Question about Thiamine

[PixelPaul]

I've read with great interest the many posts about using Thiamine as a PD treatment. I'm new to PD, so I'm not sure if this is a newer treatment or has it been around for a while? It seems many are experiencing positive results in symptom relief. I'm curious however about the long term effectiveness of high-dosage Thiamine use. Is there anything to suggest that this will continue be effective over a period of years?. Does it provide just symptom relief, or is there anything to suggest that high dose Thiamine might also slow progression of the disease?

[Hidden]

Right on all accounts. It is obvious you have done your homework.

[Pleblanc]

I'm unable to find any documentation suggesting that thiamine treatment can slow progression?

[Hidden in reply to Pleblanc]

Replied by Art (California ) on 07/24/2017

In reply to Mary M. (Arcadia, Ca),

Hi Mary,

One group was in California and the other was in Italy. Both groups came to the conclusion that their specific treatment, not only halted disease progression in PD patients, but actually reversed motor and non-motor symptoms! I know that is a heck of a claim for PD and so it made me want to contact either of these two groups to find out if they were accepting patients.

I tried to contact the California group first since that seemed to be a simple thing to do, but I was told that the neurologist who was the lead researcher for his group, had passed away and none of the other researchers from his group were continuing the research so it essentially died with him.

Failing that I decided I would try and contact the research group in Italy by email. To my surprise, the lead research neurologist contacted me and sent me three clinical research studies that he had done over the past 5 or 6 years. I told him about my friends with PD and he told me it would be ideal if they could come to Italy to his clinic, but he said that 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.

Only one of my friends decided to try this doctor's protocol, but the first problem he ran into was that none of his doctors were willing to give the twice weekly injections and he even checked in Mexico to see if he could get them done there, but he didn't have any luck there either. At that point, I wrote the doctor again and asked him if it would be possible to take the supplement by topically applying it to the skin with DMSO? He wrote back and said there was no need to go through the inconvenience of having to apply the supplement with DMSO, as my friend could just take a very high dose of the vitamin supplement on a daily basis and while he said it might not work as well as the injections, it would probably halt the disease progression and likely reverse some of the symptoms. He told me he had treated several of his PD patients who were opposed to twice weekly injections with this oral method and he said it worked very well for them.

[Hidden]

Mainly, results are based on Dr. Costantini's clinical experience with his patients in Italy of which they have treated over 2,500 patients with apparently very good success. You can also see by replies on this forum that some PWPs here are also having significant symptom improvement using the oral protocol.

You are asking about the longevity and durability of the treatment. As far as I am aware, Dr. Costantini started treating some of his patients with thiamine intramuscular injections around 2011~2012 and these patients improved, in terms of both motor and non-motor symptoms and the effects have been lasting to the current time and in a much larger patient base now. He claims that the treatment not only reduces symptoms when used in conjunction with Levodopa, but that the combination actually halts the disease progression, which with current PD meds is not possible. Part of the reason that he feels this is the case is because when any of his patients have temporarily stopped thiamine treatment for various reasons, the symptoms slowly return, but not to a point that is worse than the symptoms of when they first started thiamine treatment. You may wonder how he can compare where they are today to where they were when they first started thiamine treatment, and he does this using video clips of each patient at each visit along with performing U.P.D.R.S. testing of the patients.

If you are looking for double blind, placebo controlled studies to prove or disprove the anecdotal evidence, you will have to wait until such testing is done, but that testing may never come as the expense involved in such studies is cost prohibitive and would require the potential for significant profit for whoever does such a study. Given that thiamine is not a patentable molecule, there is no monetary incentive for a well funded company to take on such an effort. Pharmaceutical companies are like any other company, in business to make money.

What some people have decided to do on their own, given the fairly good safety profile of thiamine and Dr. Costantini's apparent success with his numerous patients, is to try the high dose oral or intramuscular injections on their own and apparently to good effect in some. For these patients, they are willing to risk any potential downside to high dose thiamine for the potential benefit of improved PD symptoms and possible arrest of disease progression.

If you are looking for experience longer than 5 or 6 years, there is none that I am aware of.

Art

[PixelPaul in reply to Hidden]

Thank you Art, your post was very helpful.

[Hidden]

I forgot to mention, given your situation of being new to PD, that it is Dr. Costantini's experience that patients who start thiamine therapy relatively early in the disease process have been some of the best responders and in some cases are able to use thiamine as their only treatment.

Art

[Despe in reply to Hidden]

Art, what about patients who are still meds free? Would B1 improve their symptoms? My husband has RH tremor still intermittently and occasionally RF tremor. His posture is a little stooped, too.

I did order MP and should be getting it tonight or tomorrow. Thank you!

[Hidden in reply to Despe]

According to Dr. Costantini, I believe this would fall into that category of relatively newly diagnosed or relatively short duration of disease and these seem to be the PWPs who stand to have the best chance of using thiamine solo......sans prescription meds. I think there are many PWPs who would like to be in that enviable position! On the other hand, barring other health complications, Dr, Costantini says that for the most part, it is the thiamine and Levodopa that are quite efficacious at reducing motor and non- motor symptoms, so either way, it seems like your husband is in a relatively good place in terms of his protocol and PD, thanks to you!

Art

[Despe in reply to Hidden]

Thank you, Art! Always informative, encouraging, and willing to help, and then some!!

[grandmama16 in reply to Hidden]

I'm jumping in here with a simple question...how much Thiamin? M.A. in USA

[Gioc in reply to grandmama16]

simple answer write dr Costantini. read and study the post about Thiamine Hcl because a few knowledge is necessary about it use . ( write to dr C. in italian and english).

healthunlocked.com/parkinso...

[Hidden in reply to grandmama16]

The simple answer is that the dose varies based on several factors that Dr. Costantini considers with each patient and the dose may need to be adjusted depending on how you react to it.

The post that GioCas linked to will be helpful as will these posts below. After reading these posts, you will know what information you will need when you contact Dr. Costantini and you will have a very good idea of reasonable expectations on Dr. Costantini's thiamine protocol.

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

Art