I followed up with Dr A Costantini regarding his following research:
ncbi.nlm.nih.gov/pmc/articl...
He explained as follows:
"we use thiamine hydrocloride intramuscular phials or
tablets taken by mouth. Generally, with the oral therapy we start with
2 grams each day to be taken once a day in the morning, in order to
increase the dose later consequently to the results obtained. The oral
therapy is as effective as the intramuscular one. Some follow-ups of
the results are always necessary"
Allithiamine
administration of high doses of thiamine to patients with PD was effective in reversing the parkinsonian symptoms; we then suppose that the parenteral thiamine supplementation may play an important role in restoring the survivor neurons and in limiting the disease progression, and that the dysfunction of the thiamine-dependent processes could be a primary pathogenic pathway leading to the death of dopaminergic and non-dopaminergic neurons in PD
Hi, do you still feel that you are improving? Thanks Mary
Yes! Most definitely. I have asked those with similar questions to read my Profile. I suspect I reached a plateau. I am considering reducing my allithiamine or maybe increasing it. I try to keep my Profile current. Next change, drop probiotic for one and also list ibuprofen and MiraLAX frequency.
Thanks, I did it for a while I never noticed any kind of an improvement myself. Maybe I'll start it again.
Originally I was taking both benfothiamine and allithiamine. I think most every Parkinson's sufferer will find major improvement from symptoms. NOT everyone is different. But like the Italian doctor says after 20-30 years not so much.
Regular B1 vitamin won't hack it.
would like to add this to my regimine. is thiamine hcl the same as allithiamine? i can buy the powdered thiamine hcl from bulk supplements. currently taking 75 mg of benfotiamine with another supplement.
No to benfothiamine.
Allithiamine is a fat soluble thiamine derivative as opposed to thiamine HCL which is water soluble only. In comparative absorption studies it was shown that allithiamine is absorbed & penetrates the cell membrane far better than thiamine HCL, the usual supplemental form.
Found it online. Should i take it along with fish oil in am
Not necessary in my opinion
raypeatforum.com/community/...
Since most people would not have easy access to thiamine injections, an alternative is oral allithiamine. It achieves the same concentrations (and cellular activity) through oral administration as IV or IM thiamine Hcl. So, oral allithiamine at a dose of just 100mg twice a week should be able to replicate the results of this study.
ncbi.nlm.nih.gov/pubmed/978282
"...Oral administration of lipid-soluble allithiamines [thiamine propyl disulfide (TPD) and thiamine tetrahydrofurfuryl disulfide (TTHF)] rapidly increased thiamine activity in whole blood, red blood cells, cerebrospinal fluid, and urine in normal and thiamine-deficient subjects. These thiamine congeners also restored red blood cell transketolase to normal in alcoholics with thiamine deficiency. Such repletion equaled that produced by parenteral, water-soluble thiamine hydrochloride (THCl) or thiamine pyrophosphate (TPP). Oral administration of water-soluble thiamines (THCl, TPP) neither elevated thiamine activity in biological fluids nor restored transketolase activity to normal in alcoholics with thiamine deficiency presumably due to their rate-limited intestinal transport. Oral administration of TPD eliminated lateral rectus palsy in patients with Wernicke's encephalopathy. Orally administered allithiamine vitamers are therefore recommended for prophylaxis and treatment of thiamine deficits because while having essentially the same biological properties as parenterally administered water-soluble thiamines they have not produced any untoward effects after long-term administration and are far more efficiently utilized."
I just discovered that plain old thiamine Hcl achieves the same bioavailability as the fat-soluble thiamines provided you take it for at least 7 days. So, taking 300mg oral thiamine Hcl for a week will achieve the same blood levels as taking 300mg allithiamine. All thiamines may give you bad smell due to the sulfur they contain. So, use at your own risk but I think it is a small price to pay given the benefits. End Quote
Hi Roy me again . Just got from Doctor oral thaimineHCL 50mg tables for my hubby.
I see you take 300mg it that per day for 7 days or 300 mg twice week.
Our Doctor has put him on 100mg per day.is that enough?
Hi Roy
my husband who has had PD for 3-4 yrs now and is on a small amount of sinemet 1/2 table 3 times over 24 hr period just to keep the carbadopa up for the Zandopa power he is taking . the Zandopa mainly controls his PD. He still gets tight neck most days. His anxiety has increased so we are now in the process of reducing the amount of Zandopa he takes per day to see if that is causing the anxiety having too much levadopa in his system.
Any way my question is can thiamine be taken with Zandopa Mucuna?
We are farmers and yes we use Thiamine to help livestock with neurolgical problems and yes it has amazing results so when I read your blog I connected with that and would love to see if it will help my husband.
What I have read, Doc advises thiamin users to continue with their meds.
What I have read too much levadopa in his system may be the case when using MP and C/L. Where you are using small amount of C/L, may not be a problem but I am not a doctor.
Thanks. Can you use the thiamine with Mucuna? should I ask the Italian Doctor Direct.
in Italian language: His (my phone number: +39 3385682926, my email address: carapetata@libero.it, my professional study number: +39 0761304260)
in English language: physiotherapist Dr Erika Trevi
erikatrevi@alice.it
thank you. im in new zealand we have to rely on oversea studies to find this info.
Dr Erika Trevi is that you or the Doctor who did the study
Correspondence to (researcher)
Dr Antonio Costantini, carapetata@libero.it
I sent my regimen to Dr Costantini and Received reply in Italian lang on 11/18/2017.
