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Severe Relapse

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
I'm currently going through a severe relapse of Autoimmune Encephalitis at the moment and I don't know where else to turn. Im trying as hard as I can to hide my illness from friends and family but I'm continuously becoming more and more withdrawn and Im regressing to the bedridden stage again due to my symptoms.

Derealization, dizziness, confusion, altered consciousness, severe mental fatigue, pressure headaches.. it's all getting so bad and I really don't know what to do. If I become bedridden, I don't know that I'll have the strength & willpower to deal with it again like before.. Im at my limit here

I guess I'm looking for comfort or someone to say something positive and make me feel better..
 

bensmith

Senior Member
Messages
1,547
I just started having similar issues, after my covid reinfection. I couldnt physically talk todau it was scary. Im really sorry it reaaaaally sucks. Its so weird having your brain get bad like that.

Is there an obv sign to this disease?

I know you can get through it again. Im praying for you brother, from another brain person to another.

Maybe you can access treatment faster now. Could you get ivg maybe?
 
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crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
I just started having similar issues, after my covid reinfection. I couldnt physically talk todau it was scary. Im really sorry it reaaaaally sucks. Its so weird having your brain get bad like that.

Is there an obv sign to this disease?

I know you can get through it again. Im praying for you brother, from another brain person to another.

Maybe you can access treatment faster now. Could you get ivg maybe?
I got IVIG once already but had serious side effects (though it did cure me for a couple months after)

I'm sorry you're going through this too, I wouldn't wish it on my worst enemy..

Have you tested for Encephalitis antibodies?
 

bensmith

Senior Member
Messages
1,547
Last time mine cleared up after 6 weeks on its own. This time worse though for sure, added psychiatric which sucks! Like weird concisouness issues. Esp with hppd now active. Shouldnt you be able to fast track treatment now?

I havent had any medical help, bur on first infection if covid i had a lot of the symptoms listed. I did try steroids one time but made me
Way worse!

I went to the er several times with messed up gait etc and they just didnt help me. They said go to neuro but im still waiting. It cleared up after 6 weeks but i just got reinfected with covid and it looks worse this time. Thinking er maybe but what’s the point. Unless you are dyinh they dont help (me anyway)

What cleared up it first time or is this one of many time fiornyou?

Yes it is very horrible i am sorru for you too friend. Last time i didnt have severe cfs/me too. I am very concerned.

Having health issues is such bs, a damn weed pen i am very sorry. Eating peanut butter seemed to set me off(although still happening i think.)

Is it fairlu easy to get diagnosed? If you just look for antibodies? Any advice there? I have a neuro in a month or so, did youbever go to er? Is there a point?

Can you give me a fast rundown of last time? Do you have pem with this as well? Mine seems mostly bad in the morning when i sleep, and dream especially.
 
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YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
I guess I'm looking for comfort or someone to say something positive and make me feel better..
One of the more horrifying expressions of this weasely little misery of an illness is its ability to keep regrouping every time we beat it back, and re-attacking us in a slightly different suit with a new assault on the battlements. I'm wondering if it isn't the same with your autoimmune encephalitis.
I don't know that I'll have the strength & willpower to deal with it again like before.
You absolutely will, if only because that's really your only option right now.

I know how hard it is to deal with well-meaning but possibly compassion-exhausted friends and family, who really dont understand what you're dealing with or going thru, but the constant exhaustion caused by trying to dissimilate with them regarding your condition can't be helpful. Maybe just let them know that you're having a not unusual little relapse and arent firing on all eight cylinders right now, so may not be as responsive to them as you'd like to be ....
Im at my limit here
I'm not sure how this translates to your current conition, but a few of the things that helped me were bumping up magnesium considerably. I used mag glycinate, and in an odd dosage form that I stumbled on after trying every other type of dosing with the mag: 50 mgs of mag gly every 45 to 60 minutes or so, but that's when my symptoms of anxiety, depression, despair, depersonalization, were really severe.

Another thing that helped me enormously in terms of dealing with my immune system and other failings was pine bark extract. Here are a few links to some info so you can determine if it might help you, and there's a lot more on google if this looks interesting to you:

Pine Bark Extract: A Naturally Potent Antioxidant
https://monq.com/eo/nootropics/pine-bark-extract-naturally-potent-antioxidant/

Pine Bark Extracts: Nutraceutical, Pharmacological and Toxicological Evaluation
https://www.researchgate.net/public..._Pharmacological_and_Toxicological_Evaluation

Pharmaceutical and nutraceutical effects of Pinus pinaster bark extract
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3203267/

I know that it's probably hard to believe that anything short of giant prescription med guns can actually be helpful to you right now, but I found out that the side effects of those more than wiped out the benefits.

