Since 2011, a team of Italian Researchers guided by Dr. Antonio Costantini has devised a therapy for the clinical treatment of symptoms of neurodegenerative diseases such as Parkinson's Disease.
To date more than 2,500 patients have benefited from this therapy and their feedback has been incredibly encouraging for the future perspectives of the research against these diseases.
In order to be accessible to every patient in the world, the High Dose Thiamine protocol requires approval from the various international Drug Administrations. A multi-location randominzed double-blind placebo-controlled trial covering a representative number of patients and spanning over the relevant time frame is necessary for informing scientifically and with statistical significance on the effectiveness of the therapy, understand and describe its mechanisms and potentially further improve its efficacy and thus obtain the authorization to become a standard therapy.
To this end we have started a GoFundMe campaign to support this endeavor with the goal to raise the necessary amount of funds to finally mainstream and prove the High Dose Thiamine therapy.
Goodmorning Roy Does anyone have any idea as to whether or not HDT works "only" if you are taking Carbidopa Levodopa and do those that are not taking CLhave any results that make this high dosing worth it? How much time is required approximately before one can see or experience some evidence that this works?
C/L does work early in the diagnosis. Doc Costantini prefers C/L work hand in hand with B1.Signs of improvement can come in the first day or week. Four months TRACKING improvement
FIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.
I am just wondering whether HDT is acting as a catalystin people that are using C/L and that if that is the case is there anyone who has taken it HDT without the C?L and what were their results? I think that I have an answer from Art as I just now have read #53 thank you for engaging me
HDT/B1 can work on its own in early stage disease, but not so much on later stage. Dr. Costantini was clear on this point as he said in order to get the best response in improving motor symptoms, he recommended using both C/L and B1. In some cases, the addition of B1 to C/L resulted in being able to lower the C/L dose according to Dr.C and forum members who were able to do so. HDT seems to have synergy with C/L and is fairly well tolerated by most who have chosen to test and use it. HDT is compatible with PD meds and HDT seems to work similarly with Mucuna Pruriens as it does with C/L as reported by forum members.
Here is a link to the HDT FAQ page. Look at Q&A # 53 :
It is a good idea to keep in mind that when I originally submitted the FAQ questions to Dr. Costantini, his answers were based on his experience up to that time with HDT and that was 5 to 6 years of experience. Had he lived and continued to treat patients with HDT, his answers might have changed as he continued to learn about the use of HDT in PwP. Based on Roy's experience over time, I would say that HDT does not stop disease progression, at least not in everybody, if it does, but it may slow it, since it lowers neuroinflammation, a driving force in PD.
Art, THANKS AGAIN FOR THE INFORMATIONI JUST STARTED THE PROTOCOL and therefore was concerned about what to expect. Dr C is a great influence for me at this point; and unfortunately he passed away,,thank god for your faq's they provide
tremendous base of knowledge - how about dr C's assistant Marco? He must have a wealth of information as well having been there all along....can anybody access Marco?
What I found with Dr. Marco Colangeli, who was a friend of Dr. Costantini, is that he was definitely for pushing research into HDT forward, but he is simply very busy with his own work life and does not really have the time to take over where Dr. Costantini left off. I think Dr. Costantini was truly a very rare and caring neurologist and am doubtful we will ever see another like him. He was offering his free email support to anyone that asked. I have not heard of another neurologist or doctor who would do that!
Here is a link to the information that Dr. Costantini left with the forum :
There was another neurologist in Italy who was offering email consultations on HDT/B1, but he required your first visit to be in his office in Italy, but I have never heard that anyone ever took him up on his offer. I believe his name was Dr. Fancellu, but I am not certain???
Yes, that is correct, but I think JBOVERT was looking for someone to contact for support the way Dr. C used to do by email and I don't think Marco has the time or inclination for that aspect of HDT, or at least he has never expressed a willingness to do that. He has told me multiple times that he is very busy with his regular work.
