High dose thiamine as initial treatment f... - Cure Parkinson's

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High dose thiamine as initial treatment for Parkinson's disease

42 Replies

casereports.bmj.com/content...

online.liebertpub.com/doi/a...

Correspondence to

Dr Antonio Costantini, carapetata@libero.it

Read more about...
42 Replies
MGP201 profile image
MGP201

Thiamine 100 mgrs im twice a week?

in reply to MGP201

thiamin HCL

B1 Thiamine therapy reference:

Doctor Costantini remembers that helping his very first patient, afflicted by an acute ulcerative, set him on the path towards countering Parkinson’s disease. He advised her to inject herself with two mg of Thiamine per week. “In the first 15 days of the therapy the patient was relieved of exhaustion, irritability, pain in her feet and calves”– says doctor Costantini- “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine.An important detail”,adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

ultimaedizione.eu/costantin...

ultimaedizione.eu/astonishi...

"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."

healthunlocked.com/parkinso...

alexask profile image
alexask in reply to

But would it survive the double-blind study? I believe there is a very strong benefit from increased social interaction for Parkinson's patients especially if they are told that they are involved in finding a potential cure for parkinsons.

P.S. For those living in the UK wilko's are selling Vitamin b1 and Coq10 very cheaply.

park_bear profile image
park_bear in reply to

Only 2 mg?

in reply to park_bear

Benfotiamine is commonly taken at the oral dose of 300-600mg over the course of the day, usually in two divided doses with meals (150mg or 300mg twice daily). Examine.com/supplements/benfotiamine

park_bear profile image
park_bear in reply to

Yes, very good. You might want to edit this part in your prior post: "He advised her to inject herself with two mg of Thiamine per week."

in reply to park_bear

Oral dose is the alternative to injections

Coling profile image
Coling

Hi Roy, THat post seems to be 2012 with only 3 patients but they seem to have continued until 2015 without a double blind test but still interesting and worthy of pursuit. There seems to be more about this on this page: weareparky.wordpress.com/20...

Fava-1 profile image
Fava-1

Started soaking 4 almonds, 1 brazil nut 5 cashews, 2 apricot pits overnight and rince them in the morning to eat. This was back in January and within 2 weeks had improvement in symptoms and reduced the amount of natural fava l-dopa extract that I take. Also eat pistachio nuts during the day. Try it😊

lempa_nik profile image
lempa_nik in reply to Fava-1

Is there some reason for this selection and specific number of nuts? And why the soaking? Folk medicine, divine inspiration . . . ? The apricot pits will require much caution--you should warn people that "more is better" is definitely NOT true with them since they carry the danger of cyanide poisoning:

"Eating more than three small raw apricot kernels, or less than half of one large kernel, in a serving can exceed safe levels. Toddlers consuming even one small apricot kernel risk being over the safe level."

Source -- efsa.europa.eu/en/press/new...

Fava-1 profile image
Fava-1

there is a substance in nuts that is not good for us. Soaking them overnight leaches this into the water. Then I runce them well and eat them with breakfast. The number of nuts I eat because of my size...120 pounds and feel that is quite sufficient for me. Decided on the 2 tiny apricot kernals after research and felt that was a safe number. Do a lot of experiments on myself til something feels right. I am my own guinee pig , not a doctors. God bless

Hil101 profile image
Hil101

Thank you so much for posting both this and your previous one about your improvement after taking benfotiamine. After looking into it further and finding compelling information about thiamine deficiency, my partner has started taking it. Please can you say if it adds extra benefit to take allithiamine as well as mega benfotiamine?

in reply to Hil101

No, I thank you for reading, understanding, and thank your partner for embarking on this regimen. We should expect improvement over time. I use both beno and alli to balance out the mg that I want to consume. Added benefit, each will play a part.

None of these supplements will cause movement disorders. With your help, together we may confirm the results or....... I have tried almost every thing, from CBD, coconut oil, to keto diet with little to recommend until I went to beno and alli.

I trust Doctor Costantini. He has not sought to sell anything or to profit (paraphrase of his words).

in reply to Hil101

National Health Federation

Fat-soluble benfotiamine is almost six times more biologically available than water-soluble thiamin hydrochloride, the common form used in dietary supplements.[xxi]

Furthermore, gut bacteria has now been shown to regulate movement disorders like Parkinson’s disease in laboratory mice and represents a risk factor.[xxii] Ditto for Alzheimer’s disease.[xxiii] Multivitamins need to incorporate ingredients that promote healthy gut bacteria.

thenhf.com/component/conten...

Hil101 profile image
Hil101

Thanks. It's really interesting and I will let you know if he benefits. How long was it before you noticed a difference?

About 8 weeks

On the link I posted, casereports.bmj.com/, they require you to purchase the full doc.

