Parkinson's Movement
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Who is Taking Thiamine and a Brief Summary of Any Benefit That You Attribute to its Use? / Reference Page / Email : carapetata@libero.it

I'm realizing that there are many more people taking Dr. Costantini's Thiamine Protocol or a variation of it on this forum, than is readily apparent. It seems that there are some "quiet thiamine users" who only mention it once in a great while if at all and then their posts are lost in all of the other information that flows through this forum each day. I was thinking it would be useful to have one page or post where PWPs using thiamine could briefly explain their experience with it. A reference page where people who are interested in possibly trying thiamine can get a good idea of realistic expectations with this protocol. You also can comeback at any time and "Reply" to your post if needed in order to update on any notable changes that occur while using thiamine thereby keeping your report current. By doing it this way, everyone who is following the thread will automatically be notified whenever you do an update "Reply" and all of your information will be grouped together in proper chronological order making it easy for everyone to follow your results with thiamine! Having that information organized in one place could be very helpful for all concerned!

The page would need to stay on topic in order to minimize non-thiamine input. Just a brief description of benefit or lack of benefit is all that is needed.

If anyone is agreeable with this idea, please post your summary of thiamine usage and please include a time reference of when you started, how long you have taken thiamine and what dosage schedule you are using along with any information you feel is pertinent.

Remember, if you select "Follow post" below, you will automatically be notified when a new post is added or updated to this thread!

Thank You!

Art

{Edited by admin to remove personal email address}

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oldestnewest

Summary on my profile (updated frequently), posts and replies. About one year.

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Hi Roy finding it hard to find my way around this sight hope this gets to you and others who may be interested

I started on Thiamine 3 weeks ago at 2g worked up to 4g initial results no constipation no change in other ways after a week started to experience tremors (don't suffer them normally) also I was feeling yuk and seemed to experience more off times I reduced Thiamine down to 3 g that didn't help so currently on2 g and have had much better days also notice an improvement in my sense of smell so something is working any Australians who want to try Thiamine it's available in 500mg tablets from iherb on line they will ship to Aus I paid $18 aud for bottle of 100 Tabs are a bit big you might need too take with yogurt or custard when you swallow make sure you head is down with chin towards chest it's much easier to swallow like that you have more muscle power my Physio s advice it works

Be Poitive

Cheers Sunnysky

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Cheerio

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Was diagnosed Jan 2017 as extremely mild. Have been active cyclist for 30 years with walking and gym. Had op in December kept me down for a few months so just started exercising again. Taking only rasagiline since diagnosed. Tremors increased substantially last 2 -3 months. So Started taking 3000mg B1 per day started May 1 per Doc C. Will provide update June 1. Possible benefit - sleeping through night but really to early to tell.

5/10 (Thursday) - Please note: I am tremor dominant. Outside of some occasional anxiety and sleep issues ( which may be caused by PD and maybe not,) I don't really suffer from other issues I am aware of, other than weakness/coordination in right arm/hand. I still have sense of smell and balance is relatively good.

Tremors increased considerably over past few days. Doc C advised to stop taking Thiamine until Monday and report back to him on status. He will then modify dosage. Will advise upon response.

5/14 Dr C responded and lowered my dosage to 2000 mg B1. My tremors have calmed down so there is a distinct possibility that they were caused by stress, which I communicated. I will contact him in 30 days with videos and update at that time.

5/29 - My doctor prescribed Amantadine today - low dosage for tremors. This will be increased slowly as long as I don't experience side effects. My right side (tremors) is noticeably weaker than my left. I started taking B1 on May 1. I have not experienced any noticeable benefits as of yet. For the past 3 weeks I fast walk 4-5 days a week 2-3 miles, bike 2-3 days a week and go to gym 2 days. So I am extremely active. Other than tremors (and weakness on right side which are noticeabley getting worse), a little insomnia, slight and occasional leg cramps at nite. Anxiety on occasion. Still taking 2 gr. B1 as prescribed by Dr C daily. One note, I've recently had 2 operations with other unrelated health problems. I feel, as my doctor does, caused stress, hence the tremor increase.

