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

[linusbert]

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

the better test for b1 is transketolase in erythrozytes.
b1 also has strong need on potassium and phosphorus.

 

[TexRob]

the better test for b1 is transketolase in erythrozytes.
b1 also has strong need on potassium and phosphorus.

Ok, back to the doc I go, thanks! I had this test done Monday the 17th, literally the day after I found out about thiamine deficiency symptoms and started my treatment. I wonder how skewed it will be after a week or more of heavy treatment? Would it be a waste of time or no do you all think?

 

[linusbert]

Ok, back to the doc I go, thanks! I had this test done Monday the 17th, literally the day after I found out about thiamine deficiency symptoms and started my treatment. I wonder how skewed it will be after a week or more of heavy treatment? Would it be a waste of time or no do you all think?

if thiamin helps and fixes you, the diagnose has been made. no blood result will change that. that goes for all vitamins.

 

[TexRob]

if thiamin helps and fixes you, the diagnose has been made. no blood result will change that. that goes for all vitamins.

Yeah, if you watch that channel I linked at the start, EONation, he talks a lot about his big takeaway from the study he uses for a lot of his understanding, was that you didn't necessarily need to present with a clinical deficiency, but just look at the symptoms. I definitely had them all across the board, so I too am confident this is the right path.

Just to comment about my ongoing treatment. I added a multi to my daily intake, and added in a zinc gummy in the evenings per suggestions here. I am crashing almost on the clock at 3-3:30 each day, but not bad. I have to go lay down in a dark cool room, and just kind of take a break. It's weird, it's been like clockwork around the same time 3 or so days now. I don't have to nap, just a short break.

 

[linusbert]

a big factor for thiamin deficiency are teas. some black and green teas can directly bind the thiamin and make it unusable. if someone consumes a lot of it , this can happen.

 

[JES]

if thiamin helps and fixes you, the diagnose has been made. no blood result will change that. that goes for all vitamins.

I don't think that's correct. There are people online who have recovered or claim to have recovered from autoimmune diseases by megadosing vitamin D for example. This is not necessarily about treating a deficiency then, but medical use of vitamins that goes beyond that.

If blood tests from patient X confirmed low thiamine status and patient X presented with typical symptoms of thiamine deficiency (beriberi), then that would confirm B1 deficiency. This would also mean patient X never had ME/CFS as ME/CFS is not thiamine deficiency, but ME/CFS is diagnosed based on symptoms when all other causes (like thiamine deficiency) have been excluded.

If patient X presented with typical ME/CFS symptoms that to some degree improved with thiamine supplementation, I reckon the diagnosis would still be ME/CFS. There are ME/CFS patients who have reported improvement from various supplements like omega-3, vitamin B12, D, magnesium, etc. without necessarily being clinically deficient.

 

[linusbert]

I don't think that's correct. There are people online who have recovered or claim to have recovered from autoimmune diseases by megadosing vitamin D for example. This is not necessarily about treating a deficiency then, but medical use of vitamins that goes beyond that.

actually its like this in medical literature. if thiamin deficiency symptoms resolve after treatment with thiamin, the diagnosis is confirmed. blood checks are not reliably accurate.
also lets not forget that people can have multiple issues at once, like thiamin deficiency AND me/cfs (whatever that is) and a load of other things too.

but there is a difference between getting a bit better and being good again. texrob is describing massive recovery after thiamin.

but you are correct, people can benefit and not have a direct deficiency. but how to find out which is true if blood tests are not accurate?

 

[TexRob]

I can't write a lot right now, feeling horrible. Let me preface this with I kind of have an iron stomach, so food intolerance has never been a big problem for me, I just push through it.

My wife wanted pizza Friday night, I pushed it to Saturday. In the past high fat foods have messed me up (my gall bladder was removed with liver transplant). I had two pieces of your traditional big NY style slices on Saturday night. Sunday was a bit of a struggle. I had one piece again last night, and then some noodles with nutritional yeast. Last night was hell, and into this morning. Just terrible abdominal pain, I feel like I'm incredibly backed up. Tossed and turned all night, went a few times since getting up, but still in a lot of pain.

Still seeing signs of recovery though, yawning, needing to stretch, groggy in the mornings, etc. I think I might have learned I need to steer clear of high fat foods, at least until I'm recovered.

 

[linusbert]

tried cumin yet? its good for that kind of food, also wishful and other say it has a pem blocking effect.

also i cannot tolerate some fatty foods like fatty sea food.
in that case people can get much better if they also take L-carnitine. i tolerate omega 3 oils much better with l-carnitine.

 

[hapl808]

but you are correct, people can benefit and not have a direct deficiency. but how to find out which is true if blood tests are not accurate?

This is an issue with many tests, as we don't know if tests are measuring the right thing. Are intracellular levels the same, what about brain levels, and so forth. Thus the complexity of endocrinology, and the difficulty even agreeing on hormone levels or supplementation based on testing, along with a myriad of other issues.

 

[Viala]

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.

That's so typical with new supplements. I would say 3 to 6 months at least with normal activity levels, and it still has to be tested with typical PEM inducers like stress, overdoing or getting a simple cold. Some remissions can also happen without any cause. Five days sounds like a placebo, adrenaline or endorphin rush, way too early to encourage anyone to try it as a therapy. I sense that's the spirit of being new to the party.

