Yesterday I wrote to Dr Costantini explaining my situation : age 76, 80 kg, newly diagnosed, mild temor etc. I have just started very low dose of Ropinirole. I asked him about dosage etc. I also explained that I am a retired research chemist with some very modest knowledge in biochemistry and would like to study any papers he suggest relating to the mechanism of action of Thiamine. He replied within the hour on Sunday night !!! This is what he said (Google translation).
Dear Albert, I am very pleased to hear that you have improved. I know little English, but given the perfect translation of google I will answer in Italian and also with some traits in English that contains the general instructions. In the meantime, I recommend this:
Gradually suspend ropinirole the same way you have increased it. it is possible that this suspension will result in a slight decrease in performance, but you must have a little patience. From now on you can do what you will find written later. You need to let me know your reaction to the pull test. The push must be strong I recommend. The suspension of ropinirole is necessary because the right dose of thiamine could make no other treatment necessary. We calculate the right dose beyond the improvement of the symptoms also on the reaction to the pull test. The dose we plan to stop the progression of the disease forever will greatly diminish your symptoms. If there is any small thing left we will make it disappear with small doses of levodopa, which will never cause you the late effects that depend not on the duration of the treatment but on the progression of the disease. So in 10 days you will let me know about the suspension of ropirinol and the result of the pull test and we will see how to adjust.
I am attaching our studies also published on other degenerative diseases. In the bibliography you will find all the references of molecular biochemistry. Below I am writing to you the email address of a site where you can watch videos of our patients subtitled in English.
I have treated all the patients who write to me for free to redistribute in small part the great fortune that fate has granted me
I would like to have your opinion on these writings. For me it would be a great comfort given the almost total indifference of colleagues both to our studies but especially to the sad fate that once awaited patients. I have been treating this pathology for the past six years. In my study in Viterbo I follow about 2,500 patients now numerous from 5, 4 3,2 years. They are all in good health, consistent with the duration of the disease, with no sign of disease progression and without any warning that this may change over time.
If you do not have anything against it, let us get on with you. If I have not been clear, do not hesitate to write
A greeting
Antonio
He also sent me 18 (eighteen) scientific publications, mostly written by him and his team on the use of thiamine on a range of devastating neurological conditions. From the point of view of a scientist, these results are impressive. I have already written back to thank him. The weak point in his work (and this is not a criticism but an observation that he understands very well ) is that his high dose thiamine treatment of Parkinson's only goes back 6 years and the trials he published are on a small number of patients and are not double blind. The strength is that he has treated over 2500 Parkinson patients with thiamine and they are all doing well and that the same treatment works for many other degenerative neuro diseases, so their is a common mechanism. This seems (but is not yet proven) to be the result of long term thiamine deficiency in various parts of the brain. I will try to understand more when I've read all he has sent me.
I would be happy to learn more from any reader who has in-depth knowledge of the metabolism and biological function of amines and especially thiamine in human cells.
Albert
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wriga
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big pharma will not invest $ 1 in research on b1, only governments can do it, but if there is not a push from people I do not know if they will. I read that the Chinese government has shown interest. It's sad but we PwPs always knew that...
Thank you, Albert, for being willing to share your insight on the use of high dose thiamine, especially from a scientific perspective. What I’m about to say is not meant to scare anyone off thiamine, as I myself am using 3g per day in consultation with Dr. Costantini:
A friend of mine was recently diagnosed with prostate cancer and he was advised by his oncologist not to take any vitamin B supplement. Apparently, this is because vitamin B promotes cell growth. Not being a scientist myself, I wonder what you would make of this. To me personally, it is simply a matter of immediate benefits outweighing long-term risks.
Hello Skydome and thanks for this info. I'm trying to find out why thiamine works and this is not going to be quick. It may turn out that if thiamine does prompte cell growth that's maybe why it works to help dopamine celle recover cell function fot PwP. From what I've read so far it is very complementary to LD. I'm currently on 2.5g per day and have no intention of increasing dose. The results are excellent so far, suddenly after 1 month.
As I try to figure out a dose, I'm wondering how this large dose is taken. Do you take this large dose all at once, or break it up with meals. Thank you all for sharing this info!
There is a misunderstanding somewhere. Since this is 4th hand (medical literature ->oncologist-> patient->you) there is no telling where.
The problem is NOT B vitamins in general, but specifically with folic acid / folate / vitamin B9. Multivitamins, most B complexes, and Emergen-C all contain some form of it.
Folic Acid and Risk of Prostate Cancer: Results From a Randomized Clinical Trial
Among the 643 men who were randomly assigned to placebo or supplementation with folic acid, the estimated probability of being diagnosed with prostate cancer over a 10-year period was 9.7% (95% confidence interval [CI] = 6.5% to 14.5%) in the folic acid group and 3.3% (95% CI = 1.7% to 6.4%) in the placebo group (age-adjusted hazard ratio = 2.63, 95% CI = 1.23 to 5.65, Wald test P = .01). In contrast, baseline dietary folate intake and plasma folate in nonmultivitamin users were inversely associated with risk of prostate cancer, although these associations did not attain statistical significance in adjusted analyses.
