What to do next?

Wanja

Senior Member
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Hey guys,

So ive been at the hospital for a few days now.
I have serious Neurological Symptoms for 3 Month now (muscle spasms, Derealisation/Depersonalisation, Stop-Motion Vision, Brain rebooting, Sleep paralysis with "doom", complete change of bodyfeeling incl. numbness and tingling, extreme almost hallucinating vision changes) but they dont know where it comes from and put them all in the CFS basket.

They tested for Autoimmuneenzephalitis and 21 Antibodys but we have to wait 2 weeks for the results.
Blood test says i have chronic Vitamin D defiancy (even tho i supplent for 2 years now!) and my Lymphocytes are extremely low.

Thats why he doesnt want to try Cortison therapy as immunsystem is already low.

Before the whole weird crash started i took 5-HTP for about 5 days. The Doctors says it could have thrown of my sensitiv CFS chemical balance somehow, but may stabilise again.

I think my neurotransmitter are completly disbalanced as i had such weird symptoms like: when i had an orgasm it would be cut of before being intense, it was always really dull.

Also in the late evening my Derealisation and Stop Motion vision kinda calmed down and after that 1 hour (that was the primetime i waited and lived for allday) i got so unbelievable insanely tired in a matter of minutes to the point i was getting vertigo and couldnt keep my eyes open.

Something in my brain feelsike it turned off. I have no sense of time at all, i can barely visualize or remember things, i feel like my consciousness is halfway existing. Also when i wake up and trhough the day i feel like something puts a limit to my conciousness level which my brain trys to push against.
Like a cover over my concioussnes and brain functions.
Something is not working anymore.

This is so insane!

What could i check for next while waiting for the autoimmune enzephalits panel? Did anybody experience the same?
 

Wishful

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ME/CFS certainly can cause neurological problems, and I think your symptoms could fit as an extreme case of that.

It's really hard to suggest what might possibly help, since it seems just as likely that anything could make this mysterious malfunction worse. I'm a proponent of cumin (cuminum cyminum). It's only worked for a few people so far, as a PEM blocker/reducer, but it's also fairly low probability of causing problems, and it is cheap and easy to get (you might have it in your kitchen).

There might also be something in your diet that is making the symptoms worse. One of the fatty acids made my ME symptoms worse, and now an amino acid (proline) is making me extra brainfogged. When I want to check whether something in my diet is making me worse, I switch to cornstarch pancakes (essentially pure sugar molecules, but more satisfying to eat than table sugar).
 
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diagnostics-09-00082-g002.jpg


Could be explained by the metabolic trap hypothesis?
If you have L-trp accumulation due to IDO1 blockade and you add 5-HTP it would add up to an already high Trp/5-HTP.
Trp supplement are known to cause problems.
Maybe you can cut your Trp consumption with the okay of your docs.
 

Wanja

Senior Member
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Location
Berlin, Germany
View attachment 43771

Could be explained by the metabolic trap hypothesis?
If you have L-trp accumulation due to IDO1 blockade and you add 5-HTP it would add up to an already high Trp/5-HTP.
Trp supplement are known to cause problems.
Maybe you can cut your Trp consumption with the okay of your docs.
Iam so afraid it will stay like that and openly speaking, i cant live like this. It changed my complete perception and changed me...

Will this ever go away? Will this equal out over time again and go back to normal? Can i do something about it?

I almost never read negative stuff about 5-HTP anywhere... I just wanted to feel a little better after this hard winter and thought this would be help me.
I am so so sad and worried that i did this to myself. I was so mild...
 

rosie26

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Before the whole weird crash started i took 5-HTP for about 5 days.
@Wanja Just in regards to the 5-HTP. I'll never take it again. In the first six months of my very severe ME (20 years ago) I tried one tablet of 5-HTP for severe insomnia and I experienced a very frightening reaction. I can't remember how long it took after taking the tablet but it was night time and I was trying to get to sleep when suddenly the 5-HTP tablet kicked in - all of a sudden I was thrown quite violently to sleep and immediately back out awake again. This happened about 3 repetitions in around what seemed like 15 seconds or so. Horrible experience. And I had only taken 1 tablet.

Hope you feel better soon.
 

Wanja

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@Wanja Just in regards to the 5-HTP. I'll never take it again. In the first six months of my very severe ME (20 years ago) I tried one tablet of 5-HTP for severe insomnia and I experienced a very frightening reaction. I can't remember how long it took after taking the tablet but it was night time and I was trying to get to sleep when suddenly the 5-HTP tablet kicked in - all of a sudden I was thrown quite violently to sleep and immediately back out awake again. This happened about 3 repetitions in around what seemed like 15 seconds or so. Horrible experience. And I had only taken 1 tablet.

Hope you feel better soon.
Exactly this happens to me on a daily basis. Actually everytime i close my eyes. I get seizures, i fall asleep instantly and then a zao goes through my body waking me up. This is going for 2 month now.
 

