VisualDude

Thiamine Cocarboxylase

139 posts in this topic

[Edit 2016.03.24:] Poll added http://hppdonline.com/index.php?/topic/5124-thiamine-cocarboxylase-the-poll/

 

 

 

Over the years have taken various B complex supplements.   But recently tried Thiamine Cocarboxylase (one of several forms of B1) with notable benefit for fatigue.

 

Then ran across this article: The Beneficial Role of Thiamine in Parkinson’s Disease http://www.neurores.org/index.php/neurores/article/viewFile/155/155

 

Am clueless as to why this form seemed more helpful ... and will experiment

 

Aside from HPPD or PD, Thiamine has long been understood to be vital for neurological health.  And its deficiency is detrimental, such as seen in alcoholics.

 

 

But this leads to the question: Has anyone else noticed help from Thiamine (in general) or Thiamine Cocarboxylase?

 

Please share your experiences and thoughts.

 

 

Edit: The source of thiamine cocarboxylase that I am trying is this particular product: Bio-3B-G.  http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf

 

Have tried 100mg of Thiamine mononitrate (very common version sold) but didn't notice it.  However just 3mg of Thiamine Cocarboxylase is helpful.

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It has been 4 weeks on low dose thiamine cocarboxylase.  It started helping in 15 minutes and over the following days and weeks there have been significant improvements:

 

Reduction in daily fatigue
Reduced confusion (during fatigue)
Slow improvement with insomnia (gained a couple hours/night gradually in about 3 weeks)
Reduced anxiety, agitation, and depression … greater emotional stability
Reduced derealization
A sense of relaxed peace a couple hours in the morning that I’ve not felt for 10 years
Reduced muscle spasms/tetany/dystonia
Even and smaller pupils
Relaxed breathing
Relief from persistent Precordial discomfort
Significant improvement in ANS problems including arrhythmias, digestion, heat tolerance, and items listed above
Able to drop one med yet retain much of its benefit
Vision sharper and quicker
 
No negative symptoms ... just feel more alive.  But still need meds  :angry:
 
This sounds crazy for such a simple item but with a little research, one will find these symptoms are consistent with problems caused by thiamine deficiency.  There is so much supporting evidence that I don’t even know where to start.  So will just recap the principles, my condition, and be as brief as possible. [ Disclaimers: Am not a doctor, official medical diagnosis is not HPPD, and am not a stock holder of Biotics Research Corporation. ]
 
Relevant Personal History:  Have tried multi-vitamins and B-complexes whole life.  Have never noticed any benefit or side-effect from B vitamins (with exception of flushing if taking 1000mg of Niacin).  Just took them on the principle of good nutrition.  This link is one product I’ve used on and off in recent years: http://www.bioticsresearch.com/sites/default/files/productlabels/1131-web.pdf.
 
In January a nutritionist suggested trying this product: http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf  Note that it is from the same company and that it is significantly weaker that the other previous B-complex listed.  One pill is 1.5mg Thiamin (B1) instead of 25mg.  [ Twenty five mg is over 16 times the US RDA (the minimum for a healthy person to remain healthy) and typical B-complex supplements are 25-100mg of thiamin. ]  
 
Taking 2 pills of this supplement began helping me in 15 minutes.  How is that possible?  The 1.5mg of Thiamin (B1) is in the uncommon form of cocarboxylase whereas most supplements are not this form.  What is this form?  It is simply the phosphorylated form (what is needed in all living systems). https://en.wikipedia.org/wiki/Thiamine_pyrophosphate
 
 
How could this be valid?  Thiamine deficiency is well known.  The need for thiamine, and the devastating consequences from deficiency to the nervous system (CNS and PNS) and heart is well established.  “Thiamine is a cofactor of several enzymes, including transketolase, pyruvate dehydrogenase, and alpha-ketoglutarate dehydrogenase.  Thiamine deficiency produces a diffuse decrease in cerebral glucose utilization and results in mitochondrial damage… electron microscopy shows disintegrating mitochondria, chromatin clumping, and swelling of degenerating neurons…consistent with excitotoxicity.” - Harrison's Principles of Internal Medicine, 14th Edition (page 2455)
 
The role of Thiamin is so important that a Nobel Prize has been awarded because of it in 1929 http://www.nobelprize.org/educational/medicine/vitamin_b1/eijkman.html
 