6/3 -Started on Amantadine 50 mg once a day 4 days ago for tremors (breaking in slowly). Restarted 2 grams B1 on May 14. There is noticeable relief of two maybe three symptoms or the past 3-4 days (not commenting on tremors which the Amantadine is helping for a short time.) I definitely have more energy and have not gotten as tired after my walks or bike rides (which usually last an hour and are fairly intensive). Secondly, although I do not consider myself as extremely stiff, but over the past few days it is much easier to bend, twist, etc than prior. I am noticeable more comfortable and usually not the case as I do have back problems. Lastly sleep has been great. I do have intermittent insomnia. Whether this is do the the B1 or not I have no idea. I can't evaluate tremors as I am now on medication, but my mood and general feeling of well-being has improved... Will report back in 30 days.

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why has he not started you on madopar or sinemet, rasagiline by its self is no good i got rid of it a long time ago.

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Motherfather

I will be discussing with my local neurologist next month. Until my back op Very few tremors and symptoms. Been extremely active prior. He and I have felt no need at that time. We will re-evaluate next month.

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Only bothersome symptom is at times strong right hand, arm and shoulder tremor. Amantadine has seemed to ease that. I’m at 2 gr of B1 a day. Plenty of energy and exercising daily. I can’t really evaluate the benefits but since I’m maintaining a reasonable quality of life and I will most definitely continue taking.

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7/6 - Been on Amantadine for approx 5 weeks now. Less or milder tremors, but some undesirable side effects. Dr. Costantini took me off B1 for a few weeks ago for 3 days as the tremors had increased. Then recommended 2 gr morning and 1 1/2 gr lunch which I've been adhering to for the past few weeks. Seems to be the ticket as I'm feeling better, mood, strength, etc. I also workout, ride bike and walk 6 days a week. Sure the combination of it all has been helpful.

Would like to say that I'm quite frankly amazed at his quick responses. I am very grateful for his generosity.

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Parle Park,

Thank you for the update and glad to hear you are doing well!

Yes, so many people think they can just take thiamine and it will work fine, but it is becoming obvious that getting the dose just right is anything but simple for some and can take a lot of trial and error for some. Being in touch with Dr. C while testing thiamine can mean the difference between improvement and worsening of symptoms! I hope folks who are having less than optimal results with thiamine will start to see that one dose does definitely not fit all!

Art

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That’s certainly the truth! Ya need patience as external circumstances re stress, sleep, etc. can play it’s part in determining dosage. I now take 1 gr breakfast and 1/2 gram at lunch,every other day I take 1 gr at lunch per Dr. C’s recommendation. Seems to be the ticket.

I am probably mild compared to most but I exercise almost daily usually 40 minutes - 2 hours accompanied with Amantadine. Ive reduced the Amantadine dosage by 25% due to headache which are seemingly diminishing. I hope to reduce another 25% but will give a few weeks to see how this dosage fairs.

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ParlePark,

I wish more people who are trying thiamine could see your posts above so they can get a clearer understanding of just how hard it can be to find their most optimal dose of thiamine because your case is a perfect example of that. Yes, some people start at three or four grams and it works out fine for them, but they seem to be the exception and not the rule when it comes to oral thiamine dosing. Some people seem to be much more sensitive to thiamine while others are not sensitive at all! It also helps clarify for me why Dr. Costantini likes the intramuscular injections, as they seem to hit the mark more often than not on the first try and their benefits can be apparent within hours!

Yes, Dr. Costantini has his own methods of determining initial dosing, but that is just the beginning! As you have already learned, one dose size does not fit all! Even if you are working with Dr. Costantini, it can still take three months+ just to determine proper dosing and then from there he has to determine whether you may need to adjust your PD meds in order to maximize effect and then lastly he needs to determine if adding something like magnesium can further improve the response. Months of adjusting may be a pain in the butt, but if it works, it will be worth every second invested in that process. Even if you get good benefit within the first week, does not necessarily mean that the dose is correct because in a week or two, your symptoms may start to worsen, indicating that the dose is now too high.

You are basically trying to figure out the dose you will take for the rest of your life and though it is simple for some, it can be much more involved for others, but one thing is becoming clearer and clearer, those who work with Dr. Costantini "continuously" when they are getting started get the best results from thiamine!

Art

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You hit the nail on the head. Was frustrating but well worth the frustration. At first my tremors increased substantially with 4 gr. Even so with 3. Now, and sure the Amantadine does help, they are far less frequent and not as intense unless stressed. Note, I also take 400 mg of magnesium.

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Trial, error 🤔repeat , report!

