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About the Disease

Legionnaires' disease is a severe, often lethal, form of pneumonia. It's caused by the bacterium Legionella pneumophila found in both potable and nonpotable water systems. Each year, an estimated 10,000 to 18,000 people are infected with the Legionella bacteria in the United States.

It is not uncommon for patients with Legionnaires' disease to be admitted to the intensive care unit. Some will suffer long-term impaired health-related quality of life.  A study of outbreak survivors showed persistence of fatigue (75%), neurologic symptoms (66%) and neuromuscular symptoms (63%) in months after an outbreak. See below for first hand accounts on the severity of this disease.

Share Your Story

If you or someone you know has a first hand account of Legionnaires' disease, we want to hear from you.  Please share your story to help promote awareness of the severity of Legionnaires' disease

I am so deeply grateful to my Swedish family for their support, the doctors and nurses that provided me with excellent care. Especially the emergency room physician that suspected LD and began treatment immediately. Without him, I would not be here today.

 

—Carol, age 54, Borås, Sweden

 

 

This is the first time I have tried to write something like this and I find it very difficult. Before I had Legionnaires’ disease, I was very good at writing, spelling and grammar but not anymore.

 

It has been a year and 8 months since I contracted Legionnaires’ disease.

 

In 2011, while enjoying the holiday feast on Christmas Eve, I started feeling ill. At first, I thought it was the food and hoped it would go over quickly. However, shortly after dinner, I started feeling bad and came down with a high fever. I stayed in bed the next few days and slept most of the time. Each time I awoke, I felt worse.

 

After an appointment with the local health clinic, I was sent home with a diagnosis of pneumonia and given antibiotics. But over the next couple of days things got worse. I slept most of the time and when I awoke I had stomach pain, diarrhea, headache, and extreme thirst (just to name of few symptoms).

 

I slept on the couch because it was closest to the bathroom and kitchen. It was difficult to walk; I easily got out of breath. Then came hallucinations and confusion.

 

When I awoke, I wasn't really sure if I was awake or not. My thoughts were sharp, in the way when you know you are awake, yet the ceiling began to paint itself. I stared at the wall in disbelief, how could this be happening? It was very beautiful. I watched as almost the entire wall was filled with beautiful flowers of gold and green. I thought to myself, this is what it must be like to be on drugs.

 

Then, I started talking in my sleep, just like I was fully awake. I could hear my own voice but couldn't recognize what was happening or what I was saying. It got difficult to understand what was real.

 

Sometimes I was in focus and knew what was happening; other times everything was strange and blurry. I was scared, very scared. I didn't want to tell anyone because I thought they would think I was crazy.

 

It got to the point that I couldn’t walk without getting extremely out of breath, so I returned to emergency room where it was clear I was very sick. The medical team responded quickly even though they weren’t sure what was wrong. I was lucky enough to be seen by a staff physician who suspected I had Legionnaires’ disease.

 

He gave me an antibiotic immediately and ordered an x-ray of my lungs. The doctor was so concerned that he pushed my gurney down the hallway while my fiancé ran behind. I started coughing and couldn’t stop and was told I started turning blue. After the doctor stuck me in the hip with a syringe, I started breathing again! I started coughing again while they were taking x-rays, and the same thing happened.

 

I was rushed back to the Intensive Care ward and a whole crew of doctors and nurses took over immediately. As I was going in and out of consciousness, they connected me to machines and inserted lines in both arms and in the neck.

 

After I awoke, I told myself nothing else mattered ... just to breathe.

 

But the hallucinations continued—and they weren’t pleasant. While looking up at the ceiling I saw bugs crawling inside the lights. I knew it was impossible, and I realized I was hallucinating.

 

It took a couple of days for the antibiotics to work and my fever to start going down. I was on oxygen and the mask aggravated me. But, it didn't matter because I was still alive. For me dying was not an option, I was determined to fight it with all I had.