 

[TexRob]

That's so typical with new supplements. I would say 3 to 6 months at least with normal activity levels, and it still has to be tested with typical PEM inducers like stress, overdoing or getting a simple cold. Some remissions can also happen without any cause. Five days sounds like a placebo, adrenaline or endorphin rush, way too early to encourage anyone to try it as a therapy. I sense that's the spirit of being new to the party.

Come on man, what good does this do? Do we need more pessimism in our lives? I am not an idiot, I've been suffering for the better part of 5 years, I know what my body is doing. I know that I haven't experienced some of these positive symptoms in YEARS, and you say it's placebo? Are we not on the same team here? FFS

I didn't know you have to take Zinc without food. I ate it with fatty foods two nights in a row, and believe that is why I am suffering. I took one zinc gummy here midday, and it has calmed the twitching down. I guess I need to learn a lot more about when to take various vitamins.

And as for the "the better test for b1 is transketolase in erythrozytes.", my doctor says she doesn't have that available. That seems weird?

 

[Viala]

Come on man, what good does this do?

A couple of days is too early to say it is a treatment, the title of your thread is misleading. What you have now is some kind of a remission, time will tell what it is. Also, cursing is not allowed here.

 

[cheeseater]

Most people do not take zinc on an empty stomach. Such advice is potentially harming. Sure, you might absorb 5% more of it if you do it on an empty stomach, but zinc has never been known to be one of the few supplements that should be taken on an empty stomach. The risk of stomach upset by taking it on an empty stomach is simply not worth it.

 

[YippeeKi YOW !!]

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.

Because playing by the rules is important altho irritating, here's a link to the forum's rules ....

Forum Rules​

https://forums.phoenixrising.me/resources/forum-rules.5/

 

[YippeeKi YOW !!]

Also, cursing is not allowed here.

Not necessarily true. We're all adults, and cursing is part of being a grown-up.

What's not allowed isnt saying " ... son of a bitch ...", it's calling someone a son of a bitch, There's a distinct difference ....

 

[Viala]

Not necessarily true. We're all adults, and cursing is part of being a grown-up.

What's not allowed isnt saying " ... son of a bitch ...", it's calling someone a son of a bitch, There's a distinct difference ....

True and that depends on the context, when used after disagreeing with someone that's forum rule 1. Anyways there is not much cursing here, which is a good thing.

 

[YippeeKi YOW !!]

True and that depends on the context, when used after disagreeing with someone that's forum rule 1. Anyways there is not much cursing here, which is a good thing.

You obviously haven't read many of my posts ...

 

[pamojja]

Also, cursing is not allowed here.

here's a link to the forum's rules..

Times seem to have changed. I remember a time when explaining the forum rules to other members wasn't allowed here. Only by moderators and reporting.

By the way, high dose thiamine and benfotiamine didn't cause remission in my case.

 

[Violeta]

Come on man, what good does this do? Do we need more pessimism in our lives? I am not an idiot, I've been suffering for the better part of 5 years, I know what my body is doing. I know that I haven't experienced some of these positive symptoms in YEARS, and you say it's placebo? Are we not on the same team here? FFS

I didn't know you have to take Zinc without food. I ate it with fatty foods two nights in a row, and believe that is why I am suffering. I took one zinc gummy here midday, and it has calmed the twitching down. I guess I need to learn a lot more about when to take various vitamins.

And as for the "the better test for b1 is transketolase in erythrozytes.", my doctor says she doesn't have that available. That seems weird?

Transketolase test for B1 is no longer available in the US, which is unfortunate.

I am glad to hear the zinc gummy calmed down the twitching.

Also, yesterday I read a study that related thiamine deficiency to liver failure. I hadn't known that.
Here's the study. It got me looking into ammonia issues, too.

I don't think one must be at the point of liver "failure" to be experiencing the symptoms on at least some level.
I do take thiamine, but I don't think I'm taking enough yet.


https://pubmed.ncbi.nlm.nih.gov/190...re,to increased brain ammonia concentrations.

Thiamine deficiency-related brain dysfunction in chronic liver failure

Chronic liver failure also leads to increased brain ammonia concentrations. Both ammonia and thiamine deficiency result in decreased activity of alpha-ketoglutarate dehydrogenase, a rate-limiting tricarboxylic acid cycle enzyme.

Loss of enzyme activity results in a mitochondrial oxidative deficit in brain and consequent increases in brain lactate, oxidative/nitrosative stress, cellular energy impairment and release of proinflammatory cytokines, all of which have been described in brain in end-stage chronic liver failure.

Synergistic effects of ammonia exposure and thiamine deficiency could explain the diencephalic and cerebellar symptomatology described in patients with "hepatic encephalopathy". Unsuspected brain lesions due to thiamine deficiency could explain the incomplete resolution of neuropsychiatric symptoms following the use of ammonia-lowering agents or liver transplantation in patients with end-stage chronic liver failure. These findings underscore the need for prompt, effective thiamine supplementation in all patients with chronic liver failure.