• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Autoimmune Dementia

Sing

Senior Member
Messages
1,782
Location
New England
https://www.medscape.com/viewarticle/899872

Above is a long seminar in Neurology on what is known about dementia from autoimmune processes and how its features differ from the better known forms of dementia. This information stikes me as relevant for a lot of us with ME/CFS. However, I do not feel sufficiently sharp or well informed scientifically to comment. I pass it on for evaluation here.
 

pibee

Senior Member
Messages
304
I've been reading a bit on this lately, it is very interesting that they blame the same antibodies for POTS, also for dementias.. alpha1 adrenergic and beta 2. Approx 50% of dementia patients are positive for alpha1/beta2...
Although not surprising since dementias are so linked to cardiovascular diseases.
There was one very successful pilot study with immunoadsorption for alpha1 positive dementia patients and they managed to completely stop dementia progression for 18 months after 4 days of IA.


I'm considering this seriously as I've always felt like I have something like youth-dementia version with so many overlapping symptoms except for long term memory problems :woot:

My alpha 1 is now 43 , last year was 35. beta2 also highe than last year.....

upload_2018-10-13_11-6-30.png

upload_2018-10-13_11-7-49.png



Think i am a perfect candidate but not sure if they perform IA private anywhere and 20,000EUR price (I believe) is hard decision for me. If IVIG doesnt help , not much else to try.

IVIG for Alzheimers failed but they used i think only 0.8g/kg



here is the study https://sci-hub.tw/10.1111/1744-9987.12415
 
Last edited:

Cipher

Administrator
Messages
863
I've been reading a bit on this lately, it is very interesting that they blame the same antibodies for POTS, also for dementias.. alpha1 adrenergic and beta 2. Approx 50% of dementia patients are positive for alpha1/beta2...
Although not surprising since dementias are so linked to cardiovascular diseases.
There was one very successful pilot study with immunoadsorption for alpha1 positive dementia patients and they managed to completely stop dementia progression for 18 months after 4 days of IA.


I'm considering this seriously as I've always felt like I have something like youth-dementia version with so many overlapping symptoms except for long term memory problems :D

My alpha 1 is now 43 , last year was 35. beta2 also highe than last year.....

View attachment 29721
View attachment 29722


Think i am a perfect candidate but not sure if they perform IA private anywhere and 20,000EUR price (I believe) is hard decision for me. If IVIG doesnt help , not much else to try.

IVIG for Alzheimers failed but they used i think only 0.8g/kg



here is the study https://sci-hub.tw/10.1111/1744-9987.12415

Very interesting, thanks for sharing! Have you considered helminthic therapy for your autoantibodies?
 

pibee

Senior Member
Messages
304
Cipher , I only heard of it but didnt research, I am kinda scared of any self-treatment after my nightmarish experience with Coimbra protocol for autoimmunity.
I am scared of IVIG too but well...

IA seems least scary and most promising (based on very little reading i did :D )
 

Cipher

Administrator
Messages
863
Cipher , I only heard of it but didnt research, I am kinda scared of any self-treatment after my nightmarish experience with Coimbra protocol for autoimmunity.
I am scared of IVIG too but well...

IA seems least scary and most promising (based on very little reading i did :D )

I have no personal experience with helminthic therapy (yet!), but I've read a lot about it. It's one of the most effective therapies for autoimmune/inflammatory disorders that I've come across, and it's very safe if used correctly. Here's some links if you want to read more about it:

https://www.nytimes.com/2016/06/19/magazine/the-parasite-underground.html
https://me-pedia.org/wiki/Helminthic_therapy
https://helminthictherapywiki.org/
https://helminthictherapywiki.org/wiki/index.php/Helminthic_therapy_personal_stories
https://forums.phoenixrising.me/ind...e-improvements-with-helminthic-therapy.48955/
https://forums.phoenixrising.me/index.php?threads/helminths-me.33729/
http://colonyofme.com/