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Ok, this is quite a big deal for me. I need to get back what I had. I honestly don't know why I didn't try to reach out for help sooner, but here goes.
I hope I'm posting in the right place. There seems to be some knowledgable people here, though self-taught (?) although what I'm about to write covers a bit more than glutathione, detoxification, and chronic fatigue, although I believe that that is at the heart of it. I know I need to find help somewhere, perhaps a specialist. If noone here knows what has been going down in what I'm about to describe, maybe there's some genius at work in a lab in a foreign country who can tell me everything. Hmm, I like those odds.
I am a 27 yr old, male. I have been diagnosed with aspergers syndrome since 14 when investigating my chronic fatigue, which also started at 14. I was also diagnosed with dyspraxia shortly after that.
I've for the longest time considered my fatigue to be my biggest limitation. Since around October 2010 or possibly a bit earlier, I decided I was going to experiment on myself with supplements in an attempt to cure my ailment, regardless of the risks. I had actually decided that my life is not worth living unless I get this fixed. I would rather live for another ten years at my maximum, unhobbled potential, than live to 90 with my chronic fatigue. That's how I came to feel about it because I'm achieving about 1% of my life's potential as I am right now. I know that deep down, without exaggeration.
I've tried a broad array of substances: some allege to target sleep and improving its quality, some are supposed to give me energy for when I am awake, etc. Some are natural substances, some are minerals, some are drugs.
In no particular order here are the things I've tried over the last year (purchased and introduced gradually, not at the same time):
chlorella
spirulina
Maca root
Amla berry powder
NAC
MSM
Vitamin C
Glycine
Glutamine
Methylcobalamin
Adenosylcobalamin (Dibencozide)
Methylfolate
B mega complex
Arginine
Piracetam
Aniracetam
Sulbutiamine
Phenibut
Nicotine (gum)
GABA
Guarana
Phosphatidylserine
Fish oil
ALCAR
Whey protein
Taurine
Theanine
Choline bitartrate
DMAE bitartrate
Trimethylglycine
ALA (lipoic acid)
Boron
Iodine
Selenium (SeMC)
Manganese
Zinc
Magnesium (citrate)
Boron (di-calcium borogluconate)
Lithium orotate
Coq10 (ubiquinone)
Rhodiola rosea
Ashwagandha
Red ginseng
Siberian ginseng
green tea extract
milk thistle extract
grape seed extract
ginkgo biloba extract
The majority of these have been in powder form, measured on digital scales and consumed in a beaker of water.
In addition I should mention a few other details about my life, just to help build what might to someone be an illustration (or just rorschach blobs, who knows).
1. 'tics' throughout my life. I had not brought my attention to bear on these until this year, as they're minor and usually not debilitating, just annoying. They come in a phase that lasts a day to a week or so, and then goes for at least a month. My dad has one himself (going bug-eyed). Some of mine are: scrunching my eyelids tight and hard until it presses my eyeballs inward; making a faint half-cough, half-cluck sound in the back of my throat; squinting, as if trying to reach the perfect width gap between my not-quite-shut eyelids that will somehow then satisfy me; and other such quirks.
2. Performing 'chants'. I would do them out loud only when believing myself to be alone, out of an appalling fear of embarassment. They are nonesense phrases usually derived from reality (like a tv show) but deliberately taken out of context that I latch onto and mutter to myself over and over in vigorous sing-song. It feels like there is something maniacal and/or infantile about it. Turns out my dad does this as well, something he's never admitted to anyone else before. It only came out when I told him about mine. He actually said he never mentioned it to his psychiatrist (he has depression) because he "thinks they'll lock him up". I wouldn't say I feel that about mine, though I'd feel excruciatingly embarrassed if someone did hear me murmuring gibberish like a clinically insane toddler who can barely speak. I've no idea why I do it, and i'm not crazy, it feels similar to the tic urges I suppose.
3. Intense social awkwardness that has gotten worse as I've gotten older, probably because of their being a wider maturation gap between me and others when it comes to social adjustment, a gap that i'm conscious of.
4. What I believe, introspectively, to be a significant impairment in executive function and short-term memory, that has worsened since getting CFS.
5. A general lack of fitness and vitality about myself from my earliest memories in P.E. at school, despite having a slim and athletic muscular build. Obese kids could outrun me. I'm so bad at swimming I almost drowned once.
6. Since getting CFS, if I wake up prematurely during the night I have this gross feeling in my guts. But I don't get it otherwise.
Another thing that has happened only 3 times in my life, but feels significant enough to mention, are episodes where I went extremely faint and turned blue at the lips. In every single case i was exposed to cold (i.e. frosty weather) and subsequently warmed up when entering a warm building, and had previously been doing physical exertion. It only occurs when all these elements are in place. I also incidentally got a sort-of fourth one the other day when I trecked through some snow to a warm house, but it wasn't nearly as intense, I just got a bit light-headed. One of the first three episodes happened before getting CFS, the other two after.
Now I've explained a bit about myself (in the ways that I think matter) I'll tell you why I'm here.
I don't remember the exact chronology of events, or what inspired them. I apologise for and regret my hazy memory; my fatigue is now back though not quite as bad. But certain factors (things taken at the right time in the right amount) came into alignment along with taking certain things on inspiration by certain articles i'd read, led to the most intense experience of my life.
I'll try to explain it with a timeline. This is derived from a logfile I have on my computer. I logged everything I took when I took it; unfortunately I was less consistent and punctual about logging my feelings, mental and physical.
11/nov/10: I first take MSM and NAC powder.
During the following weeks, I'd have a response to NAC and sometimes MSM, but it wasn't consistent. It was pretty either-or though. I'd feel 'lifted', and "happy without effort", a rather rare feeling. Othertimes, I'd get nothing. It was quite a significant change in me; people around me noticed.
On some occasions when taking quite high doses, my skin smells different. I theorise it's my skin sweating it out?
In later weeks and months I would no longer get this effect so consistently or blatantly.
20/jan/11: First mention of feeling 'icky'.
