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My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 24, 2021 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying or judging. I can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your nighttime snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you take your leave, by the way, I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

Tabithas letter to Santa facebook Post 300x251 - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

(Originally written December 17, 2014)


IAES invites you to spread awareness of Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.



Your generous Donations allow IAES to continue our important work and save lives!


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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 premier organization leading in these vital roles.

guidestar platinum logo 300x300 1 e1605914935941 - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

 

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

Trivia Playing cards 3 FB 500x419 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

AE Warrior Store 300x200 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

why zebra - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT
My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 24, 2020 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying or judging. I can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your nighttime snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you take your leave, by the way, I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

Tabithas letter to Santa facebook Post 300x251 - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

(Originally written December 17, 2014)


IAES invites you to spread awareness of Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.



Your generous Donations allow IAES to continue our important work and save lives!


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 premier organization leading in these vital roles.

guidestar platinum logo 300x300 1 e1605914935941 - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

 

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

Trivia Playing cards 3 FB 500x419 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

AE Warrior Store 300x200 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

why zebra - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT
When You Need Help with Your Memory Loss

When You Need Help with Your Memory Loss

January -8-2020 | Mari Wagner Davis, RN

I have been a nurse since 1985. I was working as a nurse case manager when I was at work in December 2017. A co-worker, who I have worked with for years, noticed I was acting strange- laughing inappropriately, busy but not really doing work.  We shared an office and she took my keys out of my purse because I had talked about going home and that idea scared her.

Memory Loss Mari Warger Davis January 2020 500x419 - When You Need Help with Your Memory LossWhat neither of us knew at the time was that she saved my life. Because I couldn’t find my keys, I went back to the unit I worked on, shortly after that I had a seizure. I was hospitalized and after a few days of testing, I was diagnosed with anti-NMDAR encephalitis. Anti-NMDAR stands for anti-N- methyl-D- asparate receptor encephalitis. It is an autoimmune disease where the body creates antibodies against the NMDA receptors in the brain. The antibodies disrupt normal brain signaling and can cause seizures, memory problems, cognitive issues, speech disorders, neuropsychiatric symptoms as well as other symptoms.

I was treated with steroids, IVIG and plasmapheresis. I had inpatient and day therapy rehabilitation. I also did a computer cognitive therapy program. Recovery can be slow. Many patients with autoimmune encephalitis are left with memory problems, cognitive deficits and have problems in situations that are cognitively demanding. Memory continues to be an issue since my diagnosis with AE.

 

I have a calendar and use my phone to keep track of my schedule but what I have found is that people treat me as I was before, that would be great if I had my normal memory, but I don’t. That is part of the problem with having an invisible disability. If you didn’t know what happened to me, I look and can for the most part act “normal”- whatever that is. But in truth, I have trouble remembering previous conversations.

What was easy for me in the past takes far more of my energy than it used to. I find it is difficult to follow a conversation in a group. There is too much information for me to take in at one time. Sometimes in a conversation with several people, it exhausts me, I lose my place, and end up not trying to carry on and be a part of the conversation- it’s just too much for my brain to process. I just give up. I may experience “flooding” where my brain cannot take in so much information at one time.  People in the conversation may notice I get quiet.  They may think that I disagree with them or don’t like the topic.  In truth, I may have lost track of the conversation and have no idea what the topic is.

Things that were easy for me in the past are difficult for me now. For example, recently my sister sent me a text asking me to bring two side dishes to a party to celebrate my Dad’s birthday, I don’t remember having a conversation about it at all. I looked back at my texts and found a message from her. In the past, this would be something I would remember and follow up on. Now, I have no memory of the subject at all.

Helpful tips memory loss blog 1 8 2020 500x419 - When You Need Help with Your Memory Loss

There are ways for others to help those of us with Autoimmune Encephalitis become more comfortable in these situations. So, for family members and friends of those with AE these tips may be helpful.

1. When you start a conversation about plans previously made, talk about the previous discussion that was held.  Help by cueing the person. For example, you may say “I messaged you before about dinner on Friday the 12th and wanted to make sure you were still available.”  That reassures me that I did have a conversation about it in the past and reminds me of the topic and date.  It also allows me a chance to confirm it.

2.  If you are asking me to do something, refer back to what had previously happened and provide contact information if you have it, for example, “Last year for the block party you scheduled the Police department to come and register bikes, can you do that again this year? if you can, I will send you the contact information, Let me know by Monday the 8th”

3. If we have made plans, contact me several days or up to a week before to confirm, for example, “I have on my calendar that we were going to the movies on Friday the 10th at 7 pm, will that still work for you?”

4. If we are going someplace where there will be people I may have only met once before, take the time to reintroduce me to them. My husband will usually tell me, “you met them before at the game, but this is John and Mary”

5. When my husband leaves for work and I am still asleep, he leaves a note telling me that he left for work. He knows that if I am not aware, I won’t be sure of the day of the week and may look around the house for him and be anxious about where he is.

