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I Thought I had the Flu, by Evening I was in Coma

I Thought I had the Flu, by Evening I was in Coma

By: Elizabeth Lowther | June 12, 2019

Elizabeth Lowther  2 days before found unresponsive and in a coma 300x271 - I Thought I had the Flu, by Evening I was in Coma

Photo taken two days before she was found unresponsive and entered coma

I started having issues when I was 35. I started having trouble learning a new computer system at work (as an RN). I have never had trouble learning new skills-apps on computers.  I also was having issues with tremors in my arms and hands and then started falling almost daily. I truly believed I was going to be fired. I believed even my friends at work were against me. It truly bothered me. I would call and complain to my mom at night.  

One of my dear friends was a neurologist, but she had moved to North Dakota and I asked her who I should see regarding my tremors in my hands and arms and falls and she suggested an M.D. in another state just 45 minutes away. I got an appointment and my parents went with me.  The neurologist told me I had early onset Parkinson’s disease. She didn’t even order a pet scan to determine if I did really have early onset Parkinson’s. I was so confused I didn’t even ask questions I normally would as an RN. 

 

I had married what I believed to be the man of my dreams. We did everything together. We were very happy. We had been married 9 yrs. when I started getting symptoms.  I woke up March 17th, 2015 and told my husband that I felt as if I was getting sick and was calling off work. I called my manager. I told her I felt as if I was getting the flu. I told Matt I was going back to bed.  When he returned home from work at 10 pm that night, I was unresponsive. He called an ambulance. He then called my sister. My sister called my parents and my parents called my brother. When I arrived at emergency department, I was not breathing on my own, so I was then intubated. I was in a coma for 2 weeks. I was sent to a level 1 trauma/educational hospital where I worked as a staff nurse and a case manager. I had M. D’s that took care of me that worked with me when they were residents. I was checked for every disease and virus known to man and negative for everything. My pet scans were all normal when I was in a coma. My spinal fluid was also normal. They contacted a physician at the University of Pennsylvania who asked for my symptoms prior. My Mom and sister stated I was having problems with a new computer system at work, having tremors in hands and arms, falls almost daily and paranoia. He diagnosed me with Autoimmune Encephalitis. He told them to start me on high doses of IV steroids and IVIG. I started to come out of my coma after 2 weeks. 

My family was excited. After I was awake, I had an EEG performed and did not have a seizure they could see. I was sent to Cleveland Clinic and my parents were told I would sleep a lot to heal my brain. I have been told I slept for almost 2 yrs. My parents had to take care of me. After I became sick my husband really didn’t want anything to do with me, I’ve been told. When I came out of it and knew who I was he filed for divorce. And that’s alright. I’ve learned a lot about not only myself but others during this disease. That’s OK. Just made me stronger. I would not be here if it was not for God, my parents and my sister.

Elizabeth Lowther Sickest with AE no memory of this time brother visiting he bought family farm 205x300 - I Thought I had the Flu, by Evening I was in Coma

At my sickest with AE, I have no memory of the time when my brother, who bought the family farm came visiting with a lamb to cheer me up.

I started seeing Dr. Rae Grant at Cleveland Clinic and he is simply amazing! He makes me feel as if I matter and wants me to be able to return to work. He realizes that the disease is under recognized. He also stated that with Autoimmune Encephalitis, it’s common to have a negative spinal fluid since they haven’t discovered all the antibodies yet and he has seen other people have negative pet scans while sick. Both of my parents have autoimmune diseases in their families. My Granny died from Parkinson’s disease. My uncle at the age of 8 had a form of encephalitis but they called it “brain fever”. He had Parkinson’s disease. My uncle died from skin cancer he let go for too long and never let anyone check until it was too late. My grandmother’s mother was born with Huntington Chorea. My grandmother did not have children that got the disease, but all their aunts and uncles and cousins developed it. My Grandfather died from Alzheimer’s disease. Dr. Grant and I seem to think the autoimmune diseases I have in the family are how I developed autoimmune encephalitis.  