Art well I took to much of the thiamine to start off with so now I am on the wagon till Sunday the dose will be cut in half and I will see what happens then
I was diagnosed ten years ago. My mistake was and is the same mistake most PwP make. They judge a medicine or lay blame for a reaction to quickly. Often expecting much in a single day. I recommend: “The New Parkinson’s Disease Treatment Book.” J. Eric Ahlskog, PhD, MD, second edition 2015
Hey Roy, You are so right about this… We are all so anxious to improve our situation. I am no different, though I am Learning to be more patient with new regimens. The Allithiamine however grabbed a hold of me right away. I do understand the balance of electrolytes, glutathione, and methylation, but to a point…. I saw another website that you have Come along way since 2012. I am 2010 diagnosed, but it’s getting harder and harder to play the “ON” game. Does the book you mentioned above address thiamine supplementation?
"In order to be accessible to every patient in the world, the High Dose Thiamine protocol requires approval from the various international Drug Administrations. "
Is this accurate? Is that actually required? Will a successful trial result, either directly or indirectly, in approval from 'the various International Drug Administrations"?
Its best to be rather cautious about what you say when you are soliciting donations for a cause, no matter how noble you may consider it.
I think if MJFF didn't want to fund or contribute funding to research into HDT/PD, it is very highly unlikely that anyone else will. A study design would be almost impossible since the dose of B1 required varies so much from person to person. On this forum alone, the effective dose reported by users of HDT ranges from 25 mg to 4,000 mg/day and it seems there is not a practical way to work around that obstacle. Body weight and severity of symptoms are not enough to narrow that dosage range enough to make a study practical in terms of intervention dosage.
I think what you are doing Roy, by trying to spread the word about HDT is going to be more useful than trying to put together a study design that will actually show what HDT can do in PwP and other neurodegenerative diseases, because PwP who would try HDT will do it if they become aware of it and I think this forum exemplifies that point well. I believe the information contained on this forum, Dr. Costantini's website and your FB page, tells more about HDT than any single study ever could and the former three options are free! This forum alone has over 18,800 members and is a prime target audience of PwPs who have seen how B1 has benefited many and have also seen all aspects of fine tuning the dose, making it easier should they ever decide to test it themselves!
Art, I believe, but could be wrong the main reason that MJFF did not fund is because the dosage varies so much from person to person as you mentioned. As I recall they basically said, try it if helps, take it.
Yes and I believe that is pretty much the case based on the established safety profile of B1 at the dosages required for PwP. Test it if you feel the need based on the safety profile. It is inexpensive and readily available.
Considering all of the "flavors of the month" that have passed through this forum over the years. B1/HDT, Mucuna Pruriens, Mannitol, exercise and possibly a few others have stuck around, also suggesting they have value for PwP. Ibogaine might have made the list, but scarcity of suppliers and cost might be the detractions along with lack of many testers. I think someone previously tried to list these useful options, but it gets lost so easily on this forum.
Agreed on all points. Thanks Art. By the way the most effective supplement I’ve taken to date as advised by Dr Mischley is CDP CHOLINE. (Taken with (C/Ldosage).
I believe it makes the C/L more effective. Not enough to possibly reduce my present dosage as Dr Mischley mentions, but reduces off time and effects tremors in a positive way.
That is pretty much what I would guess that berberine might do for PwP, reduce off time and possibly stretch out the dosing schedule of C/L aside from its positive effects on diabetes. I wish there were more members testing or taking CDP Choline as that is certainly a benefit worth having and then it would easily apply to the list of most beneficial supplements and alternatives for PwP.
Hi Art, I take CDP Choline. It is recommended by Dr. Dale Bredeson for ALZ. I’m not on meds but I believe it has reduced my brain fog. Do you have thoughts on L-Taurine? I take that as well but not as consistently bc I’m taking so much.