This doesn't mean it's the first time I actually felt this. For all I know I could have been feeling it the entire time i've had CFS--it boggles my own mind that I can't say for sure, but I can't seem to recall. I don't even remember if it predated the beginning of my supplement experiments. One might say the gross feeling I had in my guts when woken prematurely is a similar feeling, however.
Anyway, feeling 'icky' can be approximately described as a mixture of having a cold and having a hangover, but more subtle. A kind of gross feeling throughout my veins and organs. Usually accompanied by extra brain-fog.
25/jan/11: I mention neck cramp and stiffness, after taking milk thistle and MSM.
07/feb/11: I take spirulina and chlorella for the first time.
12/feb/11: I take ten grams of chlorella and ten grams of spirulina, and go absolutely bonkers. I get this raging, torrential energy that I have to express. I start leaping up and down on the spot to burn some of it off. Totally uncharacteristic of my usual fatigued self. It lasts several hours.
The following day I get the response a fraction as intensely, and from thereon little to nothing.
01/mar/11: I mention stiffness in neck and throat, and experiencing 'neck chills'. Again, I don't know if these are my first neck chills or my first mentioning them. I have a feeling I've had them on and off my whole life, but just never paid any attention to them, just like the tics. They've been fairly infrequent if that's so.
NOTE: Neck chills are a major indicator of what is to come. There is nothing more perculiar and characteristic of my issues. I have a feeling there's something very fundamental to every one of my problems: Aspergers, fatigue, dyspraxia, and the back of my neck and/or spine, or at least that's where it manifests as a physical sensation.
Neck chills are like a tic but different. Sometimes they're more like 'shudders'. Unlike tics, though, they're not something I need to 'get out', more they're something I try and encourage. If I feel a shudder coming on i'll encourage it, and start shrugging my shoulders to bring it out. Tics are irresistable but very annoying to me, but this just feels like something good happening...?
~14/may/11:
I realise that while I'd been taking things alleged to 'detoxify' the body, I never actually increased my intake of fluid. I think I was warded off by the skepticism posed by the 'mainstream' toward the idea of 'detoxifying' and so I did it half-assed.
So I decide to drink more water. Also my kidneys started growling a lot and sometimes throbbing slightly over the next few days. I would also wake to pee in the night.
18/may/11:
This is where it all starts. From my hazy memory this is what I remember:
I was trying to figure out what was causing my 'icky' feeling. Looking at my logs, it seemed to happen most (where I bothered to mention it in my logs) around the time I either took milk thistle, or a 'glutathione mix'. What gets me is that I never bothered to define what the cryptic 'glutathione mix' is. I guess I assumed I would remember. I think it at least contains, NAC, glutamine and glycine, and _possibly_ MSM and vitamin C.
Anyway, I'd had alsorts of hypotheses about why I felt 'ick', such as taking too much vitamin d3, too much fat in my diet, ...
One website I came across suggested that chronic dehydration can be a problem. It suggested that you can be chronically dehydrated without realising it and alsorts of complications can arise from it. I had no idea if it was a quack concept or not. But it was one of several things I read over the coming days that fed into my inspiration (or suggestability/hypochondria). I decided to drink more water and also looked up replacing electrolytes.
Another thing, again I can't clearly recall what prompted it but I started looking up sodium bicarbonate. I read how athletes would take it in the presence of NAC. I'm not sure if this is because bicarb breaks down to sodium in the presence of NAC, or what.... but I decided to try it. (At the time, I'd not read about the benefits of bicarb on the kidneys).
On this day, I took 10 grams of bicarb, and 6 grams of what I call 'salt' in my logfile, but is actually a 50/50 combination of sodium chloride and potassium chloride. I also take magnesium and calcium.
I drink a fair bit of water and it starts inducing the shuddering an unusual amount. I write in my diary (before taking bicarb, incidentally):
"I feel like my body is undergoing something. Closing my eyes I can feel it, the shuddering is some kind of process. Gonna have even more water."
On this day I also mention a 'pricking' feeling below my left nipple that reoccured several times throughout the day.
I also didn't eat for most of the day and then ate ravenously at the end of it.
19-22 (or 23rd, can't remember):
These days are similar to the 18th. 21st is when I first mention 'rubbing myself'. I read about NAC causing kidney stones... given how my kidneys felt the other day I decide to ramp up vitamin C intake.
I'd wake up in the night to pee several times on these days.
Basically, this lump of days is a mere echo of the first 'big day' which is either the 23rd or 24th. It boggles my mind that I logged so poorly about what I underwent that I can't even tell which was the first big day... I guess I was too self-absorbed.
23rd/24th:
From this day and the next 5 or so, I have some of the best and strangest days of my life.
Each day would play out in a very similar way, like there was some fixed process being carried out by my body.
I would wake up and take NAC on its own.
I would drink water, a LOT of water, of amounts that are dangerous, though I was careful to replace electrolytes.
I responded to the water as if the water itself was the supplement.
My body would tense up and start shivering. I'd get neck chills up the wazoo. It felt like something EXTREMELY GOOD was happening to me.
Then I'd get bursts of mania. I'd cackle and laugh like the Joker. It was like a combination of happiness and RAGE. It felt like I was seeing the back of some looming opressor and frustrator of my life, at a subconscious level, though the reaction felt more reflexive than psychological... it's hard to say how much of it was just the involuntary firing of my nervous system and how much of it was a psychological reaction. It almost felt like the tearful emotion of standing over the dead body you had killed of someone who had tortured you for years. At teh time of it happening, though, I wasn't this introspective about it. I felt good, but with that good feeling 'tainted', if that's the word, by a ruefulness of all the 'not good' that preceded it.
I'd feel light as a feather... it feels like the wrong thing to say because I felt anger, but I felt really 'lifted'. I often described my chronic fatigue as like having a weight on my shoulders, like a dark heavy shroud. I'd leep around the house. I'd still be rubbing myself and shuddering during all this. Sometimes I'd grit my teeth and let out a low scream, but that felt good too, like needing to let off steam.
This 'mania' would only last a few minutes, almost in greeting of the process that has barely taken off.
I'd calm down emotionally, then, and experience a more physical process, that felt very good. I'd tremor around various parts of my body. I'd rub--it wasn't involuntary, but there was an urge to do it, and it felt good. It was pretty much like massaging myself.