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.
Dr Erika Trevi
erikatrevi@alice.it
"I sent my regimen to Dr Costantini" I sent as introduction my regimen / current at the time and the results I experienced as validation of his studies that I recently read about, my initial choice allithiamin and mega-benfothiamin. See my Profile to read the results of thiamin treatment.
How about tumeric or curcumin for pain? Ibuprofin is dangerous. How about magnesium for constipation. It works for my husband.
Started allithiamine.2 tabs am and pm 2xwk. Can see much improvement. Taking 1/2 sinimet with mucuna every am and mucuna in pm. Hope its not placebo
Why are you taking such a high dose of the allithiamime? Didn’t it say 100mg 2times a week? But you take it 3times a day? I’d like to try but that seems like a high dose
100mg was the injectable. I choose oral B1. The dose was my decision based on reading.
Roy, Constantini suggests 2 grams daily but you take 300 mg? Why?
The doctor does not know English. I suspect a typo or translation error
I too have doubt on the dose mentioned by him. I am trying to find his telephone number for asking the exact dose and type of thiamine. Will let you know when found
I can send you Dr Antonio Costantini assistant email address.She normally replies to the emails within 24 hours.
Let me know please.
yes please, message me
I sent it to you
Hi Kia 17. Would there be any chance of you forwarding on dr. Antonio secretar email add. Trying to get in contact with him, My wife has Msa (Parkinson's Plus)am trying to find some way to get help. Thanks Peter
Dr Antonio Costantini, carapetata@libero.it
Thanks very much Roy
From doc received by Roy direct from Dr Costantini
copy
"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."
Other:
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.
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!
Art
Replied by Mama To Many (Tn) on 07/27/2017
Dear Art,
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
Hi Mary,
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.
neurology.org/content/early...
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.
Art
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:
ultimaedizione.eu/parkinson...
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!
Art
Replied by Art (California ) on 08/10/2017
Hi Paula,
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.
Art
earthclinic.com/mobile/answ...
4 grams is too high dose! I am doubtful whether 100 mg injection twice a week can be an alternative to 4 grams oral daily
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
I might suspect he means oral two days a week in place of injections.
It again makes a confusion. Here he says thiamine chloride and 4 grams oral. Roy it means that you are not taking right dose? Things need to be clarified. One thing more: if that was so much important discovery, this doctor should have hit the headlines. Frank Church has not mentioned this discovery in his article on major milestones of PD treatments
This needs some further research
When I experienced my improvement I was taking 50mg allithiamine twice a day. But I was also taking 250mg mega benfothiamine twice a day. After great improvement and reading about allithiamine vs benfothiamine I dropped the benfo.
and raised my allithiamine to 100mg, 3x day, everyday with continued good results as I addressed on my Profile.
The doctor has my trust. Although I suspect I will continue to consider my allithiamine dose.
"allithiamine is absorbed & penetrates the cell membrane far better than thiamine HCL,"
Far better may mean allithiamine is 4X more effective than thiamine chloride
Thanks Roy, I would like to hear from others who have taken your path and results gained
Allithiamine is very low cost
Roy, do you have a particular brand of allithiamine you’d recommend?
Ecological Formulas
I have raed many controversial info about benfothiamine since it's a fat soluble version of vitamin B1.
Some say "The brain requires much more thiamine than other cells. Numerous B1 deficiency symptoms relate to the nervous system. Because brain cells & nerves have a high amount of fat, more fat soluble B1 will stay in the nervous system where it effects its numerous benefits."
But I personally spoke with the Italian doctor, Dr Antonio Costantini who did the research on B1 and came up with the idea of treating PD patients with high dose Thiamine is totally against the use of fat soluble versions of vitamin B.
I think RoyProp is correct on the type of thiamine. I have searched a little and found that Allithiamine (thiamine tetrahydrofurfuryl disulfide or TTFD) is a fat soluble thiamine derivative as opposed to thiamine HCL which is water soluble only. Research has shown that the allithiamines' disulfide bond is the key factor in facilitating penetration of the cell membrane and increasing thiamine levels in the brain. In addition, alcohol & malabsorption markedly reduce intestinal absorption of thiamine HCL. Therefore Allithiamine as indicated by Roy is correct
BTW, Why the oral use of sulbutiamine is never discussed for neurodegenerative diseases?
Suppose to be the only effective lipid soluble thiamine derivative able to readily penetrate the brain barrier at the low dosage 200-400mg/daily and possibly exert pharmacological properties within a short period of time in the brain.
Instead HCL thiamine which water soluble crosses the brain through slow difussion (active or passive) allegedly in a megadose of 4,000 mg /day for parkinsons patients in the course of 1-2 months. So 200mg Thiamine HCL IM / a week equals 28,000mg of oral thiamine HCL/ week. Thats 140 times less bioavalability! an extremely low bioavailability for HCL.
I wonder whether Dr Costantini ever trialed lipid soluble thiamines like Sulbutiamine or Allthiamine for oral use before opting for the least bioavailable form of Thiamine HCL .
I remember it is mentioned by Roy when asked Dr Costantini about Benfothiamine and Allithiamine. He replied for Benfo which of course it is not real a lipid soluble thiamine and does not cross the brain barrier as some studies suggest.
degenerating Parkinson or Parkinson +
Thiamine dose
Feeling a little disillusioned about TTFD and High Dose Thiamine (HDT):
Impact of Parkinson's
