https://youtu.be/fsxnw2caw5c Thiamine deficiency as a main contributor to cfs

[Oliver3]

It seems so yes. I'm more interested in beta-endorphins and metenkephalins which have fatigue and pain reducing effects and are also immune modulating. These are low in CFS/ME and fibromyalgia.

https://www.pnas.org/doi/10.1073/pnas.1700712114
Here's an interesting tangent about endorphins and dopamine and it's affect on our sociability!

 

[Oliver3]

https://www.hindawi.com/journals/aurt/2011/129795/

Wow this is amazing and covers all sorts of what we've covered here.
One thing we can do is stay off all sugar, wheat and dairy as a test. Infections and inoculation also seem to be triggers for those with autism spectrum genetics.
Seems like navaiuxs cell danger response is real and causes this dysregulation in the body that we've covered
Interestingly, the sufferers in this paper all craves sugar, wheat and dairy. The very things that were dysregulating them metabolically, causing dysautonomia and reducing their thiamine were the things they craved

 

[Strawberry]

Go low....very very low and slow. Find out about the co factors needed or it might be what a lot of people are experiencing. Temporary relief, then a crash

I am also getting b complex, and have magnesium oil that I use. Anything more?

 

[Judee]

magnesium oil

Just read the post on that site about renal tubular acidosis. He warns about hyperchloremia from too much chloride in the body. It occurred after he'd been on high dose thiamine for a while but still just something to be aware of maybe.

 

[Oliver3]

I am also getting b complex, and have magnesium oil that I use. Anything more?

Electrolytes, lots of hydration. Molybdenum ( be careful there) abd selenium.
It's an experiment. Finding the right kind if thiamine too

 

[Judee]

Took some b-complex tonight. Just wanted to make sure I'm getting everything covered since Dr L says that supplementing with thiamine can uncover other deficiencies.

Man...oh...man, that addition has made me so wired. Hope it doesn't cause insomnia.

Be careful everyone.

I am also getting b complex

Just noticed you said that. (It didn't sink in the first time. )

Just a thought but if you aren't taking the b-complex yet, you might want to wait and just try the thiamine, magnesium and a multi (maybe a low-dose one) for now, at least based on my very recent experience with b-complex.

That's what Dr L recommended as a start in that tiny print screen file I attached to one of my other posts in this thread. Hope you can find it and read it...if you choose.

 

[Oliver3]

Don't take b complex at night and not high dosage. You need potassium to counteract the adrenaline either through food or shops. Try electrolytes too

 

[Oliver3]

Most people like us who supplement b complex without support will suffer. More adrenaline receptors are grown and that needs to be counteracted with either beta blockers or potassium magnesium and electrolytes.

 

[Judee]

With the increase in thiamine, my Reynauds was improving. I had about 4 days with mostly warm hands and feet but yesterday and today, it's back.

Don't take b complex at night and not high dosage. You need potassium to counteract the adrenaline either through food or shops. Try electrolytes too

Yikes. Now ya tell me.

Most people like us who supplement b complex without support will suffer. More adrenaline receptors are grown and that needs to be counteracted with either beta blockers or potassium magnesium and electrolytes.

I think I took those things last night too (not a beta blocker though) but maybe I needed more. ???

The only thing is sometimes taking minerals and electrolytes actually seem to make me colder. Maybe I'm just not getting the balance of them right.

Any ideas?

Edit: A recent blood test only showed sodium as low which happens to me a lot.

 

[Judee]

I'm on day 4 of Coenzymated B1 and the last 4 days have been the best I've felt in a long time. When sitting working, my energy and cognition have felt NORMAL at times. I still have OI and need full compression, but I was able to cut back on my droxidopa by 25%. Irritability and hypersensitivity to sound still a problem. I'm taking 3-5 lozenges of coenzymated B1 per day along with the 50mg of allithiamine. However, its early days. I usually wait at least 3 weeks before I report on something, but I think this one is a keeper.

This is wonderful!!! I'm so happy for you.

 

[Oliver3]

I did try to say..go low and slow...I really recommend you find the group on Facebook, u derstanding B12 deficiency as they deal with all these, paradoxical reactions.
You have to go very low.
Vit b is stimulating so don't take at night.
It also grows new adrenaline receptors at the beginning of treatment ( I can't remember why, it's to be found on the Facebook group I mentioned and potassium and other co factors are needed)
I did try and stress I'm in no way an expert but I've noticed a really big difference.
No brain fog. Better vascular feelings.
I brought my dose down as felt a bit funny like you after a few days. This reaction is really typical apparently and it's because imbalance and adjustment is occurring.