Thiamin deficiency is either from malnutrition (such as Beriberi https://en.wikipedia.org/wiki/Beriberi , Alcoholic brain disease https://en.wikipedia.org/wiki/Wernicke%E2%80%93Korsakoff_syndrome or from Bariatric surgery) or from genetic problems (such as Thiamine Responsive Megaloblastic Anemia or Biotin Thiamine Responsive Basal Ganglia Disease).  See http://www.merckmanuals.com/professional/nutritional-disorders/vitamin-deficiency,-dependency,-and-toxicity/thiamin
 
Since B1 was discovered and studied so long ago, there has been limited interest and few studies lately – just take the stuff.  However, recent cases of thiamine deficiency in spite of having normal levels in the blood have caught attention.  Such patients responded immediately to IV thiamine but when studied for genetic disorders, they did not have any of the known disorders – therefore there remains yet to be discovered genetic disorders relating to thiamine.  This is not surprising since genetic research has only begun in recent years. See http://www.ncbi.nlm.nih.gov/pubmed/24607307
 
 
How Common is Thiamine Deficiency?  “Some studies have reported a prevalence of the deficiency in about 10% to 20% of hospital patients.” http://lib.ajaums.ac.ir/booklist/1-s2.0-S0899900714001373-main.pdf
 
Hospitals even carry Banana Bags to treat this  https://en.wikipedia.org/wiki/Banana_bag . Because thiamin is necessary for glucose metabolism, glucose infusions may precipitate or worsen symptoms of deficiency in thiamin-deficient people.  In fact patients have died from not getting thiamine before giving them glucose.  Cells cannot process glucose or ketones without thiamine.
 
 
How is it diagnosed?  There is a specific blood test for erythrocyte transketolase activity https://www.uic.edu/classes/phar/phar332/Clinical_Cases/vitamin%20cases/thiamin/assay_for_thiamin_deficiency2.htm
 
But for the most part it is clinically diagnosed – observe symptoms and watch them start going away once given appropriate amount/type of thiamin.  The good news is that people begin getting better in minutes.  The bad news is that much nerve damage is permanent.  However, if some cases of HPPD do relate to thiamine deficiency (and that is a big if that I am now suggesting), ‘damage’ done should be mostly minor enough to repair.
 
 
Could it be harmful to try?  In industrialized countries, much of the food supply is 'enriched' with vitamins (including B1) so you are already taking some thiamine.  Because of this, many doctors think it is a ridiculous scam to take vitamins and supplements.  
 
By taking a couple pills, the dosage is so low that it normally should do nothing.  But if you have a deficiency then some changes will take place.  Generally speaking, the worst that can happen is that you get your hopes up and waste $20 trying it … but at least it is ‘nutritious’.
 
 
How would one know if thiamine will help them?  You don’t until you try it.  Clues would be if you have non-HPPD symptoms as well, particularly PNS symptoms such as numbness, tingling and/or pain.  If you have low dopamine type symptoms, then you will probably need thiamine since neurodegenerative diseases show need for thiamine.  While another topic, low dopamine problems will involve ANS (Autonomic Nervous System) symptoms.
 
 
What to take?  Since most of us eat fine and even take supplements, if there is a problem it is due to an enzyme problem (note lower right corner of picture at bottom of post ... it will be one of those arrows).  So it would be necessary to take a phosphorylated form (Cocarboxylase, pyrophosphate, ...)  I've only tried the one shown above, so am suggesting that.
 
 
How many will benefit?  Unknown.  It would seem likely that most would not have significant benefit.  But if “10% to 20% of hospital patients” benefit, then perhaps that many HPPDers would as well.  In my case, am already taking dopamine meds ... so perhaps it is just synergetic.
 
 
Well, that is brief while including some of the logic behind it.  Quite frankly, many of us have suffered so long that to hear someone propose taking a simple vitamin is likely to evoke the emotion to punch them in the face.  So consider it anyway (either option).
 
BTW, Beer has B vitamins ...
 