 

Slowly, I started getting better. After a couple of days, I could finally look around my room and see what it really looked like. My mind was clearer, but my body had much more healing to do. It was still very difficult to walk. Little did I know, it would take months to start walking "normal" again. Not only was it difficult to walk, but my brain felt like it had to learn to function all over again.

 

When I came home from the hospital, I felt like a newborn baby. Food tasted like it never tasted before. At first, I had no pain in my body at all. This would change very quickly. The pain became excruciating and it was almost impossible to go to the bathroom. Then, I felt pain in my back. It spread to the right side and after a few days was on the left side too. At times, it was too painful to breathe. I went back and forth to the clinic where they took numerous tests, but the tests came back negative.

 

I felt like my body was melting away. Exercising was not an option. Even though I tried walking on the treadmill many times, I could only last five minutes. I pushed myself hard to get better but it didn’t matter how hard I tried. My body would recover at its own pace and my brain could not influence it. This was extremely frustrating.

 

In the beginning of my rehabilitation, I focused on my physical well-being. And after a couple of months, I started back to work and using my brain. The doctor suggested I start back slowly. So I worked for a couple of hours a day for the first week, then four hours a day the second week. My brain didn't function well at all. I couldn’t remember things. When my boss told me how to do something, I would often forget and need to ask the same questions many times.

 

Several times the pain in my chest made it hard to breath. I believe it was related to stress. Every time something got stressful, these symptoms developed. It took a time to realize it. My attention span was next to nothing.

 

Today, I’m much better and I’m thankful for kind and caring supervisors, along with friends that were very understanding.

 

My chest pain is almost gone; I can exercise pretty well, too, even though up stairs is still a problem. I still have some memory problems. There are times when I cannot see things. Sometimes when I read, letters in words are switched around or the end of a sentence or a word is missing. But after I go over it a couple of times, I can see it.

 

Concentration is still a problem. Before I was ill, I was the kind of person who could learn things after doing them once. Efficiency was my middle name. Things were never hard to learn and I always did well at what I attempted. Unfortunately, I’m still a long way from being myself again. Sometimes I wonder if I will ever really come back.

 

I am also extremely clumsy and this frustrates me, because I was never clumsy before!

 

The Infectious Disease Center in Sweden conducted an investigation and found Legionella at a facility where I had attended the Christmas Eve dinner. It was in the hot tub located next to our room. I was outside and looked at it while they were preparing a bath for others.

 

They also tested my home and the results were negative. I hadn’t been anywhere else that had a source. Many things went wrong in this investigation, and the facility refused to take responsibility. However, I am 100 percent sure where I caught it. But like so many other LD cases, I believe my case has been swept under the rug.

 

I’m extremely sad and disappointed. Sad because I don't understand why this has happened to me. Disappointed because the same institutions we rely on to keep us safe, don’t take responsibility. It seems to be a problem all over the world—all one has to do is search the Internet.

 

Why do they hide cases Legionnaires’ disease? I believe it’s because of money. This disease is absolutely preventable. We don’t need to take inoculations to stop it. We need funds for research. We need establishments to be responsible for the Legionella that can grow in their system. We need to educate the public.

 

