Metabolic Trap//Who got worse on l-tryptophan?

[lenora]

Yes, I was wondering about Serotonin Syndrome myself. Do you have a neurologist? Quite frankly, that's the only person I would trust with what you're undergoing....and tell them it's an emergency situation. Damage can be done to vital organs if something goes on too long.

Both trytophan and melatonin have proven to be troublesome for me in the past. Not even high doses, but I totally avoid them. I hope you'll soon find an answers. I wouldn't keep doing this on my own. Yours, Lenora.

 

[Irat]

is there a list of substances that act on NMDA?
What happened to you? why are you severe now?

No list,just googel everything before trying stuff and only try a tiny dose .....there are also many natural substances that affect the nervous system. Examples are: Valerian may cause vivid dreams because it contains essential oil and compounds called iridoid glycosides. These compounds stimulate opioid receptors and serotonin production in your brain, L-Theanine….This is another amino acid found in green tea and in small quantities in black tea. It acts on GABA as well as serotonin and dopamine which are neurotransmitters altered adversely .................as I said above I don t know what happened to you,I only share my experience and my believe in kindling.Also I have never seen anyone finding a quick fix or a supplement that helps to reverse the change in the brain done .(apart you would turn to an benzo or ability or anything )but all this has other consequences.i would give it some more time to calm down.if your lucky around the 6 months mark you could turn the corner......by the way I m German too,so if you want you also can message me.good luck and I m sure you will get better ...........myself I m injured by an adverse reaction to an Antibiotic,and also have MCS and MCAS on top of ME and many neurological symptoms.

 

[Wanja]

Yes, I was wondering about Serotonin Syndrome myself. Do you have a neurologist? Quite frankly, that's the only person I would trust with what you're undergoing....and tell them it's an emergency situation. Damage can be done to vital organs if something goes on too long.

Both trytophan and melatonin have proven to be troublesome for me in the past. Not even high doses, but I totally avoid them. I hope you'll soon find an answers. I wouldn't keep doing this on my own. Yours, Lenora.

Ive been to the neurologic clinic for 4 days. They dont know whats going on. Markers for Autoimmune enzephalitis are still being checked

 

[lenora]

I have autoimmune encephalitis and epilepsy. I'll be on keppra for the rest of my life b/c of the type (2) that I have. Both can cause brain damage, so be aware of that.

I was fortunate enough (?) to have had a mild heart attack and actually went on to have two separate seizures caused by epilepsy right in front of the doctors. No, it wasn't caused by the heart problems.

The autoimmune encephalitis diagnosis was made during another hospital stay. I can't say that I've recovered fully (mind function) but enough that I'm back to my books and other things important to me. My memory isn't as sharp as it once was. I had the Mayo test done twice and apparently there is another one...I don't know the name of it, that can also give results of AE. Visual changes were the first thing noticed by me, and they went on for mos. prior to the loss of my l. leg (which is now fine) and a few other minor things. Keep working on the neurological end of things and don't be surprised if a psychiatrist becomes involved.

This is to be expected in cases of AE because of damage caused to different sections of the brain. Best wishes. Yours, Lenora.

 

[Wanja]

No list,just googel everything before trying stuff and only try a tiny dose .....there are also many natural substances that affect the nervous system. Examples are: Valerian may cause vivid dreams because it contains essential oil and compounds called iridoid glycosides. These compounds stimulate opioid receptors and serotonin production in your brain, L-Theanine….This is another amino acid found in green tea and in small quantities in black tea. It acts on GABA as well as serotonin and dopamine which are neurotransmitters altered adversely .................as I said above I don t know what happened to you,I only share my experience and my believe in kindling.Also I have never seen anyone finding a quick fix or a supplement that helps to reverse the change in the brain done .(apart you would turn to an benzo or ability or anything )but all this has other consequences.i would give it some more time to calm down.if your lucky around the 6 months mark you could turn the corner......by the way I m German too,so if you want you also can message me.good luck and I m sure you will get better ...........myself I m injured by an adverse reaction to an Antibiotic,and also have MCS and MCAS on top of ME and many neurological symptoms.

My doc just prescribed me low dose naltrexone.... Should i try it as a quick fix try?

 

[Wanja]

I have autoimmune encephalitis and epilepsy. I'll be on keppra for the rest of my life b/c of the type (2) that I have. Both can cause brain damage, so be aware of that.

I was fortunate enough (?) to have had a mild heart attack and actually went on to have two separate seizures caused by epilepsy right in front of the doctors. No, it wasn't caused by the heart problems.

The autoimmune encephalitis diagnosis was made during another hospital stay. I can't say that I've recovered fully (mind function) but enough that I'm back to my books and other things important to me. My memory isn't as sharp as it once was. I had the Mayo test done twice and apparently there is another one...I don't know the name of it, that can also give results of AE. Visual changes were the first thing noticed by me, and they went on for mos. prior to the loss of my l. leg (which is now fine) and a few other minor things. Keep working on the neurological end of things and don't be surprised if a psychiatrist becomes involved.

