My gigantic story going back to 1996, please read this, treatment plan included!

[YippeeKi YOW !!]

China might have a powerful tool in TikTok.

It means that whatever their mindset, they can use the phenomenal amount of information they gather on a daily basis in a way that a warped mind would, which would def not be good news for us ....

I think we're teetering perilously close to the "NO POLITICS" rule here so lemme say that I think we agree ore than we disagree, and I bow to you superior cyber/site knowledge.

The thing is, look at what they are doing, they are making rules.

And we're doing the same thing with anti-trans laws ...

Damn .... I meant to stop .... helllllppppp meeeeeeee

 

[Rufous McKinney]

Doctors cured thiamine deficiency 100 years ago",

a friend called me, asked me to try Alli-Thiamine (said it helped her mother's peripheral neuropathy).

I purchased it and two other items recommended; and never took it.

I keep intending to actually try it.

Because it causes detox reactions, I hesitated and kept taking these "other B'" (the methylated ones, but lower dosage)

 

[TexRob]

It means that whatever their mindset, they can use the phenomenal amount of information they gather on a daily basis in a way that a warped mind would, which would def not be good news for us ....

I think we're teetering perilously close to the "NO POLITICS" rule here so lemme say that I think we agree ore than we disagree, and I bow to you superior cyber. site nowledge.

And we're doing the same thing with anti-trans laws ...

Damn .... I meant to stop .... helllllppppp meeeeeeee

Sorry, I didn't know about that rule. Last thing I will say is I did not mean to imply we are the good guys either, let people be people, I'm empathetic and caring to a fault, but enough of that.

You don't really run to read the rules when you're looking for answers. I should go read them now that I am feeling better. Wanna hear something weird, I have a fan that I can turn on by an app on my phone, or by rolling my chair to it and pushing a button. For months I have only used the app. Today, almost instinctualy I wanted to turn it on, and just got up and did it. It was such a weird feeling, realizing I normally don't have the energy for such a simple thing. It reminded me how sometimes I feel like I lack the energy to say "Hey Google, turn off the nighstand lights" before going to bed, and my wife couldn't understand how that could be. I think I realize now, it was because I was basically always either breathing in or out, so to spit out a sentence meant I had to make that back up after taking the breath to say it. I think that in of itself, for me at least, is a great way to describe the mind numbing "fatigue/exhaustion" whatever we are calling it.

 

[TexRob]

a friend called me, asked me to try Alli-Thiamine (said it helped her mother's peripheral neuropathy).

I purchased it and two other items recommended; and never took it.

I keep intending to actually try it.

Because it causes detox reactions, I hesitated and kept taking these "other B'" (the methylated ones, but lower dosage)

Not just my anecdotal evidence, but those doctors I linked all talk about it. For some reason, it seems that giving all B vitamins is good, BUT when you are thiamine deficient, or not accessing it, you need a megadose of it combined with them, to get the process started. I think over the next year or so we are going to learn more about dosing and how to avoid the paradoxical effects, but honestly, it feels natural to me. It feels like toxins being released in my head and then flushed out. It's taking days for my head to get better, not hours. This might all be wrong, so I don't want to sound hokey or like I think I know the science, I am just giving you a feeling type response.

 

[Rufous McKinney]

It feels like toxins being released in my head

I think I know what you describe. I call it the Giant Bubble in My Head and I feel it whenever I try to detox.

I keep doing short bursts of detox then give in and stop.

(need to push thru it)

 

[TexRob]

I think I know what you describe. I call it the Giant Bubble in My Head and I feel it whenever I try to detox.

I keep doing short bursts of detox then give in and stop.

(need to push thru it)

Do it, you know this community will be here for you. I had to post on emotional support just a few days ago. That also means I could be a horror story on here in a week of "Oh, remember that guy that thought he was cured?" lol, but fingers crossed, this feels right.

 

[linusbert]

I honestly think on a greater level that is why they want to take down TikTok and such, it's keeping us from being connected

just using telegram.

 

[TexRob]

Do you all get the twitches/spasms? I have heard some doctors refer to it as Tourette's. I don't know what to call it, but it's one of the symptoms that is getting better, but still persists. As I type this, I'm at about the 5th or so head twitch since starting typing, and I type around 80wpm. I used to try and describe as that kind of twitch when you are nodding off, but I'm not nodding off. I haven't seen a lot of talk about it, but then I also thought I didn't have this condition for a long time because of thinking it was "long covid", so I might have a gap in knowledge. It's like my head jerks to the side and I blink. I can "fight it" for a long time, but it eventually builds to the point it happens.