I'd rub, and slap, parts of my body. Hours later I'd experience pricking and needling and jabbing in various points. I'd thump them and kneed my muscles, and it felt good to do it. SOmetimes I'd burst out laughing in an 'insane' way (not that i felt insane, it'd just _sound_ like the laugh of a madman to a listener). It was torrential giddiness.
I mention in my notes how it almost seems the water itself is a supplement. The more I drink the more intensely I shudder, not just in my neck but all over the body, and more manic I feel.
After about the fifth or sixth hour, I'd experience something I call 'brain booting up'. I'm not sure if it was my blood volume/fluid reaching a certain level that triggers it or what, but it made the 'lifted' feeling I felt earlier feel like a joke. It was like I was becoming sentient for the first time. IT was very either-or and abrupt, like snapping on a light switch. It felt a bit like piracetam inconsistently felt to me, times a million, without any of the crap. I felt like a god, just comparitively to how I was before. When I tried to discuss it on an internet forum later it was dubbed 'hypomania' to me, but I think I was merely reaching a level of brain activity that some sickness was supressing and is actually my normal level, and my glee at discovering such mental functioning for the first time looked manic.
I tried playing a video game, street fighter, on my computer. I normally fight against online opponents and have a 20% win ratio at best. I'm absolutely terrible because I can't process what's going on properly, the information is going by too fast. Doesn't stop me from playing, though; I just get very distressed and wound up when I lose.
From the first fight, I won ten fights in a row and unlocked an achievement, which previously would have been impossible. What's more it felt easy. I felt like a cowboy twirling his gun. I felt like a genius. I had a heady feeling of power. I felt like the person I always felt I could be but it somehow had eluded me. I felt FURIOUS and ANGRY that this had been denied to me, and furious that I couldn't direct my fury at anyone since it's a nondeterminate nonentity that has stood in my way. But if this cowboy had to shoot anyone it would be the medical system that has failed me.
It could be pure suggestion on my part, but I also started feeling like the horse-whisperer of my supplements. It was like I could feel exactly how many milligrams of what to dole out for myself. I remember specifically measuring out some magnesium citrate powder and a certain number felt exactly right. I also was very picky about foods. I felt far more intense feelings of steering away from some foods and stuffing my face with others. I felt like I was totally in tune with my body and knew exactly what it needed.
On the second day of this happening (probably the 24th but maybe 25th), it went into the twilight zone, so to speak. The day played out just like the previous. All the 'detox days' do. I reached this 'brain-booting' point once again late afternoon/evening (I found it very weird how I was back to square 1 in the morning and had to kick off the whole process again, but it became routinely like this). I'd got a massaging tool out this time, lay it on the floor and ran my back up and down it like a cheese-grater. It felt insanely good.
Anyway, on the second day when the 'brain-booting' happened, it eventually caused me to go into a trance. My theory, looking back on it, is that my mind saw it as an opportunity to reassess its content at this new level of functioning, while it had the chance to do so.
My mind turned entirely inward, and I started going through all my mental filing folders. My head hit the pillow and I started murmuring out loud affirmations, things like "Yes." "No", "That's so", "I think so", "I doubt that", "Probably", "I suppose". I was doing this for over an hour.
I've spent the last 5 years or so since I dropped out of college (due to fatigue problems) introspecting and i've written over a million words just analysing my thought processes. I think this was kind of mating of my physiological and psychological issues. It was a culmination of the work I'd tried to put in to what I perceived as my neuroses. What I think my mind was doing in this trance was reassessing all of its contents and stamping new labels on things or moving them around.
I don't know, really. That's just my guess. It was the strangest thing that's EVER happened to me, though, outside of dreams. It only happened this one day, though I did experience the 'brain booting' a few more times.
On the following days, I could not see anything going wrong with this. I thoguht I was on the road to more than any recovery I could ever have imagined. I started calling this whole process 'detox symptoms' just because I had nothing else to go by. It was totally characterised by shuddering and neck chills and a mood lift, as like the beginning of a rocket taking off.
Near the end of the months, at an end of a day spent entirely 'detoxing', I would go to bed with my spine feeling like lead (this didn't happen on the first intense days including the one where I went into a trance, but the days immediately after). I got this about three times. It was the most perculiar feeling. It kind of frightened me but it didn't feel bad at all, just strange. My theory at the time was that all those pricking feelings were heavy metals or toxins of some sort lodged in my tissues, and the increase in blood volume was causing the detoxifying substances to penetrate deeper tissues, eventually reaching my spine. On a much later day after several upsets I got this pricking feeling in my BRAIN, but this only happened once.
But by the 28th, I think, things were already starting to take a very slight tilt downward. The symptoms were less intense.
On one day I take msm with the NAC, and weirdly the symptoms don't kick off like they did the previous day. It's almost like the day was upside down: the good feeling I normally got at the end of the day, started at the beginning. It was definitely the taking the MSM that made the difference and I don't understand it.
01/June/11:
I took a bath on this day. I get out of the bath feeling great. 20 minutes later, I experience a huge crash. I feel causelessly anxious and apprehensive, almost frightened. I spend hours thinking it's psychological, only to remember at night that I seem to sweat out NAC and/or MSM or sulphur in my pores. Not to mention sodium, which is what I'm retaining all the water with. I don't know what specifically happened but it showed that either a depletion of those sulphuric/detoxing compounds, or a decrease in fluid retention, or both, from the hot bath, caused a crash. IT was an extra affirmation of the causality of it all. I spent the rest of the day miserably depressed and upset.
05/June/11:
I'm becoming downright aggravated that my symptoms have been dropping off. I felt like my lifeline had been taken away. On this day I realise I'd tapered off my intake of bicarb unconsciously, perhaps out of fear of what I might be doing to myself and wanting to introduce some prudence. I actually never connected the intake of the bicarb as having anything to do with my symptoms, at the time. I viewed it as purely incidental. I take a 5 gram lump and the detox symptoms kick off immediately, resulting in another day of the same kind of episode. It was like it had never gone away.