This is to be expected in cases of AE because of damage caused to different sections of the brain. Best wishes. Yours, Lenora.

Is the damage measurable in any kind of way? And is it reversabal?
What did they do to treat yours?
Are there any AE panels you can recommend?
In the clinic here they tested for 21 antibodytypes

 

[lenora]

Hello @Wanja....At my age of 74 yrs. one would expect some memory loss....and the doctors aren't too worried about it. Fortunately I had a great one before these troubles.

Personally, I believe that some of it is reversible, and I work on that constantly. I find that words are coming to me much faster, although there are times when I really have to think about them. Reading (my love next to my family) was harder, but I was determined to get it back again. I read many books and then began chapters again, b/c I couldn't remember the characters names, etc. Every once in awhile I have to take a break from the type I really like, to give my brain a rest (I then read something less strenuous).

I don't think you should spend time worrying about this at the moment....your body and your brain needs to settle down again. I followed my own instincts and for me they proved to be right. So little is known about AE today, at least yet, so it's just one more unknown. Take care of yourself. Yours, Lenora.

 

[Irat]

My doc just prescribed me low dose naltrexone.... Should i try it as a quick fix try?

I would never ever give advice to someone what to do.the thing is it can help or it could finish you off,i have seen both with LDN......for myself no way.I m too traumatized by what have supplements done to me.I mean can you afford getting any worse ?

 

[Wanja]

I would never ever give advice to someone what to do.the thing is it can help or it could finish you off,i have seen both with LDN......for myself no way.I m too traumatized by what have supplements done to me.I mean can you afford getting any worse ?

No i cant. At all. But i have so much hope from LDN... I could cry i dont know what to do anymore. I wanna help myself get better cause this state is just horrible... Did you really see people get finished off by ldn??

 

[Irat]

No i cant. At all. But i have so much hope from LDN... I could cry i dont know what to do anymore. I wanna help myself get better cause this state is just horrible... Did you really see people get finished off by ldn??

I would wait till the 6 months mark......yes I did see ppl go into a long term setback from it. BUT it's with every kind of treatment.some find help,some get severely worse .i learnt there is no point comparing to others,because we all have different pathsways activated in the brain.its horrible I know ,so I m sorry I can t tell you what's the right choice.its trial and error.if you try it mabey start with1/10 of the recommended dose.

 

[Wishful]

Did you really see people get finished off by ldn??

What's important is probabilities, not just remote possibilities. While it's possible that a treatment that is considered very safe for most people could possibly have a negative effect on a particular individual, the chance of a beneficial or at least neutral response may be far, far higher. The chance for a worsening of your condition might be higher from doing nothing than from trying LDN or other 'generally safe' treatments. Oh, also the probability of a long-term negative effect is probably a lot lower than the chance of a negative effect that goes away after some hours. I've tried lots of things that made my ME symptoms worse, but none lasted more than a day or two after stopping.

For me, LDN was wonderful, effectively blocking my neuropathic pains. No negative effects. I'm certainly glad that I tried it. I didn't bother with starting with trivial doses; I took the recommended 4.5 mg. After seeing that it worked (which it did the next day), I experimented with different dosages, and eventually arrived at 2.5 mg (sublingually, being ~1/3rd more effective that way) taken every 36 hrs.

 

[Wanja]

What's important is probabilities, not just remote possibilities. While it's possible that a treatment that is considered very safe for most people could possibly have a negative effect on a particular individual, the chance of a beneficial or at least neutral response may be far, far higher. The chance for a worsening of your condition might be higher from doing nothing than from trying LDN or other 'generally safe' treatments. Oh, also the probability of a long-term negative effect is probably a lot lower than the chance of a negative effect that goes away after some hours. I've tried lots of things that made my ME symptoms worse, but none lasted more than a day or two after stopping.

For me, LDN was wonderful, effectively blocking my neuropathic pains. No negative effects. I'm certainly glad that I tried it. I didn't bother with starting with trivial doses; I took the recommended 4.5 mg. After seeing that it worked (which it did the next day), I experimented with different dosages, and eventually arrived at 2.5 mg (sublingually, being ~1/3rd more effective that way) taken every 36 hrs.

Ok.. My family sees me in that condition tho as i have this severe neurological symptoms and i literally have nothing left of my life atm... I cant enjoy anything anymore. They really want me to try it and improve as was really suicidal for a couple of weeks when it was insane, which it still is but... I dont know if i can wait for 3 more month and let them just watch me being in this state with no help... Sure i can, but it wont be easy.
The problem is that this is a completly new sickness for me, nothing like iwas confronted with the last 6 years. Its so crazy whats going on o dont even know if some of this is still cfs.

 

[Sophiedw]

I haven’t read this whole thread but my over reaction to 5htp and tryptophan was ameliorated by l-lysine. In no way saying that’s I’ll work fir you as symptoms not so severe but more minor versions. They definitively oppose one another and lysine blocks serotonin receptors. Best of luck.

