Doc Costantini's recommend: “For your situation 1 intramuscular injection twice a week (or an oral dose of 4 grams each day, two tablets in the morning and two at lunch time) should bring to the complete regression of the symptoms in 1 or 2 months.”
Next week exclusive of other forms of B1 I will start/follow Doc Costantini's recommend: 2 x day (4 tablets am and pm) Solgar Vitamin B1 (as thiamin HCI) 500mg
Below are the results for each patient following 20 days of high-dose thiamine therapy:
• Patient 1: 71.3% reduction in fatigue; 80% reduction in pain.
• Patient 2: 37% reduction in fatigue; 50% reduction in pain.
• Patient 3: 60.7% reduction in fatigue; 60% reduction in pain.
Wanting to know more, I contacted the lead author, Dr. Antonio Costantini. I learned that in addition to the fibromyalgia study, the same group of researchers had also been studying the use of high-dose thiamine (also known as vitamin B-1) for several other diseases in which fatigue was a significant factor (including ME/CFS) – all with similarly impressive results.
Thiamine is considered safe and nontoxic, even at high doses. Few side effects have been reported. Although no side effects were seen in the fibromyalgia study, a few people in other high-dose thiamine studies did report side effects like insomnia and tachycardia.
A Personal Experiment with High-Dose Thiamine:
Once I was convinced that thiamine would be relatively safe for me to try, I decided to follow the basic protocol used in the fibromyalgia study. Those patients started at 600 mg/day and increased the dosage by 300 mg every three days until they reached a therapeutic dose. (It can take up to 48 hours to experience the effects from an increased dose of thiamine.)
The first patient reported dramatic improvement at 600 mg. The other two did not experience any changes until they reached a dose of 1500 mg. The final therapeutic dose for both was 1800 mg, at which time they reported an abrupt improvement.
Since I couldn't find thiamine in 300 mg tablets, I worked in 500 mg increments. Within 24 hours of taking my first 1500 mg dose, I noticed a huge increase in my energy level. I then tried taking 2000 mg to see if it made even more of a difference, but I actually felt a little worse, so I dropped back to 1500 mg/day and have remained there ever since.
I can honestly say that my energy level now is much, much better than it has been in 24 years!
By the third day after starting the 1500 mg dose, I almost bounced from one activity to another and kept thinking, “I feel so good! What can I do next?”
While I can't say I've also experienced the same reduction in pain as the study participants, I'm hopeful that will come in time. But even if it doesn't, I'm thrilled with my increased energy! It's a lot easier to cope with pain when you have the energy to move around and be more active.
"Generally, the minimal starting dose used in the treatment of several neurodegenerative diseases is a 100 mg injection twice a week or 4 grams each day taken by mouth. If in time these doses were eccessive for that patient, it would happen that, after an initial improvement, he would start noticing a certain effectiveness of the therapy and then the recurrence of the symptoms previously regressed… You can also observe palpitations, tachycardia, increased anxiety, irritability, insomnia. In this case, we can suspend the therapy for a few days and agree with the prescriber about the reduction strength of the drug taken (my phone number: +39 3385682926, my email address: carapetata@libero.it, my professional study number: +39 0761304260) We usually halve the dose.
Over the past 5 years, we have also treated at higher doses approximately 2000 patients, of which 1500 suffering from Parkinson’s disease. We have never observed the slightest betrayal of the common laboratory tests or no clinical signs of suffering. We detected two cases of urticaria, two of generalized itching. In one case we had to stop the treatment because it was causing vomiting at each administration."
In studies of Alzheimer's disease, subjects were treated with 1000 mg of oral thiamine hydrochloride three times a day for 2 to 12 months without any reports of adverse effects [7,25,26]. In a separate experiment, subjects were titrated up to 8000 mg per day over a 1-year period. The only side effects reported were nausea and indigestion in 2 subjects when they reached 7000 and 7500 mg per day [7]. There have been several clinical trials of thiamine derivatives for a variety of disorders that used doses between 300 and 900 mg per day in divided doses for periods up to 3 months. No side effects were reported in these studies [2,27-29].
Your BBB impression is akin to mine from perusing many of the thiamine studies by Costantini and colleagues. Did they change their position regarding B1hcl into the brain? Perhaps I missed something?
Please forgive my insistance, but perhaps you could ask him why HCL instead of a lipid soluble form? Anyway, I look forward to hearing about your experience with this. I've been taking Allithiamine.
I was taking mega-benfo 250 plus alli 50mg when communicating my success to Doc he sent response. I need to go to my PC to send copy to. you
• in reply to
I have read where he will start with 2g, one X day. After he read my ("situation")thiamin dose was presently high and successful, I think that is why he instructed me:
11/19/2017 "
Dear Roy,
Sorry for my late, but unfortunately I can not speak English well, so it's Dr Erika Trevi who is writing these emails to you.
We don't use benfothiamine because previous trials report it does not enter in the neural cells, that's why it is not used for the diseases which don't affect the Central Nervous System (Bettendorff L.). We administer thiamine cloridrate. For your situation 1 intramuscular injection twice a week (or an oral dose of 4 grams each day, two tablets in the morning and two at lunch time) should bring to the complete regression of the symptoms in 1 or 2 months. As an attached link, you'll find a paper with the possible thiamine side effects.
In another email, I'll send you all my published studies.
Best regards,
Antonio Costantini"
His reports suggest he has presented even higher doses. With a patient not showing sustained improvement, he cuts their dose in half.
So clarify for me, you are now taking 500 mg or 5000 mg a day? Do you think it can all be taken once a day? Looks like bererva is just another name for thiamine hcl
In one week exclusive of other forms of B1 I will start/follow Doc Costantini's recommend: 2 x day (4 tablets am 2g and 4 tablets pm 2g) Solgar Vitamin B1 (as thiamin HCI) 500mg
"Dear Iqbal, in the experiment we used thiamine hydrochloride.
Thiamine administered intramuscularly is 100-140 times stronger than the equivalent oral dose, depending on the personal patient's absorption. So, for example, to have the clinical effect of 1 im injection once a week, we have to administer 2 grs orally each day for 7 subsequent days.
So aside from some random doctor espousing his miracle cure are there any studies in animals or humans that show some sort of efficacy in treating Parkinson's with B1. What is the theory here? How does this work? What is the science behind the hype, and I'm not talking about email exchanges or anecdotal stories of patients. I'm asking for scientific peer reviewed studies that help me understand how thiamine helps a neurological disorder.
Currently just recommendations. There isn't any study of oral Thiamine HCL administration for Parkinson's, neither studies with control groups, nor peer reviews; which typical for many supplements under research. Other than Dr Costantini studies , other team has yet to replicate these findings .
"After the first month, nine patients, in order to further improve their clinical performances, increased the daily amount of thiamine and levodopa, or started the treatment with levodopa in association with thiamine"
If it was a cure it should be the exact opposite though: patients should decrease the daily amount of levodopa intake or keep it the same, but not increase it in order to improve any positive effects. For Example in a CDP Choline study with 85 PD patients ncbi.nlm.nih.gov/pubmed/228... Parkinson's patients showed increased improvements in certain aspects of the disease when they took half of the levodopa dose.
Thiamine is definitely not the cure but possibly a means to control the disease paired with levodopa and other drugs for Parkinson's.
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