 
 
For those who want homework anyway:
 
Linus Pauling Institute, Micronutrient Information Center, Thiamin http://lpi.oregonstate.edu/mic/vitamins/thiamin
 
map00730.png
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Thiamine and Lifestyle

 

1  Increased Stress increases the need for B1 as well as other nutrients

 

2  Diet is important

 

...A... Foods that don't have thiamine such as white rice.  If these are a major part of one's diet, then thiamine malnutrition can occur

 

...B... Foods that interfere with thiamine absorption.  These include: caffeine, tannic acids, Betel nut, alcohol, shell fish, and raw fish (perhaps Beer isn't the best source of ones B vitamines).  Taking vitamin C helps absorption of thiamine.

 

...C... Excess calories in spite of sufficient nutrition (RDAs) 'dilutes' thiamine.  For example: High calories --> lower thiamine --> Dysautonomia.  "It is suggested that high caloric malnutrition, particularly in the form of simple carbohydrates, is a common cause of defective autonomic control mechanisms in the lower brain that can be likened to the early stages of classic beriberi." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644268/pdf/nem064.pdf

 

3  Medications

 

There is quite a list including antibiotics, diuretics, some heart meds (ironic since low thiamine damages the heart), metformin, estrogens.  Perhaps this is the reason for a few cases of DP/DR and HPPD from antibiotics.  The solution is to increase supplemental B1.  See http://naturaldatabase.therapeuticresearch.com/ce/ceCourse.aspx?pc=08-40

 

 

Effects are additive.  Some cultures have more problems.  For example, the Japanese eat raw fish, shell fish, green tea (caffeine and tannic acid), and eat white rice.  So historically they have had problems with beriberi.  In response they supplement thiamine and have also developed 'synthetic' thiamine (thiamine analogues) such as Fursultiamine.  There are other analogues such as Benfotiamine and Allithiamine (from garlic).  Perhaps a few HPPDers would benefit from these.

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Response to Thiamine Repletion

 

How a person responds depends on how deficient they were.  Basically if one is seriously depleted (such as being taken to ER), there is positive effects in a matter of minutes.  As the days and weeks go by, a person will gradually have improvements until they get as well as they are going to.

 

The less severe the deficiency, the less noticeable the feel of supplementation.  But the days and weeks and months ahead will have subtle improvements.

 

So anyone who chooses to try this, should persist for at least a few weeks ... and after all, if one has bought the bottle, they might as well finish it.  I had response starting in 15 minutes, then other things within a day (sharper, clearer vision with improved depth perception).  Improved sleeping became evident after a week and continues to improve.  For the first week, could feel when needing another dose.  Took 9mg/day (2 pills 3 times) for couple weeks.  Now don't notice if missing a dose and only taking 6mg/day.  Higher doses are not harmful ... one would be more concerned by high amounts of folic acid.

 

LD50

 

Thiamine is not particularly toxic.  If you are a mouse and take Thiamine Cocarboxylase by IV (the hardest hitting method), the LD50 is 360mg/kg.  To translate that to a 150 lb human, you would need to inject 24 grams into your vein.  Intermuscular is 1000mg/kg so that would be about 68 grams into ones buttox.  http://www.lookchem.com/Cocarboxylase/  Oral isn't mentioned - perhaps it is hard to make a mouse swallow that much.

 

A whole bottle of Bio-3B-G is 270mg ... so one would need to swallow 89 bottles at one time to have a 50% chance of death ... if you are a mouse, of course.  And if oral is as IV.

 

Since some members have considered ECT, deep brain stimulation and/or brain surgery, this supplement is a pipsqueak (pun intended)

 

little-pipsqueak.jpg

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Mine just arrived... It has 13mg (in a complex)... Sounds ok?

 

Edit - I just laughed as I realised I had already taken it before asking this question. I am still a drug person, at heart.... If I see a pill in front of me, it just gets swallowed!

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Mine just arrived... It has 13mg (in a complex)... Sounds ok?

 

Edit - I just laughed as I realised I had already taken it before asking this question. I am still a drug person, at heart.... If I see a pill in front of me, it just gets swallowed!

 

Great, let us know if you notice anything in time.  You're hardcore HPPD so who knows.  If 10% of HPPDers benefit, it would be good.

 

Noticed that Source Natural has Cocarboxylase as 25mg sublingual.  Can't vouch for it until I try it, but it may be easier for some to get.  Some standard forms (thiamine or thiamine mononitrate) are 500mg.  At first thought, "Eeeeeckk" (pun intended) but then again I'll take 1000mg niacin to flush from time to time.  Noticed that some brands come up on Google but the fine print on the bottle isn't Cocarboxylase ... sometimes they mention pyruphosphate on the label so Google drags them up ... Benfotiamine pops up too.