I asked this question from Dr Costantini in his clinic and also did some researches on how B1 can do all these good things.All had one in common and it was the effects of the Thiamine on cell powerhouse ,the mitochondria.
The example Dr. Costantini used was that B1 acts like battery jump starter. Many of them however believe that the way of B1 action is unknown.
I've had several conversations with ConnieD who asked me about dosing thiamine. I post here excerpts of my reply so that other people more qualified than me can make comments.
I'm still rather new to this subject so I don't have all the answers by far. I'm currently on 2.5 g per day for 80 kg and Dr C didn't comment on that. However I have the impression that Dr C is still researching the best way to calculate the optimum dose. It will no doubt be related to the stage of the disease. Whereas LD treats only the symptoms as I understand it (and this is still very early days for me) thiamine helps damaged cells recover some expression of dopamine. This will clearly take time when Parkinsons has been wrecking its damage for years. So where LD gives rapid results but does nothing to slow progression, if thiamine only stops progression that is already a great victory, but of course you only see the effects as the symptoms NOT getting worse! Dr C thinks thiamine does better than that and helps damaged cells to recover, not only dopamine cells but also other cells that affect non-motor symptoms. Overdosing with thiamine will not speed this up, so you must be patient. Given your weight of about 50 kg, I would not increase the dose but be patient. I am only just diagnosed with mild symptoms and I had good results (that came quite) suddenly after one month. Your case is certainly more advanced and may take many months to get good results since more dopamine cells are damaged.
a video explanatory metaphor on the policy to be applied on the use of thiamine hcl. be calm that the doctor knows what he says (after all he is one of the best experts in the PRATICAL USE OF THIAMINE IN NEURODEGERATIVE DISEASES !!!)
After 4 weeks on 2.5 g per day, I've al ready got excellent results on fatigue and stiffness. Over the next 10 days I will come off ropinirole just to get the baseline result for Thiamine alone. Dr C says there may be some decline in performance since ropinirole or L-dopa are complementary in there action. Wait and see.
Thank you for all the information you provided above. I have been following closely about Dr. Constantini and would appreciate if you could share the research information and link that he provided with English translation about his patients. Also would appreciate his email address. What a kind and generous doctor to communicate with us.
Thank you for your assistance, and welcome your additional feedback on the research once you’ve reviewed it. I am hoping to have my neurologist look at it who is a major researcher.. and will share here if he does.
All of his study links are in this post link. Click on the link and scroll 2/3rds of the way down the post to see all of his studies except his latest one from April of this year which I will add to the others shortly.
Hi there.....been following all your posts, very interesting. My hubby has PD. Please could someone let me know where Dr. Constantini clinic is based and how I would get hold of them. Thanks in advance.
He doesn't read much English. write your letter in English and make a google translation to Italian. This will save him precious time. Dr C is very willing and generous, but we should try to help as afar as we can. He'll reply in Italian, so you'll have to make a reverse translation. Unless of course you speak Italian !!!
He asks several steps you need to accomplish before your first appointment.
GioCas writes:
“if anyone has doubts about Dr. Antonio Costantini, ask yourself what he is doing here among the most illustrious colleagues of the highest level (third from right to bottom in the group photo). I'll tell you: the speaker for the use of thiamine in practice, as he explained in one of his interviews.”
Studio polispecialistico Giovanni Paolo - Via Igino Garbini 25 - 01100 Viterbo (VT)
Tel: +39 0761 304260
Email: carapetata@libero.it
Make appointment for Tuesdays or Thursdays because Dr Trevi who speaks English work with Dr Costantini only on those days
The numbers where you can ask for dr. Costantini are:
- 0039 0761 304260 Polyclinic Giovanni Paolo I ° Viterbo
- 0039 338 5682929 Mobile phone
The most important thing is to take a train that goes to the Viterbo station of Porta Fiorentina and you will be at 200 meters from the hotel and 250 meters from the center of Costantini. From Rome you take a train that goes to Florence, with many tourists, but you have to go down first to Orte or Attigliano and change line to Viterbo station Porta Fiorentina that leaves every hour around. The best routes start in the morning from Roma Termini, so you can change only two trains instead of three. This is what I did, but there are other ways.
Return to Rome very early in the morning with no change. There is also an app of Trenitalia here very usefull.
