B1 oral equivalent to the Doc Costantini injection (2x week) is 4g a day, every day of the week for life. That 4g appears to be the Standard set by the Doctor.
Since advising that dose to PwP outside of his country / Italian patients, some have caused Doc to make adjustment. Some bring complaints of sundry side effects and no effects. The doctor is courteous and respectful. He brings them to a lower dose from which he may gradually increase back to the 4g a day standard.
His international patients may be starting from a different attitude to B1 and of the Doc compared to his faithful Italian countrymen. This issues raised may be caused by doubt, suspicion, general disbelief, and not giving B1 more than a couple days to show much improvement.
B1 oral equivalent to the Doc Costantini injection (2x week) is 4g a day, every day of the week. That 4g appears to be the Standard set by the Doctor.
Dr Costantini suggested that anglosaxon people have lower tolerance for the large dose of B1 that other patients can tolerate. My husband has improved impressively once his dose was reduced. I gave him a little more than half the vial yesterday when I injected him and so far so good. We watch for him being unbalanced and freezing and a worsening of symptoms. Hopefully we will be able to increase until he can take the whole vial, but if not he is very much improved on the lesser dose and so we are happy.
I gave every new dose 3 weeks to judge effectiveness, starting out at 4 grams a day. I still ended up at 1 gram a day total with the best effect. On 2 different occasions, I tried 1500 grams a day, and each time ended up with increased tightness on my affected side which made walking much more difficult. I'm doing very well now on the 1 gram daily, with better balance, more flexibility, better use of my hands, more stamina, less mental 'fogginess,' return of arm swing. and relaxed stride. I still have short periods of tremor about 3 1/2 hrs after each dose of carbidopa/levodopa which subsides after about 1/2 hour, I try to take my next dose of C/L an hour after that. My hands are very relaxed when no tremors are present. Believe me, I would not hesitate to take a bigger dose if it improved my symptoms, and maybe some day I may need to if my symptoms get worse. I would not hesitate. I don't know why PWP outside of Italy need a smaller amount, but we are certainly grateful to Dr Costantini for getting the word out to all of us through you, and other members of this forum. As for me, I figure 'If it ain't broke. don't fix it,' IMHO.
Hello Marion, so you are now taking 500 mg twice a day? Could you tell me when do you take it? I read somewhere one needed to take it only with water and at least half hour before eating. Do you know if this is correct? I had to stop taking it as my stiffness was increasing. I was on 1000 mg twice a day. I intend to restart with 500 mg twice a day. Any comments and suggestions will be very much appreciated. Regards. Gio
Hi, just saw your post. I take the first dose about an hour after my first dose of Parkinson's meds in the morning, then take the 2nd dose in the late afternoon, again, at least an hour apart from my regular Parkinson's meds. I usually take my thiamine with a cup of tea. I still seem to be doing fine on the 500 mg 2 times a day.
Thanks so much for your response, Marion. I'm back to 500mg twice a day as well. This seems to work for me better than the 1000mg twice a day. Unfortunately I'm having no luck in getting an answer from Dr. Constantini, I know he must be up to his head with patients! So I am trying on my own to get started and hopefully I will hear from him or his team sometime soon. All the best and thanks again.
try again, because i just contacted dr c. this past sunday, and he responded within the hour. i have never waited more than a day for a reply, and its usually within a few hours. amazing!
Hi jujulini, yes, I have resent my message twice, first one sent at the end of August, and then resent it mid September and this morning. I also checked if the email was correct and it is. My messages are in Italian and English translation below. I guess I just need to be patient. Best wishes.
I don't believe that Dr C has ever stated that an oral dose of 4 grams per day is standard. In fact, in his emails to me he indicates that the proper dose for each patient must be determined:
"The normalization of the patient’s response (to the pull test) tells us the dose of thiamine is the rigth one."
"Soon we will find the right dose that is the one that will only produce benefit and forever."
This question is the first question answered By Dr. Costantini on the thiamine FAQ page! That is why the FAQ page is there so these basic questions can be answered quickly and accurately at the click of your mouse!
A) Nothing in the literature shows or implies that the administration of 200 mg IM /week of thiamine is equivalent to a megadose of 4,000mg /day oral thiamine or a whopping 28,000mg /week, especially for long-term administration, no matter whether the subject is Italian, Japanese, Anglo-Saxon(?) or any other mix or non-mix human subject. Given, the current human studies the above premise is simply incorrect and confusing.
B) Thiamine values and bioavailability are non-linear. Variable factors include: the maximal thiamine concentration Cmax and its time (tmax) in plasma, the area under concentration time curve (AUC), and thiamine excretion
C) Thiamine half-life can reach up to 18 days. Thiamine accumulates in the tissues (yes tissues, as opposed to fat cells, tissues accumulate water soluble compounds, such as thiamine) and a much smaller dosage might be needed in the long term to achieve constant thiamine levels in the blood. Taking a fixed megadose of thiamine over a long period, simply makes no-sense.
D) Bioavailability of Thiamine is variable. Tissue uptake is highly variable across different tissues and different derivatives. Moreover, Thiamine is absorbed through both the active and passive transport, up to 1500mg, therefore the range of the bioavailability of thiamine may be greater than suggested. researchgate.net/publicatio...
E) Oral Thiamine when given over a 1-week period produce blood levels that approach those obtained by intramuscular and intravenous administration.
F) Study A: The group receiving 250mg oral thiamine for 5 days achieved almost identical increase of thiamine diphosphate with the group who received 250 mg parenteral. ncbi.nlm.nih.gov/pubmed/335...
G) Study B: Group (1) given 500 mg thiamine I.M. once a day and Group (2) 250 mg oraly. every 12 h. The times to reach steady state (7 and 5.6 days for Groups 1 and 2, respectively) were not different. ncbi.nlm.nih.gov/pubmed/335...
H) Levodopa treated patients do not present significant lower Thiamine CSF concentration compared to healthy subjects. Therefore the suggestion of low thiamine levels in the PD brains remains unapproved. ncbi.nlm.nih.gov/pubmed/104...
I) Establishing the Safety profile of therapeutic compounds involves long term clinical studies which usually recruit hundreds of patients. Anecdotal reports and short term, non-controlled studies with few patients are out of reference.
J) Based on the published on HU reports, most patients titrate down the initial dose of 2,000-4,000mg thiamine /day, due to reported side effects, as a result of overdosing with thiamine. The topic starter is the only patient I'm aware of that consistently reports substantial benefits over a longer period on thiamine, with a megadose of 4,000mg. That should be 1-2% of current reports
Certainly your knowledge of Thiamine is very thorough easy for you will also lead you to explain what benefits are related to the use of thiamine from an energetic and other point of view, if there is.
By the way this month are three years that I do two injetions about thiamine hcl by 100 ml every week, jumping only for short periods, I'm fine apart the PD.
Glad you doing well. I' m referring to the megadoses of the oral administration of thiamine in comparison to parenteral. It seems you only administer with thiamine injections twice a week. Bioavailability is less of an issue with IV/IM administration and allows for better designed therapies and more predictable outcome.
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Determining the right dose of thiamin HCI
Dosing Information On HDT / B1 / Thiamine HCL / HCI For New Members Considering HDT Including a Link To Some of Dr. Costantini's Info