I just want to help others with this this disease and let them know that they can go on. They can make it. They can have support from others just like I have. I wouldn’t be here without it. I had to learn to accept help and know there wasn’t anything wrong if I needed to write myself post-it notes all over the house! I learned to accept it. I learned there’s nothing wrong with learning a few new things to help me get by.  

 I just want to help others know there’s nothing wrong with learning how to like the new you. I had to learn how to. It has taken me 4 years and I’m still learning. I’m 40 now and my parents bought me a one-story older house on my brother’s property that is literally a minute a way. I love to get in my car and go visit.  

 

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Why the zebra 2 - I Thought I had the Flu, by Evening I was in Coma

 

Should I Get the Flu Shot if I have Autoimmune Encephalitis?

Should I Get the Flu Shot if I have Autoimmune Encephalitis?

October 5, 2018 | Barbara Vujaklija, RN

‘Tis the season.  No, put away the holiday cards and gift wrap, I’m talking about Flu season.  IAES has received a few inquiries recently about whether or not Autoimmune Encephalitis patients should or can get the flu shot. So,  I thought I would share a few facts about the flu shot and how it relates to AE warriors.

First of all, there are two types of flu vaccination available, the shot and the nasal spray. DO NOT TAKE THE NASAL SPRAY. The difference between the two is that the nasal spray is a weakened live form which we CANNOT have and the shot is NOT live so we CAN take it. The flu shot has gone through a process that kills the virus while leaving particles that provoke an immune response against the flu. ALWAYS check with your doctor or at least let your Primary Care Provider (PCP) know that you plan to take the shot.

“I don’t get the flu shot because it gives me the flu”. Boy I wish I had a dime for every time I heard that one. Yes,  you can feel sick after the flu shot but while it’s normal to feel soreness, redness, tenderness, or even develop a mild fever or body aches during the two days after you get vaccinated, that’s just your immune system responding.  It is NOT the flu illness itself. The shot primes your immune system to recognize the flu should you become exposed to it.  This is why you will have mild flu symptoms while your system gets ready to fight off the real thing should you become exposed. If you do get the full blown virus after a shot,  you were already infected before you got the shot and were going to get sick anyway.

The Centers for disease Control (CDC) has a great paper I highly recommend: Vaccination: Who Should Do It, Who Should Not and Who Should Take Precautions 

Basically everyone over the age of 6 months should get vaccinated unless they have an allergy to any part of the vaccine. For instance an allergy to eggs, as the virus used in the vaccine is grown in eggs, would be a reason NOT to get the flu shot.

 

How we get the vaccine every year is a fascinating journey. Researchers from the World Health Organization (WHO), start after the current season is over and test poultry and pigs in the East (China etal) for the next predominant strains for the coming season. Then a special panel of scientists and doctors decide which strains are most likely to be predominant the next season. Do they always get it right? Nope! But it is more often right than wrong and is the best system we have. The manufacturing process takes the rest of the year which is why they start so early risking mutations along the way.

“Should my family get the shot?” YES the CDC recommends that all household members and frequent visitors get vaccinated to help protect those of us with low immune systems. Except those under 6 months or with a valid reason not to take the vaccination. Ask sick people to stay away and avoid crowded indoor spaces during the season which lasts from fall to winter with peak season November through March, to avoid catching any mutated strain that is not in the vaccination.

Another question I frequently hear is, “If I get the shot too early it will run out before the season is over”.  There is no perfect time to get your flue shot, but when I worked at the County Health Department we advised people to get the shot late September or early October. The antibodies take about 2 weeks to produce a major response so you will be protected by mid October and will generally last for the entire season. Some doctors prefer that you take it at a different time. Check with your PCP if you are unsure. Peak flu season is November to February but can be in your community in September and October. So unless your PCP says otherwise, as soon as possible is best.

You can help protect yourself by practicing good health hygiene. WASH YOUR HANDS OFTEN, try not to touch your mouth and face, stay out of crowded indoor spaces and ask sick people to stay away while they are ill.

If you have further questions, please e-mail me at admin IAES@autoimmune-encephalitis.org


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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

A Little Infection Control Goes A Long Way

A Little Infection Control Goes A Long Way


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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