Taurine is thought to have a calming effect and it crosses the blood brain barrier which definitely puts it in the right place. Taurine is thought to have antiinflammatory effects in the brain and inhibits the inflammatory chemokine IL-8 which is important for PwP as is taurine's neuroprotective effects. One way to add taurine to your regimen if you are already taking magnesium as PwPs should, would be to switch to magnesium taurate which also crosses the BBB and both are IL-8 inhibitors. Inflammation reduction is useful.
Art, based on the info in these posts, would you therefore recommend PWP take magnesium taurate instead of taking both L-taurine and magnesium L-threonate? I had not heard of magnesium taurate.
Thank you for telling us about it.
There appears to be evidence that Ibogaine can slow progression and the micro dose required looks to be safe from what I’ve read thus far but sourcing it is nearly impossible. Is it a dead end I should give up on or do you think it is a possibility worth pursuing?
Forum member, danfitz is the one who has been using it for months now and your questions regarding ibogaine may be better asked of him. Last I heard he is still happy with it and is still using it.
What I think might be doable is using a magnesium product called "MagEnhance" which contains magnesium l threonate/Magtein, Magnesium Taurate and MagnesiumGlycinate, three useful forms of magnesium that do not promote diarrhea. Here is a link:
>>> ' Citicoline is the ingredient name for a compound that’s chemically identical to cytidine-diphosphocholine (CDP-choline). The only difference is that CDP-choline is naturally occurring in humans, and citicoline is the form found in nutritional supplements.
CDP-choline is a nucleotide composed of choline, cytosine, ribose, and pyrophosphate. ' <<<
Based on that information, the following newer systematic review of studies (January/2021 ) came up that discusses the benefits of Citicoline in PwP and though it is only a brief abstract, it says a mouthful. Here is a link to the review abstract which I would describe as worth reading by anyone with PD!
>>> 'Despite the varied outcome tools, this review found that patients with PD who were taking citicoline had significant improvement in rigidity, akinesia, tremor, handwriting, and speech. Citicoline allowed effective reduction of levodopa by up to 50%. Significant improvement in cognitive status evaluation was also noted with citicoline adjunctive therapy. ' <<<
I will look into this further, but anyone with PD should do the same, imo!
I was wondering if you could share what dose of Citicoline you are using? The effective dosing range seems to be 500 mg to 1,000 mg with a couple of studies as high as 2,000 mg. Thank you!
The other factor is that it is available and does not require any investment to make it available in any market in the world. FDA and EMA authorisations are marketing authorisations. If the substance passes the tests it is permitted to use the substance for the licensed purpose. HDT requires no authorisation. Along with the claim that HDT stops progression of the disease that is another apparent error in the HDT website linked to in this post.
On the links that I put up, I originally wrote those back when I was known as "easilly" . When I switched to "chartist" I no longer have access to update those posts, so the parts about stopping disease progression, I can't change. That information was given by Dr. Costantini based on the data from his patients in his office in Italy, but was only based on 5 to 6 years of experience that he had at the time. Roy's experience suggests that "HDT does not stop disease progression", but there is not a lot of reports on that aspect of HDT on this forum. If you are a responder to HDT and getting good benefit in terms of symptom relief, I think those people will continue taking B1, even if B1 doesn't stop disease progression.
ArtI was referring to the claim on the Italian website
"Continuing the therapy, the neurons might stay healthy regardless of the existence of PD. Thus, in addition to a rapid improvement of the symptoms we observe also a freezing of the evolution of the disease."
I don't dispute that doesn't negate the benefits of the symptomatic relief others experience
I understand now. It gets difficult now that Dr. C is gone and there are no more treatment updates. It does make me wonder though if the injections offer something that the oral dosing doesn't because the majority of his patients in Italy used the injections and there he reported no disease progression in those patients for the 5 to 6 years that he treated them?
If i were these other guys i would be trying to figure out and report on the status of a portion (as large a portion as they can) of the 2,500 patients. Its been a good while now and if their progression is still frozen, then that would be big news.
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