Updated on 6/15/19
“I went to sleep on May 4, hardly able to breathe. That’s pretty much all I remember until I woke up on June 3rd. My wife advised me I was on life support for almost a month and it looked very grim at times. This disease almost killed me.” T.C.
“I had LD in 1997: Unconscious, fever 107°F, several days on a cooling blanket, 56 days in coma, 71 days in hospital, had to learn to walk again. My neurological system is severely damaged. I am unable to work. I am fighting Social Security for disability benefits. HELP.” R.H.
“I am an RN and was caught by surprise nonetheless. My temperature was 104°F and I finally went to the doctor. On the third night, I could feel my lungs collapsing and we called an ambulance. I could no longer walk. I was admitted and apparently had a respiratory arrest and was intubated. Things went from bad to worse as they waited for the cultures. When it was confirmed as Legionnaires’, the doctors started three antibiotics. My kidneys then went and I was in renal failure and needed dialysis. My blood pressure was almost nonexistent. …I had about 11-15 specialists on my case and over 35 x-rays. I was completely helpless. I was laid up for another three months trying to rehab myself… had to learn to write again. I will never forget the suffering of both me and my family. I wouldn’t wish this syndrome on my worst enemy.” A.F.
“I still suffer a lot. Had I not been a nonsmoker and very fit (a swimmer), it would have killed me, although sometimes I wish it had as each year I get worse.” S.F.
“My wife was placed on a respirator where she remained for nearly 4 weeks. Fortunately, from the outset her chances for survival were greatly increased because the infection control and pulmonary physicians correctly diagnosed her condition and immediately treated her for Legionnaires’ disease. The experience was harrowing for us all.” J.E.
“I went to my doctor and requested to be tested for Legionnaires’. He was reluctant to test me. I insisted, and thank God I did. If it weren’t for a coworker insisting I be persistent with my physician, I would never have known that I had LD, and could’ve died. I may be a nurse but had never encountered LD and was not aware of all the symptoms or the treatment or the severity.” W.W.
“It’s been 6.5 years now and I still struggle with long term memory loss. It took over a year before I was able to work again. The reports say I was completely dependent on life support to keep me breathing…without it I would have died. I spent the next three months in and out of hospitals. There are still memories from past that are gone. I have “black holes” where the memories should be. I’ve lost most of my memories of my youngest daughter’s life from age 1-6…they just vanished. It was the worst experience of my life.” D.D.
“My ex-uncle-in-law is dying from Legionnaires disease. Why can’t they give him a lung transplant? They’re so desperate that he was put in a coma and given steroids. They say he would die if they try to open his chest.” M.L.
“My next door neighbor was diagnosed officially as having Legionnaire’s disease. He started being very sick for about a week at home and then finally went to the ER unable to breath very well. He woke up from a coma six days later. He had a tracheotomy to save his life in the ER and was very sedated in intensive care thereafter and very sick. The doctors have told him it will be at least a year until he’s normal.” J.C.
“My 19-year-old son died from this disease last month.” D.M.
“I am a kind of healthy 26-year-old who contracted LD. I was in the hospital for four days before they tested me and diagnosed LD. It affected my family hugely. I had to take approximately three months off of work. Since I have had LD, I seem to be getting ill all the time…I just wonder if having LD could have affected my immune system.” S.G.
“I contracted Legionnaires’, spending just under 30 days in the ICU on life support. After… lots of home therapy I continue to have what doctors claim to be nerve distortion in my upper right shoulder. This continues to be very frustrating and extremely painful. I also now (rarely before) suffer from intense light and sound sensitive migraines.” T.F.
“I have just returned home from attending the funeral of my sister’s father-in-law. The family got a call today that the cause of death was Legionnaires’ disease. The deceased was a diabetic and he also had cystic fibrosis. 74 years old. Non-smoker.” G.F.
“My 64-year-old father was recently diagnosed as having Legionnaires’ disease. It has turned into a nightmare both physically and financially for my parents. I truly believe that someone needs to be held responsible for what happened to my father.” K.D.
“My husband was in the hospital for 18 days and almost died. He is a sheet metal worker and prior to getting [sick] was working on the same jobsite for a long time. The insurance company does not want to test the jobsite we think he got it at.” Erica
“This disease was the worst thing medically I have ever experienced and had I not been healthy when I got it, I would probably have died. I have not been in a spa since.” M.F.
“My husband contracted Legionairres’. He was so severe that he almost did not make it. He is permanently disabled…from the Legionnaires’. There appears to be no relief despite multiple treatment modalities. His symptoms remain with periods of exacerbations.” K.F.
“I am a 43-year-old single mom and was recently blindsided by Legionnaires’. I went to my Urgent Care clinic with what I thought was bronchitis after about five days of a dry cough and then developed a fever. I was diagnosed with pneumonia, admitted to the hospital, and the next thing I knew I was waking up in ICU with a breathing tube in my throat, only to find out I had been in a COMA FOR 5 DAYS!!! Since I was the only case reported in my county, the health department won’t come to the house to do an investigation.” M.B.
“My son has just been diagnosed with this. He is a healthy, twelve-year-old boy who doesn’t get sick very often.” L.J.
“I was just recently released from the hospital and nearly died from Legionnaires’. I have no idea how I got it.” G.M.R.
“I am 47 years old (male), do not smoke or drink, and was in healthy physical condition. I contracted the disease in February 2009 and was treated in the hospital one week later. My experience with LD in the hospital and recovery at home was the worst thing I have ever been through. However, after five months I still have a major problem with short term memory–I forget where I am going, or forget people’s names even though I have known them for years. Please help. It seems like the long-term effects from LD are worse than the hospital experience.” S.S.
“My husband was a patient in a local hospital for treatment of a platelet disorder and developed Legionnaires’ disease. He spent a total of about 50 days in the hospital during a three month period.” C.B.
“My friend was admitted to the hospital with a temperature of 108. Five days later he was diagnosed with Legionnaires’ disease. He is on a ventilator and fighting for his life.”
My mom 69 fairly healthy went into the hospital 5 days ago. After being sick for a week (flu, fever, vomit, SICK) To the point she couldn’t stand up or dress herself. Ambulance was called and she was taken to ICU. They immediately sedated her and intubated her. She was diagnosed 2 days after arrival. She has been under for 5 days now. Her oxygen has been from 100% to 60%. Sedatives from full on to non. Right now when they were non the body didn’t react well (Fever. High heart rate. Low oxygen intake.). Oh my god. This is the worst to see as a relative and I can only imagine how she is feeling. Does anyone have tips? We make sure there is someone with her at all times. We talk to her, hug her and encourage her. Michael
Hi. My husband does not remember us talking to him when he was incubated. I visited him twice daily as we lived close to the local hospital..but he was only there three days. Then was airlifted to another hospital. Then the ventilator was dropped to 80 percent..then to 70..60…when it was at 60 I asked him did he know I was with him and holding his hand and he shook is head yes.. I said can you squeeze my hand..and he did… I was so happy.. at one point the vent. Was at 90-95 ..so that was breathing for him. Good luck to you. Patricia
My husband just came home from hospital yesterday. He was on a few antibiotics. One of them being azithromicin..that’s what they said works on the legionella bacteria.. my husband is physically fit..works two physical jobs for just under 15 yrs. He is 48. One week his missed two days of work. He took Nyquil as he does if he feels like he’s getting a cold. So the following week he missed the Monday..he didn’t want to go to erase..I made him promise he would go to urgent care that Tuesday. So we went..they sent him right to erase saying he had pneumonia. He was put in the critical care unit that night…the next day the test came back presumably legionnaires.. well his oxygen levels kept dropping..the next day he was put on ventilator and was air lifted to the university of Pennsylvania..this disease caused him to have a heart attack and he started to have kidney failure. This was happening too fast..well..yesterday the start of his third week he was discharged. We will b e going back within two weeks because now he needs to have a catheterization and heart surgery to repair a valve… I wouldn’t wish this nightmare on anyone. And god bless you all who are going through this horrible disease. As someone else mentioned about their loved one being the only case..same here..I just hung up with local health dept. But I am going to seek information from a lawyer. Patricia
I’ve been actively implying legionella prevention programs for over a hundred buildings for almost nine years. We hardly find any bacteria in the hot water, as long as it is over 55 degrees Celsius. We do monitor the temperatures on a regular basis. A weekly assessment of the temperatures keeps the hot water systems safe for use. It is a proven method. D.D.
I am 6 years post Legionnaire’s, contracted when I was 42 and went through a lot of the same, vent-dependent, kidney failure, sepsis…now on SSDI and also have memory loss, significant pain and fatigue…my prayers go out to you, to all of us. Marcia
I was in coma for month with legionnaires..from what I was told it took couple weeks to get under control. Hang in there .but if have any questions about whats going on if I can I will help..I don’t remember but all. My fam does. Patrick
Several of the above quotes were excerpted from the full versions included in the book Protect Yourself from Legionnaires’ Disease: The waterborne illness that continues to kill and harm.
June 15, 2019: As you can see below, several more survivors have shared their stories since this article was published, many of whom expressed that they were comforted and encouraged to read the stories of other survivors, realizing they were not alone.
Do you have a survivor story? If so, please tell it in the comments below.
I believe this is the website where I told my story about my bout with Legionnaire’s in 2014. If you still have it, could you please e-mail it to me? I’m still having complications and I would like to see if anything has improved. This is such a debilitating illness and with the recent outbreak in New York, it’s made me remember how sick I truly was. I keep thinking maybe I should see a cardiologist or some kind of specialist but honestly, after dealing with all the doctors when I was hospitalized, I’m very reluctant. I keep hoping that I’ll get stronger as time goes by.
Hi Janis. I’m sorry to hear you’re still having complications. Our website and blog software was updated in March of this year. Although the comments submitted before then were compiled and posted, I don’t know which one was yours. When you have time, you could scrol through the comments to look for it. All the best for you. I pray you recover fully and quickly.
WOW! It seems I got off lucky! I woke on the Wednesday morning shivering like a leaf. The temperature outside was 30C+ and I don’t have AC. I called work to let them know I was ill and went to ser the doctor to get a certificate for work. He game me some antibiotics and linctus for the cough. He also asked if I’d vomited or had the runs. I said no. As I hadn’t. I took paracetamol as advised to keep my temperature down (it was 107, just under 44 when I went to see him) the next day I vomited once. The day after 4 times before noon. I went back to the doctor and he sent me to hospital. I was admitted for 4 days. For the first night I was on oxygen, had a chest xray and they said I had pneumonia. I asked if they could test me for legionnaires and they said yes. They pumped me full of antibiotics, had me on a drip and kept giving me IV paracetamol to control my temperature. 3 weeks on I’m short of breath and have no energy. Lucky escape!
So glad you’re okay! Thanks for sharing your story.
I went to Urgent Care in Ohio and was told it was pollen. Its hard to take a full breath and Ive had a horrible painful cough. My throat stays coated with mucus. I had to go to hospital for antibiotics which did not work. My heart rate is weird and I so fatigued , my life falling by the wayside. The doctors are not helpful. Medical care in certain areas is almost useless. I never heard of pollen causing fatigue and a wracking cough. I cant find the right medical care. I caught this in Virginia. I need some real medical help. I should never have been exposed to this in the first place if not given a dirty breathalyzer tube in my mouth.
I’m sorry you are still battling the illness, Adrian. Were you diagnosed with pneumonia? Did the doctors have you tested for Legionella? I hope you’re feeling better soon.
I was recently diagnosed with this bacteria and spent 6 days in hospital, 3 in er with many other ill people. Not able to breathe properly, with no appetite. Was diagnosed. Three weeks later I feel better, heart rate back to normal. According to the doctor, I just can’t get answer if I can get it again. Should I be in hospital being tested? Not sure where to turn.
Yeah. It’s been 9 yrs of same since my diagnoses. Went thru coma etc. Vomiting and lethargy bad. There’s an FDA approved drug called egatan MFD by novartis. It kills off bacteria that is caused by legionnaires. I’m fighting like hell to get this. I hope all my research pays off. Jean
9 years! Wow! I hope the drug helps you, Jean. Thanks for sharing.
I wish my brother had some. He’s in ICU 15 days now on ventilator in Florence Alabama
I ended up getting legionnaires 4 years ago from potting mix. A week after I used the potting mix (without gloves or a mask) I started to feel unwell. I have severe asthma and get pneumonia really easily. I had kidney cancer 10 years earlier when I was 23 and after an operation on my kidneys I got pneumonia in the hospital and my lungs collapsed and ever since most colds turn into pneumonia for me. I thought I just had pneumonia again but I had a really high temp and everything ache and I felt freezing. I had a two and four year to look after and it was Easter Saturday so they were excited about the Easter Bunny. I laid on the couch and I was hallucinating and vomiting. I got up and drove to the hospital. They listened to my chest and said they had never heard anything like it. They rushed me through and put me onto a few different antibiotics. After 10 hours of being on the drip I felt so much better and pleaded for them to let me out so I could be there for the kids when they woke up. They were happy for me to leave but said to come back if I felt like I was getting worse. I was so lucky it wasn’t any worse then this. It took me about 4 weeks to start feeling normal again but I couldn’t rest much with 2 little kids relying on me.
20 days later I got a phone call to urgently come into the doctors. I was so worried, but when I got there they apologised and said that they got blood tests back saying I had legionnaires disease. They were so surprised how well I had recovered and I was just lucky they gave me the right antibiotics in the hospital. Reading through all the stories and comments I feel like I was one of the lucky ones.
Thanks for sharing your journey, Janis. Some of the readers may not know that Legionnaires’ disease from Legionella longbeachae is contracted from working with potting soil much more commonly in Australia and New Zealand than in other parts of the world. I’m glad you recovered and pray you regain 100% good health in your lungs.
My husband got diagnosed with Legionerres Disease in July of this year. He spent 5 weeks in the hospital, over 3 of those on a ventilator. His kidneys started to fail 2 days after he was admitted. He had dialysis at least 4 times a week for 4 weeks. He has diabetes, and has had 4 heart attacks previously, and he has 4 stints in his heart. He just turned 51 in May. We don’t know where he got it from. His fever the first few days was 105 degrees. I couldn’t visit him for the first 6 days bc he was isolated. His Covid tests came back negative thank God. He has been home for almost 3 weeks now. His hands shake and he has a stutter now. Am sure he has some neurological damage. I am off on caregiver benefits to look after him. He can’t do his online schooling for WSIB, so they have cut his benefits by over half. This disease is serious!! The first 6 days, I wasn’t sure he was gonna make it?. We will c how things progress, but I am sure he will never fully recover. Reading all ur stories helps a great deal?. Thank u for sharing everyone. And I wish everyone involved the very best. Take care.