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8/14- off Amantadine. Side effects not worth it for me. Headaches for hours. Working with mucuna conservatively so far no luck. Went down to 1G B1 a day as tremors (naturally increased since off Amantadine). Contacted Dr C last eve with general status, which outside of occasional sleep issues, some anxiety and recent substantial tremors are actually very good. He Wrote me back by 0700 this morning PST!!! He feels that I should try 1/2 Sinemet 100/25 and see how that goes, increase to whole if nec. Will discuss this option as well as mucuna with my neuro next week (not expecting positive response re: mucuna) but Looking at all options and will stay on B1 for rest of my life. I feel tremors increased originally as I had medical conditions which prevented me from any exercise whatsoever for 6 months. Normally exercise 1-3 hours a day from moderate to extremely intense. Will try to visit him next year with wifey.

Although I was dx in early 2017 had symptoms for a few years prior. I sincerely believe that my long distance, steep ascent cycling (30 years+) have put my PD at bay. Im back at it! (Excuse typos on cell)

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Since feb 1, 2018, 4000mg/day. Result so far is improved movement of rt arm, improved hamdwriting. Less intention tremors.

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I'm very glad to see that your UPDRS score went from 34 to 21 in just 60 days on thiamine!

Art

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Thanks Art. Much more improvement needed but glad so many are having breakthroughs

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What is a UPDRS score?

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On same dose 50% am 50% pm no changes identified yet. 4 weeks and watchful.

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4-1/2 years post diagnosis. Tremor dominant. Taking 4 gm Thiamin HCL (4x500 twice a day). Noticed improved fluidity of motion and less stiffness. No noticeable effect on tremor or toe curling while walking. Also taking 25/100 CL three to four times a day and a variety of supplements (liposomal glutathione, niacin, CoQ10, lithium, B-complex, magnesium). Also walking 2+ miles every day.

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Do you take any Magnesium?

Magnesium helps me with curling while walking. Ask Dr Costantini, he will advise you on this.

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Thanks for the suggestion Kia17. I take 200mg of Chelated Magnesium sporadically, generally at night. Do you take it before your walk or just work into your normal supplement schedule?

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I take 300mg of Aximagnesio a very selective type of magnesium salts advised by Dr Costantini in the morning with my Thiamine’s morning dose.

I also take 400 mg of Magnesium Citrate before bedtime (self medicated).

My dystonia reduced by almost 80-90%.

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Looks like my supplement list just increased by two! I appreciate the advice, thanks!

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Hi, Kia17! You may already have shared this, but what is Dr. Costantini’s email address and/or what is the best way to contact him?

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Jim,

Here is a post that has his email in the title and information you should have before you contact him.

healthunlocked.com/parkinso...

Art

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Thank you very much!

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Mag Cit for p.m. - yes!

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Good to know- also good for sleep, I hear?

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Hi Karlschmo

Where do you get liposomal glutathion and which branch ?

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Similarly on B1, *GSH/ injections, Niacin, CoQ10 and *lithium {*based in part on clinical recommendations of Laurie Mischley , ND, MPH, RD]. Plus: NAD+!Intranasal , Mannitol, & omega 3 I am now post-mega vit D3 therapy (adjusted)! Feeling good - at last . Report to follow 6 + weeks.

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Amy,

Wow, you are really going at it like you mean it!

Art

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Just saw this post today and was interested in your supplement regimen. My husband started B1 last Thursday, 7/19. Dr. Costantini advised him not to take his multi or the B complex. I'm a little concerned but thought I'd give these first 3 weeks a try to see what may be the result of the B1. Are you working with Dr. C?

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Started bi weekly injection of b1 end of last December. One injection is b1 and the other one is b1 mixed with glutathion. No reduction or amelioration on tremors so far

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Where do you go to get injections of thiamine and glutathione? Is payment 100% out of pocket?

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The b1 only i do myself and for the one with glutathion i do it with a doctor in a clinic in Switzerland

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Thank you. Where is your home?

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Hi Marcet !!

I would be interested in that doctor in Switzerland. !

Thanks in advance !

{Edited by admin to remove email address}

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Who is the dr in switzerland? I will be there next month...

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I buy Glutathione from Archway

Compounding pharmacy in Covington, Louisiana. Must have a physician Rx.

I buy Thiamin from Vitacost.com 500 mg/ pill x 8/d maximum dosage.

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Amy, I was of the impression that glutathione didn't cross the BBB is why people bought NAC instead??