As you can see from my experience this is an illness that is not easily treated nor cured in a short period of time.
I soon realized that the only recommended therapy was to accept the residual effects and learn new methods to do old tasks. Hall of Fame Coach John Madden once said that there is a little bit of just not done yet in all of us. This idea has motivated me to work toward my “new normal” by staying physically and mentally active. -- EricIn August 2012 at the age of 64, I contracted Legionnaires’ disease while on a business trip in Chicago. Five days after I returned home I began to experience a feeling of malaise, and on August 15th I developed a fever of 102°. My wife took me to my primary care physician who sent me home and told me to take Tylenol; that evening my fever spiked to 104°. My wife called my PCP and advised him of the situation requesting that he send an authorization for a chest x-ray and an antibiotic. I began a treatment of Levequin. The x-ray was positive for pneumonia. The fevers continued throughout the next three days, which included the weekend.  Severe headaches and chest pains set in. My lungs were full of fluid and I found it difficult to breath. The headaches were location specific from the right side of my head to behind my right eye and over to the middle of the right side of my neck. They lasted from five to seven hours a day. I started coughing up blood. Even though my sputum was bloody, I didn’t go to the hospital because my wife Barbara was concerned that my immune system was too compromised and I would be prone to other infections at the hospital. On the sixth day of fever and headaches, my wife heard a report of a bird flu outbreak in the Midwest.  She called my doctor and suggested that he order a blood test.  The blood test was negative and there was no test for Legionnaires' disease. On August 22 my Secretary received a notice from the Chicago Department of Public health advising of an LD outbreak at the Hotel where I stayed. My PCP was notified of the notice and he called the Lab and asked them to run a blood serology test on the remaining blood that was drawn when I was sick. This is not an appropriate test for LD while the bacteria is active.   The result was negative. A week later I felt somewhat better but quite fatigued.  I reported to the doctor and after reading the Notice from the Chicago Department of Public Health said there was nothing more to do. He suggested I go home without further treatment or testing, as my blood serology test was negative. I told him the test he was relying was wrong, and after calling the lab he ordered a second test based on new blood. The test came back positive for Legionnaires’ disease. Over the next four months I realized that local doctors in my town had little to no experience with Legionnaires’ disease. On the advice of friends and others, I began to seek care and guidance from specialists at the University of Pittsburgh Medical Center, and Johns Hopkins Medical Center in Baltimore, which was closer to home. It wasn’t long after the headaches subsided that I noticed I had aged significantly. I lost the ability to do many things I could do before. My memory was foggy.  I had grown easily distracted and forgetful. As a lawyer, I used juggle many tasks at the same time, but now I could only concentrate on one thing at a time. I had to think out each step of every process that I undertook. This included things as simple as feeding the dog to more significant matters like writing a letter. I began to notice significant changes in my cognitive functioning. While I expected that for at least a number of weeks I would be physically fatigued I had never expected mental fatigue to be so pervasive and long lasting. Even now when I attempt to think through problems or read too long I often have terrible headaches. I’m constantly losing things. I must put all of my belongings such as keys, wallet, change, glasses, checkbook, Tylenol, etc. in a bag so I can find them when I need them next.  Everything must go into this bag throughout the day and especially when I come home or I will misplace them. And I must store the bag in the same place when not in use.  I often find myself lost while driving in the car. These forgetful events happen frequently throughout the day. I must constantly write notes as an idea comes into my mind or it is forgotten forever. I find myself walking into a room to do something and having no idea why I went in there when I arrive. I often go to get an item and come back with something else. Last night I was making a salad and I cannot tell you how much time passed, but at some point I stood wondering what I was looking for in the refrigerator. Now some people may say, that happens to me. My reply is, yes, but not all day long. After a few months of living with these aftereffects, I suspected that at 64-years old the life as I knew it was gone and I was entering a new stage—a “new normal” for me. Still, I needed to know the cause. Could pneumonia have impacted my life so dramatically or was it Legionnaire’ disease?  I consulted with and infectious disease doctor who compared my blood seriology results from blood drawn while I was sick to the blood test drawn 13 days later. He noted that the antibody spike was significant and high in that the first one was taken while I was sick (Negative), and the second one taken shortly after I recovered (High Positive). I have no idea what my “new normal” will be. Nor do I know how long it will take until I get to astatus quopost-Legionnaires’ disease state. I’m engaged in a behavior modification therapy program with a neuropsychologist in my hometown to help me deal with: 