Nancy, I’m so sorry you and your husband have suffered so much from this. Keep fighting for a full recovery…I pray it happens soon! Thanks for sharing your story.
I am 59 and was diagnosed and treated in Ohio. I had just returned from vacation and within seven days I was in the ER with a fever of 103.5. I was told I came combative and was sedated. I was sent to a larger hospital by squad. I remember being in the ER at the larger hospital for 2 days waiting for a room. I could feel what I described as tennis ball in the center of my chest. On the third day I was sent to regular room. Within hours, I had respiratory failure, sent to ICU on a ventilator. I was tested for COVIN-Delta. It took them 7 days and a bronchoscope to figure out what was wrong with me. Once I had the right antibiotic, I began to slowly improve. I ended up being in the hospital 19 days. I could hardly walk and had home health and on oxygen for 6 weeks. My short term memory has been affected. I started taking blood pressure medications now. I still had a abnormal CAT Scan of my lungs last week. I still tire easily and hope my memory gets better.
Wow! Thank you for sharing your story, Kathleen. I pray you get your full memory back and feel 100% soon. How many days had you been in the hospital before you were tested for Legionella?
May, 2000 I potted flowers.
I accidently dropped a heavy, open bag of commercial potting soil, inhaling the dust as it flew into my face when the bag dropped. Within 10 days I was in critical care in Seattle, on ventilator, in a coma for 3 weeks. The night of the 26th, the staff had to call the pulmonologist who came to try to figure out how to adjust the vent but not explode my lungs… as he said to my husband. My body was medically paralyzed so only the organs were being supported, one lung collapsed, the other functioning at only 10%. My body went into septic shock. No blood pressure. They thought I was dead. The RN who was assigned to me insisted she only have me as her patient because she knew she needed to sit right there by the bed and equipment. I was given quadrupal doses of 4 different antibiotics as the MD’s had no idea what had infected my lungs so rapidly. The director of the county health dept went to my home to gather samples of potting soil and compost. Those were sent to CDC along with sputum from my lungs. But, it took over 6 weeks to determine what had infected my lungs: Legionella Longbeachae.
I feel very fortunate that many people were praying for me. I became a “show & tell” project for medical students, the CDC, etc. First reported “longbeachae ” case in U.S. even though this type of infection was common in Australia & N.Z.
Nerve damage to leg & foot and memory problems plague me but I have lived another 20 years. This disease is horrible! God bless anyone who has survived or has lost someone to this disease.
I remember your case, Sara, because it go so much attention as the first reported in the US from Longbeachae. Thanks for sharing your story, and for encouraging other survivors. God bless you, too! Full restoration to you!
I caught it and I ended up in emergency. They found it the same day I was put on antibiotics right away They gave me oxygen through my nose the next day they checked my oxygen and it was better i was released and got more medication for it but I feel extremely tired i got lucky from what I have read
I’m glad you recovered Chantal and pray you get your energy back. Thanks for sharing.
Hi there, I’m an Epoch Times journalist investigating how commonly doctors misdiagnose Legionnaires’ disease. I’d really like to talk to survivors about their diagnosis and recovery process. My email is [email protected]. I look forward to hearing from you, and I hope my article can prevent future delayed diagnosis.
Amelia: Thank you for your effort to increase Legionnaires’ diagnoses.
Eight years ago this February, my husband, then age 54, was intubated and placed in an induced coma. He had what appeared to be a cold and flu since early January, and he refused to go to the doctor. A nurse at an urgent care place, when I finally got him to go, said to immediately take him to the ER around the corner.
The first physician just wanted me to pull the plug. He was fired, and the father of one of my former students took over as managing physician, with different team members, excepting the pulmonologist. The first question the immunologist asked was, “How many times does he go to hotels in a week?” I thought he was accusing him of being unfaithful. The immunologist was instead trying to track Legionnaires.
My husband was in a coma four weeks. He was then awakened, and spent another two weeks in the hospital. He didn’t even remember coming to the hospital. We were given a case number with the CDC. It was highly expensive and insurance didn’t cover everything. Our finances are just starting to come back.
We consider ourselves fortunate he still has his limbs. His kidney function returned, a real miracle, as he was being processed for social security with end-stage renal failure. He has trouble dealing with any loud noises, particularly sudden noises. He whines, and he never used to whine at all. He has trouble with following directions from one place to the other, even with a talking GPS. His sense of humor became adolescent potty humor. He had to practice not saying stupid things, and he is a very educated man. He almost immediately put on weight because he had trouble moving, despite having lost a lot of weight in the coma. It has taken him over nine months to lose 25 pounds this year. There are other factors I don’t care to mention in public. He recently took an airline flight alone, his first since the illness. To say he was frightened was an understatement. It took every courageous fiber in his body to get to the airport by himself. Yes, he can still work, and does. We say we got 75% of him back, 85% on good days.
This is a disease that ravages more than the lungs and circulatory system. It ravages families. It affects the nervous system, and the mind. It affects relationships.
Dear Mya: Thank you for sharing your husband’s story even though it must be unpleasant to do so. It will help others understand how horrible Legionnaires’ disease is, even for survivors. I pray your husband gets back the other 25% and that your family is fully restored in every respect.
I got LD in March 26th 2010 and returned home April 30th. It went undiagnosed for at least one week before March 26th. I went to the doctor three times before they finally sent me to the hospital. Last thing I remember to this day is pulling up to the hospital and about 3 weeks later waking up out of a medically induced coma. My co-worker was standing over me telling me that I nearly died one night as I had been in a coma in ICU for 22 days. On life support I struggled for my life. In the beginning, I remember thinking I had the flu and no appetite for a whole week. I remember having a very weird sore throat. Not the usually feeling of a sore throat. Like I had insulation in my throat. I remember that the week before I was extremely tired. Like never before.My lowest point I had septic blood and kidney failure. Somehow I made it out of there in a wheelchair and off to a rehab facility. I had to learn to walk again. I went to work a week later and it took a while to regain my strength. My short term memory was really bad but is much better now. I have some nerve problems lately but overall I am ok now. I get out of breath sometimes for no reason. I had some really weird dreams that I will never forget. Some funny and some scary. I have a little story, one day at work ( Jeep sales) I helped a customer and kept saying you look familiar. We could not pinpoint where I knew him. I started to tell my story and he looked at me and said you will not believe this but I took care of you when you were sick. He ran the oscillator machine. My brain must have put his face in my mind as he was working on me. It was so freaky. I think it actually made me a better person. I think I was very lucky. I never want anyone to feel sorry for me. I continue to look at the positive side of the fact that I can inspire people. You can be at your lowest point and make it back. Never give up. I think that really the only two things you have in life are your health and relationships with other people. Other than that you really do not have anything so live your life now. I never wanted this ordeal to define my life so I recently got a promotion at work and bought an historical gold miners house built in 1980 in the mountains of Colorado. I like to sell books on Ebay at my website. It’s fun to see people happy about these old books. I say thanks to all medical people I meet. They do a job that no one else can do for people.The past is the past, the future is not guaranteed but the present is beautiful. I feel truly blessed and continue to live my life everyday as if it is my last.
Fred, thanks so much for sharing your story. It’s wonderful to hear of your physical recovery and inspiring to hear about your emotional well being. All the very best to you!
I was 39 yrs. old last Sept. I started with a ” cold” extreme chills. Then I got confused. I had a co worker take me home where I got sicker ( I don’t remember). I guess I was slurring, confused, fell a few times. Finally my son called my mother a few days later. She rushed me to the hospital. ( again I don’t remember any of this) I was put into 3 different comas one being a paralysis coma. For surgery because my bowels preferated and I was septic. I had a fever of over 107 F. They finally decided to test me for LD and it was positive. I spent 35 days in ICU. and another 22 days in the hospital.I have extreme memory loss, confusion, numbness, concentration problems, severe pain, now I’m still on tons of pills. Next month will be a year. I was the 2nd case in my state. I can’t work. Dr.s are trying to figure out what’s wrong. I just had a MRI and they found a small tumor. So now we’re trying to figure that out. I had to ” fire” the dr. they gave me after the hospital. She told me you HAD legionnaires get over it! I’m still struggling I can’t work and I’m still fighting SSDI and I haven’t had income this whole time. I feel lost. I feel like a guinea pig. Dr.s around here don’t know anything about my condition. Now they’re sending me out of state. I don’t wish this on anyone. It’s devastating and I’m still suffering and no one but my family believes me.
I’m so sorry for your suffering, Tasha. The illness would be bad enough, but feeling like your doctors are lost and your family doesn’t believe you must be horrible. I pray you have breakthrough into good health and wholeness in all respects, including the ability to work and become financially whole.
My story is the same. You wake up to hell and find out a month has passed and you shouldn’t have lived. Then the rehab. No answers. I went through rehab quite well but I have problems almost 3 years later. I have a lot of trouble working (eyesight, shaking, memory, fatigue). If I am home I can rest and go at my speed but too much and I will get sick. I lost a lot of weight. Before, I did not have health problems (which is what they said saved me). The financial impacts are tremendous. Actually devastating. I lost so much time from work and now can’t work much. My family has suffered. I try to hide it although they are constantly worrying and want me to get additional medical help. Well there isn’t any. I was at an excellent hospital that saved my life but nobody talked to me about post ICU syndrome, why my 2 fingers lost feeling (they even told my ex-husband he would have that after his surgery), just no information. Oh, I now have diarrhea and bladder trouble from this. My primary care physician doesn’t have a clue. What do people do when it impacts employment – maybe forever? Oh, same thing. I was the only one to get it with no risk factors. Is there a way so have social security or something help? I don’t even tell my family how bad it is. Oh, and anxiety.
Thanks for taking the time to tell us, Cara. It helps increase awareness of the disease. I’m so sorry you have suffered so much. I pray full restoration for you!
My name is Erin I am now 35 years old but when I was 25 years old I had contracted Legionaries. I spend 21 weeks in a coma. For a couple of years I had many bad day’s. I had to learn how to do everything all over again, but now 10 years later I have come so far. I get pneumonia frequently, i struggle with shortness of breath but I have been cleared to recieve another kidney tranplant, something I was told years ago would never happen. I have recently requested my medical records with hopes that it would help me make since of everything. What I have read has really surprised me.
In Septmeber 2005 I was admitted into the Hospital due to my tranplanted Kidney, they believed I was rejecting the kidney. They had given me medication to lower my immune system, which didn’t help, the kidney was still failing. While trying to save this kidney i complained of not being able to breath, for two weeks it was getting worse and worse. On October 16th I was moved down intenstive care. According to my medical records on October 17th a test on my lungs was conducted. Oct 18th I stoped breathing and had cardaic arrest, i was put on a ventilator and put in a chemically induced coma. My family was told that I was septic. The CDC had come in, they asked alot of questions and determined that I didn’t have anything (I recently recieved a letter from them stating that) however the test on my lungs was sent out to the lab Oct. 21st to MAYO lab. On my birthday October 25th the results came back I had legionaries disease. (However they never notifyed the CDC) my prognoisis wasn’t good. The doctor stood in my room and told my family that I was never waking up. The odds were agesnst me. I have recently met that doctor and the social worker who continuly told my parents they need to understand the gavity of what was going on. With tears in there eyes they can’t believe that i’m standing before them with the only visual signs is the indent where a tube once was to breath life into my lungs. If you met me you would never know the affect this ordeal had on me. The PTSD that suffer from, the neopathy in both my feet, I have gastroparesis and a lot of bad memories.
Wow, Erin! I think that’s the third time I’ve read your story and I’m still moved by it. Thanks so much for taking the time to share it. As mentioned in an email to you, I pray 100% restoration for you! And soon!
October 31, 2014 I remember feeling so tired and had never felt as bad as I felt in my life. I just felt as if my body was shutting down. The next day I felt fine. Then on Nov11, 2014 I remember coughing very loudly 3 very loud abrupt embarrassing cough at a meeting at work. I left work that day and went to the doctor. I told her about the cough and how it felt like I had pulled something in my back when I coughed. She listened and did not hear anything unusual iny chest. She treated me for a pulled muscle and sent me home. That was the last thing I remembered until I woke up Dec 15 with my daughter telling me I had been in a induced coma since Nov 17. I had been admitted to the hospital and treated for pneumonia. The antibiotics did work and I went septic, had congested heart failure and my kidneys started shutting down as the rest of my body. I was intubated and finally had a tracheostomy. My heart was shocked twice. Finally they discovered u had Legionnaires and was treated with the correct antibiotics. I almost lost my legs and feet.. I did not know any of my family. I lost all my muscle strength in my legs and was very weak. I had to build my strength back up to walk again. Doctors said I would require at least 6 months of therapy to walk again . But through the powers of prayer and by God’s grace I was able to use a walker and leave that special clinic on December 24, 2014 to celebrate Christmas with my family.!! I did have terrible nightmares from all the medicine I received for several months after going home. I was able to go back to work at my part time job as a receptionist on Janurary 25, 2015. It was a life changing experience for me. The state health department was contacted but they told me I was an isolated case and that sometimes it just happens and I may never know where it came from. I live in Mt. Pleasant, TN and the only other case that has been made public around here was a lady in Franklin, Tn that worked at the Williamson County Courthouse in 2015.. I contacted the local TV station hoping they would make my case known so our local hospitals would know to check people for Legionnaires instead of letting people die from not being treated correctly because they are not used to treating legionnaires. I can not help but wonder how many people have died because of this. Please spread the word to check for Legionnaires if you have a love who is continuing to get worse. Don’t just let the doctors let them die because they say they are old or have poor health. I was 57 and that time. I am enjoying my family more than ever and so thankful for my health and time I get to spend with them.
Wow, Carolyn, your bout with LD sounds horrible but the testimony of your recovery and healing is encouraging. Thanks so much for sharing your story.
Carolyn, I had undiagnosed Legionnaires Disease & went through so much pain & shortness of breath… my husband & I both had it. It started on June 9th this year. You mentioned ‘your legs’ in your story… I’ve now been having pain in my legs, even had an excruitiating experience in one foot… does this come with Legionnaires?
Patrice, Your and Caroline’s stories are perfect examples of why this site and LD Syndrome support groups are so important. LD Syndrome is terribly understudied and misunderstood. It is multifaceted and pervasive. I believe because we are different and weakened different ways that we have wide and varied experiences. Yes I not only have heard of muscular problems such as yours, but experienced some myself. I lost my balance, experienced weakness in my legs, tripped often and experienced ‘restless leg syndrome’ for a couple of years post LD infection. Exercise, eat well and stay positive and you should be asymptomatic soon.
