Who is taking Thiamine HCL and who is taking Allithiamine? What dose? I chose to use Thiamine HCL and believe it provided better results.
From documents received by Roy direct from Dr Costantini, a neurologist
"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: email@example.com, 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."
Replied by Art (California ) on 07/24/2017
In reply to Mary M. (Arcadia, Ca),
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.
Armed with all of this information, one of my friends decided he wanted to give it a try and so he first ordered the supplement in a pure bulk powder form with no additives. He started on the protocol that the doctor set out for him. He was a bit hit and miss at first, because he started to feel improvement in the first week and he started slacking off on his dosing which soon had him feeling bad again. I should mention here that the first symptom that improved for him was anxiety. He said this anxiety made him feel bad everday of his life and within two weeks of taking his supplement mixed in Gatorade, his anxiety level dropped way down to where he felt pretty comfortable again.
In any case, my friend started on this supplement last November and is still taking it because he simply says he feels better with it and without it he could tell that his PD was definitely progressing at a fairly quick pace whereas now he does not feel that his PD is progressing and some of his symptoms are better.......including the anxiety.
One of the reasons that I felt my friend would slack off on taking his supplement was because he has to mix the bulk powder in Gatorade and this is not always convenient, so I found some high dose capsules of this vitamin and he started taking those on a more regular basis than the powder, but recently he told me that he wasn't positive, but he feels like the bulk powder is more effective than the capsules and even though it is a little more trouble to take the bulk powder, he is going to go back to it when he runs out of the capsules. One possible reason that the powder may be working better for him is because it has no fillers of any type while the capsules are gelatin and then there are additives in the capsules for various reasons which may work against the active compound.
Mary, if you want to know more about this, I can find the links for the studies I have seen as well as a couple of YouTube videos that show some of this neurologist's patients before treatment and awhile after treatment. In corresponding with this doctor he told me he has treated over 100 PD cases with this protocol and only had one patient who could not tolerate it as she would throw up right after she got an injection.
Lastly and also of importance, this is not a cure and the patient still needs to take their regular meds. If you stop taking the vitamin, all symptoms return and the disease continues to progress again. Based on what my other friends with PD have told me, their doctors are not open to this whole idea and will definitely "not" do the injections for them. One of my friends took all of the studies I gave him so he could show them to his doctors to see if they would monitor him if he started taking the supplement and they flat out told him no and not only that, they wouldn't even look at the studies........they said they had no time to be reading worthless studies, but they are quite fine with prescribing drugs for him in which they know he will end up a drooling, shaking and demented mess!
Replied by Mama To Many (Tn) on 07/27/2017
Thank you for taking the time to share this information on treating PD. How wonderful!
I too can be skeptical that something as simple as a vitamin could bring "too good to be true" results, but having seen dramatic results with Thiamin with a sheep, I will share it to encourage.
A few years ago we had a newborn lamb that was very sick. My son brought him in from the field because he was behaving in a very disturbing way. He was arching his back and writhing, perhaps he was having seizures. His spine seemed to be moving in a way that you would not expect to see an animal's spine move. It appeared to be something neurological. We quickly began researching and found that a thiamine deficiency in newborn lambs could could a neurological disorder - polioehcephomalacia that would have these sorts of symptoms.
I actually had some thiamine tablets on hand so we crushed them and added them to water and gave it to him orally with a syringe. His symptoms stopped in less than 30 minutes. It was astonishing.
~Mama to Many~
Replied by Art (California ) on 07/28/2017
Since your brother does not want to do prescription meds, but is fine with vitamins and supplements, please look into Mucuna Pruriens (MP) for him. Here is a recent study that suggests low dose MP may be as good or better than prescription levadopa/benserazide which is typically prescribed for people with PD, but MP does not have the dyskinesia side effects that prescription levadopa/benserazide can have in some patients. These side effects can be as bad or worse than PD symptoms.
High dose MP had similar effects as levadopa and was similarly effective with a better safety profile.
There are other studies relating to MP and PD that you can search for.
One point that Dr. Costantini made to me is that if a person let's the disease advance too far before attempting to do something about it, there may be a point where a full recovery may not be obtainable. This is not to say that you can't improve your symptoms if there are too many, just that your chances for best improvement are correlated to earlier treatment. Every patient he treated definitely showed improvement in symptoms, but people he treated early on in the disease process seemed to have a better chance at the best recovery.
As I mentioned, there are many supplements and vitamins that are likely to be useful for people with PD if they are willing to make the effort, but many people only want an easy way and sometimes it takes significant effort on the patients part if they want to try the natural route.
Replied by Art (California ) on 08/03/2017
Hello to all who are interested in Dr. Costantini's vitamin add on protocol for people with Parkinson's Disease. In a recent email from him, he sent me the following link which has almost all of the information that he shares with his patients including studies (3), thiamine dosing, videos of patients before and after treatment as well as time line results and most of it is available in Italian and some of it is also available in English.
You may have to search through the link in order to find all of the information, but it is worth the effort! Here is the link:
In the videos, you can see that his patients are at varying degrees of disease progression and some are in the "severe range" and still show dramatic improvement by just adding thiamine/thiamin/vitamin B-1 to their standard PD prescriptions meds.
In any case it is worth reviewing and or sharing in case you happen to have a loved one or friend with PD who might benefit from adding Dr. Costantini's protocol. It is easy to obtain, relatively inexpensive, apparently quite effective for many people with PD and all with a very impressive safety profile! Pretty hard to beat that!
Replied by Art (California ) on 08/10/2017
The dose my friend used was determined by Dr. Costantini, once he reviewed my friend's medical history. He started him at 4 grams total per day. He started at 2 grams at breakfast and 2 grams at lunch everyday and then Dr. Costantini adjusted his dose after two or three weeks and some feedback from my friend.
Initially he used pure powder form mixed in Gatorade to try and lessen the bitterness. I tried it for awhile myself just to see what it was like to take it. It is bitter, but for me it was easilly tolerable. After sometime, I found 500mg capsules and my friend switched to those to make it easier to take when he was away from home, but even at that dose, it required 8 capsules a day total. More recently my friend told me that he felt the pure powder might be slightly more effective than the capsules, so I asked Dr. Costantini about that and he told me it should be the same whether capsules or pure powder. In any case, my friend said he prefers the pure powder because he feels it is slightly better than the capsules, but he is currently taking both. I imagine one reason the pure powder might be slightly better is since it has no additives or fillers of any type and also your body doesn't have to deal with all of those gelatin capsules.
I hope that Mary from Arcadia California keeps us updated on her brother if he starts. I'm not sure how it will work for him because he doesn't take any Parkinson's medications and according to Dr. Costantini, it is required for the patient to continue to take the Parkinson's prescriptions meds along with the thiamine in order to get the best results, so it will be interesting to see how her brother does.