock Syndrome.
She, along with Jeffrey Davis (Wisconsin Dept of Health) was struggling to identify the cause. When Jerilyn Dulay was rushed into hospital with similar symptoms, the Center for Disease Control in Atlanta was called in. Cases all over the US, but particularly in the north made Dr Bruce Dan (CDC) declare this unknown disease as an epidemic.
Amy Johnson and 36 year old Chris Lacock developed the symptoms, and the death toll had now risen to seven. The hospitals were receiving many calls from women who had experience some of the symptoms as the cases rose to 107 in 33 States.
The CDC devised a questionnaire and interviewed all the victims plus three of their friends to use as a control model. And finally the common link was discovered - all victims were using tampons.
The CDC invited tampon manufacturers to a special meeting and asked them to withdraw tampons from the marketplace. They refused, saying that there was insufficient information.
Next, 25 year old Pat Kehm was rushed to hospital. Her husband Mike asked the doctors what could be the worst outcome and the doctor replied "that's a good question, but right now we're fighting to keep her alive". Mike was able to see his wife whilst the fight continued. He remarked that Pat's tears were red, as the blood vessels in her eyes had broken. Tragically, the fight was lost and Pat died on 6th September 1980.
The CDC continued its epidemiological study and found that two-thirds of TSS cases were caused by the one Brand (Rely, marketed by Proctor and Gamble) which contained a super absorbent material. However, all other brands using man-made fibres were also implicated. Prior to 1975 the tampon manufacturers had used only cotton and rayon. The Rely brand was pulled off the shelves and the cases dropped dramatically.
The CDC linked TSS with high absorbency and the length of time the tampon was in the body, and requested information printed on tampon packs.
Chris Lacock was released from hospital a month after her arrival. She had suffered kidney failure, heart failure and was on life support. Sadly, Jerilyn Dulay died after 20 days in a coma, suffering catastrophic organ failure. Mike Kehm, who lost his wife Pat, became an advocate for safe use of sanitary protection. (Pat's case was the theme of the book "The Price of a Life" by Lawyer Tom Riley).
The tampon manufacturers went back to cotton or rayon tampons. Thirty seven women had died and many others had suffered living pain and trauma.