Eric, I recently had Legionnaire’s disease in July. I was in the hospital almost a month, and was intubated for six days. I have limited memory from July 4-July 22. I had to have physical therapy to learn to walk again. I am still in therapy because I have instability, and have fallen four times. I also suffer from dizziness which will be tested next week. I have neuropathy in one leg and foot, which can be attributed to antibiotic toxicity. Is there any place that specializes in LD Syndrome? I have never heard of this before.
Where did you and your husband contract it?
We’re had a family function in one of our homes, at which there was a hot tub. Only two children used it, with parents/grandparents nearby, keeping an eye on them. The next week, 7 of 20 people ended up with pneumonia. One, on a vent, was septic, so much fluid, he was drowning in his fluids. Finally the sputum culture came back and LD was diagnosed. The correct antibiotic was immediately put in place. Dialysis was the life saver. Now, the patient is coming around 15 days later.
Our assumption is that us other 6 have it too, but they say too much time has passed to adequately test us.
Wow, 7 people! I’m glad everyone survived. It’s good the doctors made the diagnosis and prescribed an effective antibiotic.
I have love for you all. 4 years ago I was under the legionala induced coma for a 8 weeks. I was 45 at the time and really woke up in the psych ward with security. It took a while for my mind and body to reconnect. Your descriptions of your times make me feel foolish in my feeling sorry for myself. It cost me my marriage and my sanity at times, but nothing physically after much work and rehab. The one thing that never leaves , is the power of dreams and being asleep for 8 weeks is a hell most can’t endure. I will never sleep the same way again, I’m to connected to the other side now.
Hi Craig. We love you too! Thanks for sharing your story. It’s good for us to hear how Legionella affects individual lives. I pray full restoration for you, that all you lost will be redeemed. May God’s grace break any connection you have or feel to the dark side and bring you into his marvelous, healthy, and wonderful light.
My father survived LD in the 70s. He got it from the cigarette company he worked at. I was probably 5 or 6 when he had it. I think it really effected his nerves. Some days he was really up and some very irritable. I think it has lasting effects that’s for sure.
Hi Linda. Back then not much was known about the long term effects of LD. Not knowing that long term symptoms are not uncommon with LD probably made it harder for your dad to cope. Thanks for letting us know
Hi
Just to say that I have asked for LD test as been very ill for last 3/4 weeks with what doc says is severe kidney infection and lower lung infection. I had two weeks of v strong dose antibiotics for chest and different v strong for kidneys. Ones for kidneys were changed after week to long release strong as bloods showed not working.i had high temp and chills low no and stats been sick and loss of appetite and memory, very fatigued and aching muscles and joints with permanent headache.since I stopped antibiotics 2 days ago I’ve ended up admitted to hospital with septic bloods and I’m on IV drip antibiotics. Initially was treated for menangitis. Now decided septic blood. I’m pretty sure could be LD as found to be live at work. Am I ok in asking to test as always say it’s hard process here in EU.
Hi Linda. We cannot give medical advice. I don’t think there’s anything wrong with asking your physician if you should be tested for Legionella. I pray you feel completely well very soon!
9 years after contracting legionaries disease I’m still not working, why!! Fatigue, headaches, short term memory and anxiety. I loved my job and got a good pay check doing it. I was an production supervisor for years. Post injury I just wasn’t capable and confident enough to perform my job. Not a good feeling and It’s no joke. Times you feel so normal or let’s say as things were but then the table turns, unknowingly.
I’m so sorry! Although it must be terribly frustrating, I pray you’ll stay encouraged and see a full recovery soon.
My father is in the hospital now. He was just diagnosed with LD.
He was in the ventilator for 6 days.
We were lucky they figured out it was LD right away.
My dad has had 2 kidney transplants, and losing his kidney was a huge scare for us.
He was put in a regular room today. He is so confused.Almost childlike.
This scares me.
How long did it take you all to get close to normal again after you were taken off the ventilator?
-Mandy
I went into the hospital on June 12th of this year. I do not remember the five days before I went into the hospital. I was put in a medically induced coma for two weeks. When I woke up in the hospital, I could not move. I did not know where I was or how I got there. It was horrible. My lungs and kidneys had failed. I could not remember anything.
I was in the hospital for one month. It took about three weeks after waking up from the coma for me to begin to remember things. I still have no memory of the days before I went into the hospital.
From there, I went to acute inpatient rehab. I still could not do anything for myself. I had to learn how to do everything again.
I was in rehab for five weeks. While there, I was able to learn to walk again and take care of myself. It took about three weeks before I could stand on my own. I began to take steps about a week later. My breathing got a lot better.
It is now five months since I was taken to the hospital. I am still working on taking care of myself. I am extremely tired most of the time. I am in a lot of pain in my shoulders, back, and legs most of the time. I have problems with my balance. My core muscles, thigh muscles, and back muscles are still weak. My doctor thinks it will take 18 to 24 months before I am back to normal.
BJ, I’m sorry you suffered so much. I pray you continue to improve and are 100% long before the 18-24 months predicted. Do you know where you contracted Legionnaires’?
Encourage hospitals that for persons presenting with pneumonia symptoms to test for legionnaires immediately by urinalysis. My personal experience was that my testing was by growing cultures and after acute respiratory failure,10 days intubated in ICU and with sepsis, in an induced coma and almost 2 weeks in the hospital, the culture came back positive on the day I was discharged. The details are identical to others’ comments here.The urinalysis test can give results within hours or less and treatment can begin immediately.
It has now been suspected that in years past that some persons that were diagnosed for pneumonia and did not respond to treatment actually died from legionnaires.
Thank you for sharing your story and recommendation, Lester. The CDC points out that a quick diagnosis increases the chance of survival. The urine test screens only for Legionella pneumophila serogroup 1. Do you know what strain of Legionella was detected in your culture analysis? I’m thankful you survived!
Where did you and your husband contract it?
We’re had a family function in one of our homes, at which there was a hot tub. Only two children used it, with parents/grandparents nearby, keeping an eye on them. The next week, 7 of 20 people ended up with pneumonia. One, on a vent, was septic, so much fluid, he was drowning in his fluids. Finally the sputum culture came back and LD was diagnosed. The correct antibiotic was immediately put in place. Dialysis was the life saver. Now, the patient is coming around 15 days later.
Our assumption is that us other 6 have it too, but they say too much time has passed to adequately test us.
Wow, 7 people! I’m glad everyone survived. It’s good the doctors made the diagnosis and prescribed an effective antibiotic.
I had it in 2009. I worked in a hotel so I suspect that but health board said I was the only one so they dismissed it
It’s pretty common for health departments to investigate only if two or more cases are reported. Thank you for commenting about your experience!
Hello fellow survivors,
I was diagnosed with LD in March, 2014 (my comment appears at the top of this string) and although so much time has passed that I can’t remember all the details, I thought I should comment again. Reading your stories has helped me tremendously. For one thing, they confirm that the muscle aches, memory loss, neuropathy (I’ve been trying and trying to figure out why in the heck I have neuropathy in my feet!), fatigue, etc. are the results of the long term effects of LD. My story is much like everyone else’s – I was on life support, physical rehab, long recovery. The big difference is that while I was on life support, I had wonderful dreams! The rest of the experience, however, was horrific. I told my story on this website back in 2014 but can’t locate it anymore so please forgive the lack of details. Just know that our stories are more alike than different. Thank you, Matt Freije, for allowing us to tell our stories. Somehow, it helps.
Thank you, Janis, for following up. I think your comments will be a big encouragement to other survivors. That’s awesome that you had wonderful dreams!
My husband showed signs of the flu 10/11/16. He told his coworker at the end of the day that he felt like he was coming down with the flu. He doesn’t remember anything, even driving home; until he woke in the hospital about 4 weeks later. He and I both thought it was the flu, nauseous, diarrhea, congestion and weakness; but nothing serious. 5 days later, and him refusing medical help; he fell twice and was quickly becoming incoherent. At ER his oxygen was only 82%. He had been healthy but his heart went into A-Fib in ER. He ended up 37 days in ICU where he was intubated and suffered a heart attack and kidney failure and ended up with dialysis and a tracheotomy. After about 3 weeks of going downhill and even required being bagged once; he started to improve and aware. From ICU he went to a respiratory Specialty Hospital for 14 days, to wean him off the ventilator, remove the tracheotomy and to learn to walk. He still can’t do much without becoming out of breath and exhausted. His heart might improve but his kidneys do not show any improvement. He’s riding the edge of needing dialysis but has been able to avoid it since the hospital. He still shakes, some days more than others.
He is (was) an Automotive Repair Technician. I’ve been researching a lot of study’s related to Legionella bacteria being in car window washers and spraying causes the fluid to drip down the car ventilation systems; and that “Professional Drivers” are at risk. The UK has estimated that over 20% of sporadic cases of Legionnaires is due to cars. Yet there is no research on the Auto Repair Techs. For the few names I’ve found, 3 of them work in this field. NY CDC has conducted a survey of Legionnaires by Occupation, but they bulked sporadic cases with outbreaks and admit the need to conduct another by sporadic cases only for clearer results. But their study concluded the two top fields for Legionnaires by occupation are Transportation and Repair.
I have setup a FB group for Auto Mechanics with Legionnaires so I can provide all of these links for others. Had we known earlier, my husband would have worn a paper mask to keep the sprays and vapors, common on automotive repair; from entering his lungs.
I don’t know if you can help educate people or promote studies in the US. But I can use all the help I can get. Nobody should have to endure this disease unnecessarily.
Thank you for sharing your husband’s case, Lucy. People need to hear about it. I’m glad he survived such a horrible fight and pray he recovers fully from all the symptoms. If they are not already, maybe health officials should include windshield washer fluid in the sources they consider in Legionnaires’ investigations, and car makers look at ways of reducing exposure.
Hi all I got ld in quesada in spain July 2016 I thought it was flu my girl friend insisted I go to my doctors in crich I was lucky my doctor was on holiday I saw a locum he said he had diagnosed it 20 years ago he said I think you have LD go strait to kings mill hospital put on the ward with fans on blood test confirmed ld rushed to icu I was going to be induced into a coma to bring my temp down but my temp dropped I spent a wk in icu then sent home I am knakerd all the time no energy I don’t want to do anything and if I do I am weak as a kitten it knocked the stuffing out of me signed work for a year Feb 2017 it was scary but I did like the morphin ?
I’m M.B. from upwards toward the top of this article. It has been 9 years since I had Legionnaires and I have never “recovered”, just learned to live with a new kind of normal. I’m on disability because of short term memory loss, chronic pain, neurological damage, anxiety, depression, migraines, fibromyalgia-type pain, none of which did I have before I was sick. I am still so grateful for waking from the coma against all odds, but every day is a different level of pain. I feel like I’m related to everyone who wrote comments above. My family gave up on me a long time ago, thinking I was just “milking” my illness and being lazy. Fortunately Disability didn’t see it that way and I was approved quickly because my working days were over. I’m lucky if I can get up and go for a walk on a nice day, drive more than 30 minutes, take my teenage son shopping. I’m only 52, and the pain gets worse every year. I put my faith in God. One day at a time, every day learning how to live a new kind of normal. And I’m still glad to be here.
Thanks for the update, Marcia. I’m trusting that sick is not your new normal, and pray you will become completely well, soon.
hi Matt, my name is Catherine Moore, I’m 54 yrs old I was diagnosed with legionaires disease in july of 2017, I just now found this website on people after LD diagnoses after my sister and I looked for months on info. about peoples recovery. I too am not recovering it seems, and what i’m reading is scaring me. I have little or no balance, my memory is all but gone, I too am in excrutiating pain all over, and get so frustrated trying to get reabilitation help! YES I’m very happy to be alive, how ever my life in every aspect has been turn upside down! Matt, I’m experiencing every symptom you have just stated, and the doctors either don’t seem to be helping or they’re slow playing me! I should’ve been in physical therapy when I first was released from the hospital! The Health dept. says they won’t investigate (test the site) where I believe I got the legionella bacteria from!, said they won’t get involved for only one case! therefore I can’t get workmans comp. and I do have an attorney for disability, but just now got my first denial and of course we’re appealing it. what i’d like to know is about how long it took you to get approved for disability and what kind of doctors you seen to help you through till the point your at health wise and ONE SYMPTOM I’M HAVING THAT YOU DIDN’T MENTION ABOUT YOU IS I’M ALMOST COMPLETELY BALD! They’re telling me it’s from my thyroid not working. and they have me on thyroid medication, but it’s not helping! (I used to have dark brown eyes which are now hazel, my hair has always been so thick and down to my hipps that I actually had to have it thinned to prevent headaches ! and was that way till I contracted LD. My sister is typing this because i’m unable to function at that level with out getting so frustrated that my stuttering is showing up in my physical actions which I never stuttered before. and eventhough I’ve finally found your info on how your doing past your diagnosis as you can imagine it’s quite depressing to know I may never get much better than I am right now. I am patiently waiting for your answer. DID YOU EXPERIENCE HAIR LOSS AND STUTTERING?
I’m so sorry for your suffering, Catherine! I’m going to forward your questions to someone who might be able to answer them (I specialize only in water system management.).
Catherine,
I contracted legionnaires with double pneumonia in April 2017. I was at home thinking I had the flu and refused to go to the doctors. Ater 5 days, I was delirious and falling, so my husband took me into the hospital. At first, they thought I had COPD, or I was on drugs, etc. but I was diagnosed with the disease one day later. They vented me, my kidneys went out and was on dialysis for a month, my heart went into A-fib, my body went septic. You name it, I had it. My family was told to prepare themselves because I may not make it. I had the wildest, scariest dreams anyone could imagine and I remember every single one of them, which is crazy because I don’t remember anything else. I had to learn to walk and feed myself all over. I went to rehab for 4 months. Now for the question, you asked about hair falling out. While I was in the hospital and more four months after that, my hair was coming out in handfuls. I finally went to the hairdresser when the hair stopped falling out and they cut it short. My doctor said it was all my body went thru and the medications I was on that made my hair fall out! Stress had alot to do with it! Hope this helped! I ran into the doctor that saved me two weeks ago at my lung appointment and he said, there were 4 days where he wasn’t sure I would make it! By the Grace of God, I am here today!!
Thanks so much for sharing your Legionnaires’ experience, Debbie. The details you gave help those of us who have not had the disease better understand how horrible it is–even though we still do not understand it like you do. And thank you for responding to Catherine Moore’s questions. All the very best to you!
Thank you , Matt! It has been a journey that I don’t want to do again and hopefully, others will understand a little better what they go through when they get this disease. The bad thing is we had 3 people get Legionnaires at the same fitness center. I was the first one and they did not do any testing until the other 2 came in. The second person died which is where I was but my body fought it!!