It WILL get better. Dont give up, don't give in, don't despair, and I say that knowing how hard any one of the three is, let alone all of them. But help can come from the most unexpected places, and in the most unexpected ways .... hang in :thumbsup::thumbsup: :hug:!!!!
 

lenora

Senior Member
Messages
4,913
Hi @crypt0cu1t, as we "discussed" I also have Autoimmune Encephephalitis, but mine presented in a different way than yours. However, something you mention is something I've been having and just figure they'd go away on their own...the pressured headaches. As I told you, I believe that it depends upon which part of the brain is affected. You sound very much like the young lady who wrote the book, BRAIN ON FIRE.

I understand that you can't read it yourself, but perhaps your girlfriend could read it and underline important symptoms for you. Also, in the book is the hospital and the name of the doctor who recognized what she had and helped her on her road to recovery. I can't tell you how sorry I am that you're having to fight this once again.
Personally speaking, I'd be inclined to get in touch with the young woman and find out the meds she was put on at the time, and I do know her recovery period was extended...probably like you're describing. Or, if you can and want to, perhaps you could have an appointment with the doctor who diagnosed her. She was so, so close to being sent to a mental institution, one meeting saved her and and her life. I'd make use of that knowledge as much as possible. If I knew the meds, I'd tell you, but I don't have that and, to the best of my recall, don't think they were mentioned in the book. Still, I'm sure she would speak to you. Have you looked online for an Autoimmune Encephalitis group? I haven't, but I'm certainly going to do so now.

In my case, I was told I was drinking too much water and not taking in enough salt?!! OK, perhaps that's true, but I do know that's not the beginning and end of this story, and I like to find out what's at the bottom of a problem. I promise to try to find out for you, at least online, and do hope you have a good neurologist. That will be your best chance, although I'll tell you that I was seen by a multitude of specialists in the hospital and not one could figure anything out. A short synopsis of the young woman's book may help...I don't know, but I'd try.

Unfortunately, we're at the forefront of a new illness that not much is known about. I'm on strong doses of keppra, an anti-convulsant, taken two at a time, once/day. I also take Electrolyte Salts (don't overdo it) cut back on my fluids to 32 ozs. as instructed and eat a banana each day for potassium. I'm still not back to where I was before this all happened, but I consider myself lucky that my own neurologist was able to figure out the types of seizures (which left me unconscious for 2 days over 2 different times). He has his own troubles, and I'm touched that he took the time to follow my case, rather lead it. However, I should tell you that I've been seeing him for 35 yrs. Thus he does understand me and my different problems; not many doctors can do that.

OK, I'm going to go right this very minute and see if I can find an association online that may be of some help to you. In the meantime, don't hide this from your family or friends, you can't help it, not much is known about it, and you need their support....from a distance, at least until the immunization is a reality for most of us. And that's another question: Where does this leave us? Should we or should we not be immunized. I'll try to find some answers and will be in contact. Be brave, and think of the young woman who wrote a book about a new illness. You have a wonderful girlfriend by the look of your photo. Yours, Lenora.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@crypt0cu1t , @lenora - here's the doctor who saved Susannah Calahan's life in Brain on Fire: Souhel Najjar, MD | Northwell Health - I just read the book and saw the movie Netflix, both are very good. He used steroids and IVIG with her, and also some anti-psychotics (short-term) because she did have psychotic symptoms. This was some years ago so I'm sure he's refined his treatment some.

The website says he takes tele-health visits.

ETA: Northwell Health, where he practices, also takes lots of insurance, including Medicare (!)
 

bensmith

Senior Member
Messages
1,547
what is the key defining feature here? Is there one? @lenora @crypt0cu1t
@Jammy88



i have had many of these issues before developing cfs, right before. When i was post covid. It went away then has come back with reinfection. I assume all have cfs too? Was cfs helped when this treated. Or are these indiependent. I guess cci is also its own thing?

is pem involved for yall? I struggle to control.
 
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YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@crypt0cu1t , @bensmith , @Jammy88
Here are a few AE forum links, posted in the order of their apparent ability to help, but that's based on a quick overview, so if you can, give them all a quick look on your own to see which ones resonate for you...


If I'm just repeating stuff you've already looked into, apologies ....

Smart Patients
Autoimmune Encephalitis Support Group

https://www.smartpatients.com/forums/autoimmune-encephalitis



Encephalitis Global
Encephalitis support group and discussion community

https://www.inspire.com/groups/encephalitis-global/



1607919684827.png

AE Alliance Blog
https://aealliance.org/blog/



PatientsLikeMe
Autoimmune encephalitis

https://www.patientslikeme.com/conditions/autoimmune-encephalitis
Mostly info re AE, not sure that there’s a forum available



IAES/ International Autoimmune Encephalitis Society
https://autoimmune-encephalitis.org/
 
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crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
what is the key defining feature here? Is there one? @lenora @crypt0cu1t
@Jammy88



i have had many of these issues before developing cfs, right before. When i was post covid. It went away then has come back with reinfection. I assume all have cfs too? Was cfs helped when this treated. Or are these indiependent. I guess cci is also its own thing?

is pem involved for yall? I struggle to control.
I actually don't think I've ever had CFS. Mine seemed to be autoimmune all along. As for CCI, I do suspect I may have some structural issues and so does my doctor but I'm not sure.