Full Text sent to me in response to my email communication I had w/ Doc. Costantini.

I sent my regimen to Dr Costantini and Received reply on 11/18/2017

Caro Roy, ecco i nostri studi. Un saluto. Ac

Dear Roy, here are our studies. A greeting. Ac

Three pdf files in English:

15jacm PARK – Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot Study

NeuralRegenRes_2016_PARK – NEURAL REGENERATION RESEARCH March 2016, Volume 11, Issue 3

PARK. nuova diagn – CASE REPORT High-dose thiamine as initial treatment for Parkinson’s disease

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

B1 EFFETTI COLLATERALI.docx

in reply to

National Health Federation

Fat-soluble benfotiamine is almost six times more biologically available than water-soluble thiamin hydrochloride, the common form used in dietary supplements.[xxi]

Furthermore, gut bacteria has now been shown to regulate movement disorders like Parkinson’s disease in laboratory mice and represents a risk factor.[xxii] Ditto for Alzheimer’s disease.[xxiii] Multivitamins need to incorporate ingredients that promote healthy gut bacteria.

thenhf.com/component/conten...

11/19/2017

Dear Roy, these are all my publications.

Antonio Costantini

15jacm PARK

FIBROMYALGIA bmj 3

FRIEDREICH BMJ 5

Friedreich long term

m. di steinert

MS FATIGUE BMJl 2

NeuralRegenRes_2016_PARK

PARK. nuova diagn.

POST STROKE fatigue

PROOF THYROID

rettocolite ulcerosa ACM 1

SCA2 bmj 4

Thiamine and dystonia 16

park-bear found a couple of references that say allithiamine is the way to go: "The two kinds of oral thiamine available on the Internet are benfotiamine and allithiamine. They are not equally effective. While thiamine levels increase rapidly in the blood and liver an hour or two after ingestion of benfotiamine, they don’t affect the brain. For tremors, allithiamine is the best form of oral thiamine to take.

After increasing my thiamine levels with injections twice a week for two months, I took 100 mg of oral allithiamine twice a day to keep my levels boosted. I found that this was sufficient to keep my tremors at bay most of the time "

jeeves19 profile image
jeeves19 in reply to

Roy. How do you go about injecting yourself? Do you do this personally or does a clinician do this for you?

in reply to jeeves19

I use oral b1

jeeves19 profile image
jeeves19

2 daily right ?

in reply to jeeves19

3

The January 2018 issue of American Heart Journal reported the finding of a randomized trial of a reduction in cardiac events and mortality from any cause over follow-up in association with high dose vitamin and mineral supplementation among patients with a history of heart attack who were not being treated with statin drugs.

Update: Thiamin HCL, 2g at 4am then 2g at 4pm. In one of my Posts or was it a Reply, I stated that if there was greater improvement, I would take and stay with T-HCL. Well I have experienced greater improvement over the Mega-Benfothiamine (low dose).

Good bye MiraLAX and prunes. For a month now I have normal, easier bowel movements.

Doc Costantini said good regression in one to two months. I am in the fifth week still looking for resolving the tremors. The Doc said if need be, increase the dose.

enricomoraca48 profile image
enricomoraca48 in reply to

I live in Italy (Calabria) and I started with Vit. B1 100 mg. in vials, 3 times a week, from March 2016, after the first meeting with Dr. Costantini, and even today I continue to do it for 3 weeks a month.

I can say I'm reborn. I resumed driving the car and feeling much better.

To date, in addition to Vit. B1 I take various oxidants together with Mucuna, in powder form, and in 100 mg L-Dopa capsules, plus 2 half tablets of Sinemet 100/25.

I can confirm that the dott. Costantini who besides being a wonderful person, is also honest inwardly.

in reply to enricomoraca48

I wish more PWP will take Doc serious.

Doc Costantini is not a fraud or trying to sell "snake oil".

He cannot patent thiamine HCL.

He published his findings to the benefit of all.

He is not advertising for patients to his clinic.

He has published his contact info for those with questions.

He give dose and advice for free.

He has answered several from Parkinson group;

He answered me

aspergerian profile image
aspergerian in reply to

A task for Sisyphus: get more MDs to read B1 studies by Costantini et al.

Roy,

If you wouldn't mind, I have many questions for you regarding your use of Dr. Costantini's protocol?

From what I got from your posts, it appears you have settled on 4 grams a day of Thiamine HCL, 2grams at 4 am and 2 grams at 4 pm? Are you using 500 mg capsules or pure bulk powder or something else? Could you say what brand you are using?

Do you find the oral thiamine hcl to be as effective as the B-1 injections twice a week?

Can you give specifics on what benefits you attribute to the vitamin B-1?