This is too late to help you, but for others – the hair loss is called Telogen Effluvium, and can result from any shock to your system.- – severe infection, car accident, surgery, childbirth. Basically your body thinks it’s in trouble and doesn’t want to put any energy into growing hair. And we don’t actually need hair, do we? It starts two to three months after the ‘trigger’. and most people lose about half if it. It generally starts growing back about six months later, who knows what color, straight or curly, those can change. I’m at the ‘wait and see’ stage. But at least it’s stopped falling out. There isn’t any treatment, you just have to wait it out.
Hi Janis, I Had LD in June of 2019, in hospital ICU intubated 2 weeks, left hospital after that,then rehab for about 3 weeks to get walking, still walk with a cane and no feeling in left foot and week left calf. Seven months later still have to walk with cane and pain on foot at night. I still hope I will recover more, but not to optimistic now, hat asking family to drive me to stores. I was very sick, Dr.’s said I was was strong, I am a bit older got it at 68, I send good wishes to all who have suffered or are still suffering from it.
Catherine,
I am a 69 year old Legionnaires Disease Survivor. 5 years ago, when my LD recovery began, I recognized two things. 1. LD Syndrome is a cruel, pervasive multifaceted process. 2. Most Doctors are unaware of it and unable therefore to treat it.
I have since learned many additional things.
LD is not a cold, virus or flu. It is a Disease, and it kills. To survive it you fought the battle of your life. To overcome the resultant Syndrome the battle will continue. Keep in mind that LD Survivor All report a fog that clouds their path to perform usual simple activities. No one has a crystal ball. Everyone is different and time for full recover cannot be predicted. Here are some simple suggestions.
Seek further medical care at a major population medical CLINIC as Doctors there have more experience treating LD Syndrome patients. ie. PITT, PENN, Hopkins, Rush, NY Presbyterian, MAYO.
Stay positive and active at all time. Keep in mind that you will recover. I repeat, you will recover. You will begin to recognize your recovery in exponential increments. It requires a positive, active, personal approach.
Engage in mental activities. ie Lumosity, flashcards, simple games.
Pace yourself; especially at first. Don’t overtax yourself. Get more sleep as you brain works harder now to perform daily activities.
Get to the gym if you can. Walk if you can’t. Eat well and maintain your general physical health. Find an activity such as Tai Chi Chih. ( google Tai Chi Chi, not Chaun. Try it. You will meet positive people and learn about active meditation. The four top activities to promote mental strength – Dance, board/card games, playing a musical instrument and reading Tai Chi is a subdivision of dance.)
Find other Survivors and read their story. Share your story to help others.
Catherine. What you are experiencing is not uncommon. I have communicated with dozens of survivors in Asia, Europe, Australia and North America. They all reported similar issues as you. They all have or continue to recover. Stay positive and active. LD did not take your ability to control your future.
Wow, thank you so much, Eric!
You are lucky, in that you got proper care and treatment , I didn”t get either and am dealing with
the aftermath , with neurological disorders now, no one seems to understand or care
Hello, my name is Robert Soto. I have been on the internet for sometime now trying to find others who can share info & help direct me where to find long term affects of Legionnaires? My story begins in 1990 while I was active duty serving at FE Warren AFB, Wy. I began to feel ill, had difficulty breathing and had a fever. Luckily I was in Denver, Co when I began to get sick. I had my friends rush me to Fitzimmons MC. I last remember being asked a few questions and woke up about 6 days later. I had been in a medically induced coma; diagnosis was legionella. I spent a total of 36 days hospitalized. I was only 21 at the time. I am now 48 & have issues breathing & sleeping. I sleep with the assistance of a CPAP, have asthma & bronchitis. I have been awarded a VA Svs connected rating but the VA tells me there isn’t any connection between my current breathing issues, my feeling tired all the time & my losing stuff all the time. WHERE can I find anything to help my cause?
Hi Robert. I’m so sorry to hear you are still suffering after so many years. I pray you regain healthy breathing and consistently good sleep!
Eric Schoenfeld can probably suggest specific resources for you. Thank you for sharing your story. You’re not alone.
I had LD 12 months ago but now when I get a cold it always turns into a chest infection which needs antibiotics and steroids to clear it. Does anyone know if LD damages your lungs as can’t seem to find an answer?( I did have pneumonia)
Thanks
Carole from England
Carol, I sympathize with you because I experienced the very same post LD issue that you are experiencing. For months during recovery my Family Physician treated me for breathing problems. He thought that I had COPD as a result of LD. During the second winter after I contracted LD I was hospitalized because I could not breath. My blood oxygen level was so low that I was admitted. There I met a Pulmonologist who after a period of study, testing and treatment realized that my condition was not COPD. Rather I had a form of chronic bronchial asthma (Sounds exactly what you have) which requires a very different treatment and care regimen than COPD. So now listen. I am not a Doctor, but I can tell you from my experience I went through exactly the same repetitive lung infections and steroid antibiotic treatment you are experiencing. So you now need to think about care and prevention. At least for the very near future. Seek care from a caring pulmonologist. Get on a course of preventive care. Your lungs were severely damaged by LD. They will improve but you need to be pro-active and positive. During cold weather breath though a scarf or fur glove. That will warm the air entering your lungs. Get plenty of aerobic exercise. Avoid moldy environments and until you have things under control stay out of bacteria ridden environments where lung infections are contactable, like saunas, steam rooms and hot tubs.
The LD insult to your lungs was significant. Far worse than common forms of pneumonia. But with a positive attitude and a pro-active regimen of preventative care you will improve exponentially.
Robert,
Your LD Syndrome issues are not uncommon. Not only are your physical, cognitive and emotional complaints characteristic of the Syndrome but your unanswered pleas for competent medical care and quidance are as well. The medical industry is not yet equipped to address LD Syndrome. You see while the Syndrome is pervasive, multifaceted and cruel, the relatively few case reported each year do not justify the cost of research.
That being said, there are qualified medical experts out there who do have an excellent understanding of and empathy for LD Survivors. The are at medical clinics in large population centers where they have more experience treating LD Syndrome Your problem is that you may be bound to VA Medical Service system. If you can, you need to seek Neuro cognitive therapy and rehabilitation for memory issue. In effect LD is akin to a mental aging process by attacking cognitive and executive functioning centers. It can and often does impair the Survivors ability to process information. The VA must have cognitive therapy services for such conditions in their geriatric care units. If you can’t free yourself from the VA System, than insist that you be examined and evaluated and started on a cognitive improvement therapy and rehabilitation program. In the alternative get the Lumosity app and register. The four best activities for cognitive health: dance; playing a musical instrument; board/card/mind games; reading. I am a strong advocate of Tai Chi Chih. It is a form of Tai Chi that promotes positive mental, physical and emotional health. There are instructors all over the country. It is easy to to do and if practiced will help you address absolutely every one of your LD concerns. Visit TaiChiChih.org
I don’t know why the VA System struggles to recognize the connection between LD and Cognitive impairment. There are many Drs. located at major medical clinics around the country who have in the last few years begun to recognize the causal connection between LD and cognitive (pulmonary) and fatigue residuals. Keep in mind that your brain is working harder today to accomplish the same everyday tasks, then it did before LD. Hence, the mental fatigue. You need to get plenty of sleep. Nap at least 1/2 hour every afternoon. Exercise at least 1/2 hr four to five days a week. Eat well.
The acute stage of LD includes a significant pneumonia component. The insult to the lungs is long lasting if not permanent. Keep in mind that LD preys on people with prior pulmonary issues. If so LD will exacerbates the severity of those pre-existing condition(s). My experience is that LD made it extremely difficult to manage my prior bronchial asthma. Any medical provider who cannot understand that must have slept through most of med school.
Difficulty sleeping may be anxiety related. I have spoken with or read the testimonials of dozens of survivors. Most recognize that they are not the same person they were before LD. They are severely saddened, especially those who like you, functioned at a high efficiency level before illness. Military service is a 24/7 responsibility requiring the highest levels of awareness, purpose and cause. LD attacks these qualities in a most hellish manner leaving us in a compromised emotion state. Keep in mind that this resultant anxiety, anger and fear will serve no good purpose. Its’ only goal is to tax the brain, increase mental fatigue and impair mental fluidity. That is why it is so important that sadness, anguish, anxiety confusion and fear be tamed. These useless companions need to get out of the way. There are plenty of ways to address the emotional aspect of the Syndrome and I leave it to you to decide whether to go it alone or seek professional guidance. I hope you choose the latter.
Visit this website. A Netherlands Legionnaires Disease Survivors Group .
http://www.stichtingveteranenziekte.nl/
There you will find a video Legionella Leeft ( Legionella Lives). Watch it with English subtitles. There you will find during the first few and last five minutes testimonials of survivors who all suffer the very same issues as you. Perhaps this video may help convince your medical counselor of the severity of your plight.
Remember: “While you can’t always choose the hand that you are, dealt, you can choose the manner in which you deal with it” ~ George W. Bush
“Success is how high you bounce when you hit bottom.” ~George S. Patton
It took me time to recognize and accept my new normal. Once I did I found it easier to work toward making myself the best I could. Fight to get the best care and guidance you can, but remember; while LD took much from you it did not take your ability to control your destiny.
Best regards, Eric
Thank you Eric!!!
Many thanks Eric. I have just started the process of having my Rating reviewed since it’s initial date it went into effect, 2009. I will continue to gather info for my cause & with feedback like yours, I hope I will find more answers to my questions & be better prepared in my pursuit of answers. Most appreciated. RGS
I am sitting here with tears in my eyes because I finally found a place where people understand what I’ve been going through. First let me say thank you to everyone who shared their stories.
I contracted LD in 2017. I went into the emergency room on the 26th of January and was finally released on March 29th. I suffered from the same symptoms, such as septic shock, kidney failure, respiratory failure. I don’t know how many blood transfusions I had. I could not talk or walk when I woke up. I was fed through a peg tube and had a trachea tube, not sure what that was for til this day.
I did not have health insurance so rehab was not an option. I was given an initial visit by a physical therapist who taught my boyfriend and I exercises. Therefore I had to relearn both with the help of my boyfriend at our home. It took 3 months before I could take a shower without assistance.
While in the hospital, I also lost my job. I lost 40 pounds and now I have Cognitive Heart Failure, Rheumatoid Arthritis , Carpal Tunnel Syndrome, anxiety, Alopecia, fatigue and memory loss. I take 5 different medications a day, twice a day.
I still do not have insurance, so I have been unable to see a Pulmonologist, or a primary physician since I’ve been home. I was able to find a cardiologist through the hospital, which is free to patients and funded by private donations. I am able to get my medicines through the nurse practitioner at our local county health system.
Shout out to the Trina Hildago Heart Clinic in Orlando.
I’m always tired and sometimes the pain in my joints makes it hard to do ordinary things, like opening a jar. It’s been a real struggle financially, not to mention the hospital bills. I also have times when i can’t remember the word for things. I forget things as well.
Being honest, it bothers me when other people make comments, such as “imagine how sharp she was before”, or “you’re not ready”. I try to remind myself that they are coming from a good place. I’m slowly coming to terms with my new reality.
Thank your for this outlet.
PS. Can you please relist the link to the Taichi page? I gained 50lbs and need to lose some weight and I think this would be a good exercise that would not be too hard on my heart or joints.
I’m so sorry you’re still suffering, Ivy Jean. I pray it’s not your new reality but only temporary, and that you will be fully restored to excellent health. I apologize that I don’t have the Tai Chi link.
I came across this site tonight while looking for answers to my slow recovery from legionella, for which I was hospitalized for a number of weeks just over a year ago. Thank you so much for the link to the video from Holland, which I have just watched in its entirety. I am encouraged by the posts here because I see that I am not alone in the struggle. It is strange to be the only person I know who has had this disease.
I contracted (LD) sometime last August or September
I’ve lost alot of memory from it past and still forget everyday things.
The wife said she had a hard time getting me to go to the ER and when I did go the nurse’s and Drs thought I was fine because I was being myself and joking around with everyone
Minutes later I guess my temp was over 106 and I was in a coma
They gave me a 5% chance to live and my Dr friend told my family he didn’t think I’d make it through the night.
They say i was in a coma a couple weeks and when I came to I was paralyzed.
I’ve always been very dependant on myself and was very frustrating to have someone feed me and my daughter push me around in a wheelchair.
Spent all of September in the hospital and their rehab facility
It’s caused alot of pain for my family and I, and it’s still effecting me.
I think I got the disease while on vacation in SD at a motel hot tub,was a guy in the hot tub from Oregon or somewhere out there and he was a pilot
My wife was out turning it on the reason I think she didn’t get it.
I don’t remember the guy’s name but if he or anyone would happen to think they know him, I’d sure appreciate it if you could have him or family member get a hold of us.
Hope he’s doing good
My main problems from the disease is I get very tired easy and very frustrated not remembering
Depression is real
Glad you beat the low odds the doctors gave you for survival, Larry, but I’m sorry you’re still suffering so much. I pray you recover fully and quickly and even in the meantime are filled with hope and encouragement. Thank you for sharing your story–it helps others who are fighting to get their life back after LD.
i feel I was not treated right when i had legionnaires-disease. i remember thinking I had a bad bout of flu and driving myself to A & E and being there for about 8 hours and then being discharged and then ending up there again , the next night, as could hardly breathe and had a terrible pain in my right side and was vomiting every 10 minutes , I also had diarrhea. this carried on for 6 days and was in hospital for a 7 days i was in isolation. i had no icebath, no ventilation, no ICU and no oxygen. I had to beg for the nurse to bring me more water (she would not give me ice as the orderly that got it was too busy)., my fever was so bad, i would soak a napkin in my drinking water to soak my face, and pace the floor, i
was an asthmatic (well controlled, before this) and they would not supply an inhaler for me (I was meant to bring one from home, when i had pneumonia ??) sometimes I would lie on the floor where it was cooler as it was lino. no nurse came to see me on those long nights, the only kindness i received was an orderly that gave me an iceblock because I looked “hot”. I have requested my blood results and i had a temperature of 41 for 3 days i can not believe the way i was treated. i wish someone had looked out for me and treated me right as i have serious health issues now as a result (I believe) of this. I have numbness in my face, memory loss, headache, muscle spasms. Thanks for listening, Sarah-Jane
I’m so sorry you have suffered so much, Sarah-Jane. It’s bad enough to have to fight illness. Receiving inadequate care makes it even worse. I pray you recover fully and feel good again.
