This is a requested video, which I am happy to do. I spent a lot of time on it, but I ran into several issues filming. Please forgive the black spot on the film. My camera was somehow damaged. Adobe Premiere also gave me a lot of issues with the audio. I will work on fixing it. I knew it would take me days to fix, and I wanted to post the video for the subscriber today. I think the overall explanation is still communicated. Thank you for understanding.
Thank you so very much for doing the research and posting this. I know you won't get a lot of views because of the rarity of this disease. I am surprised that only 41,000 have AE in the U.S. I have been hospitalized twice with seizures.since my diagnosis in 2015. My only treatment now is an ant-seizure medication, which I take 2xday. This prevents my seizures, as well as my fogginess, repetitive movements, tremors, etc. So, I am not cured, and fear further deterioration of my cognitive abilities, although the only thing currently affected is my poor memory (I blame it on my advancing age). The Drs. did talk to me about Chemo, but did a poor job of explaining why that would work. An operation of some kind was discussed, as well as a longer course of steroids. I have learned much more about AE from your video than I have from any neurologist I have talked to. So, again, thank you. I will share this with my AE group on Facebook. I enjoy all of your videos. Your drawings are exceptional in helping us all to understand your explanations.
Thank you! Mom of an AE warrior. Yes, ivig or plasma exchange is usually first line treatment followed by rituximab or cellcept (chemotherapy immune suppressants suppressants) are 2nd line treatment.
@@aprilsatterfield3868 my son who is 3 years old has suffering A/e currently. He is the the hospital for two months now. My son underwent plasma exchange and the doctors gave my son immunoglobulin. I'd like to know how long months does your son stayed in the hospital before he recover?
@@haroldestafia5307 unfortunately my son wasn't hospitalized, he was having seizures, unable to speak, catatonic, loss gross and fine motor skills. It took 2 years to get a proper diagnosis and treatment. So he has deficits 6 years later but much better. It took about 2 years of treatment to get where he is now. But we saw improvement with ivig each time and rituximab helped a lot.
Very well done! Thank you for sharing this. This is an excellent resource for patients of a/e and breaks things down to a level I think most can understand. I’d love to hear your thoughts on long term prognosis particularly anti nmda and mog. Thanks!
My dear friend who has AE sent me your video because there is so much going on with her and I couldn’t understand it all not grasp it. Aside from the audio breakup, this was detailed in such a way that made me understand it better. Thank you so much for doing it as I come to terms with her struggle and understand it better.
Hi one of boy at the age of 15 was diagnosed with bipolar disorder. Now at the age of 22 he died due to this. He was on lithium tablet. Is bipolar disorder linked to this.
Hi! I was diagnosed with Autoimmune Limbic Encephalitis in 2020, after struggling to get a diagnosis for years. I had cancer as a child--ovarian dysgerminoma, a germ cell tumor, at age 10. I'm a walking rare case, right? And I'm so curious about if the cancer (or the treatment) caused this autoimmune response...which actually really started around age 21, I think.
Do the seizures caused by the "less inhibition" form of AE usually correctly present on an EEG as neurological in origin? Or can they appear to be pseudo-seizures?
I am an AE warrior, a strep infection was left untreated and my parents told the naval hospital to do a throat culture and they said I did not need it.
I had strep from Scarlet Fever at 6 weeks of age, for 20 years, at least 3 or 4 times a week until my 20’s. Now I have chronic illnesses and horrible pain. Much more went into my horrific condition, but it started with this, I believe.
Thank you, it's really interesting because it also sort of fits into my mRNA research and I can learn more about the immune system! Also the issues weren't bothering me :)
@@gardenvariety- There's even more information about how the immune system works, which to me anyways, complements this video: th-cam.com/video/et7bGU4hbYE/w-d-xo.html
Many who had the C jabs have autoimmune encephalitis. This year alone I have over 10 patients diagnosed with it including encephalopathy, encephalitis, metabolic encephalitis @@gardenvariety-
How do I find a doctor that can treat this??? My 17 year old daughter has had this for over 3 years now, and has just been placed in the Austin State Mental Hospital. Who can help her? We don't have good insurance - she's on medicare.
Sincere gratitude. To see the diagrams and explanation has clarified my understanding of how VE changed my life. Recovery has been accelerated with regular yoga, meditation, music creativity and long distance running along with freediving and river swimming. It was probably the river swimming that caused it in the first place...but hopefully my white blood cells and immune system has learned it's lesson...the hard way 😂🧘♂️🧜♂️🏊♂️🎸🎶🙏👌. All good stories have happy endings. Next March/April I will be involved in raising awareness and funds for The Encephalitis Society by Freediving through a 26M deep, 30M long, 18M exit point concrete tunnel. 🧜♂️👌
Hell I got it from when I was working at HomeDepot and I fell the bar that holds in the lumber went from the bottom of my back to the middle. I was in a coma for 2months and almost died twice. I had to learn how to read write walk and talk all over again.