 

[linusbert]

Do you all get the twitches/spasms? I have heard some doctors refer to it as Tourette's. I don't know what to call it,

yes i do (but only for me, not for all^^).
i think its a sign of muscle exhaustion or electrolyte imbalance.
i just began to ignore those... maybe take it as a sign to do some more resting.

also eye problems can lead to this when pinching the eyes to see sharper, this exhausts the muscles more.

 

[Violeta]

Do you all get the twitches/spasms? I have heard some doctors refer to it as Tourette's. I don't know what to call it, but it's one of the symptoms that is getting better, but still persists. As I type this, I'm at about the 5th or so head twitch since starting typing, and I type around 80wpm. I used to try and describe as that kind of twitch when you are nodding off, but I'm not nodding off. I haven't seen a lot of talk about it, but then I also thought I didn't have this condition for a long time because of thinking it was "long covid", so I might have a gap in knowledge. It's like my head jerks to the side and I blink. I can "fight it" for a long time, but it eventually builds to the point it happens.

Do you have any zinc deficiency symptoms. This could possibly one that isn't so well known.

And does it happen on your left side?

 

[YippeeKi YOW !!]

And if we ban TikTok, wow - the Chinese will never have access to any of our info!! Unless they just purchase it from Facebook, Experian, commercially available law enforcement databases, data aggregators…

Aye, and therein lies the rub .... they could buy it, but the buying of it makes it pretty much public, becasue SOMEONE's goig to leak that yeasty information. Probably i full detail. And then the battles would break out over here with those who so fecklessly thought that selling info to a country hell-bent o blowing us to hell if only they could get away with it was a good idea.

BUT ..... if they can steal it off of TikTok, it's waaaaay harder to track, probably would never really becme public knowledge, they'd have their cake and eat it too, and with luck get our own citizen's help in blowing us off the map.

So there's that ....

The bill banning TikTok is a terrible idea for many reasons, and I say that as someone who doesn't really use TikTok.

I'm really torn, I think any bill generated i the current House is probably deadly for many reasons, including the idiocy with which it would probably hvae been written, and I'm generally against the banning of information, except where it concerns sex trafficking, esp children.

But these are very .... diffrerent times, and dicey. It's a hard call, and I still wrstling with it ....

 

[TexRob]

Do you have any zinc deficiency symptoms. This could possibly one that isn't so well known.

And does it happen on your left side?

My only testing was in 2021:

Zinc

0.75 mcg/mL

0.66 - 1.10 mcg/mL0.66 - 1.10 mcg/mL

Normal range. That was a few years, so I'll ask them to re-check, and maybe add some in if it seems safe to. I don't know if I can say yes or no on the left side. I will say that the feeling of a knife being behind my eye, is my left eye, left temple. It gets so bad that my pupil would dialate differently on that side, and my eye would water from the intense pain.

 

[hapl808]

I'm really torn, I think any bill generated i the current House is probably deadly for many reasons, including the idiocy with which it would probably hvae been written, and I'm generally against the banning of information, except where it concerns sex trafficking, esp children.

But these are very .... diffrerent times, and dicey. It's a hard call, and I still wrstling with it ....

Yeah, I definitely lean against banning information. The idea of arbitrarily banning businesses because of their national affiliation isn't something democratic governments do. Today it's China or Russia, imagine whatever President you least like being granted the power to bully and threaten and ban businesses they don't like? In addition, they can put you in jail for attempting to circumvent that ban. It's just bad policy for a government and country that itself already outsources everything. We're going to ban TikTok because China Bad, but close to 100% of our smartphones are made there.

Do you all get the twitches/spasms?

Definitely. I believe they're called myoclonus or myoclonic jerks if you're trying to explain them to a doctor, although doctors dislike when we use words above our station.

 

[Violeta]

My only testing was in 2021:

Zinc

0.75 mcg/mL

0.66 - 1.10 mcg/mL0.66 - 1.10 mcg/mL

Normal range. That was a few years, so I'll ask them to re-check, and maybe add some in if it seems safe to. I don't know if I can say yes or no on the left side. I will say that the feeling of a knife being behind my eye, is my left eye, left temple. It gets so bad that my pupil would dialate differently on that side, and my eye would water from the intense pain.