Letting family and loved ones know that incorporating these types of supports helps us remain social and successful is truly appreciated.  It can keep us from becoming overwhelmed or “shutting down” and allows us to participate fully with more confidence. Trying to stay socially involved is important. Taking a little extra time to do these things will help us to recall previous discussions and allow us to feel more comfortable.

As time goes on, and friends and family learn the types of difficulties their loved one is experiencing, it will be easier to anticipate situations that they may have trouble managing.   Coming up with solutions by troubleshooting these situations is the best support you can provide.

 

Your generous Donations allow IAES to continue our important work and save lives!

seal - When You Need Help with Your Memory Loss

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

Submit Your Story

My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 23, 2019 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying or judging. I can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your nighttime snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you take your leave, by the way, I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

Tabithas letter to Santa facebook Post 300x251 - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

(Originally written December 17, 2014)


IAES invites you to spread awareness of Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.



Your generous Donations allow IAES to continue our important work and save lives!


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 premier organization leading in these vital roles.

seal - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

 

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

why zebra - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT
The “Immune” in Autoimmune Encephalitis: The Role of T and B Cells

The “Immune” in Autoimmune Encephalitis: The Role of T and B Cells

Nov-27-2019 | Carolyn Keating, PennNeuroKnow

The Immune System: An Explainer

When we catch a cold, get an infection, or otherwise become sick, our bodies use a natural defense mechanism called the immune system to fight off what’s attacking us.  The immune system has two ways of responding1.  The first, called innate immunity, involves physical and chemical barriers like the skin and saliva, as well as many different types of cells that “eat” and destroy whatever is causing the trouble.  While this innate response happens very quickly, then the downside is that it’s not very specific, and the immune cells can damage healthy parts of the body while trying to gobble up the foreign invaders.  In order to specifically target particular offenders, the body uses its second way of responding: the adaptive immune system.  This response can take days or weeks to develop but is also able to remember what the foreign invader looked like, so if it attacks again a targeted reaction can occur faster than the first time.  To acquire this immunity against a particular foreign substance, the body uses two types of cells that act in different ways: T cells (which develop in an organ called the thymus, that’s where the “T” comes from) and B cells (which mature in the bone marrow, hence the “B”).

 

These two cell types are able to attack so specifically because each one recognizes a particular structure, called an antigen, on a foreign substance.  For instance, one T cell might recognize a certain part of an influenza virus, while another could recognize a specific part of a bacterium; the same situation also holds true for B cells.  The T and B cells travel around between different lymphoid tissues (organs like the spleen, tonsils, and lymph nodes, the last which are spread throughout the body) until they encounter their particular antigen.  Once activated by their antigen, the T and B cells leave the lymph tissues and work in different ways to fight off the foreign invader (Figure 1).

types of T and B cells PNK - The “Immune” in Autoimmune Encephalitis: The Role of T and B Cells

Types of T and B cells

T cells come in many varieties, but the two major types are cytotoxic and helper.  Cytotoxic T cells (sometimes referred to as CD8+ T cells due to a particular identifier on their surface) travel to the disease site to search for cells that also bear the antigen that activated them, and destroy them.  Helper T cells (sometimes referred to as CD4+ T cells), as the name might suggest, help activate other parts of the immune system.  There are many subtypes of helper T cells that activate different types of responses; for instance, some promote the cytotoxic T cell response, while others activate B cells. Another kind of CD4+ T cell called regulatory cells actually tells the immune system, not to attack2.

 

Unlike T cells, B cells do not destroy their target.  Instead, once they are activated by their antigen and T helper cells, they mature into plasma cells that produce antibodies, proteins that recognize the same antigen as the B cell.  These antibodies essentially enhance the innate immune system and act in several ways, including neutralizing toxins, signaling to other immune cells that a cell should be attacked and destroyed, or activating complement.  Complement is a group of proteins (not cells) that make up yet another arm of the immune system.  These complement proteins can recruit immune cells or directly kill foreign cells themselves1.

 

T and B Cells in Autoimmune Encephalitis

So what happens in autoimmune encephalitis (AE)?  In this and other autoimmune diseases, the body mistakenly recognizes part of itself as a foreign invader and mounts an attack. Scientists believe that AE starts when a tumor or virus causes proteins from neurons to be exposed to the immune system. The proteins get picked up by immune cells outside the brain that go on to activate T and B cells in lymphoid tissue. These activated cells then make their way into the brain where they cause AE3,4.  Which cells are responsible for causing the disease depends on what antigen sets off the immune response.

In cases where the antigen comes from inside a cell, cytotoxic T cells are the culprits.  When proteins from inside neurons like Hu, Yo, or Ma2 are the antigens, that usually indicates that the immune system first encountered the proteins in a cancerous tumor, which can express proteins from all sorts of cell types (this cancer association is why these antibodies and diseases are called “onconeural,” or “paraneoplastic”).  Cytotoxic T cells fighting the tumor can make their way into the brain and kill neurons5.  This cell death is likely part of the reason why patients with these diseases have poor recovery.  Antibodies from B cells that have matured into plasma cells can also be produced in response to the tumor, but they do not contribute to AE symptoms6.