  1. Guilt from not being the dependable person that I was before LD;
  2. Recognizing, finding and adjusting to my new normal.
 That means accepting the reality that it may take more time to do the things that I did before; developing new techniques to perform those tasks; and creating new meaning and purpose to my life. PCPs, ID specialists and researchers need to realize that Legionnaires’ disease doesn’t end when the infection is resolved.  It is a disease with a residual syndrome that is a persistent and troubling companion. For months I searched for a way to get back.  For months there was little in the way of guidance or counseling. If I broke a bone or tore a muscle there was a course of recommended therapy that would make me come back stronger. But for Legionnaires’ disease no therapy exists that will reverse the side effects. I soon realized that the only recommended therapy was to accept the residual effects and learn new methods to do old tasks. Hall of Fame Coach John Madden once said that there is a little bit of just not done yet in all of us. This idea has motivated me to work toward my “new normal” by staying physically and mentally active. Through all of this I learned how important it is to communicate with others who have gone through this experience. And that it's important to recognize that you have more friends than you realize, and that they are willing to lend a hand to help you.For those of you who have survived Legionnaires' disease and are trying create their "new normal" I say, Do your best to remain positive at all times and at all costs because disappointment can manifest itself in painful, crippling ways, if left unchecked. Rather than see your glass half empty see it more than half-full. Consider that you had three good days this week, rather than four bad ones. Remind yourself that an 80% recovery is better than a 20% loss. Lean on your family, friends and colleagues who truly care about you and can make you smile.  Keep up your sense of humor. Recognize that there is more to life. Seek a meaningful purpose every day. Get counseling and professional advice and guidance and above all else seek out others who have similar conditions. Support each other and most of all always remember that you are just not done yetUPDATE: A few months ago,  Dr. Stout introduced me to a survivors group in the Netherlands. The have provided me with a great deal of information. Many of their members are 12 year survivors and today suffer from many of the after affects of LD.  Most, young and old have stated that they are still not the same person they were before LD, complaining about the very same things I reported to doctors two and a half years ago:  inability to focus and multi-task, confusion, general sadness for example. You are not alone.
I am a maintenance supervisor for a company in Michigan with a boiler/chiller HVAC system, or a water system. The system was installed in the late 1960s for space and efficiency reasons. Before I contracted Legionnaires' disease, it was my responsibility to walk through and inspect all boiler/chiller rooms and the piping that led through the property.In December 2009 at age 46, I was rushed to the hospital and admitted into intensive care where I stayed for a month. I was diagnosed with Legionnaires' disease. For a while, the hospital staff didn't know if I would survive. I lost my job  for " failure to return from leave." if you can believe that.Fortunately, i was reinstated after my termination. Now, I can 't do a third of the things I used to do.  I have severe joint and muscle pain, fatigue and memory loss. I am on two heart medications, one anxiety medication, depression and pain medications. At this point, I don't see any light at the end of the tunnel.This has taken a heavy toll on my family. The quality of life I once had is gone. I feel so bad for others in my situation as you have all heard "your looking good "  Right ! It's very hard to explain to someone who doesn't look past your physical appearance not to see that you have fallen apart on the inside.
In 2011 I went for a surf on a cold December morning in the north sea. I woke up that morning feeling absolutely fine however, after I had spent about 40 min in the water I felt dizzy, ill and generally horrible I remember coming out the water and dragging my board up the beach and into my car. The first thing I noticed was that I was cold really cold. Now I'd surfed many times in winter and it had never bothered me like this before, so I knew something wasn't right. I couldn't even function to drive home so my wife drove. Upon arriving home I noticed that I just couldn't control these shakes that were almost like rigors related to an infection. I joked around saying I probably just got hypothermia. So,  I went to bed to try and heat up. About four hours later, I woke up and according to my wife I looked terrible, pale and was sweaty. I felt as I looked.  