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I have the source natural brand... Coenzymate B Complex

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Cocarboxylase form does not exist in My country. Looked everywhere and only find mononitrate and hydrochloride. Bio brand does not ship to sweden from amazon. Have to dig deeper i guess if cocarboxylase is the one to look for.

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Got the natural brand fr.o.m. IHerb. I had an account there and i do not know when that happened :)

Anyway, used the premium shipping but still 1-3 weeks so have to wait for it. Worth it because what works for visual usually works for me

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Ah well. Ordered. Might be a better an other option before deep brain stimulation

 

Simpler to try for sure

 

 

So, im still addicted to coffee, im not planning to quit. Its useless to order some thiamine?

 

All the more need is all.  Read that taking Vitamin C helps counter the absorption block.  Just take it before or in between coffee.  As a side point, it is interesting that many HPPDers have problems with coffee.  You don't which is great.

 

The WHO link has some useful info: http://www.who.int/nutrition/publications/en/thiamine_in_emergencies_eng.pdf

 

See page 32 about anti-thiamine factors.  No need to panic about items listed ... all one needs to do is just take more thiamine and probably it would be helpful that have some point in the day of a couple hours or more where you avoid such things to take the thiamine.  I take some when I get up, and as it take the percolator 25 minutes (wife and I drink very strong coffee), that gives time on empty stomach for absorption.  Also a couple grams Vit C.  This is working fine for me.

 

See page 24 for 'treatment'.  In non-emergency situations it is really a small amount, "daily oral dose of 10 mg thiamine should be given during the first week, followed by 3–5 mg for at least six weeks"

 

People take to the ER need higher doses at that time.  Also those with rare genetic disorders such as TRMA - "corrected with pharmacologic doses of thiamine (vitamin B1) (25-75 mg/day compared to US RDA of 1.5 mg/day)http://www.ncbi.nlm.nih.gov/books/NBK1282/

 

It is noteworthy that they don't even bother with pyrophosphate (cocarboxylase) since most don't have a conversion problem, but rather a dietary deficiency and/or absorption issue.  While it should not be necessary, it significantly stacks the odds in ones favor to try Thiamine Cocarboxylase instead of other forms.  Also, both the Bio-3B-G and Bio-B Complex products contain some biotin as well, so I know biotin deficiency alone isn't directly my problem.  But because some genetic thiamine problems also involve its need (i.e. BBGD), it would be helpful to be sure you get biotin from somewhere if not using the 3B-G.  It is just a matter of stacking the card the most in one's favor.

 

 

On a personal note, really appreciate people trying this.  Been discouraged at times when members don't participate in simple polls or answer questions posed.  Though certainly respect that many are at their limit in dealing with this disorder - anxiety, depression, frustration, anger, attention problems, etc...  So, again, thank you.

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Coffee and the newspaper is my morning routine. I cant say I really feel my hppd flares up. Coffee in the afternoon is a different story, I Will get dped.

Hopefully the thiamine works for us too. I should recieve it tonmorow. They say I should only take 1 a day. You take 6 a day is this the amount when it works? Also I can take this without problems with other meds yes?

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the link you gave doesnt sell to the general public

 

Biotics Research is actually only supposed to be sold by 'professionals'.  But some internet retailers are out there.  It is kind of a pain but it ends up making a better quality product available ... so much stuff is dumped cheap online and at big-box-stores ... but there isn't much truth in labeling.  Then people look at a bottle and say, 'why should I pay $20 when I can pay 10'? ... but many times it isn't the same.  Seen people buy CoQ10 cheap that didn't work ... the real stuff costs a lot.  Recreational drugs aren't the only things cut with junk.

 

 

Coffee and the newspaper is my morning routine. I cant say I really feel my hppd flares up. Coffee in the afternoon is a different story, I Will get dped.

Hopefully the thiamine works for us too. I should recieve it tonmorow. They say I should only take 1 a day. You take 6 a day is this the amount when it works? Also I can take this without problems with other meds yes?

 

Interesting how coffee affects you differently later in the day.  Is it lighting?  (brighter in the afternoon?)