As for a defining feature, do you mean evidence that helps you get diagnosed with AE? If so, you can look into getting tested for autoimmune Encephalitis antibodies, you can get an MRI or you could get an FDG PET scan to detect inflammation that isn't visible by MRI.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
@crypt0cu1t , @bensmith , @Jammy88
Here are a few AE forum links, posted in the order of their apparent ability to help, but that's based on a quick overview, so if you can, give them all a quick look on your own to see which ones resonate for you...


If I'm just repeating stuff you've already looked into, apologies ....

Smart Patients
Autoimmune Encephalitis Support Group

https://www.smartpatients.com/forums/autoimmune-encephalitis



Encephalitis Global
Encephalitis support group and discussion community

https://www.inspire.com/groups/encephalitis-global/



View attachment 40887
AE Alliance Blog
https://aealliance.org/blog/



PatientsLikeMe
Autoimmune encephalitis

https://www.patientslikeme.com/conditions/autoimmune-encephalitis
Mostly info re AE, not sure that there’s a forum available



IAES/ International Autoimmune Encephalitis Society
https://autoimmune-encephalitis.org/
These are all great resources that have really helped me! I appreciate you digging and helping me out so much.
I'll check out some of them when I'm not so foggy and more able :)
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
@crypt0cu1t , @lenora - here's the doctor who saved Susannah Calahan's life in Brain on Fire: Souhel Najjar, MD | Northwell Health - I just read the book and saw the movie Netflix, both are very good. He used steroids and IVIG with her, and also some anti-psychotics (short-term) because she did have psychotic symptoms. This was some years ago so I'm sure he's refined his treatment some.

The website says he takes tele-health visits.

ETA: Northwell Health, where he practices, also takes lots of insurance, including Medicare (!)
Hey, I actually have an appointment with one of Dr Najjars colleagues soon!
 

LINE

Senior Member
Messages
832
Location
USA
One of the more horrifying expressions of this weasely little misery of an illness is its ability to keep regrouping every time we beat it back, and re-attacking us in a slightly different suit with a new assault on the battlements. I'm wondering if it isn't the same with your autoimmune encephalitis.

/QUOTE]

Very good point. As you said, the process morphs quite frequently which forces me to morph and rethink my attacks. I review my past treatments and look for new ways to approach. Of course it is a pain but it works out., I pray for courage as well as wisdom and knowledge.
 

lenora

Senior Member
Messages
4,913
Hello @crypt0cu1t ....Good for @Mary , I did find the exact same information for you, but I also found the names of doctors closer to where you live. I sent the link about how to find them to you and do hope you received it. I'm glad that you have an appointment with one of his associates. Dr. Najjar seems like a man who goes above and beyond what is asked of him. I'm impressed that doctors who handle it are available. Good for you!

Six years is a very short time for a disease to have been recognized and it seems that finding out the cause and how to treat it has been fabulous. Now all we need is how to prevent a relapse...that would help immensely, especially for young people like you. I have probably had this before, as I ended up with psychiatric problems caused by too high a dose of anti-seizure medications. These early drugs were used in extremely high dosages, and caused many problems. It was used for pain control, and is an excellent drug still used today but in smaller dosages. Anyway, I survived it, my marriage survived it and my daughters are now grown women older than you are. All are very understanding and kind towards me.

You WILL pull out of this again. You recognized the symptoms and have an appointment with someone who understands the illness, so you're ahead of the game. Once again, it seems like a virus is at the root of the problem, or so I've read. How is your sleep? Mine is almost non-existent and really got worse after my hospitalizations in January and April. As you can tell from the time, I get very little rest and no sleep to speak of. Then I'll suddenly collapse with exhaustion. Good luck and I'd be happy to help in any way possible. You do have support....and that's so important. When is your appt.? Yours, Lenora.
 
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lenora

Senior Member
Messages
4,913
what is the key defining feature here? Is there one? @lenora @crypt0cu1t
@Jammy88



i have had many of these issues before developing cfs, right before. When i was post covid. It went away then has come back with reinfection. I assume all have cfs too? Was cfs helped when this treated. Or are these indiependent. I guess cci is also its own thing?

is pem involved for yall? I struggle to control.


Ben, this affects people in different ways. From the sound of the things you describe, I find it hard to believe that you are affected. If you think you are, though, there are doctors who can treat it...generally a neurologist. Have you seen one...at his/her office. Find out first if they're familiar with Autoimmune Encephalitis and the treatments that are necessary for it. I have ME, so I'm always exhausted and I'm trying to get my mojo back (isn't that what they say?). I'm forever working on it, doing even gentle walking around the house...anything to keep moving.

don't make the mistake of thinking that everything you read here is symptomatic of ME itself. We all have different problems and different responses to them. Feel better. Yours, Lenora.
 
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