I can't recall the timeline from hereon very well and my logfiles are tiresome to process (as you can surmise I have chronic fatigue as much as ever, right now, so this story doesn't have a happy ending).
Anyway, over the next week or two I feel healthier then ever. I walk upright, feel more empathy, talk to others like a human being and adult. I feel tall and strong--whereas befoer I felt like a worm in comparison. I command respect and attention from others just with my voice. I feel attractive, I get attention from the opposite sex. I like myself. I experience no anxiety.
Other problems righted themselves too: a dysuria I was having cleared up, and my handwriting (dysgraphia, from the dyspraxia) improved drastically. I actually got one of those jabbing feelings I mentioned earlier, where my prostate was!
People I know tell me I seem more caring and more _normal_. I've always been caring, though, I've just been impaired in my ability to show it. That asperger's you know (it sickens me that some people who have it actually think aspergers is a good thing to have and wouldn't want to be cured of it, but i think they're just ignorant and misunderstanding its true nature). Incidentally I read an article that suggests a genetic link between autism and chronic fatigue. Hmm.
I had mettle, I had fitness, I felt like everything was working correctly. You don't know what kind of person I was... or maybe you do. I was ridiculously emotionally and physically dependant and fragile, even before chronic fatigue. Now I felt like someone who could take the burden of someone else's emotions and make them feel better. A rock for others to lean on, not some drab seaweed flung over an unwilling rock that is another person. Night and day feels like an understatement of the difference. I felt like a leader of men, whereas befoer I was someone who tried not to draw attention from anybody for fear of being exposed as a pushover and social fraud.
I always felt like unactualised potential was the theme of my life. I felt like my true ability always eluded me. I believe it was cognitive impairment when it came to memory and information processing. My intellect was and is very high, but it was like funnelling an ocean through a drinking straw. It was maddeningly frustrating. Part of my brain just refused to work for me.
Of course I didn't graduate to the point where I really put any of this newfound capability into practice. The 'detox episodes' became more and more infrequent and less short lived, although I'd have the occasional really great day among many ordinary days.
I had a number of theories of what i was doing to myself, but I really didn't have the expertise to figure it out and why it had now stopped. It was a combination of peristance and lucky physiological factors that unlocked what happened to me, I think. I wanted to seek out expert help but didn't know where to begin, and procrastinated endlessly about it. I figured if I went to my doctor I wouldn't know where to begin explaining (look at the length of this post) and he'd probably turn his nose up at it or not have the faintest idea what to do with the information. But I never put it to the test.
Several times I thought I had found the 'missing link'. I sporadically reintroduced thigns I'd stopped taking and sometimes would think it was bringing the symptoms backed, but it was a mere echo of what happened before. I remember reintroducing dextrose (I took these with the 'electrolytes' the first few days where I got th symptoms) and that also brought it back a bit like the bicarb did, but not as intensely.
The last time I had a very blatant detox episode, was 26/july, but that still only lasted from afternoon to evening. It had been at least a week since the previous episode. I remember I was out at a shop and felt like I was walking on air, and several people turned and smiled at me. I felt like I wanted to grab life by the balls.
Then I went home and the next day it was all gone. On the end of that day I even mentioning "feeling the ick descending on my brain".
Later on I even describe the shuddering/detox symptoms as 'ick going the right way' and this other feeling, totally new and terrifying, of 'ick going the wrong way'. It feels like poison reentering me. As I said, completely new. What's weird is that it takes little provocation to go either way, like it's fence-straddling. My physiological state surely is drastically differing from what it was earlier. Maybe I don't know and few people know what the repercussions are of long term high intake of bicarb, salt, fluid, or what have you...
I apologise for the length/convolutedness of this post. I'm all over the place and my memory is hazy, I may even repeat myself.
That's not to say after that last episode, I didn't experience anything like it since, it was just like the same thing taking place over the course of an hour rather than a whole day, and at about a quarter the intensity.
I felt like something was missing from me. At one point it felt like my brain was just fried. I concluded it highly possible that I had deplored reserves of something(s) and that was preventing me from continuing. I learned about the importance of taking molybdenum and selenium with NAC, and Zinc too. Wish I knew earlier.
I started bringing things back. I brought back caffeine too, which I'd stopped taking. THis last month I drew up a spreadsheet of everything I took the 8 days before and after the 18th of May, and reintroduced most of them. I started picking up again but didn't really get any detox symptoms again. I went from amoeba to ant. My neck chills started coming back though; they had dissapeared completely when I most felt 'something missing'.
According to the spreadsheet I was taking raw eggs with milk thistle around the time I had the episodes, also a fair bit of piracetam that i'd since cut out... oh, and I was taking a fair bit of methylcobalamin, though inconsistently.
This last three weeks I bought a LOT of methylcobalamin and started taking 3x 5mg tabs a day, sublingual. The only thing it's done so far is reduce my sleep requirements significantly. I abused this without restraint, staying up late and getting up early. I think I gravitate toward night-owl behaviour because I can't stand being cramped in a house with two other people and night is when it feels like the house is empty.
What I don't get is how all this was 'detox', since it was such an abrupt, either-or difference when my brain 'booted up', as well as whether a detox episode was happening at all. I'd feel like a god at the end of the day, and like my usual mediocre self the following morning. At the end of May, my body was primed for whatever the hell it had been doing. Perhaps months of taking NAC and MSM with inadequate fluid had filled my body with crap and taking bicarb which assisted my kidneys (or, got broke down to sodium in the bloodstream and helped 'pull out' what was in the cells--I don't know enough about human physiology to know if that's even possible) and retaining lots of water helped flush it out in a rush... but if all that crap is now gone, why do I not have the superman (or just normal man) brain? I don't think this is over at all. I still get the neck shudders. I know detoxing is supposed to take months... maybe what I did caused it to happen in days. But why do I feel like hell now? If it's detox, why do I feel like a different man in the space of a few hours? Why do I feel a million times happier in a few minutes of downing over a litre of water?
Anyway, I'd rather break this off now than ramble on without direction or purpose, if someone starts throwing questions at me it will reorientate me or help trigger my memory where I've forgotten to mention something. I hope I haven't confused whoever is reading this.
