Dr. Costantini's High Dose Thiamine Recommendations.

[jimcaster]

Many new members seek dosage advice regarding thiamine. For whatever it may be worth, here's information from Dr. Costantini's highdosethiamine.org website:

The correct dose varies on the basis of:

Duration of the disease (the longer is the duration of the disease, the higher will be in general the doses;

Severity of the symptoms and rate of progression of the disease;

Weight and physical characteristics of the patient;

Sensitivity/responsiveness to the treatment.

In order to determine the right dose, we usually stick to the following protocol.

In case of recent onset of the disease in patients whose weight is between 50 to 65 kg (110 – 145 lbs), we begin the therapy with two grams of thiamine per day, before and after lunch.

In case the patient weighs more, the dose can be three grams per day, always divided into two administrations.

Oral thiamine should not be taken with juices or any sour beverage, water only.

[Dap1948]

Dr C was starting people on a much lower dose towards the end and working up. He started me on 500mg. I think he was finding non-Italians needed less and 2gs was too much for many.

[T-Writer in reply to Dap1948]

Hi Dap1948: I can confirm your statements about Dr. Constantini's High-Dose Thiamine therapy. In several of his papers he says people with either "Anglo-Saxon or African background" required a significantly lower dose than the people of Italian descent in his studies.

My background is entirely "Anglo-Saxon" and after reviewing my medical info and videos Dr. C. put my starting dose at 100 mg/day and cautioned it might go even lower. It did: my eventual "right" dose was only 25 mg/day -- an extreme example, but not unprecedented.

REMINDER: There is NO STANDARD DOSE with HDT therapy. It is CUSTOMIZED MEDICINE in which each person's dose must be individually titrated TO THE NEEDS OF THAT PERSON'S BODY.

[jimcaster in reply to T-Writer]

Great reminder! Each person's dose must be individually titrated TO THE NEEDS OF THAT PERSON'S BODY.

[Dap1948 in reply to T-Writer]

I use a sublingual B1 whic,h goes straight into the bloodstream. I'm fine tuning still but am currently taking 60mg a day.

[T-Writer in reply to Dap1948]

I guess we are just the 'more sensitive type' who benefit from smaller amounts and more subtle treatments.

I tried to use sublingual but the non-B1 ingredients made it a no-go for me (chemically sensitive + many allergies).

Glad you can benefit that way, and nice to meet somebody else whose 'high' dose is less than 100 mg. (Well, still high, since RDA for my age & gender is 0.2 mg/day.)

[chartist in reply to Dap1948]

Dap,

Thank you for that update! This means there are at least three members who are getting by on a B-1 dose that is less than 100 mg per day! Important information, thank you for sharing!

Art

[Isotope in reply to T-Writer]

Thanks for sharing your experience. Are you referring to oral supplements or injections?

[ElliotGreen]

"Oral thiamine should not be taken with juices or any sour beverage, water only."

Hmm. I wonder what's happening there?

[LAJ12345 in reply to ElliotGreen]

Weird isn’t it. It looks to be stable in acid conditions:

pubchem.ncbi.nlm.nih.gov/co...

3.2.6Stability/Shelf LifeHelpNew Window

Stable under normal storage conditions; it is degraded in neutral and alkaline solutions (even at room temp)

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 89

from HSDB

Mononitrate is less hygroscopic and hence is more stable than the hydrochloride /Mononitrate and hydrochloride salts/

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 104

from HSDB

Stability is excellent in low pH fruit drinks, eg, losses in drinks are 6% after 12 mo at room temp

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 105

from HSDB

Stability in frozen drink concentrate is excellent

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 105

from HSDB

Light has no effect on thiamine stability during bread storage regardless of type of wrapper

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 99

from HSDB

Canned vegetables and fruits stored for 1 yr at 65 deg F show low losses of thiamine; at 80 deg F losses are 15-25%

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 98

from HSDB

Strongly acid solution which is fairly stable to oxidation and heat and pH > 5 /Hydrochloride/

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 89

from HSDB

Stability of vitamin B1 in dry products is generally excellent

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 105

from HSDB

Degradation during operations requiring heat depends on pH, oxygen content, and other factors

Furia, T.E. (ed.). CRC Handbook of Food Additives. 2nd ed. Cleveland: The Chemical Rubber Co., 1972., p. 105

from HSDB

[Jennyjenny2]

Thanks for posting this Jim.

It’s interesting that the new site for highdosethiamine.org now says ‘2 grams per day, before and after lunch’, compared to when Dr C started my husband off with 1 gram per day, before breakfast and before lunch. This was based on him being aged 60, 68 kgs and 6 feet tall. Do you think the protocol has changed? Do you think this new dose is just for Italians?

[jimcaster in reply to Jennyjenny2]

As Dap1948 indicated, he frequently lowered the dose...As an example, he started me at 3 grams per day and then had me lower it to 1 or 1.5. I'd go with whatever he suggested. 1.5 seems to work well for me.

[chartist in reply to Jennyjenny2]

Jenny,

One important thing to remember about HDT dosing in words that came directly from Dr. Costantini and are still on the "The Thiamine FAQ Page" as question and answer number one. Here is a link to that page of 58 frequently asked questions about HDT / Vitamin B-1 :

healthunlocked.com/parkinso...