Still shaking I stumbled to the bathroom and started vomiting bile. Afterward, I took my temperature and it came back at 39.9 C. It was clear that there was an infection brewing someplace but where? As the night went on my symptoms worsened.  A duty doctor was called out and took my observations. My temperature was spiking this time to 41.2 C.  I was expecting to be admitted but the doctor, for some reason, did not admit me. He took blood and left. Four hours later he returned and took more blood. After he left  I went back to bed.I find it extremely hard to remember the rest of my illness but I will tell you guys what relatives and medical staff told me. Two days passed with these symptoms. I was still at home and had been giving antibiotics containing penicillin.  After two days of taking these they were stopped becaiuse I couldn't stop itching, my hands were swollen, and I was covered in red blotches. They assumed I had a sensitivity or an allergy to the drug. After another reassert it was a apparent that my lungs were now in trouble. When I exhaled you could here the fluid bubbling loudly. it sounded like blowing bubbles in milk. Treatment for pneumonia was now under way. I think it was clythromisen (apologise for the spelling ). My blood tests showed it was a definite mycoplasma pneumonia.Two weeks passed and I was still in bed, still on drugs, and still no admission to hospital. After another visit to the docs,  he found there was next to no change in my condition. I was loosing weight, confused, nauseous, vomiting, and my stool was loose. i was just broken.  I went from a fit soldier to getting out of breath just walking up three stairs. So after gaining more of a history, the doctor worked with the infectious diseases specialists to find what could cause the symptoms. They decided to test me for Legionnaires' disease.  Just to be sure a doctor from my old job (army) also took tests. Both sets came back positive for Legionnaires' disease.One and a half months after the surfing incident, I started getting treated for this infection. All treatment was carried out at home. I'd feel great for an hour then crash and burn for four house. About two months later, I felt exactly the same so they sent me to the hospital for two days for an antibioti IV. It worked but was a long process. I spent the next two months popping in and out of hospital for check ups and repeat bloods tests.  After about six months from my surf,  I was feeling better but was told I would have lasting damage to my lungs and other areas.  When the tests came back the infection was gone, jsut the antibodies were present. I wanted to celebrate but had no energy.After contracting Legionnaires' diseaes and getting treatment for it,  I now have left sided chest pain,  asthma caused by the infection, IBS and burnt villi in the bowel. A  colonoscopy showed chronic damage to the bowel lining due to oral antibiotic I was treated with a through a drug trial called vsl#3 for this and it did help but now I have a dodgy tummy about three times a week. I sometimes pass blood. My ECG has shown artifact due to having pericarditis as a result of the infection spreading. I still have these symptoms daily and manage them with drugs but I'm aware I will never be 100% again.  I'm currently at work with a chest infection and getting my blood checked weekly to avoid a repeat of last time. Where did it come from ? It was thought I got the infection from a lorry's air tank that had sprayed water in my face as I was working on it. During the surf I brought it out of its incubation period .
My story begins on May 24, 2012. I came home from work with a slight sore throat and a cough.I am used to pushing myself so I didn't think that much about it. I went to work Thursday and Friday. By Friday night I started developing such a high fever that I can barely remember what happened until I woke up in the ICU on June 14th.My partner, Ray, told me that he put me in the shower and tried to get me to go to the hospital on Saturday morning but I refused. After I became even more incoherant so Ray took me to the emergency room. He told me that I signed papers and spoke with the nurses--none of which I can remember. My fever had reached 105°; lucky for me a young intern suggested testing me for Legionnaires' disease. By the time the x-rays were read I was intubated and put into a medically induced coma. Things went from bad to worse. My lung collapsed, a chest tube was inserted, and I went into septic shock. This is when the doctors advised calling all my family to come say goodbye. I was put on dialysis, and had an allergic reaction to two of the antibiotics they had me on.When I woke up on the 14th of June in ICU, I had no idea what had happened to me. I could barely move my hand to my mouth, I was so weak. I was transferred to rehab on June 19th and was there until July 19th. When I went home I had to continue PT and I had a personal care attendant for two months.I believe I got this disease from the building that I worked in. It was a very hot and wet spring in 2012 and our building had a flat roof and had been leaking since we moved into it in 2006. Of course my boss denied I got sick from the building because he was hit with a big fine from OSHA two years before and I think he thought he would get hit again even though he was renting the