I had Robin cephalitis 3 years ago. Was completely paralyzed I was told 2 years is the max for recovery, but after 3 years I still feel my paralysis going away. What is the actual amount of time that your body will continue to recover from this paralysis
Great content, thanks. Extremely valuable at this time for people like myself, just trying to make sense independently. Could you please do a vid on post-splenectomy vaccine implications?
Yes I will look into it. The spleen does house lots of macrophages that break down old red blood cells as well as B and T cells. It could alter a few factors during vaccination.
My baby 2.5 years baby this is came in 2 years we take ivig one dose in hosperl ofter one moth she is good 70% when my baby come narmal stage it takes how many years am soo varid about my girl she is now good but adhd beheviar very haiper active plsss tell me how many years it ricover
@@Nina9647 Mostly taking meds. I can't say which ones as I take a boatload of them. Thanks for asking. I hope you are doing well. What are you doing for treatment?
My son has this. Have u heard good results from rituxan use? He tried 6 months of IVIG with some positive results but then leveled off. He got lyme disease in 2020 plus bartonella infection mycoplasma and mold toxicity.
This is a requested video, which I am happy to do. I spent a lot of time on it, but I ran into several issues filming. Please forgive the black spot on the film. My camera was somehow damaged. Adobe Premiere also gave me a lot of issues with the audio. I will work on fixing it. I knew it would take me days to fix, and I wanted to post the video for the subscriber today. I think the overall explanation is still communicated. Thank you for understanding.
Thank you so very much for doing the research and posting this. I know you won't get a lot of views because of the rarity of this disease. I am surprised that only 41,000 have AE in the U.S. I have been hospitalized twice with seizures.since my diagnosis in 2015. My only treatment now is an ant-seizure medication, which I take 2xday. This prevents my seizures, as well as my fogginess, repetitive movements, tremors, etc. So, I am not cured, and fear further deterioration of my cognitive abilities, although the only thing currently affected is my poor memory (I blame it on my advancing age). The Drs. did talk to me about Chemo, but did a poor job of explaining why that would work. An operation of some kind was discussed, as well as a longer course of steroids. I have learned much more about AE from your video than I have from any neurologist I have talked to. So, again, thank you. I will share this with my AE group on Facebook. I enjoy all of your videos. Your drawings are exceptional in helping us all to understand your explanations.
How did you draw a virus exactly on the black spot? Was that a coincidence?
@@ricknofzinger I’m glad I could be of help in anyway. I hope you can work with your doctors and find a better solution for your health.
@@terjeoseberg990 complete coincidence.
@@friendlyneighborhoodimmuno7192 Thanks.
Thank you so much for this video. I’ve seen many doctors but very few have an understanding of this disease.
Thank you! Mom of an AE warrior. Yes, ivig or plasma exchange is usually first line treatment followed by rituximab or cellcept (chemotherapy immune suppressants suppressants) are 2nd line treatment.
How is your mom doing?
@@Elliemaret It is my son with AE. My son has better quality of life but not fully recovered.
@@aprilsatterfield3868 my son who is 3 years old has suffering A/e currently. He is the the hospital for two months now. My son underwent plasma exchange and the doctors gave my son immunoglobulin. I'd like to know how long months does your son stayed in the hospital before he recover?
Thank you so much for this video doctor. This helped me understand more about my son's illness he has currently suffering.
@@haroldestafia5307 unfortunately my son wasn't hospitalized, he was having seizures, unable to speak, catatonic, loss gross and fine motor skills. It took 2 years to get a proper diagnosis and treatment. So he has deficits 6 years later but much better. It took about 2 years of treatment to get where he is now. But we saw improvement with ivig each time and rituximab helped a lot.
Very well done! Thank you for sharing this. This is an excellent resource for patients of a/e and breaks things down to a level I think most can understand. I’d love to hear your thoughts on long term prognosis particularly anti nmda and mog. Thanks!
When one has had Autoimmune Encephalitis, do they typically need regular immunosuppressive treatments throughout life?
My dear friend who has AE sent me your video because there is so much going on with her and I couldn’t understand it all not grasp it. Aside from the audio breakup, this was detailed in such a way that made me understand it better. Thank you so much for doing it as I come to terms with her struggle and understand it better.
Thank you, and I am sorry your friend has AE. I hope she gets the very best treatment.
Jeff
Can you tell me what kind of treatment she is getting
@@davidmathews9633 I would like to know to. I hope she is doing better by now.....
Hi one of boy at the age of 15 was diagnosed with bipolar disorder.
Now at the age of 22 he died due to this.
He was on lithium tablet.
Is bipolar disorder linked to this.
Once again, I watched it and got a better understanding of AE. Thank you for your tutorial.
Hi! I was diagnosed with Autoimmune Limbic Encephalitis in 2020, after struggling to get a diagnosis for years. I had cancer as a child--ovarian dysgerminoma, a germ cell tumor, at age 10. I'm a walking rare case, right? And I'm so curious about if the cancer (or the treatment) caused this autoimmune response...which actually really started around age 21, I think.
what symptoms did u have? and duration of it all? i think i have this. god bless glad ur ok
Your drawings are fantastic…….kind of the “comic book” version of the science, which is all I could understand anyway, lol.
thanks for the explanation, we recently had a patient with this, turned out she has a teratoma!