I left work on July 1,2016 feeling awful. On July 3 went to urgent care, they said I had inner ear infection. Last thing I remember is being in ER on July 4.Family was told they couldn’t find anything wrong but because my family insisted, I was admitted to hospital. We were told my lung x rays showed nothing. July 5,I was delirious, slurring my words, having outburst, the Drs. ran all kinds of tests, couldn’t find anything. More x rays showed my lungs we’re full, was so put in ICU on ventilator and induced coma. I have no recollection of ant of this, I remember leaving work, going to urgent care and pulling up at ER but everything in between is gone. Drs. started asking about my life, if I had been out of country, all kinds of stuff, finally about my job. I managed a restaurant for 35 years, so that is when they tested for Legionnaires. Test came back positive. I was septic, renal failure, respiratory failure and on top of Legionnaires, I also had necrotizing pneumonia. At one point, family was called in late one night because they were going to try to take me off vent, luckily that worked out but then the neurologist said that part of my brain was not functioning and that I would never be right but my family refused to believe that. After 3 weeks in ICU, I was woken out of my com’s, which after stopping the drugs, took 7 days before I woke up. When I finally came to and knew what was going on was July 28.I was sent from hospital to rehabilitation center to learn me to walk again. I still have a lot of things going on that I never had before. I have neuropathy in both feet, anxiety, depression, balance is really bad, had to have my hair cut short because it was all falling out. Got really aggravated, wondering if I would ever get back to normal. I occasionally get on internet and look at different sites about Legionnaires, that is when I found out that there are long lasting effects of the disease and that it all wasn’t in my head. It is amazing hearing other people’s stories and the things they have went through. I think that this disease should have some better guidelines for health agencies to investigate. The hospital notified my local health department. When I finally got home, I called to see what had been done and was told that because I was the only case, there was no protocol to do an investigation and when I applied for Workers Compensation, it was denied because there was no doubt according to my medical records that I had Legionnaires but because the health department did no investigation, they could not say that it came from my job. I often wonder if I had died would there have been anything done. I do know that after I got sick, even while I was still in hospital, some of the people I worked with told me that they started to make the employees start cleaning and sanitizing stuff they never really did before, got new air conditioning systems and a lot of other things they normally didn’t, which made me think that, even though they said to me that they didn’t believe I contracted the disease from work that they knew and were trying to get everything cleaned up in case they got inspected. Thank you for the opportunity to hear other stories and tell mine. CK.
Wow, what a battle, Cheryl! Thanks so much for sharing your story.
I am a 38-year-old woman. I had legionnaires when I was 13. They struggled to diagnose me and said I would most probably have died if they diagnosed me a day later. I actually made my peace, because I did not think my body could take another day. I was out of school for 3 months. I was very healthy (although I did have bouts of fatigue) until I had my babies a few years ago. Since then every winter I get bronchitis and pneumonia multiple times. I work for myself and this has impacted my life negatively in so many ways. People cannot understand why I am constantly sick and tired. I am a real go-getter and it breaks my spirit when my body just gives out on me…
Thank you for sharing your story, Lizette. I haven’t heard of many Legionnaires’ cases among teens. Did health officials determine the location and type of water device (e.g., cooling tower; spa; faucet) from which you contracted the Legionella infection? Did you have underlying illness at the time?
I had Legionnaires Disease in April 2015 when I was 54. My husband and I had sold our home and the new home we purchased wasn’t ready for 2 days. We decided to stay in a very well known historic hotel waiting on our new home. We got moved in and after a few days I started getting sick. At the time I contributed it to being exhausted from moving. It was a Saturday when I started feeling bad and went to a clinic inside one of the pharmacies close to our home. I was told I had a sinus infection and put on antibiotics. When I wasn’t better after 4 days I went to my family phycisian who put me on a different antibiotic. As the days went by I got more and more sick. The thing I mostly remember (which everything from this time period is a blur) is the excruciating headache. After about 7 days I told my husband I couldn’t stand the pain. I’m telling the rest of my story based on my families stories as I don’t remember anything. My husband and daughter took me to the ER. I was given pain meds but it wasn’t helping so finally I got morphine to take the edge off. I had chest X-rays done and confirmed I had pneumonia and was admitted. I was given several different antibiotics through my IV and my lungs just continued to get worse. My family continually reminds me about how sick I was and wasn’t sure I was going to make it. I guess it’s a good thing I don’t remember anything during this time. The doctors then started a very specific antibiotic as well as a anti fungal. I was getting breathing treatments as often as I asked for them since that was something that did provide relief. After a week in the hospital I was allowed to go home but I was still very sick and remained under the care of a pulmonologist for many months. About a week after leaving the hospital I got a call from the communicable disease office of the health department letting me know that I had tested positive for LD and they were trying to pinpoint where it came from. We are assuming (based on timeline) that I got it at the hotel. It had old pipes and evaporative coolers as air conditioners and fountains all over this gorgeous resort. It could have been from any of these situations. But since my LD I have had some weird medical issues. I have had several sinus infections since but about a year after diagnoses I had a reaccurance of basal cell carcinoma show up on my nose. My dermatologist decided to do an aggressive treatment of Levulan instead of another MOHS surgery. During the healing process I ended up with an infection around my nose that turned out to be MRSA. We got it cleared up after quite some time on powerful antibiotics. My family went to Dominican Republic for Christmas last year. About 4 days after being home I developed terrible diarrhea. I went to my doctor and again; more antibiotics. My doctor said that most people’s immune system can fight off the stomach infection like I had unless their immune system is compromised somehow. Now just 5 months later I have just returned from the urgent care after hearing the same words from another doctor. I have just been diagnosed with shingles on my face. Doctor said usually people with weekend immune systems develope shingles. Now I’m wondering if these words will haunt me for the rest of my life? Will I continue to have these freak medical issues that are assumed “from a weakened immune system”. Has anyone else noticed having strange medical issues since having LD? If so does anyone know what I can do to try and boost my system? I also have some other lingering symptoms as other people have reported such as my memory. I was always healthy before LD so this is very frustrating.
I can understand why you must be so frustrated, Jackie. Did the health department determine where you contracted LD? I assume the water at the hotel was not tested for Legionella unless there was another associated case. On this page you’ll see that many other Legionnaires’ survivors suffer long-term symptoms and at least one suspects her immune system was affected even after recovering from the LD at LD survivors , there is quite a bit of information for LD survivors but not in English. I’m sorry we can’t offer helpful advice. I pray you are fully restored.
Jackie, Your complaints are not uncommon. Many LD Survivors complain of a multifaceted, pervasive syndrome which manifests itself in many different ways. The immune system is weakened and conditions to which survivors are susceptible flare up.
Your body and mind just fought the fight of your life and you survived. The fatigue syndrome you are experiencing not only affects your mental and physical self but your immune system as well.
As time passes there will be exponential improvement. Its progress will depend on diet, mental and physical exercise. Get more sleep as your brain is working harder to accomplish the same activities you did before you were sick.
There is a video on the Dutch Website Matt referred to called ‘Legionella Leeft”. “Legionella Lives.” The first few and last five minutes are dedicated to Survivor Stories. Good luck, stay positive. You will improve as more time passes.
Thank you Eric!
Before reading these stories, I thought my experience was relatively awful (Male, 51 years old, decent health) but now I see just how lucky I am. My heart goes out to the prior correspondents; may you have better luck!
My doctor diagnosed pneumonia. I took Augmentin for a few days.
The next thing I remembered was a doctor telling me to cough as he pulled out a breathing tube.
I later learned that I had been in an induced coma for two weeks with LD, sepsis (leading to liver and kidney problems), and encephalopathy. “Circling the drain” was an accurate description.
I was correctly diagnosed upon visiting the ER with severe breathing problems (which I do not recall), and that quick diagnosis may have been the key to my staying alive. The hospital also had a Rotoprone bed which was a important part of the treatment.
Only a couple of months later, I’m feeling fairly normal again except for fatigue issues and a tiny blood clot in one of my lungs. Brain seems to be working fine.
Yes, for such a severe case, it sounds like you’re recovering really well. Keep going for a full recovery! Thanks for sharing your story.
It was hell for me due to the severe difficulty breathing. April 2016 my sister in-law told us about Rich Herbs Foundation where she ordered herbs that effectively treated her arthritis. We ordered their COPD HERBAL TREATMENT after reading alot of positive reviews from other patients, i am happy to report the COPD HERBAL TREATMENT worked very effective for my lungs condition. My quality of life has greatly improved and every one of my symptoms including difficulty breathing, respiratory infections, chronic cough and wheezing has simply stopped. Visit ww w. richherbsfoundation. c om. I will be 52 soon and have never been healthier
Thanks Pamela!
I appreciate this work amazing post for us I like it.
Thank you!
I think I got Legionella bacteria off of my dirty tub but God only knows, I’m so glad it’s not contagious from person to person and I don’t wish this to anybody, started 5 days ago with fever 104 degrees I started taking care of the fever with cold showers but eventually I winded up at the hospital they diagnose Legionnaires disease, I got lucky in my case I may be stronger but, I believe in God prayers, could have been worse I think I got there on time the diagnosis was quick and I got into antibiotics right away I feel better now but at some point I felt my brain was getting cooked the pain and the suffering it’s unbearable I don’t know where this is going after I get heal I definitely quit smoking for once
I’m glad you’re better now. And I agree you’ll be better off not smoking!
My name is Zackery Hall (Zack), I got diagnosed with Legionnaires disease in July 2018. I don’t remember much before I contracted LD, but I am told that I kept telling others that I had the flu and I was walking around my apartment in just a bathrobe because of the sweating, I was at home and I got up from my chair and laid down on the couch, my partner at the time, tried all he could do to keep my fever down. I am told I called a few people and from what I said to them they couldn’t make sense of it and because I have touretts they thought I was having a bad tic, I was sweating so bad that my former partner called my cousin and a few friends because he didn’t know what to do, I had already evacuated my bowels and he cleaned me up the best he could. When people arrived they had him cover the necessary parts and they began to dress me and someone called 911, I wasn’t fully dressed by the time the ambulance arrived, but enough so that my friends and family felt satisfied that I wouldn’t be exposed to the neighborhood. I was brought outside and slumped over, put into the ambulance and taken to the local hospital here in northern Vermont. The hospital thought that I had a virus, and at some point they made the best decision which was to bring me to Dartmouth Hitchcock Medical Center. I had apparently said I didn’t want to go and at that time my cousin was on the phone telling me that I was too sick and that I had to go. Well still from others accounts I was bagged and rushed from northern Vermont to DHMC by ambulance upon arrival they intubated me and ran tests, I had a fever that was undetectable, a heart rate of 180 and my blood pressure was 45/15. They at some point put me in a medically-induced coma, they were asking if I did drugs, where I worked (disabled before Legionella), what I may have ingested or inhaled and finally got the urin and mucus tests back positive for pneumonia and it was Legionnaires disease. They started me on antibiotics as well as kept me hydrated and nourished. After 2 and a half weeks I awoke, not the same person as I had been. I was mentally around 10 or 11 years old and going through my childhood years, it may have been the ketamine, they used to keep me sedated or the fact that I had a high fever, I still don’t know. I don’t remember what led up to this but I do know that I have been fighting ever since. The health department has stopped their investigation and hadn’t come to my home where I believe I contracted LD, and all they could say was that “You are the only case in Vermont and it must have been a fluke that you got Legionnaires.” And “Just be thankful that you are alive and that you have your family.” I am thankful that I have my family, but I am not glad I am alive, because it would have been easier for me to pass than to go through this pain. I see my family cry from time to time, I feel pain that my fibromyalgia never brought before, I constantly get headaches and my breathing gets exacerbated when I walk from one room to another. I have nightmares about the hospital that saved me, I have memories in the hospital that won’t ever leave my mind. I try to go to sleep at night and I hear people screaming in terror and crying for help. I see people walking around that aren’t there. I have anxiety everyday and depression and saddness beyond anything I have ever experienced in my life. I am still healing from this, as of yesterday day the 19th of October 2018 I just brought back the heart monitor so that they can find out why my heart keeps spiking and dropping. I have been out of the hospital since the 6th of August 2018 and I have made it to my birthday exactaly 2mo later on October 6th 2018, I turned 29yrs old. I am constantly looking for answers, but my memory fails me most of the time. It is almost like the person I used to be has died and the person I am now is just learning how to survive. I feel that there should be more done about any illness that you can get by the water that surrounds us. My water treatment plant doesn’t test for Legionella and the health department seem to be a joke. I am so grateful that my sister stumbled onto this site, I find that I cry at the stories but come out more informed that I am not alone. ~Zack~
Thank you for sharing your story, Zack. I’m so sorry you are suffering. I pray you will recover fully, soon. Keep fighting to get better. Don’t give up.
Eric, Zack can u give me info for uour emails?
I want to write to you i need help
UPDATE: I am still dealing with the affects that Legionaries has brought me, I don’t believe it is solely from the LD itself but also the medication that they had me on that is still affecting my mind. I still here voices but not as bad as I am on haloperidol which seems to be helping. I am still learning to live with my new normal. My family keeps telling me to stop talking about it as it should be out of my mind and done with now, what they seem to forget is that when I was in the coma I really didn’t know what was going on and now I know how my life has changed as I know how I felt before LD but not everything I have done up until now and I am grieving the serious illness and trauma that went with it as there are many different kinds of grief not just about losing a loved one who has passed. I am thankful that I am alive and that I have my family, I just wish they would take into consideration how this is still affecting me. I hope as the days go on I will be able to put this to rest, but with it still affecting my everyday life it is too soon to tell. As for now I am getting better and things are coming and going in my memory but I am living life the best way I know how.
-Zack
Zack, I’m sorry to hear you’re still suffering but glad you’re determined to fight for a full recovery. I pray you recover fully, soon. Family doesn’t always get it right but it’s good you have them. They probably love you a lot and are trying to help.
I am 57 and was diagnosed with LD on 6/8/18. Didn’t feel right for a while before. Ended up in CCU in an induced coma, ventilator, cardiac catheter, IVs, etc. Only remember coming to with mitts on my hand strapped to my stretcher. After a month there was transferred to a rehab as I lost all my muscle function. After I went home had visiting care nurse for infected wound on my arm from my vein bursting, PT because I had no strength and social worker because I was and still am mentally not right. Now I still don’t feel right physically and mentally. I don’t know how I got LD and the Ocean County Health Departent in NJ was absolutely no help at all. If there is any type of support group in NJ I would be interested because my family thinks I should be normal and don’t understand why I’m not.
Thanks for sharing your experience, Stacey. I’m so sorry you’re suffering and pray you recover fully and quickly. I don’t know of a support group specifically in NJ but will email a friend who might. Keep fighting to get better. Don’t give up!