Hoping desparately for help
Rob
I hope I'm posting in the right place. There seems to be some knowledgable people here, though self-taught (?) although what I'm about to write covers a bit more than glutathione, detoxification, and chronic fatigue, although I believe that that is at the heart of it. I know I need to find help somewhere, perhaps a specialist. If noone here knows what has been going down in what I'm about to describe, maybe there's some genius at work in a lab in a foreign country who can tell me everything. Hmm, I like those odds.
I am a 27 yr old, male. I have been diagnosed with aspergers syndrome since 14 when investigating my chronic fatigue, which also started at 14. I was also diagnosed with dyspraxia shortly after that.
I've for the longest time considered my fatigue to be my biggest limitation. Since around October 2010 or possibly a bit earlier, I decided I was going to experiment on myself with supplements in an attempt to cure my ailment, regardless of the risks. I had actually decided that my life is not worth living unless I get this fixed. I would rather live for another ten years at my maximum, unhobbled potential, than live to 90 with my chronic fatigue. That's how I came to feel about it because I'm achieving about 1% of my life's potential as I am right now. I know that deep down, without exaggeration.
I've tried a broad array of substances: some allege to target sleep and improving its quality, some are supposed to give me energy for when I am awake, etc. Some are natural substances, some are minerals, some are drugs.
In no particular order here are the things I've tried over the last year (purchased and introduced gradually, not at the same time):
chlorella
spirulina
Maca root
Amla berry powder
NAC
MSM
Vitamin C
Glycine
Glutamine
Methylcobalamin
Adenosylcobalamin (Dibencozide)
Methylfolate
B mega complex
Arginine
Piracetam
Aniracetam
Sulbutiamine
Phenibut
Nicotine (gum)
GABA
Guarana
Phosphatidylserine
Fish oil
ALCAR
Whey protein
Taurine
Theanine
Choline bitartrate
DMAE bitartrate
Trimethylglycine
ALA (lipoic acid)
Boron
Iodine
Selenium (SeMC)
Manganese
Zinc
Magnesium (citrate)
Boron (di-calcium borogluconate)
Lithium orotate
Coq10 (ubiquinone)
Rhodiola rosea
Ashwagandha
Red ginseng
Siberian ginseng
green tea extract
milk thistle extract
grape seed extract
ginkgo biloba extract
The majority of these have been in powder form, measured on digital scales and consumed in a beaker of water.
In addition I should mention a few other details about my life, just to help build what might to someone be an illustration (or just rorschach blobs, who knows).
1. 'tics' throughout my life. I had not brought my attention to bear on these until this year, as they're minor and usually not debilitating, just annoying. They come in a phase that lasts a day to a week or so, and then goes for at least a month. My dad has one himself (going bug-eyed). Some of mine are: scrunching my eyelids tight and hard until it presses my eyeballs inward; making a faint half-cough, half-cluck sound in the back of my throat; squinting, as if trying to reach the perfect width gap between my not-quite-shut eyelids that will somehow then satisfy me; and other such quirks.
2. Performing 'chants'. I would do them out loud only when believing myself to be alone, out of an appalling fear of embarassment. They are nonesense phrases usually derived from reality (like a tv show) but deliberately taken out of context that I latch onto and mutter to myself over and over in vigorous sing-song. It feels like there is something maniacal and/or infantile about it. Turns out my dad does this as well, something he's never admitted to anyone else before. It only came out when I told him about mine. He actually said he never mentioned it to his psychiatrist (he has depression) because he "thinks they'll lock him up". I wouldn't say I feel that about mine, though I'd feel excruciatingly embarrassed if someone did hear me murmuring gibberish like a clinically insane toddler who can barely speak. I've no idea why I do it, and i'm not crazy, it feels similar to the tic urges I suppose.
3. Intense social awkwardness that has gotten worse as I've gotten older, probably because of their being a wider maturation gap between me and others when it comes to social adjustment, a gap that i'm conscious of.
4. What I believe, introspectively, to be a significant impairment in executive function and short-term memory, that has worsened since getting CFS.
5. A general lack of fitness and vitality about myself from my earliest memories in P.E. at school, despite having a slim and athletic muscular build. Obese kids could outrun me. I'm so bad at swimming I almost drowned once.
6. Since getting CFS, if I wake up prematurely during the night I have this gross feeling in my guts. But I don't get it otherwise.
Another thing that has happened only 3 times in my life, but feels significant enough to mention, are episodes where I went extremely faint and turned blue at the lips. In every single case i was exposed to cold (i.e. frosty weather) and subsequently warmed up when entering a warm building, and had previously been doing physical exertion. It only occurs when all these elements are in place. I also incidentally got a sort-of fourth one the other day when I trecked through some snow to a warm house, but it wasn't nearly as intense, I just got a bit light-headed. One of the first three episodes happened before getting CFS, the other two after.
Now I've explained a bit about myself (in the ways that I think matter) I'll tell you why I'm here.
I don't remember the exact chronology of events, or what inspired them. I apologise for and regret my hazy memory; my fatigue is now back though not quite as bad. But certain factors (things taken at the right time in the right amount) came into alignment along with taking certain things on inspiration by certain articles i'd read, led to the most intense experience of my life.
I'll try to explain it with a timeline. This is derived from a logfile I have on my computer. I logged everything I took when I took it; unfortunately I was less consistent and punctual about logging my feelings, mental and physical.
11/nov/10: I first take MSM and NAC powder.
During the following weeks, I'd have a response to NAC and sometimes MSM, but it wasn't consistent. It was pretty either-or though. I'd feel 'lifted', and "happy without effort", a rather rare feeling. Othertimes, I'd get nothing. It was quite a significant change in me; people around me noticed.
On some occasions when taking quite high doses, my skin smells different. I theorise it's my skin sweating it out?
In later weeks and months I would no longer get this effect so consistently or blatantly.
20/jan/11: First mention of feeling 'icky'.
This doesn't mean it's the first time I actually felt this. For all I know I could have been feeling it the entire time i've had CFS--it boggles my own mind that I can't say for sure, but I can't seem to recall. I don't even remember if it predated the beginning of my supplement experiments. One might say the gross feeling I had in my guts when woken prematurely is a similar feeling, however.