"...even if they couldn't come to his clinic, he could still try to treat them via email. He said he needed a copy of their medical records and a short video of them talking and a short video of them walking. He said the videos were not for him, but rather for the patient to watch every now and again so they could have a basis for comparison as time passed." art
You stand in a stable position and someone stands behind you and gives you a strong pull backwards on the shoulders. You count how many steps to regain your balance.. According to Dr C if you only take one or no steps back to get your balance you are dosed high enough on thiamine and you could maybe even reduce the dose progressively and do the test again in 3 months. There is a variant pull test where someone gently pulls you back at hip level until you lose balance and then lets you partially fall back or recover by yourself. You should gain balance in one step.
Dr C suggests you film it from the side to keep a record.
I remember Dr. Costantini told me in an email, that he felt one possibility of why thiamine is still effective for people who show a normal level of thiamine is because the transport mechanism involved in getting thiamine to the brain is operating at reduced efficiency for some unknown reason and the addition of high dose thiamine partially makes up for this inefficiency.
Your information and insight on Thiamine and Dr. C are invaluable and enormously appreciated!
My husband was diagnosed in March 2018 by Mayo (Florida). Neurologist didn't recommend/prescribed any medication as he said it's early for meds, maybe 1-2 years down the road. In April, we also made an apt with Functional Medicine (FM), Cleveland Clinic, OH. The FM physician there started a pelvic floor rehab and prescribed vitamins for detox. She also prescribed a NutrEval test and depending on the results, she would prescribe the final protocol to stop the progression as she said. Test results from NutrEval will be mailed to Cleveland approx. June 10 (had it on May 9 and takes 4 weeks).
I am becoming impatient and my dilemma is: shall I wait for the NutrEval test results or shall I contact Dr. C, as I have been reading this forum's patient comments describing Dr. C's success rate with B1.
Another question I have: Is Thiamine CHL the only supplement or could it be taken with other vitamins/supplements?
I suggest you start soonest with Vitacost thiamin HCL, 4g daily. These are easy to swallow capsules. I take other supplements and today started a herb tea, see my earlier post. Dr Costantini recommends you need not take any thing besides thiamin and he highly recommends you continue/start carbidopa levadopa, NOT 1 to 2 years down the road.
Roy, thanks for your advice. I will contact Dr. C. My only objection is the C/L administration. We want to stay meds free as long as possible and continue with alternative medicine.
I will try to counter your objection, which by the way was my decision after I was dx. C/L is vital: 1. Reduce the incident of falling; 2. Support the remaining dopamine producing cells; 3.
Fortunately, no loss of balance or falling. He is in control of his movements, just a little slower than he used to be. We take long walks every other day, but most importantly he is still working. Have not seen any local neurologist yet, only the one at Mayo, Florida.
Today, he had his first physical therapy session, later he will start deep tissue massage.
Lastly, he is just starting to accept his condition as he was in denial and didn't want to talk about it. I was in denial, too, and I couldn't accept it, not any more. It sank in and I have been doing a lot of reading and searching on how to better face the challenge. At times, it seems that I live with a person different than the one I married. It's hard on me physically, and psychologically--feel exhausted.
I completely agree with Roy in principle. Just one practical point - since I think I am at the same stage as your husband except that I no longer work. It may be better to put off C/L until you've filmed your husband's speech and walking and made the pull test. Dr C told me to stop prescription meds until I'd done this just to get the baseline condition. This is where I am now.
Then just read through this discussion again and the the discussion on finding the right dose of thiamine. In my opinion the facts and observations are clear and the logic is irresistible. Thiamine treats the cause of PD and helps preserve and revive surviving dopamine cells but should be started as early as possible. C/L only treats the symptoms and lets the disease progress. You may need both especially since Thiamine takes time to do its work. I now feel that I'm back in control of my life again .
Hello wriga! It's been a long time since you wrote about your progress on B1 therapy protocol. Have you found the right dose? I hope you are doing great!
Have you seen any information on whether using benfotiamine which is a more bioavailable form of thiamin has been used? It is fat soluble so would it build up in the body and would you use less of it?
Albert that would help us all if you can read those research papers and help u derstand things and put them into lay mans langusge. He didn’t mention to us about the pull test. What exactly is that pls??
Most of Dr C ' s papers are about clinical cases where the results of thiamine are quite impressive. He's a clinical neuro not a cell biologist. I'm a research chemist so I've got a lot of distance to cover before I get on top of this. In his papers he talk about a possible mechanism for reviving cells damage through chronic thiamine deficiency and makes references to specialists in cell biochemistry. This gets very complicated but fits in with his clinical observations. You can read about the pull test further up in this thread. There's a short video as well .
The link below will give you all the information you need to know about HDT and Dr. Costantini, the founder of the protocol. It will also answer any questions you might have and includes contact information and much more!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
It's sad but we PwPs always knew that...
Dr. Michael Fossel, Telocyte
Dr Klinghardt protocol for PD
Thiamine as per Dr. Constantini
Contact with Dr Daphne Bryan 