I now cut the thiamine hydrochloride into very small parts...maybe twenty milligrams a day.,..bentofioamine does nothing good or bad but b1 hydrochloride makes me remember how being human feels!!! Confidence, sharpness.
I'm saying now, I'm experimenting, I'm no expert but after finding the videos of this guy, and the Facebook group and knowing that the Facebook group presented to the omf and that Robert phair says B12 is not metabolized. I think all that means it's worth keeping going with.

It's a pity the guy in the video is not doing consultations at the moment but I suggest you watch all his videos.

I hope you find some relief with it

 

[Oliver3]

This is wonderful!!! I'm so happy for you.

Yes, my cognition has felt like ME...not m.e.!!! No confusion.
I've actually been funny too!!!
Noticed however a quicker temper. Like I say, an experiment

 

[Oliver3]

This is wonderful!!! I'm so happy for you.

It shows something is happening tho. Reynauds is pretty hard to treat from friends I know.
Also just as an aside, knowing coffee depletes thiamine, it now makes sense that around 27, I stopped being able to tolerate caffeine . Would get very adrenalised

 

[Judee]

I stopped being able to tolerate caffeine . Would get very adrenalised

I think I have ADHD though. Coffee/caffeine works the opposite for me. It actually calms me a lot. I have a hard time falling asleep if I don't have a cup before bed.

I have tried to go off of it a few times. The one time when I quit using it for 6 weeks straight, I was forgetting things exponentially more. Before that I would go into a room 1-2x a week and forget why I went but w/o the coffee it was like a constant (maybe 5x per day) event.

~~~

I went back just a while ago to watch one of Elliot's videos but can't keep my brain on topic. I'll have to try again later. My ability to focus and concentrate gets better the later in the evening (into early morning hours), I get.

Also I did request to join the FB group a few days ago but haven't been back there yet to see if I was approved. FB is hard for me too because it's visually crowded and can be sensory overload.

 

[Shanti1]

This is wonderful!!! I'm so happy for you.

Thanks Judee!
Since I did so well with the coenzymated B1, I decided to try Source Naturals coenzymated B Complex. Turns out I didn't react well to that and it knocked me back for a couple of days, but I'm back to my baseline now and finding the allithiamine and coenzymated B1 are still helpful. So many things stop helping me after a few weeks though, so fingers crossed it continues.

Thanks for the info on the coffee you posted and all the links to the thiamine posts on "hormones matter'. They were really helpful in educating myself and knowing what to watch for in terms of imbalances.

How is the experiment going for you?

 

[Judee]

How is the experiment going for you?

I am hopeful but think I'm experiencing those paradox reactions they talk about.

Yeah, b-complex didn't work well for me either. I was doing okay taking individual ones like B2, B3 with the Thiamine but just not the complex. Maybe I can reintroduce it in a tiny amount sometime down the road. It made me wired, motivated (which was nice), but very wired.

edit: B3 in the form of niacinamide. (I don't do well with the flushing kind of niacin.)

 

[Oliver3]

I am hopeful but think I'm experiencing those paradox reactions they talk about.

Yeah, b-complex didn't work well for me either. I was doing okay taking individual ones like B2, B3 with the Thiamine but just not the complex. Maybe I can reintroduce it in a tiny amount sometime down the road. It made me wired, motivated (which was nice), but very wired.

edit: B3 in the form of niacinamide. (I don't do well with the flushing kind of niacin.)

Like I have stated b complex is very hard for m.e. people to use. You need the co factors and bloods abalysed to really do it with success. I can't afford that so am flying by the seat of my pants
It will make you wired. I'll try to dig out the reason from the group

 

[Judee]

I'm listening. I stopped it. I was just giving Shanti an update.

 

[Oliver3]

I'm listening. I stopped it. I was just giving Shanti an update.

This is pretty interesting. Mentions why CFS sufferers need to supplement certain vits . Not as co factors to thiamine necessarily butcos of all the poison in our world.
I didn't realise how Inflammatory blue light is to both skin and the oxidative process

 

[Lilliand]

The b 12 deficiency group on Facebook has had patients go into remission from CFS.
It's just my job anyway, for this year, to try stuff around minerals. So morley Robbins magnesium advocacy group and getting b vits running properly again

Which FB group are you in? I've seen a few different b12 deficiency groups on there.