Anyway, feeling 'icky' can be approximately described as a mixture of having a cold and having a hangover, but more subtle. A kind of gross feeling throughout my veins and organs. Usually accompanied by extra brain-fog.
25/jan/11: I mention neck cramp and stiffness, after taking milk thistle and MSM.
07/feb/11: I take spirulina and chlorella for the first time.
12/feb/11: I take ten grams of chlorella and ten grams of spirulina, and go absolutely bonkers. I get this raging, torrential energy that I have to express. I start leaping up and down on the spot to burn some of it off. Totally uncharacteristic of my usual fatigued self. It lasts several hours.
The following day I get the response a fraction as intensely, and from thereon little to nothing.
01/mar/11: I mention stiffness in neck and throat, and experiencing 'neck chills'. Again, I don't know if these are my first neck chills or my first mentioning them. I have a feeling I've had them on and off my whole life, but just never paid any attention to them, just like the tics. They've been fairly infrequent if that's so.
NOTE: Neck chills are a major indicator of what is to come. There is nothing more perculiar and characteristic of my issues. I have a feeling there's something very fundamental to every one of my problems: Aspergers, fatigue, dyspraxia, and the back of my neck and/or spine, or at least that's where it manifests as a physical sensation.
Neck chills are like a tic but different. Sometimes they're more like 'shudders'. Unlike tics, though, they're not something I need to 'get out', more they're something I try and encourage. If I feel a shudder coming on i'll encourage it, and start shrugging my shoulders to bring it out. Tics are irresistable but very annoying to me, but this just feels like something good happening...?
~14/may/11:
I realise that while I'd been taking things alleged to 'detoxify' the body, I never actually increased my intake of fluid. I think I was warded off by the skepticism posed by the 'mainstream' toward the idea of 'detoxifying' and so I did it half-assed.
So I decide to drink more water. Also my kidneys started growling a lot and sometimes throbbing slightly over the next few days. I would also wake to pee in the night.
18/may/11:
This is where it all starts. From my hazy memory this is what I remember:
I was trying to figure out what was causing my 'icky' feeling. Looking at my logs, it seemed to happen most (where I bothered to mention it in my logs) around the time I either took milk thistle, or a 'glutathione mix'. What gets me is that I never bothered to define what the cryptic 'glutathione mix' is. I guess I assumed I would remember. I think it at least contains, NAC, glutamine and glycine, and _possibly_ MSM and vitamin C.
Anyway, I'd had alsorts of hypotheses about why I felt 'ick', such as taking too much vitamin d3, too much fat in my diet, ...
One website I came across suggested that chronic dehydration can be a problem. It suggested that you can be chronically dehydrated without realising it and alsorts of complications can arise from it. I had no idea if it was a quack concept or not. But it was one of several things I read over the coming days that fed into my inspiration (or suggestability/hypochondria). I decided to drink more water and also looked up replacing electrolytes.
Another thing, again I can't clearly recall what prompted it but I started looking up sodium bicarbonate. I read how athletes would take it in the presence of NAC. I'm not sure if this is because bicarb breaks down to sodium in the presence of NAC, or what.... but I decided to try it. (At the time, I'd not read about the benefits of bicarb on the kidneys).
On this day, I took 10 grams of bicarb, and 6 grams of what I call 'salt' in my logfile, but is actually a 50/50 combination of sodium chloride and potassium chloride. I also take magnesium and calcium.
I drink a fair bit of water and it starts inducing the shuddering an unusual amount. I write in my diary (before taking bicarb, incidentally):
"I feel like my body is undergoing something. Closing my eyes I can feel it, the shuddering is some kind of process. Gonna have even more water."
On this day I also mention a 'pricking' feeling below my left nipple that reoccured several times throughout the day.
I also didn't eat for most of the day and then ate ravenously at the end of it.
19-22 (or 23rd, can't remember):
These days are similar to the 18th. 21st is when I first mention 'rubbing myself'. I read about NAC causing kidney stones... given how my kidneys felt the other day I decide to ramp up vitamin C intake.
I'd wake up in the night to pee several times on these days.
Basically, this lump of days is a mere echo of the first 'big day' which is either the 23rd or 24th. It boggles my mind that I logged so poorly about what I underwent that I can't even tell which was the first big day... I guess I was too self-absorbed.
23rd/24th:
From this day and the next 5 or so, I have some of the best and strangest days of my life.
Each day would play out in a very similar way, like there was some fixed process being carried out by my body.
I would wake up and take NAC on its own.
I would drink water, a LOT of water, of amounts that are dangerous, though I was careful to replace electrolytes.
I responded to the water as if the water itself was the supplement.
My body would tense up and start shivering. I'd get neck chills up the wazoo. It felt like something EXTREMELY GOOD was happening to me.
Then I'd get bursts of mania. I'd cackle and laugh like the Joker. It was like a combination of happiness and RAGE. It felt like I was seeing the back of some looming opressor and frustrator of my life, at a subconscious level, though the reaction felt more reflexive than psychological... it's hard to say how much of it was just the involuntary firing of my nervous system and how much of it was a psychological reaction. It almost felt like the tearful emotion of standing over the dead body you had killed of someone who had tortured you for years. At teh time of it happening, though, I wasn't this introspective about it. I felt good, but with that good feeling 'tainted', if that's the word, by a ruefulness of all the 'not good' that preceded it.
I'd feel light as a feather... it feels like the wrong thing to say because I felt anger, but I felt really 'lifted'. I often described my chronic fatigue as like having a weight on my shoulders, like a dark heavy shroud. I'd leep around the house. I'd still be rubbing myself and shuddering during all this. Sometimes I'd grit my teeth and let out a low scream, but that felt good too, like needing to let off steam.
This 'mania' would only last a few minutes, almost in greeting of the process that has barely taken off.
I'd calm down emotionally, then, and experience a more physical process, that felt very good. I'd tremor around various parts of my body. I'd rub--it wasn't involuntary, but there was an urge to do it, and it felt good. It was pretty much like massaging myself.