Wanja

Senior Member
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Location
Berlin, Germany
View attachment 43771

Could be explained by the metabolic trap hypothesis?
If you have L-trp accumulation due to IDO1 blockade and you add 5-HTP it would add up to an already high Trp/5-HTP.
Trp supplement are known to cause problems.
Maybe you can cut your Trp consumption with the okay of your docs.
I got recommended trying BCAAs as they block the uptake from Tryptophan in the Brain... And tryptophan free diet? I just read a case of someone with fibro who got into remission after tryptphan diet... Could worth a try
 
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Yes serotonin syndrome.
Actually it all felt like hardcore serotonin syndrom but for MONTH.
I dont think that could be right?
Or would this be a strange cfs thing?
Persisting serotonin Syndrom?
All of this is just theories.
Don't try anything radical like Trp free diet, it could cause problems too.
Maybe a small dietary modification and see the effect. If your docs are open discuss it with them.
In the case you read about fibro, it's the opposite they tried to increase Trp absorption.
 

Wanja

Senior Member
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Location
Berlin, Germany
All of this is just theories.
Don't try anything radical like Trp free diet, it could cause problems too.
Maybe a small dietary modification and see the effect. If your docs are open discuss it with them.
In the case you read about fibro, it's the opposite they tried to increase Trp absorption.
The problem is i need a solution for this... I cant live like this. My whole perception is broken. I am really desperate and lost. I see everything different, i hear different, my body feels weird and off and i have problems feeling, relaxing at all or having any emotion. I am just a shadow of myself atm.. Its so painful to be in this state. Its like something died in my brain. Srry for crying around...
 
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The problem is i need a solution for this... I cant live like this. My whole perception is broken. I am really desperate and lost. I see everything different, i hear different, my body feels weird and off and i have problems feeling, relaxing at all or having any emotion. I am just a shadow of myself atm.. Its so painful to be in this state. Its like something died in my brain. Srry for crying around...
I think ti's another good reason to get help and not try anything by yourself.
 

Wanja

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Location
Berlin, Germany
I think ti's another good reason to get help and not try anything by yourself.
I did try to get help... I was a t the hospital and have my doc. They dont know what to do and they dont care enough to realy get into it. I dont know if anybody ever experienced what i experience right now but its so unbelievable awkward.

A psychatrist would prescribe SSRIs which would make everything worse maybe, if its cause by the trap theory.

I mean this is somehow related to the cfs, so nobody knows whats going on in my brain.
 

Wishful

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I got recommended trying BCAAs as they block the uptake from Tryptophan in the Brain...
It does work for that. When I was sensitive to quickly-digested carbs (they boost insulin which in turn boosts TRP transport into the brain), taking BCAAs would block that. It's only temporary; I'm not sure how much BCAAs you'd need to take continuously to continuously reduce TRP transport.

And tryptophan free diet?
I tried it (cornstarch and water) for a year or more. It avoided the increase in symptoms I had from TRP in foods, but I still had a baseline of ME symptoms. Also, I didn't notice any signs of TRP deficiency, so it seems to take a very very long time to actually deplete the body's reserves of TRP.
 

Wanja

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Location
Berlin, Germany
It does work for that. When I was sensitive to quickly-digested carbs (they boost insulin which in turn boosts TRP transport into the brain), taking BCAAs would block that. It's only temporary; I'm not sure how much BCAAs you'd need to take continuously to continuously reduce TRP transport.



I tried it (cornstarch and water) for a year or more. It avoided the increase in symptoms I had from TRP in foods, but I still had a baseline of ME symptoms. Also, I didn't notice any signs of TRP deficiency, so it seems to take a very very long time to actually deplete the body's reserves of TRP.
Interesting, i may give it a try
 

Wishful

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Interesting, i may give it a try
For your information, cornstarch pancakes have, at least in my opinion, much better taste and texture when I mix the batter using boiling water rather than cold water. Try it both ways, and see which you prefer. Tapioca starch (also zero TRP) makes something more like solidified slime. Oh, the fun of experimentation. :eek:
 

crypt0cu1t

IG: @crypt0cu1t
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California
Hey guys,

So ive been at the hospital for a few days now.
I have serious Neurological Symptoms for 3 Month now (muscle spasms, Derealisation/Depersonalisation, Stop-Motion Vision, Brain rebooting, Sleep paralysis with "doom", complete change of bodyfeeling incl. numbness and tingling, extreme almost hallucinating vision changes) but they dont know where it comes from and put them all in the CFS basket.

They tested for Autoimmuneenzephalitis and 21 Antibodys but we have to wait 2 weeks for the results.
Blood test says i have chronic Vitamin D defiancy (even tho i supplent for 2 years now!) and my Lymphocytes are extremely low.

Thats why he doesnt want to try Cortison therapy as immunsystem is already low.

Before the whole weird crash started i took 5-HTP for about 5 days. The Doctors says it could have thrown of my sensitiv CFS chemical balance somehow, but may stabilise again.

I think my neurotransmitter are completly disbalanced as i had such weird symptoms like: when i had an orgasm it would be cut of before being intense, it was always really dull.

Also in the late evening my Derealisation and Stop Motion vision kinda calmed down and after that 1 hour (that was the primetime i waited and lived for allday) i got so unbelievable insanely tired in a matter of minutes to the point i was getting vertigo and couldnt keep my eyes open.

Something in my brain feelsike it turned off. I have no sense of time at all, i can barely visualize or remember things, i feel like my consciousness is halfway existing. Also when i wake up and trhough the day i feel like something puts a limit to my conciousness level which my brain trys to push against.
Like a cover over my concioussnes and brain functions.
Something is not working anymore.

This is so insane!

What could i check for next while waiting for the autoimmune enzephalits panel? Did anybody experience the same?
These are pretty much the same symptoms I have. Did they do a spinal tap to check for Pleocytosis or elevated protein?