 

[Wanja]

I would wait till the 6 months mark......yes I did see ppl go into a long term setback from it. BUT it's with every kind of treatment.some find help,some get severely worse .i learnt there is no point comparing to others,because we all have different pathsways activated in the brain.its horrible I know ,so I m sorry I can t tell you what's the right choice.its trial and error.if you try it mabey start with1/10 of the recommended dose.

What where the supplements you where traumatized from and what happened? I am curious

 

[Wishful]

As i am severe now after taking a 5-HTP supplement

Keep in mind that it may not have been the 5-HTP. It's really hard to prove that sort of one incident correlation. It may have been the 5-HTP, or it may have been some contaminant in that batch, or it may have been unrelated to that. Maybe you picked up an infection at that time. Maybe there was something in a food you ate. Maybe something in your body reached a certain point and switched state, and would have done so whether you'd taken the 5-HTP or not. I suggest you not focus only on 'what will treat 5-HTP or TRP disorders', but widen your options to what might help with mysterious neurological disorders in general. Don't lock yourself into turning down potential treatments just because they have nothing to do with TRP metabolism. When the cause of a medical problem is a complete mystery, you don't know what won't help.

 

[Wanja]

Keep in mind that it may not have been the 5-HTP. It's really hard to prove that sort of one incident correlation. It may have been the 5-HTP, or it may have been some contaminant in that batch, or it may have been unrelated to that. Maybe you picked up an infection at that time. Maybe there was something in a food you ate. Maybe something in your body reached a certain point and switched state, and would have done so whether you'd taken the 5-HTP or not. I suggest you not focus only on 'what will treat 5-HTP or TRP disorders', but widen your options to what might help with mysterious neurological disorders in general. Don't lock yourself into turning down potential treatments just because they have nothing to do with TRP metabolism. When the cause of a medical problem is a complete mystery, you don't know what won't help.

yes you are right, i am actually looking in every direction atm but i am kinda helpless as nobody has similiar symptoms to mine or experiences. Having something with your Brain going on that wrong just makes you think what could have happened... this is not normal cfs for me so i think its not from a normal trigger like over exhaustion. The whole crash was so weird and strange... i just need answers and the 5 HTP fits so nicely atm as it started right after i took it and uped the dose. It really feels like something is wrong with my neurotransmitters tho, all the imaging tests are fine. Everything which involves Brain Chemistry was messed up the last 3 Month...

 

[Alvin2]

i am kinda helpless as nobody has similiar symptoms to mine or experiences

Are you sure you have ME/CFS and were not misdiagnosed?

 

[Irat]

yes you are right, i am actually looking in every direction atm but i am kinda helpless as nobody has similiar symptoms to mine or experiences. Having something with your Brain going on that wrong just makes you think what could have happened... this is not normal cfs for me so i think its not from a normal trigger like over exhaustion. The whole crash was so weird and strange... i just need answers and the 5 HTP fits so nicely atm as it started right after i took it and uped the dose. It really feels like something is wrong with my neurotransmitters tho, all the imaging tests are fine. Everything which involves Brain Chemistry was messed up the last 3 Month...

You can join the group neurotoxicity on faceboock....thounsands of ppl injured by different kind of medication,especially antidepressants and benzos....there you probably find your range of symptoms.

 

[Wanja]

Are you sure you have ME/CFS and were not misdiagnosed?

All the doctors read my prior CFS Diagnosis and stamp every Symptom i have as CFS and say "well we cant do anything about it its CFS" . I cant get out of it, even tho i tell them "this is not CFS anymore, i need help!"

I may be misdiagnosed. They did a lot of tests but not everything. I have chronuc weakness but... I dont know if i have PEM. Its fluctuating but doesnt really seem to be related to stuff i do. And how can it be that iam sever for 3 weeks and then suddenly my energy comes a little back, but my cognitiv symptoms are on the same level as before.

 

[Alvin2]

All the doctors read my prior CFS Diagnosis and stamp every Symptom i have as CFS and say "well we cant do anything about it its CFS" . I cant get out of it, even tho i tell them "this is not CFS anymore, i need help!"

Thats called anchoring bias. Hard to get away from but doctors essentially do their specialty, its probably worth finding an ME/CFS specialist if you can or start with the common specialties, neurology, endocrinology etc.

I may be misdiagnosed. They did a lot of tests but not everything. I have chronuc weakness but... I dont know if i have PEM. Its fluctuating but doesn't really seem to be related to stuff i do. And how can it be that iam sever for 3 weeks and then suddenly my energy comes a little back, but my cognitiv symptoms are on the same level as before.

The worst part of not having a diagnostic test is that we can't be sure what we actually have. And being a wastebasket diagnosis it will turn out many have been misdiagnosed and won't know until we either get a diagnostic test or a treatment which won't work on those who were misdiagnosed in some cases for decades.