Stacy, I am an LD Survivor. I am a member of two support groups. Neither are here in NJ, however I am. My wife, Barbara and I often coach other Survivors through recovery. Barb & I would be happy to talk to you and your family at any time. Best regards, Eric
Eric, do you happen to know of any support groups in Tennessee? Every once in a while, I’ll come to this site to hear new stories and remind myself I’m not alone. I’ve commented twice on this site.
Janis, I know of no support group physically located in TN. However, as I mentioned before my wife, Barbara and I are often called upon to speak with survivors here at home and abroad.
Feel free to send us your contact information and we can begin to chat. Keep in mind that while LDSyndrome is a cruel companion it can be beat. That’s what we’re here for.
Thanks for all you do, Eric!
Thanks, Eric. I’m not sure how to send my contact info to you but I would like very much to speak with you or your wife.
It was Saturday Oct.13 2018 my husband started complaining about having chills. No cough or cold just chills. He put on some very thick sweaters n covered himself with heavy comforter and went to bed. Next morning he was feeling the same and I asked if he should go see a Doctor. As stubborn as he is, refuses to go, thinking it will go away. 2 days later he still had the temperature of 37.5deg. and on the 3rd day he finally decided to go see his GP. Who did check him out and send him home suggesting if temperature does not go down to bring him to ER. During this past couple of days, I noticed he started talking in his sleep, delirium was setting in, could not find his way to the washroom, needed assistance to get in and out of bed. This really scared the hell out of me. Still refusing to get any medical help in the hopes that it’s just fever and will go away. Weakness was obvious as he had no appetite and so was dehydration.
Finally the next day forced him to the nearest ER. Was triaged by the nurse with the temp of 38deg. Right away he was given meds orally and had a chest xray. Xray came out positive for pneumonia. Next was blood test to find out if it was a Viral or Bacterial(culture) pneumonia and in the meantime he was put on antibiotics via IV. Test came out positive for LD.
He just turned 63 and was a heavy smoker( stopped smoking since than) n diabetic as well. He was admitted in the hospital for 5 days and was discharged with continued antibiotics for another week.
He is an employee at a hospital. Local health dept. was informed and he got a call from them to figure out how n where he contracted the LD. Hospital he works at is quite and old building and his job does take him all over the building with old pipes n mould on the walls. Workplace was informed by his GP and the attending hospital but never heard anything back from them . He is still at home sick. He is not as bad as many stories I have read here but he is not yet 100%. He gets aches and pain in his upper body and joints in his both arm n fingers.
He had lost so much weight during this odeal but now he is putting it back on slowly. His skin was all peeling off due to hydration but it’s back to normal now. I still notice little bit of confusion/memory loss on and off but I M sure it will get better in time, hopefully. I know he still has a long way to go till he gets his full strength back. Follow up appt. With his GP is in a week and hoping to hear good news.
It really was a very scarry moment not just for him but the whole family specially when we have never seen him so sick.
Wow! Thanks so much for sharing that. I’m glad he’s better. Would be good to know where he got it, so the contamination could be addressed.
Hi, I had Legionella pneumonia last June. 45 year old male , work out daily .I spent a week at home at first in bed thinking I had an awful flew. It wasn’t until I had no control over my bowel movements and barely able to get out of bed my roommate made sure I got to the ER.
I spent 10 days in ICU. They were seriously thinking of inducing me into a medical coma as I had accute respitory failer and other organs we’re shutting down. They told my mother to call immediate family as it didn’t look good . At all. My lungs as one doctor said are full of puss and are shot . Then the antibiotics kicked in and a pretty fast turn around . It’s been 7 months since I was discharged. After the first month a ran a half marathon and my workouts seemed better . My body felt stronger . However I do suffer from mental confusion sometimes , blurred vision , palpitations in stressful situations and times of exhaustion where I feel like oh no I’m getting sick again . Sometimes I lay in bed all day feeling like when I was in the Hospital Even though my body feels stronger at times .I have to moderate my activity level . If I workout then go to work and have a full day I am completely exhausted the next day . Will this fatigue pass ? It’s a little frustrating as I’ve always been very energetic and active . Even so I’m learning to slow down as to not get sick again .
How long are these side affects from LD? Is it different for each person . Thanks .
Thanks for sharing your story, Anthony. Although I’m not an expert on recovery from Legionnaires’, having read so many survivor stories over the years, it seems the recovery time and difficulty varies significantly. Because you sound like a fighter, I think you will recover fully and soon, and pray you do.
Please give my contact info to Eric B Schoenfeld.
He wrote on July 2, 2019 at 11:01 am
Janis, I know of no support group physically located in TN. However, as I mentioned before my wife, Barbara and I are often called upon to speak with survivors here at home and abroad.
Feel free to send us your contact information and we can begin to chat. Keep in mind that while LDSyndrome is a cruel companion it can be beat. That’s what we’re here for.
However, there is no way to give my contact info to Eric. Alternately, please contact me directly on my e-mail address and give me his contact info.
Have 3monthly b12 injections due to crohns disease.Aug 2nd had b12 and mentioned i was feeling more tired than usual.I am 71 but play golf 3 times a week.my bp was slightly down but said was ok
Aug 14th feeling very tired and hot and cold sweats..eventually saw doctor..bp low high temp.poss blood in urine.sent to hospital for xray and blood test.got home feeling realy ill.1hr later doctor rang to say i was very poorly and ambulance on the way.arived A&E aprox 5pm.immediate intravenous drip.3pm admitted to ward..pretty well delirious cant recall a lot of what went on..just had a terrible thirst and headaches.following day doctor told me i had pneumonia and legionella .I was put on IV Levofloxacin antibiotic for the following 4 days..all the time with a terrible thitst and sweats.eventually I felt improvement and was discharged with 3 days oral antibiotics.At home and feeling ok but fatigue.appetite returned and can now just hope no long term effects..deff one of the worst experiences of my life.and can only forward my thanks to the doctors and nurses who looked after me.
NHS England North West
Thankful you survived and pray you recover fully, soon!
Joseph I too had LD on 30th August, started to feel unwell that afternoon and thought I had flu. Went to bed early with some paracetamol but was shaking as I thought because I was cold. To cut a long story short after 3 days went to see GP who sent me to the Assessment Unit at the hospital where I stayed for a week. After 4 days they diagnosed LD. No-one knows how I got it but possibly when I was on holiday in Devon 10 days before but no other reported cases. Still have trouble sleeping and my joints are really painful. Went back to work last week but finding it really difficult.
On November 3rd of 2018, I went to the local clinic with a fever. I was swabbed for the flu and and it came back negative. I was sent home and told to push fluids and that it was viral and would have to work itself out. On November 4th, I called my primary doctor and said I needed to be seen ASAP, I was still running a fever of 104 and alternating Tylenol and ibuprofen every 4 hours to keep it at bay. They sent in a script for some liquid codeine or something. I had quarantined myself from my family this entire week. On November 5th I went to the E.R. They did a spinal tap on me, gave me morphine for the pains and IV fluids as the fever was still out of control, after which they sent me home saying push fluids. I began to have conversations with people that never happened, although I was convinced that they had. On November 8th, my wife came home from work to find the exterior door to the home wide open. She ventured into the house and found me in the bathtub, somewhat out of my mind. I have no memory of anything after this until I woke up somewhere around November 19th. I was told that upon arrival, lots of x-rays were taken of my lungs and everything was clear, My fever wouldn’t subside and they admitted me. Within 24 hours, my lungs went from clear to being 95% filled with fluid. They placed me into a medically induced coma and began a fierce regiment of medications, ice packs, and at least one shock for my heart. I was given a 5% chance of survival. I was placed on a Roto-Bed for a period of time. One med to combat one thing caused problems elsewhere (I was told all of this after the fact) Fentynol was used to sedate me but it didn’t work so they had to use a stronger more damaging Narcotic. My kidneys were failing from all the medications and my sugar was spiking. They had to give me insulin because I was rapidly declining. I was given a plethora of diagnosis’ ARDS/Sepsis/Encephalitis/Fungal Pneumonia/Bacterial Pneumonia/Viral Pneumonia/Tachycardia/Legionnaires Disease. I was intubated and apparently was wild. They had to restrain me and I chipped 2 teeth in the process. They would make small progress clearing my lungs and then lose the battle the next day. They did succeed in breaking the fever after a very intelligent infectious disease doctor became involved. I owe my life to this man. When they had done all they could do, I was ruled unfit for transport, the doctor then prayed over me and advised my wife of my chances and essentially left it in gods hands. After waking up, I had lost a lot of weight. The meds had wreaked havoc on my stomach and paralyzed some of my intestines. Therefor I wasn’t able to receive any nutrition. My feeding tube had blood and bile coming out of it as my stomach had become a giant ulcer. I went into the hospital around 225 lbs. When I woke up, I was less than 170. My body had fed off my muscle’s for that 2 week period. The doctors were unsure about what damage was done to my brain from the infection and lack of oxygen. They were unsure about a lot of things. But, they kept me alive with god’s help. I had to learn to walk again, I have some difficulty speaking more so in the ability to put a sentence together at times. Sometimes it would appear like a stutter. I, to this day, can’t feel my left thigh, half my left foot, and 4 of my toes. I experience intense muscle cramps on the left side of my body, places I didn’t know muscles were….cramp and there is nothing I can do but wait it out and deal with the pain. I get stabbing electrical type pains throughout my left side and some involuntary muscle movements. My memory is terrible. I can remember prior to getting sick, I can remember yesterday, but 3 weeks ago….nothing. It is like there is a black hole in my brain. My general attitude isn’t great. It has taken its toll on my marriage and we are struggling to maintain at this moment. She wants her husband back, as do I, but the reality is that I may never be back. Being in pain most of the day makes a person less patient, easily upset, and generally unlikeable to most. I struggle every day to try and be pleasant, to try and do my job, to try and be a husband and a father. What used to come naturally, now takes maximum effort. I have had a couple instances where I have fallen or been stuck in the bathtub due to the intense cramps. They have brought tears to my eyes. The mental anguish of everything is almost too much to deal with at times. I’ve said things like “I should have died” or “My family would be better off if I had died” to the point where my wife was genuinely concerned for my safety. I’m currently taking anti-depressants, muscle relaxers, vitamin D, cholesterol meds, blood pressure meds, and nerve blocking agents. My stomach still hasn’t recovered and I’m on a daily Prilosec regiment as well. It has been 10 months since that visit. My doctors used to continue to tell me it will get better in time. Now they are telling me, this may be as good as it gets. Accepting this has been difficult. I will never be able to play a sport with my kid, I can’t sit for long periods of time, rules out road trips or even weekend getaways for the most part. My job has been very accommodating and have made me feel like I can continue despite my inability to remain in my seat more than 15-20 minutes at a time. My children now check on me, asking if i’m ok, when I shriek in pain from a muscle cramp while we are trying to watch a movie. My wife doesn’t think we have a relationship anymore. It’s a very difficult struggle and I wouldn’t wish this on anyone. It is very difficult to remain positive about my future but one day at a time…I guess we will see.
Josh, I’m so sorry you and your family have suffered so much. Was the source of Legionella determined? I pray your body and mind, as well as your marriage and family, will recover fully and quickly, and become even stronger than they were before your battle with Legionnaires’ disease. Keep fighting. Don’t give up.
No idea on the source, However, I was on Psoriasis Medicine that lowered my immune system. That is what they believe started the entire process, my personal opinion is that I had a common cold…then went to the hospital and became a buffet for everything to jump inside me. Thank you for comments
Reading some of the stories and the responses feels good that I am not alone. I was at a hotel, turned on the AC and was hit in the face with a mist that smelled of mop water. 10 Days later I am in bed unable to move a muscle and my speech was slurring. I was awake the whole time in the hospital but its a blur. My fever was 106 for about 4-5 days, the told me I had Legionnaires the 2nd day I was there. I was completely septic, kidneys and other organs were shutting down, unable to move a limb and not able to talk. 3 weeks in the ICU 3 weeks in rehab, 2 more in outpatient rehab. I am back at work discovering all the side effects. Every time I stand it feels like I did an amazing leg work out the day before. Fatigue is relatively new but hits like a ton of bricks and the dizzy spells have to be the most annoying thing I have ever experienced in my life. Since I just got out the hospital in June of 2019 I am reading different blogs about shared experiences and learning what to expect going forward. Thank you all for sharing!
Wow! What a battle. Good job fighting through it. I pray you continue to feel better and are 100% soon. Thank you for sharing
Although recurrence will likely never happen, does anyone fear it will?
I am afraid it will come back! Had LD a little over a year, still having comprehension problems. I also get tired fast and have terrible anxiety and depression.
I’m so sorry to hear you’re afraid of getting LD again and still suffering the effects of it. I pray you are feeling 100% soon.
LIVING WITH THE AFTERMATH OF LD
I am so happy to have found this site. Everything I read echoes my experience! Almost a year ago now I spent over 3 weeks in hospital with this horrible illness. I have no memory but my family and friends sure do and apparently medical professionals were ready to “pull the plug”. What I do have is learning to live with limitations and fatigue. I was told that I was expected to make a “full recovery” but that has not happened.
A long story short, I was sick, hallucinating, lost bowel/bladder function, wasn’t eating and didn’t want to go to hospital because I was not aware of any of it. My mother was dying and that was my priority I guess. She passed away and 3 days later I was intubated… Apparently I had sepsis and my organs were shutting down. I then developed heart failure that looked like I had a heart attack but later it was found that I didn’t. I had to learn to walk and write again (sort of).
Although it is almost a year later I still suffer problems with ambulation, gait, strength, fatigue, appetite, memory, and the list goes on… I no longer can work full-time but gratefully I have a job from home that allows me to work part-time. Life as I knew it is gone but I am happy that I have one.
Stay strong fellow survivors! We’ve got this
Susan, I love your positive outlook, and gratitude that you survived! I’m sure it’s encouraging to others who are still fighting to recover fully from Legionnaires’. Keep up the fight! I pray your get your full strength and capabilities back, and more!