I'd rub, and slap, parts of my body. Hours later I'd experience pricking and needling and jabbing in various points. I'd thump them and kneed my muscles, and it felt good to do it. SOmetimes I'd burst out laughing in an 'insane' way (not that i felt insane, it'd just _sound_ like the laugh of a madman to a listener). It was torrential giddiness.
I mention in my notes how it almost seems the water itself is a supplement. The more I drink the more intensely I shudder, not just in my neck but all over the body, and more manic I feel.
After about the fifth or sixth hour, I'd experience something I call 'brain booting up'. I'm not sure if it was my blood volume/fluid reaching a certain level that triggers it or what, but it made the 'lifted' feeling I felt earlier feel like a joke. It was like I was becoming sentient for the first time. IT was very either-or and abrupt, like snapping on a light switch. It felt a bit like piracetam inconsistently felt to me, times a million, without any of the crap. I felt like a god, just comparitively to how I was before. When I tried to discuss it on an internet forum later it was dubbed 'hypomania' to me, but I think I was merely reaching a level of brain activity that some sickness was supressing and is actually my normal level, and my glee at discovering such mental functioning for the first time looked manic.
I tried playing a video game, street fighter, on my computer. I normally fight against online opponents and have a 20% win ratio at best. I'm absolutely terrible because I can't process what's going on properly, the information is going by too fast. Doesn't stop me from playing, though; I just get very distressed and wound up when I lose.
From the first fight, I won ten fights in a row and unlocked an achievement, which previously would have been impossible. What's more it felt easy. I felt like a cowboy twirling his gun. I felt like a genius. I had a heady feeling of power. I felt like the person I always felt I could be but it somehow had eluded me. I felt FURIOUS and ANGRY that this had been denied to me, and furious that I couldn't direct my fury at anyone since it's a nondeterminate nonentity that has stood in my way. But if this cowboy had to shoot anyone it would be the medical system that has failed me.
It could be pure suggestion on my part, but I also started feeling like the horse-whisperer of my supplements. It was like I could feel exactly how many milligrams of what to dole out for myself. I remember specifically measuring out some magnesium citrate powder and a certain number felt exactly right. I also was very picky about foods. I felt far more intense feelings of steering away from some foods and stuffing my face with others. I felt like I was totally in tune with my body and knew exactly what it needed.
On the second day of this happening (probably the 24th but maybe 25th), it went into the twilight zone, so to speak. The day played out just like the previous. All the 'detox days' do. I reached this 'brain-booting' point once again late afternoon/evening (I found it very weird how I was back to square 1 in the morning and had to kick off the whole process again, but it became routinely like this). I'd got a massaging tool out this time, lay it on the floor and ran my back up and down it like a cheese-grater. It felt insanely good.
Anyway, on the second day when the 'brain-booting' happened, it eventually caused me to go into a trance. My theory, looking back on it, is that my mind saw it as an opportunity to reassess its content at this new level of functioning, while it had the chance to do so.
My mind turned entirely inward, and I started going through all my mental filing folders. My head hit the pillow and I started murmuring out loud affirmations, things like "Yes." "No", "That's so", "I think so", "I doubt that", "Probably", "I suppose". I was doing this for over an hour.
I've spent the last 5 years or so since I dropped out of college (due to fatigue problems) introspecting and i've written over a million words just analysing my thought processes. I think this was kind of mating of my physiological and psychological issues. It was a culmination of the work I'd tried to put in to what I perceived as my neuroses. What I think my mind was doing in this trance was reassessing all of its contents and stamping new labels on things or moving them around.
I don't know, really. That's just my guess. It was the strangest thing that's EVER happened to me, though, outside of dreams. It only happened this one day, though I did experience the 'brain booting' a few more times.
On the following days, I could not see anything going wrong with this. I thoguht I was on the road to more than any recovery I could ever have imagined. I started calling this whole process 'detox symptoms' just because I had nothing else to go by. It was totally characterised by shuddering and neck chills and a mood lift, as like the beginning of a rocket taking off.
Near the end of the months, at an end of a day spent entirely 'detoxing', I would go to bed with my spine feeling like lead (this didn't happen on the first intense days including the one where I went into a trance, but the days immediately after). I got this about three times. It was the most perculiar feeling. It kind of frightened me but it didn't feel bad at all, just strange. My theory at the time was that all those pricking feelings were heavy metals or toxins of some sort lodged in my tissues, and the increase in blood volume was causing the detoxifying substances to penetrate deeper tissues, eventually reaching my spine. On a much later day after several upsets I got this pricking feeling in my BRAIN, but this only happened once.
But by the 28th, I think, things were already starting to take a very slight tilt downward. The symptoms were less intense.
On one day I take msm with the NAC, and weirdly the symptoms don't kick off like they did the previous day. It's almost like the day was upside down: the good feeling I normally got at the end of the day, started at the beginning. It was definitely the taking the MSM that made the difference and I don't understand it.
01/June/11:
I took a bath on this day. I get out of the bath feeling great. 20 minutes later, I experience a huge crash. I feel causelessly anxious and apprehensive, almost frightened. I spend hours thinking it's psychological, only to remember at night that I seem to sweat out NAC and/or MSM or sulphur in my pores. Not to mention sodium, which is what I'm retaining all the water with. I don't know what specifically happened but it showed that either a depletion of those sulphuric/detoxing compounds, or a decrease in fluid retention, or both, from the hot bath, caused a crash. IT was an extra affirmation of the causality of it all. I spent the rest of the day miserably depressed and upset.
05/June/11:
I'm becoming downright aggravated that my symptoms have been dropping off. I felt like my lifeline had been taken away. On this day I realise I'd tapered off my intake of bicarb unconsciously, perhaps out of fear of what I might be doing to myself and wanting to introduce some prudence. I actually never connected the intake of the bicarb as having anything to do with my symptoms, at the time. I viewed it as purely incidental. I take a 5 gram lump and the detox symptoms kick off immediately, resulting in another day of the same kind of episode. It was like it had never gone away.
I can't recall the timeline from hereon very well and my logfiles are tiresome to process (as you can surmise I have chronic fatigue as much as ever, right now, so this story doesn't have a happy ending).