Oh no, anything in the eyes makes me crazy, I can't imagine such intense pain, I hope you find relief.

 

[Violeta]

Definitely. I believe they're called myoclonus or myoclonic jerks if you're trying to explain them to a doctor, although doctors dislike when we use words above our station.

That's interesting, I looked it up with homeopathy and this link has a lot of info about it.

There are a number of remedies and zinc is one of them.

https://www.drhomeo.com/homeopathic-treatment/8-remedial-homeopathic-medicines-for-myoclonus/
Also, I wondered if COVID can cause a zinc deficiency and found this.

"It is also important to distinguish chronic zinc deficiency from deficiency acquired upon viral infection and immune response and their different supplementation strategies."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7781367/

 

[JES]

I started magensium 100mg, potassium gluconate, b complex, and benfothiamine 100mg 5 days ago now.

This is way too early to make a judgement for any therapy. A good rule of thumb is to be on a given supplement for at least a month. Reason being, many of us ME/CFS patients get temporary improvements from drug/supplement X that later fade out. I have experienced this with dozens of supplements. On this forum, user @Oliver3 reported he crashed in this thread following months of improvement from thiamine.

I'm trying really hard to not leave stuff out, but I know I am. The point is, I can see changes I haven't experienced in 4 years. This can't just be placebo, I am too in tune with my body, and the more you watch those videos and more on those channels, you'll start to see why it becomes obvious that I had this. I am on an SSRI, I take NSAIDs, all these things also further breakdown these cycles.

I don't think it's likely that it's placebo either when a very sick person notices improvement that is remarkable. It can be, but rather unlikely.

If I had money, I'd pay you all to try this treatment. These aren't fringe things, these are normal vitamins that we overlook because "Doctors cured thiamine deficiency 100 years ago", but nobody talks about how I'm 45 and what we eat is COMPLETELY different than what we ate when I was a kid.

Most people here do not overlook these treatments. We have literally tried a million different things. The more common the treatment, the more likely it has been tried by the ME/CFS community. Since thiamine is very common, it has been trialed by thousands of ME/CFS patients already. We have little reason to believe it's a magical cure or the whole ME/CFS online community would be aware of it already.

PLEASE PLEASE PLEASE TRY THIS, you have NOTHING but a few bucks on some vitamins to lose. Do NOT quit if you have paradoxical effects, I think that's the main reason people fail to succeed on this path, or they don't get a megadose (just meeting the thiamine need when deficient doesn't seem to be enough).

We have tried and some of us do react negatively even from something like thiamine, so there is always a certain benefit versus risk ratio. This forum has dozens of old threads on thiamine. There is no evidence to support ME/CFS patients are thiamine deficient and as you said, thiamine can work in ME/CFS patients by other mechanisms than treating a pure thiamine deficiency. Did you get your thiamine blood result back?

 

[TexRob]

We have tried and some of us do react negatively even from something like thiamine, so there is always a certain benefit versus risk ratio. This forum has dozens of old threads on thiamine. There is no evidence to support ME/CFS patients are thiamine deficient and as you said, thiamine can work in ME/CFS patients by other mechanisms than treating a pure thiamine deficiency. Did you get your thiamine blood result back?

Unfortunately no on the test results. I even tried to sign up for a Mayo Clinic account. Years ago you could sign up for a Labcorp beacon account to get your Labcorp results before they'd show up on things like EPIC (MyChart), but no luck. It looks like I'm gonna have to wait until next week, frustrating. It really wont' change anything for me, but I have been dying to post a vindication post, lol.

 

[Oliver3]

Just to be clear, even tho I crashed I'm still above baseline. I've moved to a slightly better level of functioning after being almost normal for hours at a time for two or three months

 

[YippeeKi YOW !!]

@linusbert ....

Damn, am I slooooowww .... I just closely read your signature ...

"i eat vegans, but only grassfeds and antibiotics free"
​

....and am rolling on floor, LOL ....

 

[TexRob]

Well, I dunno, maybe this is "good news" for the doubters about thiamine deficiency? I'm not sure. I am confident I am on the right path, now day 7, and feeling better and better. Mornings are a slight challenge, because of "morning depression" but I am very familiar with the feeling, so I know it's actually a good thing I just have to push past. Been yawning and needing to stretch like crazy, but I also keep getting the hiccups. I don't think I've had hiccups in a few years.

Anyhow, test results:

VITAMIN B1

101 nmol/L

70 - 180 nmol/L70 - 180 nmol/L