 

If you look at the label closely, you'll see that 'a serving' is 3 pill, lol.  A lot of their products are like that for pediatric/elderly use.  But it also means that 180 pills is 2 months, not 6 months supply. http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf

 

Can't imagine any interaction such low doses would have with meds.  If your talking about the Source Natural product, 25mg would be more than enough.  What meds are you currently on?

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when its morning and its still dark i feel better then when there is light my dp/dr is more on the foreground then, and coffee makes me nervous if i cant do anything but sit infront the computer, i will check my heart beat and such and am creating a panickattack. When i for example go wash my car after a little coffee in the afternoon i wont notice my sensations or my DP.

 

I take cymbalta and 6MG valium. Thiamine works on the liver too, so i think it should be a good addon. 

 

 

 

 

I got this one: http://www.voordeligvitaal.nl/Merken/Product/bio-3b-g-biotics-180tab.html

 

Gebruik:
1 tablet per dag bij de maaltijd ( This means 1 tab a day, do not take more they say.)

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Mine should come in today. Jay do you see any improvements?

 

popped one in. a bit clear headed i notice.. just alittle or its placebo lol

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just got mine in. for me fatigue is overwhelming. any little help would be huge. im fighting off a cold so i might wait a while before i evaluate

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Rational for Trying Thiamine Cocarboxylase

 

1 ... One common but peculiar thing about HPPD is its progression for weeks or even months after drug use.  

2 ... Perhaps even worse is its return/flareup years later after a person had already got it managed or even been symptom free.

3 ... Lastly there are those who develop it without hallucinogens or other recreational drug use at all.

 

On point #3, Dr Abraham comments: "Developing HPPD without ever tripping on acid can also happen, but in my experience this is quite rare, and suggestive of another disorder in the nervous system that needs medical attention." http://amrglobal.powweb.com/hallucinogen-persisting-perception-disorder

 

While there are numerous ideas about the roots of HPPD ranging from plasticity (learned brain 'behavior') to frank neurological damage, and an individual's particular circumstances/conditions are unique, there has to be an underlying genetic 'weakness' and one's general health as factors in this disorder.

 

Again refering the Dr Abraham's (and others) work in this article: http://dana.org/News/Details.aspx?id=43275  Quote: 

A pre-existing condition?

According to John Halpern and Harrison Pope of the Biological Psychiatry Laboratory at Harvard Medical School, writing in Drug and Alcohol Dependence, “there is probably something different in the visual cortex of these individuals that pre-dates use of an hallucinogen.” Abraham agrees, noting that his group “confirmed that there was a peak at around 10 trips, and then there was another peak at around 50 trips, and then sort of a flat plateau afterwards. This trimodal distribution is possibly explained by the distribution of an autosomal recessive gene governing sensitivity to the effects of hallucinogens.”  
:EndQuote
 

[ As a side note about genetics, while they defined how you developed (male/female, height, skin color, etc...), they don't make you 'doomed' but rather 'disposed' to be a certain way.  So don't be afraid of your genes or worried about reading about genetics ] 

 

 

Going back to part of the previous quote: "suggestive of another disorder in the nervous system that needs medical attention", malnutrition can be a cause.  It may seem far fetched but in context, if a person is missing a needed 'ingredient' or cannot absorb enough of it, then the parts of the body (brain) that need it are vulnerable to dysfunction.  Its really no different than asking, can you run a 4 minute mile if you have not eaten for a week?  Thiamine PyroPhosphate (what Cocarboxylase becomes) is vital for glucose metabolism such that any weakness will result in not enough energy for a cell (neuron) to function correctly - see https://en.wikibooks.org/wiki/Structural_Biochemistry/Krebs_Cycle_(Citric_Acid_cycle)

 

Given the citations from medical researchers earlier in this thread indicate thiamine 'malnutrition' is common (>10%) even among the well-fed, and that this causes neurological problems, it is reasonable to give Thiamine Cocarboxylase a try.  Maybe a long-shot, maybe not.  But cheap, safe, and doesn't require a doctor's script.

 

As of this date, March 1, 2016, three individuals report that this specific product has helped them significantly http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf  Not bad for an idea thats only 6 weeks old ... but do not yet know how many others have actually tried it for HPPD.

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