Sad to hear all of the stories here but until reading these I felt lonely with the battle. Yes there are those that have empathy but until one has experienced something like LD they really can’t understand and sometimes doubt you are for real. I was sicker than a dog in January of 2019, thought I had the flu and went to urgent care where they did a quick flu test that came back negative, I was sure the test result was wrong. Urgent care had a physician assistant checking on me and while she said I seemed very sick all she did was give me a shot of antibiotics and a prescription for antibiotics. It was surprising that she did not take a chest X-ray as I had trouble breathing but after mentioning it they did give me a breathing treatment and they she said they were going to release me. Still astonished I told her that I was probably severely dehydrated since I had been running temps of 103 for almost a week and barely holding food down, the nurse said she thought it was a good idea to check. Yes I was severely dehydrated and they hooked me up to an IV and hydrated me. I got home and started on the antibiotics that night and after a few days felt a bit better but not great but had high hopes the completion of the antibiotics would cure me. After completing the antibiotic course I majorly crashed again with my temperature soaring back to102…back to urgent care. This time in urgent care I had the expertise of a doctor, not an assistant where he ordered a chest X-ray and determined I had pneumonia but said it looked unusual. The ER doctor was very friendly and started to tell me all about the break up of his relationship and while I did find it interesting there was a voice at the back of my head telling me I should be in the hospital. I had another breathing treatment, a new course of a different antibiotic and on my way home again. I was exhausted but promised to take care of a friends dog while he was away and again the antibiotics helped me feel slightly better but only slightly. While at my friends I could feel myself getting very weak but couldn’t leave his dog alone so called a friend to come pick me and the dog up, he agreed to take my friends dog till he got back home. That night I started to get very sick again with temperature of 103, extremely confused and wanting to die. I remember asking my friend if it was ok to just give up. My friend had something he had to attend to and would be back in 10 minutes, told me to call the ambulance. It was as if I had become 2 years old again, I could not figure out how to call for an ambulance. I fidgeted with the phone pressing the buttons but clueless and then it dawned on me to try the zero, a lady came on and asked me what I needed and I told her I didn’t know how to call an ambulance, she connected me. The ambulance came and I don’t remember much of it but I do remember my back and butt killing me while laying on that gurney in the ER, they hooked me up to an IV and on to the races I went. They started me on 3 antibiotics after taking a chest X-ray and determining that I had double pneumonia but they seemed a bit stumped on how it looked on the X-ray. Needless to say it was hell in the hospital, I won’t go into the stories of poor care, neglect and assumptions they made on the road to diagnoses but here I am still alive and it’s October 16 2019. It was a long road to recovery and I still feel like I’ll never be back to 100% but I don’t wish this disease on anybody. They never found how I got it but I suspect it was a hot tub or pool as there are many of them in the town I live. I’ve sworn off hot tubs and even reluctant to get back in public pools but there are other ways to get this nightmare. Good luck to anybody that has the misfortune to acquire Legionnaire pneumonia and make sure you have support at the hospital to check on you and make sure they are doing the right things and all they can for you.
Emmett, the details you give help us understand how horrific Legionnaires’ disease is. Thanks very much for sharing your story.
Emmett, this is almost exactly how it was for me. Going to dr, being treated for flu, antibiotics, “has to run its course” diagnosis. After 7 days of 103 fevers that would only break for 30 minutes or so at a time and then come right back I called the ambulance. I don’t remember much except high fever and telling my dr and family something was wrong. 4 of those I don’t remember at all. I was in the hospital for 11days and luckily they caught it right away and I could get on heavy antibiotics. I still have to be on oxygen 24/7 and have to go to respiratory therapy but at least I’m not dead. This absolutely sucks but at least I now know I am not alone. Prayers for you to heal quickly and get back to 100%.
My name is Paul Hayes. I caught Legionella from a paint sprayer at work, paint sprayer had about a hundred foot hose on it that was cleaned out with water and then stored in a big brown metal box in a parking lot in a Walmart. The paint sprayer sat in the Box for days getting hot over a hundred degrees which Legionella bacteria had grew so when I clean the water out I inhaled it. Have clean up paint sprayers a hundred times and never had this problem. For the next week I started getting really sick went to the hospital and woke up 4 Weeks Later. I was in a coma 4 weeks on life support woke up I couldn’t walk I had no memory of what happened. It’s now been over 2 years can I still have no stamina and get fatigued very easily. Hard to keep a job and I can’t live on disability so it’s a struggle everyday. This disease is terrible, trying to collect workman’s comp for it right now. Good luck to anybody that has his disease
Paul, your story is especially helpful because we don’t hear about many cases thought to have been acquired from industrial applications. Your bout with the disease sounds horrible. I’m thankful you survived and pray you recover all that was lost. Thank you for sharing your story.
By I was very ill in 2002 when an outbreak of legionnaires disease erupted in Barrow-in-Furness Cumbria England. It turned out I did have legionnaires disease but was not admitted to hospital due to lack of beds and was treated with tablets that my sister picked up from the doctors surgery for me. When I was well enough I visited my doctor who said it was probably just a bad cold! I insisted on a test for legionnaires disease and after the third test which I had to insist on, was shown my result on my doctor’s computer clearly confirming the positive result.
The upshot of this is that I haven’t felt well ever since and have been diagnosed with Crohns disease, and various other disorders such as restless legs syndrome, carpel tunnel syndrome. My memory is pretty poor and I fine my ability to find the words I want to use will not come to me. To top it all, I have to sleep every afternoon to function till bed time. Wow, I’m tired after writing this. Going to bed!
Wow, 18 years later, still suffering symptoms perhaps brought on by Legionnaires’ disease! Keep fighting for good health, Marsha! Thank you for commenting.
The beginning of June 2019, I was working 60+ hrs a week at my job.. a restaurant. The AC systems had been messing up and several of the cooks coolers also went down. The repairman came. He told me on top of the cooler – was standing water… dripping condensation from the coils. The coils were froze up. He grabbed a sprayer of some sort and began spraying to thaw them out. A mist went everywhere on the cooks line: I started coughing. And moved on with my night. Over the next 2 weeks I started feeling “unwell” fatigue, aches, cough. But I suffer from an autoimmune disease and just assumed it was a flare associated with the disease. I’d like to mention that I had been on Enbrel and then Humira the weeks leading to the event. On June 24th – the fever spiked high, vomiting, chills, sweats, aches, coughing…left me lying in bed. By Wednesday the 26th, I was coughing up blood and felt like I probably had pneumonia. I was going in and out of delirium from the fever. I called an ambulance. I was admitted and diagnosed with LD and sepsis. I remember very little from Friday the 28th. In fact, I remember nothing after that except waking up intubated on July 10th. Apparently on the 29th, not only was I intubated, but I was placed on ECMO. They told my family it was my only chance. I circled the drain. When I finally woke up and was taken off the vent… I couldn’t hold a spoon or anything. I was told I’d be in a rehab hospital for months. I pushed myself to relearn self help skills and to walk.. and came home 2 weeks later with oxygen and home therapy and home health nurse visits. It’s been 5 months. I went back to work after being home a month – with oxygen in tow. I’m not on oxygen all the time but supplementally. I get very tired easily. I can only work 5 hrs a day a couple days a week. I’m still rebuilding muscle mass lost while in coma. I can’t lift anything too heavy. I get short of breath easily. Have nerve damage down my left side. Chest still feels weird. Can’t sleep well. Suffer memory loss and “Spaciness”. Definitely not as on top of things as I used to be. I’m hoping it will continue to get better. After about 3 months post sepsis and LD – I started losing my hair and ended up chopping it off and wearing wigs. It’s growing back. Dr said the hair was basically dead and new stuff needs to replace it. I have dental issues now too. Some days I get so depressed I wish I hadn’t survived. But I know that’s just the depression and I am blessed to have survived when my medical team didn’t think I would. Health dept won’t test my jobs or so the repair company’s equipment. I transferred to a different restaurant. Still kicking. Hope everyone has a speedy recovery.
Wow, Tina! Thanks for sharing your story. Keep fighting for full recovery! I pray you’re feeling good soon.
I am 46 and just got diagnosed with legionellas. I was in the hospital for 2 weeks and am home on oxygen 24/7. This has been a nightmare and so devastating. I have no energy and get tired just walking from the couch to the bathroom. This has truly been life changing. I got sick November 14, 2019 so this is very new to me.
I’m so sorry about your suffering, Carrie, and pray you recover fully and quickly. Where do you think you were exposed to Legionella?
Matt, I got it from hotels that have been remodeled and a hot tub at a hotel. Luckily the CDC was able to find it pretty quickly as I had been staying in hotels for the last 8 weeks for work in different areas but had only been in one hot tub. Each day is a new challenge and a new obstacle to concur. The lack of oxygen in my lungs and being on oxygen really change everything for me. I have a hard time dealing with the depression. Each day I am more aware of my lacking memory or ability to think clearly and fast. It’s just hard. We had storms last night and in addition to prepping everything not to blow away we had to make plans if the power went out how would I keep my oxygen machine running. It’s just a new normal and I am still trying to get it all figured out. After reading all these stories I do know that we are all survivors and that is a one blessing we all share.
Thanks for explaining, Carrie. I’m still believing your best days are ahead!
It began with chills and fever. there was also these insane yet very lame hallucinations. like really in depth hallucinations that kept my mind racing and me unable to sleep. it was very very lame. oddly enough, i did not take these hallucinations as not real till after I was better some 3 weeks later and I understood that I was literally insane from having LD. in the hospital I kept having visions and hallucinations but”always at night”. now that I’m out of hospital, I struggle with anger, memory loss, and fatigue with low blood oxygen. the worst is the anger. idk how to make it better. my doctor says it’s kinda like ptsd and that it will pass.
Thanks so much for sharing your story. Scientific literature has reported confusion associated with Legionnaires’ and a couple of survivors that have posted here also reported hallucinations. I pray you will find the key to overcoming anger, and recover fully, soon.
I’m a 54yro female, in good health, but had been going through an 8 month ordeal of high stress when I contracted LD last summer while on vacation in the Outerbanks NC. Clearly stress killed my immune system. I either contracted it at the house we rented or from the grocery store produce mister. I had mostly lung symptoms. My primary care doc luckily had the idea of testing me for LD after a round of antibiotics that didn’t work, and sure enough it came back positive. She put me on another round of antibiotics and steroids and sent me home. It took me about 2 months to heal with some residual side affects, primarily stomach issues from the antibiotics. The rental company in the Outerbanks, Beach Realty, refused to ask the owner to test the house! I will never rent from them again. Hindsight, I probably should have been in the hospital during my recovery and probably should not have been working!
Thank your primary care doctor for having you tested for Legionella! Few would have. I hope you have recovered fully and are living in less stress. Thanks for sharing your journey.
I was 5 yrs old when I was diagnosed with LD. I remember my mom being very very sick. She couldn’t do anything, but lay there and caugh. The caugh was very scary sounding. I would get home from school and take care of her. One day my grandparents came over and I told them how worried I was. They heard me caughing and said I sounded just as bad. I honestly didn’t even notice it, because I was so concerned with my mom getting better. They took us to the emergency room. I remember getting a banana popsicle (my least favorite of flavors) when we got the news. They told us that my mom had LD and double pneumonia. I balled I was so scared. Then they told me I also had LD and pneumonia but just in one lung not both like my mom. They said that if we didn’t come to the hospital that day we would have died. We were in separate rooms on separate floors. We were not allowed to leave and visitors were restricted. We were hooked up to IV’s and I was in what they called a tent. It was a plastic tarp basically that I could see and hear through, but I was not permitted any contact. It was very scary, and I couldn’t be held or anything by my dad or sisters. My mom was on another floor, and I couldn’t see her. We could call eachother on the phones and she would sneak in my room somehow without getting caught haha! I needed that though. We were told we caught it through our air conditioning unit. I don’t know how only we got it, but I’m glad nobody else had to go through that. I was in there for weeks. Finally my fever broke and I was able to get out of my tent. I could walk around the hospital, but I was very weak. They sent me home soon after, but I remember getting to my grandma’s and throwing up. They took me back and I was admitted again. Finally we were both released. I am now 32 and I still have issues due to LD. I was told any illness that affects the respiratory system can easily turn into pneumonia, I have mucus every single second of every single day. Ranging from just blobs that get caught in my throat to massive occasinally bloody chunks that you can sometimes choke on when they come up. My one lung was permanently damaged, and I am tired alllll the time!!! I look back now and can’t believe that I recovered as quick as I did. I just wanted to share my story so others who are like me don’t feel alone in just never feeling normal. Also to give hope to anyone that has a child diagnosed. We are stronger than we look!
Wow! Thanks so much for sharing your story, Noreen. I don’t recall hearing from anyone describing symptoms as an adult from contracting Legionnaires’ disease as a child. I’m glad you and your mom recovered and pray fully good health for you. It sounds like you’re a fighter! Thanks for helping to give hope to others who come to this page.
I contracted Legionnaire Disease in August 2019 from cleaning a flower bed that I had put mulch on in the spring and it was full of crab grass. I cleaned the bed out on a Saturday and by Monday didn’t feel well. During the week I got more tired and then crawled into bed when I couldn’t get warm. My daughter found me on the floor the following Tuesday. She and my son-in-law called the EMTs and I was taken to the hospital. From Tuesday to Saturday I was on IVs and oxygen and my lungs and kidney function improved enough that I was transferred to a rehab facility for the next two weeks. During that time I went from a wheelchair to a walker to a cane. When I left rehab I had another month of therapy. Right now I’m doing pretty good but found this website while looking for answers as to why I’m so tired and short of breath when I try to do much of anything. Thank you for all of the notes from everyone that has dealt with this. It has helped me understand that it may be a long time before I feel my old normal. By the way, I was 70 last year when I started this journey and even though I don’t feel 100%, I’m thankful that I feel as good as I do. Your messages have helped me understand that this disease is more complicated than most people know about. Thank you for this site. I hope that more people find it because it is so very helpful. God bless.
Thank you for commenting, Nina. I’m glad you’re getting better. Do you live in the US? We haven’t seen many Legionnaires’ cases from soil here.
My aunt contracted legionnaires’ disease two years ago and continues to have GI issues. She is struggling with eating. What types of food are recommended once you recover?
Hi Tiana. I don’t know of recommended foods but will ask someone who might.
Tiana, I contracted LD in 2012. I also had a battle with GI issues. I believe that they were the result of stress and side effects of some of the medications that I was on. On one occasion, 4 months into recovery I was taken to the hospital by ambulance for GI related relief. I cannot say that the are any special foods for LD related GI issues other than a good healthy balanced diet.
If you look to some of my earlier discussions about LD Syndrome recovery you will see that exercise and a healthy balanced diet is right up there with plenty of rest and sleep. So take a careful look at your Aunt’s diet, fitness activities and stress a positive active outlook and you should see improvements soon.