Anyway, over the next week or two I feel healthier then ever. I walk upright, feel more empathy, talk to others like a human being and adult. I feel tall and strong--whereas befoer I felt like a worm in comparison. I command respect and attention from others just with my voice. I feel attractive, I get attention from the opposite sex. I like myself. I experience no anxiety.
Other problems righted themselves too: a dysuria I was having cleared up, and my handwriting (dysgraphia, from the dyspraxia) improved drastically. I actually got one of those jabbing feelings I mentioned earlier, where my prostate was!
People I know tell me I seem more caring and more _normal_. I've always been caring, though, I've just been impaired in my ability to show it. That asperger's you know (it sickens me that some people who have it actually think aspergers is a good thing to have and wouldn't want to be cured of it, but i think they're just ignorant and misunderstanding its true nature). Incidentally I read an article that suggests a genetic link between autism and chronic fatigue. Hmm.
I had mettle, I had fitness, I felt like everything was working correctly. You don't know what kind of person I was... or maybe you do. I was ridiculously emotionally and physically dependant and fragile, even before chronic fatigue. Now I felt like someone who could take the burden of someone else's emotions and make them feel better. A rock for others to lean on, not some drab seaweed flung over an unwilling rock that is another person. Night and day feels like an understatement of the difference. I felt like a leader of men, whereas befoer I was someone who tried not to draw attention from anybody for fear of being exposed as a pushover and social fraud.
I always felt like unactualised potential was the theme of my life. I felt like my true ability always eluded me. I believe it was cognitive impairment when it came to memory and information processing. My intellect was and is very high, but it was like funnelling an ocean through a drinking straw. It was maddeningly frustrating. Part of my brain just refused to work for me.
Of course I didn't graduate to the point where I really put any of this newfound capability into practice. The 'detox episodes' became more and more infrequent and less short lived, although I'd have the occasional really great day among many ordinary days.
I had a number of theories of what i was doing to myself, but I really didn't have the expertise to figure it out and why it had now stopped. It was a combination of peristance and lucky physiological factors that unlocked what happened to me, I think. I wanted to seek out expert help but didn't know where to begin, and procrastinated endlessly about it. I figured if I went to my doctor I wouldn't know where to begin explaining (look at the length of this post) and he'd probably turn his nose up at it or not have the faintest idea what to do with the information. But I never put it to the test.
Several times I thought I had found the 'missing link'. I sporadically reintroduced thigns I'd stopped taking and sometimes would think it was bringing the symptoms backed, but it was a mere echo of what happened before. I remember reintroducing dextrose (I took these with the 'electrolytes' the first few days where I got th symptoms) and that also brought it back a bit like the bicarb did, but not as intensely.
The last time I had a very blatant detox episode, was 26/july, but that still only lasted from afternoon to evening. It had been at least a week since the previous episode. I remember I was out at a shop and felt like I was walking on air, and several people turned and smiled at me. I felt like I wanted to grab life by the balls.
Then I went home and the next day it was all gone. On the end of that day I even mentioning "feeling the ick descending on my brain".
Later on I even describe the shuddering/detox symptoms as 'ick going the right way' and this other feeling, totally new and terrifying, of 'ick going the wrong way'. It feels like poison reentering me. As I said, completely new. What's weird is that it takes little provocation to go either way, like it's fence-straddling. My physiological state surely is drastically differing from what it was earlier. Maybe I don't know and few people know what the repercussions are of long term high intake of bicarb, salt, fluid, or what have you...
I apologise for the length/convolutedness of this post. I'm all over the place and my memory is hazy, I may even repeat myself.
That's not to say after that last episode, I didn't experience anything like it since, it was just like the same thing taking place over the course of an hour rather than a whole day, and at about a quarter the intensity.
I felt like something was missing from me. At one point it felt like my brain was just fried. I concluded it highly possible that I had deplored reserves of something(s) and that was preventing me from continuing. I learned about the importance of taking molybdenum and selenium with NAC, and Zinc too. Wish I knew earlier.
I started bringing things back. I brought back caffeine too, which I'd stopped taking. THis last month I drew up a spreadsheet of everything I took the 8 days before and after the 18th of May, and reintroduced most of them. I started picking up again but didn't really get any detox symptoms again. I went from amoeba to ant. My neck chills started coming back though; they had dissapeared completely when I most felt 'something missing'.
According to the spreadsheet I was taking raw eggs with milk thistle around the time I had the episodes, also a fair bit of piracetam that i'd since cut out... oh, and I was taking a fair bit of methylcobalamin, though inconsistently.
This last three weeks I bought a LOT of methylcobalamin and started taking 3x 5mg tabs a day, sublingual. The only thing it's done so far is reduce my sleep requirements significantly. I abused this without restraint, staying up late and getting up early. I think I gravitate toward night-owl behaviour because I can't stand being cramped in a house with two other people and night is when it feels like the house is empty.
What I don't get is how all this was 'detox', since it was such an abrupt, either-or difference when my brain 'booted up', as well as whether a detox episode was happening at all. I'd feel like a god at the end of the day, and like my usual mediocre self the following morning. At the end of May, my body was primed for whatever the hell it had been doing. Perhaps months of taking NAC and MSM with inadequate fluid had filled my body with crap and taking bicarb which assisted my kidneys (or, got broke down to sodium in the bloodstream and helped 'pull out' what was in the cells--I don't know enough about human physiology to know if that's even possible) and retaining lots of water helped flush it out in a rush... but if all that crap is now gone, why do I not have the superman (or just normal man) brain? I don't think this is over at all. I still get the neck shudders. I know detoxing is supposed to take months... maybe what I did caused it to happen in days. But why do I feel like hell now? If it's detox, why do I feel like a different man in the space of a few hours? Why do I feel a million times happier in a few minutes of downing over a litre of water?
Anyway, I'd rather break this off now than ramble on without direction or purpose, if someone starts throwing questions at me it will reorientate me or help trigger my memory where I've forgotten to mention something. I hope I haven't confused whoever is reading this.
Hoping desparately for help
Rob