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This is question and answer #1 from the HDT FAQ Page and is still relevant and accurate :

1. What is the standard starting dose of thiamine?

A : A “standard dose” of thiamine in our protocol does not exist. The dose that we have been using more frequently in PWP is 4g/day orally (tablets) or 2 injections of thiamine IM of 100mg each twice a week. However the right dose is always tailored to the specific characteristics of the patient: weight, duration of the disease, severity of the symptoms.

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Lastly, it may also be useful for members to know that at least one member has reported benefit from B-1 at a dose that is less than 100 mg per day!

Art

[Jennyjenny2 in reply to chartist]

Thanks Art.

It was more the time the dose was taken that I was questioning. On the new highdosethiamine.org site it says before and after lunch, but Dr C had recommended before breakfast and before lunch, which is what we do. I was just wondering why the site info had changed...all good.

Jen

[chartist in reply to Jennyjenny2]

Jen,

In an email that Dr. Costantini had sent me a long time ago, he once said that his preference would be one dose in the morning with no afternoon or lunch dose, but he never mentioned it again nor did he ask me to change the FAQ page to reflect that sentiment. I think what happened is that with his experience over time, he realized that some people could not tolerate the full daily dose at once.

Keep in mind that many members have reported that the two a day dosing had resolved their constipation issues, so it is possible that a once a day dosing that includes both doses at once may be a bit too much for some and could possibly cause loose stools or diarrhea, but that is just speculation on my part. In any case, he never really pushed for once a day oral dosing.

Art

[Jennyjenny2 in reply to chartist]

Thanks again Art.

It all makes perfect sense.

Some time ago I had promised you that I would document my husband’s journey with B1, then I lost interest. I’m sure you’d like to hear that the interest has been reignited!! And he is doing extremely well. Thank you for that. I will post it shortly.

Jen

[chartist in reply to Jennyjenny2]

Hi, Jen,

I anxiously await that update on your husband!

Art

[Jennyjenny2 in reply to chartist]

Hi Art

Thanks for the reminder.

I was trying to find where to post it, and when I looked at ‘Who is Taking Thiamine HDT & a Brief Summary’ etc, I saw that it hasn’t been used for some time. Would this be correct? Or maybe under another heading?

It was very easy to leave it for another day. So sorry for being slack 🙂

Jen

[chartist in reply to Jennyjenny2]

Jen,

Thank you for remembering and taking the time!

That long thread would probably be the best place. The only problem is that with over 700 posts in it, it is slow loading, but so many people are following that post that it will get the most views in that thread.

Art

[gwendolinej]

Thank you Jim

[Gioc]

HI Jim,

IMHO context can be important! Before considering the doses of b1 in pills you should take a look at the recent history of the evolution of HDT that in the beginning in Italy was almost always treated by Dr. C. with intramuscular injections of b1 with a prescription. Then, and especially to be able to treat cases at a distance, he adopted the pills, which resulted in a considerable variability in doses for obvious reasons of different assimilation. So everything should be contextualized for a better understanding by taking a look at the posts of the last year and a half about HDT. This remains only my opinion and I could be denied, but studying the history of research and discoveries in general, in the right sequence, helps a lot in understanding, I recommend it.

Gio

[jimcaster in reply to Gioc]

I agree. I posted this excerpt from his website just to confirm that there are many variables involved in trying to determine the right dose for a particular person. There is no "therapeutic dose", such as 4 grams, which works for everyone.

[Redginger]

Jim, I see that you have not taken meds since diagnosis, but have been on High Dose Thiamine. My husband, who also has not taken meds, finally tried HDT, took 500 mg twice one day and felt more trembling that evening and stopped. I'm guessing Dr. C is no longer able to help folks like he had been. Is there anyone else I should turn to for help with dosing, or should I just purchase 100 mg and try with those? I saw while reading on here some take 175/day or even, I think one individual takes 25/day. I want to print info about the HDT for hubby to read, but haven't figured out how to find that yet.

[chartist in reply to Redginger]

Redginger,

On the HDT FAQ page this is mentioned in question and answer number 3 :

3. What does it mean if I become jittery after starting thiamine, even at a lower dose?

A: On the basis of our experience, if symptoms like jittery appear at the beginning of the treatment, this may mean that such dose of thiamine is already too high for the needs of the specific patient.

Here is a link to the HDT FAQ page that answers 58 commonly asked questions regarding HDT therapy. All answers are directly from Dr. Costantini :

healthunlocked.com/parkinso...

When HDT first started being discussed and tested on this forum over two years ago, what you are describing was commonly seen and Dr. Costantini would have the forum member stop HDT for three days to a week depending on how severe the symptom worsening was. After the stopped period, he would have his patient restart at half of the offending dose and then see how they did at that dose. Taking notes during the off time from HDT as well as once restarting HDT can be helpful because it is very easy to forget details.

The current effective dosing range for HDT on this forum is from as low as 25 mg/day up to 4,000 mg/day.

Art

[Redginger in reply to chartist]

Thanks so much, Art. I am learning a lot by reading today, the first chance I've gotten to get back to a computer. Next month is my husbands neuro appointment, 6 months since first neuro visit. He's trying something else before the B1 again. I think I might should get caps lower dosage than 500 mg which I first got for him. I hope you have a blessed day!

[jimcaster in reply to Redginger]

Art (Chartist) gave a better answer than I can. Don't give up!

[Redginger in reply to jimcaster]

Thanks, Jim, for the encouragment. For now my husband is trying something else before trying H1 again, but I've learned a lot by reading about this.