Do the seizures caused by the "less inhibition" form of AE usually correctly present on an EEG as neurological in origin? Or can they appear to be pseudo-seizures?
I am an AE warrior, a strep infection was left untreated and my parents told the naval hospital to do a throat culture and they said I did not need it.
I had strep from Scarlet Fever at 6 weeks of age, for 20 years, at least 3 or 4 times a week until my 20’s. Now I have chronic illnesses and horrible pain. Much more went into my horrific condition, but it started with this, I believe.
Well explained and well chosen topic. Thanks.
Thank you, it's really interesting because it also sort of fits into my mRNA research and I can learn more about the immune system! Also the issues weren't bothering me :)
What do you mean it fits into the mRNA research?
@@gardenvariety- There's even more information about how the immune system works, which to me anyways, complements this video: th-cam.com/video/et7bGU4hbYE/w-d-xo.html
I’m glad the issues didn’t bother you!
Does it bother you now spike is in brain and recognised encephalitis is a adverse event from MRNA vaccines.
Many who had the C jabs have autoimmune encephalitis. This year alone I have over 10 patients diagnosed with it including encephalopathy, encephalitis, metabolic encephalitis @@gardenvariety-
Can you recover from this? 😢
How do I find a doctor that can treat this??? My 17 year old daughter has had this for over 3 years now, and has just been placed in the Austin State Mental Hospital. Who can help her? We don't have good insurance - she's on medicare.
Sincere gratitude. To see the diagrams and explanation has clarified my understanding of how VE changed my life. Recovery has been accelerated with regular yoga, meditation, music creativity and long distance running along with freediving and river swimming. It was probably the river swimming that caused it in the first place...but hopefully my white blood cells and immune system has learned it's lesson...the hard way 😂🧘♂️🧜♂️🏊♂️🎸🎶🙏👌. All good stories have happy endings. Next March/April I will be involved in raising awareness and funds for The Encephalitis Society by Freediving through a 26M deep, 30M long, 18M exit point concrete tunnel. 🧜♂️👌
How can you run with the head pain?
@@Tinyteacher1111no pain, no gain
Hell I got it from when I was working at HomeDepot and I fell the bar that holds in the lumber went from the bottom of my back to the middle. I was in a coma for 2months and almost died twice. I had to learn how to read write walk and talk all over again.
awesome video, thank you for making it!
Thank you!
This is happening to me now. I keep telling doctors that I feel tight in the brain and that my brain feels like it’s on fire
I'm the exact same however my mri and recent blood counts were clear!
Did you ever find out what was going on?
Thank you ma'am, you explained it very well.
How do I find help for this. LORD please heal
Also strep pyogenes, PANDAS
Yes good point.
Is this similair to CTE as far as the end result?
What is hashimotos encephalitis and what causes it and how do you treat it?
Love your teaching i will watch again to gain it deeper knowledge.
I had Robin cephalitis 3 years ago. Was completely paralyzed I was told 2 years is the max for recovery, but after 3 years I still feel my paralysis going away. What is the actual amount of time that your body will continue to recover from this paralysis
wow. extremely complicated.
5 star explanation and delivery :D
Never been so undersandable, 💕
Plz reply as soon u can
The jabs
Great content, thanks. Extremely valuable at this time for people like myself, just trying to make sense independently.
Could you please do a vid on post-splenectomy vaccine implications?
Yes I will look into it. The spleen does house lots of macrophages that break down old red blood cells as well as B and T cells. It could alter a few factors during vaccination.
@@friendlyneighborhoodimmuno7192 😍
Can it be temporary after a TBi in someone with chronic Lyme?
How to cure
My baby 2.5 years baby this is came in 2 years we take ivig one dose in hosperl ofter one moth she is good 70% when my baby come narmal stage it takes how many years am soo varid about my girl she is now good but adhd beheviar very haiper active plsss tell me how many years it ricover
Please Can you send me this explantation in text form beacause i am vert intrested in this topisc
Wait your answer
2 year ago my 1 year child suffering from this disses now he is ok but low mental health
My god the sound is terrible in parts which is a shame 😮
Thanks. Mine came with lupus.
Many way for communicate u
Thank you!!!
Thanks for the information. I have this and it is not at all fun.
So sorry to hear that. I hope you are getting the best care possible.
@@friendlyneighborhoodimmuno7192 Thanks. I am getting better. Still some short term memory problems though. Thanks for your kind words.
What have you done for treatment ?
@@Nina9647 Mostly taking meds. I can't say which ones as I take a boatload of them. Thanks for asking. I hope you are doing well. What are you doing for treatment?
@@Nina9647 Taking meds , not driving and seeing a doctor.
Thank you ❤
I have this condition. It is definitely no fun
I hope you get good treatment.
thank you
Thank you ❤️
My son has this. Have u heard good results from rituxan use? He tried 6 months of IVIG with some positive results but then leveled off. He got lyme disease in 2020 plus bartonella infection mycoplasma and mold toxicity.