Antibodies do have a strong role in producing AE symptoms when the antigen comes from the outside surface of a neuron, like the NMDA receptor for instance.  These antibodies can still be formed in reaction to a tumor, but this is less common.  Research on NMDAR encephalitis, in particular, has revealed the presence of B cells and antibody-secreting plasma cells in the brain7,8.  Because the antibodies have access to the surface proteins they target, they can bind to them and interfere with their function.  In the case of NMDAR encephalitis, it’s thought that the antibodies cause the receptors, which normally are exposed to the outside of the cell, to be taken back inside so that they can’t function properly.  Once the antibodies are gone the receptors can return to the cell surface, reversing many of the symptoms9.  Unlike diseases in which the antibodies target intracellular proteins, in NMDAR encephalitis there are few to no cytotoxic T cells in the brain or neuronal death5,7,8.  But while there are little to no cytotoxic T cells, there have been reports of helper T cells around blood vessels in the brain, including one type called Th17 that act to enhance the immune response10.

 

In other cases of encephalitis with antibodies again a cell surface protein, such as LGI1, CASPR2, or GABA receptors, the precise immune reaction is less certain and in some ways seems to be a little different from NMDAR encephalitis.  B cells and plasma cells are still found in the brain, and antibodies also play a major role in causing symptoms5,11.  For instance, antibodies against the GABAB receptor block it from functioning, while antibodies against LGI1 can disrupt interactions between proteins and lead to a decrease in AMPA receptors12.  The involvement of T cells is unclear and may vary depending on the disease-causing antibody. For example, cytotoxic and helper T cells have been found in the brain of anti-GABAB receptor patients11, while few T cells were found in anti-VGKC-complex patients5.  In addition, scientists sometimes observe signs of complement, the protein arm of the immune system that can kill cells5,6.  In line with the presence of cytotoxic T cells and complement, neuronal loss is sometimes reported5,13.

 

Overall, the type of immune response the body produces appears to be dependent on the specific antigen. In general, diseases with antibodies that target intracellular proteins like Hu, Yo, or Ma2 involve cytotoxic T cells that kill neurons.  In contrast, diseases with antibodies that target cell surface proteins like NMDAR, LGI1, and GABAR involve B cells in symptom production. In this second category, the role of T cells and complement may vary depending on the particular antigen.

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References

  1. Parkin, J. & Cohen, B. An overview of the immune system. Lancet 357, 1777–1789 (2001).
  2. Corthay, A. How do regulatory T cells work? Scand. J. Immunol. 70, 326–336 (2009).
  3. Venkatesan, A. & Adatia, K. Anti-NMDA-Receptor Encephalitis: From Bench to Clinic. ACS Chem. Neurosci. 8, 2586–2595 (2017).
  4. Dalmau, J. NMDA receptor encephalitis and other antibody-mediated disorders of the synapse: The 2016 Cotzias Lecture. Neurology 87, 2471–2482 (2016).
  5. Bien, C. G. et al. Immunopathology of autoantibody-associated encephalitides: Clues for pathogenesis. Brain 135, 1622–1638 (2012).
  6. Damato, V., Balint, B., Kienzler, A. K. & Irani, S. R. The clinical features, underlying immunology, and treatment of autoantibody-mediated movement disorders. Mov. Disord. 33, 1376–1389 (2018).
  7. Martinez-Hernandez, E. et al. Analysis of complement and plasma cells in the brain of patients with anti-NMDAR encephalitis. Neurology 77, 589–593 (2011).
  8. Tüzün, E. et al. Evidence for antibody-mediated pathogenesis in anti-NMDAR encephalitis associated with ovarian teratoma. Acta Neuropathol. 118, 737–743 (2009).
  9. Dalmau, J. et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol. 7, 1091–1098 (2008).
  10. Zeng, C. et al. Th17 cells were recruited and accumulated in the cerebrospinal fluid and correlated with the poor prognosis of anti-NMDAR encephalitis. Acta Biochim. Biophys. Sin. (Shanghai). 50, 1266–1273 (2018).
  11. Golombeck, K. S. et al. Evidence of a pathogenic role for CD8 + T cells in anti-GABA B receptor limbic encephalitis. Neurol. Neuroimmunol. NeuroInflammation 3, 1–8 (2016).
  12. Dalmau, J. & Graus, F. Antibody-mediated encephalitis. N. Engl. J. Med. 378, 840–851 (2018).
  13. Shin, Y.-W. et al. Treatment strategies for autoimmune encephalitis. Ther. Adv. Neurol. Disord. 11, 1–19 (2018).

 

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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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My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 19, 2018 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying, or judging. Can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your night time snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you make your leave, by the way I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand, since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

(Originally written on: December 17, 2014)


IAES invites you to spread awareness of Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.



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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.

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