Hi everyone. As a survivor it has been comforting to read your comments. Comforting because people (including doctors) don’t really understand it so hard to find someone to talk to. I got it in November of last year (2020). Had been feeling unwell for a few days. No fever but terrible aches all over and feeling really tired. Major thing for me was a feeling of total confusion. Didn’t know where I was or what time kit was even though I was at nome with my husband. Kept wanting to lie down. He would ask me if I was breathing OK (as I was wheezing but I didn’t know that) and I would say I was fine. Worst thing was this confusion and I only remember bits here and there. Went to doctors who thought I had Corona virus and they sent me by ambulance to the hospital. Can’t remember too much but think they didn’t know what was wrong with me so for 10 hours or so they did tests. After I felt I had enough of this and wanted to go home- I really was very confused. So signed myself out then next morning everything got worse and I was back in hospital for 10 days. Kidney failure, Afib, just falling apart basically and then the diagnosis and the antibiotics for 3 days or so. Again don’t remember too much except I had hallucinations and horrible nightmares. Felt people in the hospital didn’t understand my problems. They seemed more worried about my heart. Sinus rhythm spontaneously came back during transesophageal echocardiogram. They signed me out after 10 days. Slowly things now getting back to normal. Cardiologist said Afib was caused by the disease and has now ruled that out. Can walk more but I get tired easy and my concentration is OK but not as good as before. Luckily I get a lot of support from my husband. The memories are there but all I want to do is pretend it never happened as kit was really terrible and made worse because I felt people didn’t understand me. Nobody seemed interested in my neurological symptoms at all even though I kept pointing them out. So now I don’t talk about it (except for here). Today I did a lung function test. I don’t have the result yet but got the impression the technician wasn’t too happy at my result. I do my best to look forward and try to forget such a horrific experience in my life. For the first time in my life I knew I might die. Strangely I wasn’t scared (maybe because of my faith) but the thing that stands out is the impression that medical people didn’t understand what I was going through. They would worry about one symptom over others and would seem to ignore my mental state which was in a very bad place. I came across this site by chance as I needed to talk. I’m hoping gradually over the next few months I’ll get fully better but I’m not sure. What a horrible disease this is. God bless you who are reading this. Thank you. Hugh
Wow, Hugh, what a battle for your health! I’m glad you’re better and seem to have hope that you will recover fully. I pray you do! Thanks so much for sharing your story. I’m sure it will encourage others who have suffered from Legionnaires’ disease.
You don’t seem to have any testimonies from people who got LD from soil – not surprising since your company deals in water-borne processes. I got LD a couple of months ago from using potting mix without gloves or mask. It started with severe body aches/pains, followed by a cough and a fever, then shortness of breath. I thought it was the flu and so it wasn’t until my fever reached 104 and I couldn’t get it down with paracetemol that I started to get worried. The after-hours doctor listened to my lungs and said they were fine. Two days later I could barely breathe so we called the paramedics to take me to the ER. I had double pneumonia and was the worst case they’d ever seen. They tried a few different antibiotics and nothing worked. They cultured for LD but it was negative the first time. 10 days later they did it again and it was positive. I was intubated for 27 days in ICU, in a drug induced coma for the first week. The first time I “woke up” – ie. became aware of my environment – I didn’t remember anything and didn’t know where I was. It was terrifying and I thought I had been kidnapped. I was on paralysis drugs but willed myself to sit up in an attempt to escape. The doctors and nurses were astounded I could move that much. Eventually they eased the drugs and woke me up properly but I still wasn’t well and they had to intubate me a second time – this time using a tracheostomy. It was the worst experience of my life. I had some very weird memories/dreams over the next few weeks. One nurse I had didn’t know how to suction properly and nearly choked me to death several times during her shift. I remember trying to scream at the doctors to get her away from me – of course, I couldn’t speak and so must have seemed insane with all the gesturing and seeming delirium. It was all very fantasy-like. When they removed the tube and put in a “tee=pee” so I could speak, I cried – it had been so long since I had any control over my bodily functions. The liquid feed they gave me while intubated made me sick and gave me very bad diarrhoea, which added to my issues. Let me say right now that what the doctors call delirium (which they make sound like it’s a fault of my brain) is a natural reaction I had to sedating, amnesiac and paralysing drugs they gave me over the month I was there. I cannot fault the care I was given, but there is little understanding of what ICU patients go through mentally and emotionally. I have been home for several weeks and the after affects include fatigue, wheeziness, feeling like I have a permanent lump in my throat, aching joints, disrupted sleep. I feel lucky to have come out of this alive. I am 62 with no previous chronic illnesses.
Wow, Sharon, what a battle you went through! Thanks for sharing your story; it will help others who have survived Legionnaires disease. Yes, most of the comments on this page are about Legionella infections from water. The only ones I found who reported contracting Legionnaires from soil were Fiona on Jan 21, 2020, Sara on May 9, 2020, and Nina on April 15, 2020. I pray you recover fully, soon!
P.S. Sharon, in what country do you live? Australia? We don’t see many Legionnaires’ cases from soil here in the US.
Hi Matt, Yes I am from Australia (Brisbane) and apparently it’s pretty rare here too to get it from soil. I am feeling so much better now, though. I have returned to read peoples’ stories again because of shoulder pain in both shoulders that persists, and seems like that’s another side effect. I feel extremely lucky to have mostly recovered. Thanks so much to you for publishing all these stories. It is very much appreciated xx
My son, when he was about 38, returned from a vacation in Mexico with a fever and “cold” after a couple of days the fever continued to get worse along with cough and shortness of breath. We brought him to the ER and within hours they could tell he was getting worse.They had started him on 4 different types of antibiotics to cover everything. They intubated him and airlifted him to a hospital with ECMO, which oxygenates blood and then returns it to the body because his lungs were not working at all. For the next 3 weeks he was hospitalized with continuous dialysis and near death several times. He was unable to sit up/walk when his lungs finally were good enough to remove the ventilator. He then went to rehab where he had a seizure and then back to the hospital, seizure was a complication of the legionnaires and severe illness. He spent weeks in rehab and then home rehab after that. Now after 2 years he still has difficulty with memory short term mostly but also some long term. He has chronic fatigue, leg/foot pain. It was horrible for him and the family. We are so lucky to still have him with us !!
Wow, what a horrible fight! Thanks for sharing it, Kathy. Was the resort or health department in Mexico notified about the case? Some have claimed that Legionella concentrations are so low in public water supplies in much of Mexico, perhaps because of water chemistry, that the risk of disease is nil.
I had Legionnaires Disease in 1995, in Indonesia. I didn’t receive any medical treatment and was lucky to survive, and eventually recover. I only learnex it was LD some time later when I was hospitalized for a very difficult multi-antibiotic resistant sinus infection, and due to concerns about my immune system, had a comprehensive battery of immunological lab tests done. The immunologist came in and asked me if I’d ever had LD, I said no, then he asked me if I’d ever been sick “with the following signs and symptoms”. I had to answer yes, because he was describing very accurately the symptoms I’d had in 1995. “You’ve had Legionnaire’s Disease,” he said, “and here are test results that show that.”
When I fell ill with it, I was 35, exceptionally fit, athletic and healthy, and had just completed an extended first-ever kayak exploration of an extremely complex archipelago of limestone karst islands off the coast where China borders Vietnam.
I was living in a traditional “temporary” structure on stilts over a vast landscape of terraced wet rice paddies. It was made of woven bamboo mats and “alang-alang” grass for a roof, fixed to a sturdy framework of strong but flexible bamboo poles. When flu-like symptoms hit me like a ton of bricks one day, I retreated to my bamboo shelter, where I effectively collapsed and would certainly have died, but for the care, feeding, and traditional home remedies provided by the farmer whose rice field I was living over, and who had built my bamboo bungalow himself, by hand.
I didn’t leave that hut way out in the fields, some 20 minutes walk away from the nearest road, for three whole weeks. I couldn’t.
The fever and cough were severe. Ruthless. Frightening. I coughed up blood. I coughed myself unconscious a number of times. I gasped for air, wheezed, struggled, slept and suffered. I spaced out, only semi-conscious a lot of the time. Alone and isolated in the dark at night, far from any other dwellings or people to help me, I fought for breath, exhausted, but afraid if I slept I would die. I tried to stay conscious until dawn when the farmer would arrive (most days), bringing water, food, and checking to see if I was improving, which I eventually was, and did, and after three weeks I was able to walj to the road, slowly, stopping to rest and catch my breath every 50 yards or so.
When I got down to the road, hoping to get to town, a mile or so away, I found it impossible to ride my bicycle, which was still parked where I’d left it almost a month before. I didn’t have the strength or the lung capacity to do it at all.
It took another month or two to recover to more-or-less normal health. During that time I was short of breath, had wheezing fits, and orten suffered from some kind of bronchial spasms, that seemed similar to asthma, although I wouldn’t know, as I don’t have any allergies at all and I’ve never had asthma.
The wheezing fits and spasms would have me seeing stars, gasping, and at risk of fainting straight away. I remember sitting down quickly wherever I was, even in the middle of the road or in the market, and putting my head between my knees to keep from blacking out. Not good.
I went to the local pharmacy and bought an asthma inhaler and cartridges of asthma medicine (bronchodilators, maybe with other active ingredients, too, but I can’t remember. Sideline info note: In Indonesian towns and villages, pharmacies would give you any medications you knew how to ask for, how to spell, and could pay for. And they were all far cheaper than the same meds in the USA. We’re talking about one tenth the US price. Or less. So I bought random asthma meds and an inhaler to self-administer them. This was a godsend. Very, very helpful. A life saver.
Over the weeks as I slowly improved, I gradually used the inhaler less, until I didn’t need it anymore, and was back on my bicycle, at last.
What a lesson this was for me. I learned about my own resilience and ability to survive even nasty illnesses, which are surely none of my own doing, just traits I was lucky to inherit from all my Scottish ancestors — a very tough lot of stubborn survivors, unsinkable, unbeatable, immune to cold, damp, despair and almost any cause of death other than old age.
So there’s my experience of LD. I think I recovered over time, about 90% of my lung capacity, and 90% of my brain cells. Seems to be adequate. I’m still here. Still not out of breath and still not stupid. Not totally stupid, at any rate. I feel fortunate.
Wow! Thanks so much for sharing in such detail! It helps us understand just how horrible Legionnaires’ disease is.
In September 2018, I was a healthy 48 year old women when I used a foul smelling car wash that dispersed no soap and it was too late to exit. 3 days later I had severe flu symptoms was tested and negative. Head felt like it exploded. Coughing fever 103-105. Headed to ER on 5 day. First diagnosed with pneumonia but my condition worsened and lucky for me an experienced doctor thought to test me for legionnaires which was positive. My oxygen dropped and I was intubated and placed in a paralytic coma receiving high does of medicines. Transferred on emergency basis to a specialized lung hospital in Phila MICU. At points I would wake and feel terrorized and certain I was dying. After 14 days The medicines worked and I improved. I reported the car wash to the health department and they did nothing. I still suffer ptsd fatigue, loss of memory but I survived. Would not wish this upon an enemy. It was life changing event. One I will never forget.
My search for a doctor for post legionnaires symptoms is not going well. I can’t seem to find anyone. If you can share the name of a doctor who specializes in this disease please share.
Wow, Kerry, I’m sorry you had to suffer so much and pray you will recover fully, soon. Thank you for sharing your story!
Thank you Matt. It’s taken me this long to even talk about my experience. I appreciate the support this site has given me.
My ld was caught in Jamaica august this year 2022, I started of feeling unwell then I was struggling to walk food had no taste and my bowells was very loose, so my wife called the nurse who in turn contacted a doctor who phoned for an ambulance and I was admitted in hospital straight away, I couldn’t walk or talk breathing was difficult, I wasn’t tested for ld I was on oxygen 24/7 and strong antibiotics, I was in hospital for 15 days, when I was discharged I had to wait in another hotel for a week before we could fly home to England , it was only then when I was admitted to hospital in Birmingham England that I was diagnosed with ld, I’m over most of the illness but walking is still a problem as my legs ache all the time I’m 61, the doctor in Jamaica told my wife that he doesn’t think that I will going home alive, she never told me luckily, I’m not ready to go back to work hopefully I will soon , it’s a nasty illness and I wouldn’t wish it on anybody.
The doctor in Jamaica apparently gave you an effective antibiotic even though they didn’t know it was Legionnaires’. I’m thankful you survived and pray you will have a full recovery soon, with no long term symptoms.
I am a 34 year old female that was diagnosed with LD in September. I was complaining of shortness of breath, coughing, unable to breathe, and random high fevers for five days. I went to urgent care first, in which they noticed my low 02 stats and rapid breathing but wrote it off as panic attacks.
Next day I collapsed from being unable to breathe from coughing. I went straight to the ED and admitted straight to ICU. I had weird unknown bacterial pneumonia that covered all my lungs and my blood was completely acidic. Eventually I was intubated and placed on ECMO to survive. My prognosis was not good.
I managed to get off ECMO and discharged home a month later. I’m still recovering. I have PTSD from my weird coma dreams and near death. I had to re learn to walk, write, live. I have constant issues with skin, hair loss, and Gi. Not to mention my lungs are still meh from legionella.
I do not wish legionella upon anyone.
Wow, Ashely, I’m sorry you have suffered so much. I’m glad you have recovered as much as you have since September and pray you are 100% soon. It’s good the hospital tested you for Legionella, which I assume was done when you were admitted to the ICU.
My husband just died on Jan.5, 2023 of LD in the Bay Area. He had very few symptoms. A low grade fever of 101 but very weak and falling down. By the time he went to the ER he had double pneumonia and was in the ICU for 9 days. On day 4 his kidneys failed completely and required dialysis daily. 7 doctors had no clue what he had. They treated him for pneumonia with a variety of wide spectrum antibiotics which did not even put a dent in the pneumonia. The doctors did a kidney biopsy and he bled to death. I am still traumatized and in shock. Be day he was fine, healthy, working. A week later he was dead. LD is one horrible bacteria. This was not reported anywhere I could find, it’s 2023 and out there.
Florence, I’m so sorry you lost your husband. You mentioned that the doctors did not know what he had. Did they eventually confirm Legionnaires’ disease with a test?
Hello everyone. I decided to throw in my Legionnaires misfortune that I had in August 2019. I was diagnosed with the disease after almost 6 days in the hospital, 4 doctors ( very confused) as I was told since I was in a coma. Still don’t know exactly how I contacted it, but it was either from the vents in my office or on the plane to which I traveled to my home country in Italy. But thankfully with family insistence, I was diagnosed and treated. After 45 days of hospitalization and rehabilitation ( had to relearn how to walk and talk, I was finally released. But almost 4 years later I have run into many physical and medical challenges ( I was a marathon runner for many years prior), it’s a horrible disease that is really not talked or investigated much. Heck I had never heard of it till I had it, but it should be researched way more. I truly appreciate it all the other cases and now do not feel too alone.
Thanks for sharing your story, Lori. I’m sorry you have suffered so much and still are having challenges. I pray you will recover fully, quickly. Keep fighting for it!