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Hi Marcet may I ask where you get your B1 I/M injection from and what country are you in

I'm in Australia and although I can get it from the chemist it's expensive $280 aud each week thanks

Sunnysky

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I'm taking 3000 mg of thiamine A day for a month now. I think in general I feel stronger, toe curling is gone, still have tremors and far from perfect, but I do feel more positive and stronger over all which is wonderful.

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Have started and abandoned it a few times - just didn’t feel well on it, yet each time attaching so much hope for it to work .... May need to stay on it for longer.

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Hi Skydome,

Of course I know, it's not easy to do it alone, maybe it's better to get help from the doc. Spain is not far from Italy, in my opinion, maybe it's worth taking a step here from the doctor once. Write to Costantini and see what he tells you, many do it.

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Hi, my husband started on 1g a day and his mood has become increasingly anxious and today he is feeling suicidal. When you say you feel unwell what symptoms do you have?

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Hi LAJ12345,

Sorry for the late reply. I hope your husband is feeling better now. From my own experience, feeling suicidal can be caused by being in great physical discomfort which can in turn lead to a sense of hopelessness and despair.

Have you written to Dr. Costantini for dosage instructions? I did not do that to begin with and went ahead based on what I had read on this forum. On some days I would take 1g and on other days 4g or not at all. I had bouts of palpitations and worsening fatigue which might or might not have been due to thiamine alone as I was taking a number of other supplements at the same time. I later got in touch with Dr. Costantini and started seriously taking 3g/day and suspended all other supplements based on his advice, and after 35 days of following the regime I think I am beginning to feel its benefit, especially in my energy level. So I'll pass on the suggestion to me from GioCas above: if you have not already done so, please write to Dr. Costantini for help.

All the very best!

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Thanks! I have emailed him and had an initial reply asking what type of atypical PD he has. I said we haven’t seen the specialist yet so don’t know and he hasn’t replied again. I am not sure if it is because we haven’t seen a specialist. My husband hasn’t got severe symptoms yet so he is not in any discomfort and was diagnosed 3 months ago. The rapid increase of anxiety over the 7 days he was taking the b1 was why I thought it had caused it as his mood had been pretty stable over the 3 months.

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Hi GioCas,

Thank you for your kind suggestion. Visiting Dr. Costantini has been my intention from the start. In fact, any excuse to visit Italy is a good one to me ;) . You are right: for now I should try writing to him as many other people in this community have done - the Doctor sounds very helpful.

It is the positive experience of people like yourself with thiamine that makes me to want to keep trying. Thank you so much for sharing.

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I understand you, I also get up every morning with a bad state of mind due to the body and the disease, but I know that I'm not this two things, so I get up and try to make my life interesting and beautiful as if it were an artwork.It does not always work well but it is worth trying.

PD is not easy, the stakes are high: our future life.

At the beginning it takes a lot of intention and luckily the doc has found a solution. Our greatest enemy is not fatigue, but the state of mind that derives from it. The b1 will solve them both. With some tricks the b1 will work for you as it worked for me, I'm sure.

beautiful your profile photos

Gio

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Said it helpyour tremorsc GioCas

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I have almost no more trembling during the day, only episodically in stressful work situations, when something inevitably becomes overwhelming and tired from work, but it took a few months of b1 and add the right dose of levodopa as recommended by my just doctor. My tremor (arm and left hand and a little leg) decreased after 4/6 months and was the most difficult symptom. I have videos made by Doctor C. of 3.2.1 years ago of the tremor at rest , sitting on the chair with his hands folded in my lap.I can clearly see the regression of the tremor up to a slight irrelevant tremor.Gio

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Thankyou for your reply

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Thank you, GioCas! We are lucky to have you here 🙏.

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thanks very much, Skydome!

Take care to yourself. Only you can do it better.

I am sure you are an artist, your photos are very beatifull.👍

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Started taking Thiamine 3grs daily divided dose in the morning and noon from May 2017. I have almost 0 symptoms for the past month or so. I also take D3, Magnesium, Omega3-6, NAC, B12 and Floate with a very low dose of B6.Plus Mannitol 5grs twice a day.Sinemet 6/25:25 twice a day .

In my first visit with Dr Costantini my UPDRS was 11 but after few months became 0.

My symptoms are really well controlled.

Thanks to Dr Costantini

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Hi Kia17 >>> how long are you diagnosed ??

