Share Your Story | Legionella.org

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.

 

 

 

Comment On Story

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. — Eric

In 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 yet.

 

UPDATE: 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.

 

 

Comment On Story

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.

 

 

 

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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 .

Comment On Story

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. 

Comment On Story

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.

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