building. I was with this company for almost 11 years; hardly ever missed a day and I was on call 24/7. I had no income at all five moths and had to use all our savings. I did eventually get a lawyer who at least was able to get me workers comp. for the time I was out of work but they made me sign off on medical. I then was able to collect unemployment because my employer had to hire someone for the office. My UE benefits are done on Oct. 15---I do not know what I am going to do then. Jobs are tough to come by and at 58 not many will hire me.I too have trouble with memory, spelling, comprehension, walking, fatigue, and muscle pain. I developed medically induced cataracts in both eyes and had to have surgery. I noticed a "growth" on the left side of my lower back when I was in rehab that they decided to "watch and see." Of course it got bigger so I had surgery on July 1, 2013 to have it removed. It became badly infected. I have to say this has not been an easy journey.I would love to try and educate both the public and the doctors who seem to think that once the pneumonia is gone you are "cured." This is not the case! I am finding that this disease has taken a big toll on my health and quality of life.
I’m extremely blessed that my mom is alive. I fully believe that if we had waited one more day, she would be gone. If it weren’t for the thorough evaluation and tenacity of Dr. M. and his team, the ending to this story would be completely different. We are by no means out of the woods yet. In fact I am not completely confident that she will ever fully recover. However, reading the stories of my fellow contributors has provided me a sense of direction to advocate for her continued improvement.--Kim, Michigan On June 13th, 2015 my mom called me and said that she was not feeling well and thought that she might have the flu. By Wednesday evening she emailed me and shared that she wasn’t feeling any better. However the spelling, syntax, and punctuation of her email was completely out of character for her. I called her several times that evening and was unable to get a hold of her. Thursday morning I was finally able to get her on the phone and noticed immediately that she was slurring her words and not making any sense. I asked her to call her PCP to make an appointment for the next day. She was able to make the appointment but this did not put me at ease.I called a friend of mine who is an RN, and asked her to stop by and check on my mom. When my friend G. arrived at the house, the doors were locked and there was no answer to the doorbell. G. called me and asked me how I would like to proceed. I instructed her to get into the house by any means necessary. When G. was finally able to gain entry she found my mom in bed, gray in color, short of breath, with a high fever. G. called me back and reported her findings and recommended an immediate evaluation.My mom was taken to the ER via ambulance, and arrived there by 4:00 p.m. I quickly loaded the car and started driving north to get to the hospital. The ER doctor diagnosed my mom with dehydration due to the flu. Her potassium, sodium, and electrolytes were dangerously low. Her kidney function was minimal and she was struggling to breathe. They connected her to a cardiac monitor, IV's, and oxygen, and immediately started pushing fluids.By 11:00 p.m. my mom was admitted to hospital where she was assigned to Dr. M. He ordered several tests including a chest x-ray, blood cultures, CT scans, and others. She was then diagnosed with bilateral pneumonia, and sepsis. She was spiking high fevers, and her vitals were like a roller coaster. My mom was still experiencing severe diarrhea, and her color was gray. She was confused and sleeping constantly. Dr. Medieros was diligent in finding the root cause of symptoms. He ordered the test for Legionnaires’ disease, and it came back positive.He placed her on a 10-day course of IV antibiotics that resulted in a skin yeast infection that covered 60% of her body. After 11 days in the hospital she was released. My mom now has visiting nurse, as well as a physical and occupational therapist coming to the house on a daily basis. She is still rather confused and frail. It seems that my mom has aged 20 years in the past month. Additionally, she has lost almost 35 pounds and has no appetite whatsoever.Dr. M. was extremely candid with me about the longterm prognosis of her newly diagnosed condition. She can potentially recover fully in 12 to 18 months; however, she is at high risk for a secondary infection. Any type of severe cold or flu could take her right back down to where she was when she was first admitted to the hospital, especially before her lungs fully recover.I’m extremely blessed that my mom is alive. I fully believe that if we had waited one more day, she would be gone. If it weren’t for the thorough evaluation and tenacity of Dr. M. and his team, the ending to this story would be completely different.We are by no means out of the woods yet. In fact I am not completely confident that she will ever fully recover. However, reading the stories of my fellow contributors has provided me a sense of direction to advocate for her continued improvement. Thank you Legionella.org for providing this platform to share our stories and educate each other in the treatment and expectations of future.