I was also in contact with Dr. Costantini on behalf of a friend with PD. Dr. Costantini certainly comes across as sincerely wanting to help people living with PD and he is very generous in terms of freely sharing the information about his protocol. My friend started on 4 grams of thiamine hcl as recommended by Dr. Costantini. My friend decided to try the bulk powder first in order to avoid all of the fillers and gelatin associated with the capsules.

He started to notice the first sign of improvement at the end of the first week. He told me that he had extreme anxiety and that after one week that aspect of his PD symptoms was very significantly reduced. After three weeks he felt that he noticed an improvement in constant back pain that he felt was caused by his PD. At 4 weeks, he told me that he felt that his legs felt more stable/stronger. Unfortunately, after four weeks of supplementing, I think he started thinking that the B-1 was going to be his cure and he started skipping doses and then he started drinking a lot which caused most if not all of his improvements to diminish or go away altogether. At that point, Dr. Costantini recommended that my friend should adjust his dose of prescription meds as well as his dose of B-1. Long story a little shorter, my friend started only taking the B-1 irregularly. In an effort to try and get him to be more compliant with Dr. Costantini's protocol and hopefully achieve better results, I ordered 500 mg capsules of thiamine hcl thinking it would be easier for him to take than the powder which he was mixing as a drink twice a day, which can be hard to do when you aren't at home. My friend told me that he wasn't sure, but he felt that the bulk powder might be slightly more effective than the capsules, but even with the capsules, he was not taking them regularly. I finally realized that no matter what I did for my friend, it was all useless if he was not going to take the B-1 as Dr. Costantini had said to.

Currently I have two other friends with PD that I would like to try Dr. Costantini's protocol, so I am looking for as much information as possible from you. Dr. Costantini told me that it was his experience that B-1 has the potential to stop disease progression at a minimum and also has the potential to reverse motor and "non motor" symptoms if taken regularly for the rest of your life with the prescription meds. He said if you stop taking the B-1, the symptoms will return. I did not get a chance to find out from my friend, because as far as I know, he is no longer taking the B-1. The thing that bothered him a lot were the hand tremors and for the time that he was taking the B-1, he said his hand tremors never improved. I asked Dr. Costantini about the hand tremors and he told me that the tremors were usually the last symptom to go and that sometimes it required an adustment to the B-1 dose as well as the prescription meds in order to control the tremors effectively. He was always clear and firm on the idea that most if not all PD symptoms would abate within a few months of starting, including tremors. He never said exactly if the oral dosing was as effective as the injections, but the tone of what he said sounded as though it could be. He said he had treated some patients using oral dosing, but it sounded as though the majority of his patients would go the injection route. He said not to use benfotiamine when I asked him about it. I also asked him if dissolving the thiamine hcl in DMSO and applying it to the skin would be more effective than the oral route and he said that there was no need to go to all of that trouble as the oral B-1 would be adequate to achieve proper brain levels. His idea was that the problem was possibly with the transport system that delivers the thiamine to the brain because he said that even in his patients that showed B-1 serum levels to be in the normal range, the treatment still reversed their PD symptoms.

Btw, did you notice the number of studies that Dr. Costantini has been involved with through his clinic as well as through other institutions and research teams? An impressive number to be sure!

Thank you in advance for your reply, Roy!

Art

in reply to

Solgar thiamine HCl, 500mg tablets. I do not inject. I take 2g at breakfast and 2g at lunch. See my profile and posts/replies.

Reply

greywolf43 profile image
greywolf43

Dear Royprop,

I am wanting to start the thiamine therapy. I found a link from Dr. C that benfothiamine is not the one to use, but I have lost the link. Do you take bento or thiamine HCL? Thanks for all your help with this.

in reply to greywolf43

thiamine HCL

greywolf43 profile image
greywolf43

Thanks Royprop. That's 4 Solgar 500mg tablets 2x a day, am I right?

in reply to greywolf43

Yes

MehmetKutlu profile image
MehmetKutlu

I received vitamin B1 injections, and got benefit. I am grateful to Dr. Costantini and to you.

I'd like to bring your attention to this particular study, which states that benfotiamine cannot enter the brain as well as the other forms of thiamine:

ncbi.nlm.nih.gov/pubmed/185...

Perhaps allithiamine and sulbutiamine are better orally. The latter is said to have good intestinal absorption and better ability to cross the blood-brain barrier:

nootropicsinfo.com/anxiolyt...

Any opinions ?

in reply to MehmetKutlu

The doc agrees reg benfo. He recommends thiamine hcl

Rujack profile image
Rujack

Hello all. Is thiamine hcl the same as regular vitamin b1?

I bought some vitamin b1 but not sure it is the same as thiamine hcl, thiamine hydrochloride etc.

Many thanks

in reply to Rujack

thiamine hcl, thiamine hydrochloride

Rujack profile image
Rujack in reply to

So, thiamine hcl is the proper form, yes?

in reply to Rujack

yes

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