And what exactly do you mean with 6/25:25 Sinemet,........

Is it the same as 25/100 ??

Are they the yellow round pills (immediate release) or other ones??

Have you been personally to Dr. Constantini ??

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Hi Janvan

Had symptoms for few years. Diagnosed in March 2017 with positive DatScan.

Sinemet 12.5/50 half a tablet twice a day.

I have seen Dr Costantini 3 times since May last year every few months and the last time was in October 2017 and he said that I didn’t need to see him anymore.

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Thanks, do you live close to Italy ?? Is it necessary to see Dr. Constantini personally, I mean or the appointments really extensive (ask he a lot, and does he a lot of examinations (B-level in blood)) or can you do it at home??

Because I have the impression that the classical neurologists (in Europe) do just there fix programm.......

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Just a few thousand miles away (UK).

Dr Costantini spent 75 minutes to examine and discuss my concerns.

I personally think seeing him is much better than remote visit. However the main treatment might be the same.

I am looking for another opportunity to go and see him again.

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And how long do you take Mannitol and do you think it has an effect (and do you have side effects ?)

And where did you buy it ?

(Sorry for so many questions, but I think I have to be more aktiv......)

Considering following the Hinz-Protokoll ?? (Some spectacular videos).....

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Mannitol for 3 months. Worked well. Buying from Blackburn Distributions in the UK.

Where do you live?

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Hi Kia did the dr tell you to stop supplements too?

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Hi munchybunch

No he didn’t.

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I sent you a message in HealthUnlocked. please check and let me know if you have any questions

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My husband has an appointment with Dr Costantini early next month. I will be sure report back how it goes.

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HI

This is a great idea! My husband was diagnosed in February this year (2018). He has a tremor in his left hand and arm. Some rigidity, fatigue, forgetfulness, trouble multi tasking and a slight temor developing in his left leg also some facial masking. He is taking Sinemet 25/100 three times a day. He is also taking:

1. Magnesium Citrate (taking 900mg)

3.Vit C (taking 1000mg once daily)

4.Vit D3 (taking 5000iu daily)

5.B1 Thiamine HCL tablets (Taking 1g twice daily)

6.CoQ10 - ubiquinol (Taking one 300mg tablet in morning)

7.Omega-3 fatty acids - (Taking DHA Omega - 500mg DHA, 100mg EPA twice daily)

8.N-acetyl L-cysteine (NAC) with Selemium (Taking 600mg once daily)

9.Vit B 1, 2, 3, 6, 12 - (Taking mega B complex )

He only started the Thiamine HCL last week 3/5/18

I recently emailed Dr C. and he has advised him to stop all supplements other than the thiamine HCL and prescription meds. So that is what we are going to do starting tomorrow. Dr C. is going to advise us on dosage. We are sending him a video of him walking and his face and tremor.

I'll keep you updated on our progress. If we can just improve the fatigue I'll be pretty happy.

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Thank you for posting. My husband is taking the above med and most of the vitamins you have mentioned. On Thiamine (dose recommended) for one month. Do you know why Dr. C. has recommended that you stop the vitamins?

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He didn’t say but I assumed so he could monitor effect of thiamine alone. We are stopping suppliments but not sinemet. He ask me to stop suppliments so I assumed that didn’t include prescription medication.

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I think Dr Costantini wants to know if B1 alone can alleviate the symptoms without the Sinemet.

Please be cautious about B6. Too much B6 can produce Peripheral Neuropathy in which many cases are irreversible.

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What do you mean by too much B6, Kia? I take B6 in a compound with B1, B12 and folic acid daily.

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I take 2mg B6 a day which is with magnesium pills. Some B complex supplements have over 20mg that I consider too much. We also take B6 from our diet so should be cautious about the amount we take.

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My complex is called Neurobion and contains 100mg of B1; 200mg of B6; and 200ug of B12. I've been taking it for a few years. Have you any idea how Peripheral Neuropathy manifests itself? Maybe I should add that I've been a vegetarian for 40 years. :-)

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“Peripheral neuropathy, a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body. Your peripheral nervous system sends information from your brain and spinal cord (central nervous system) to the rest of your body.”

mayoclinic.org/diseases-con...

“But vitamin B6 is a balancing act. Not enough B6 will cause nerve damage, and too much B6 can cause nerve damage. Again, this can occur in some people at as little as 100 mg per day.

Good sources of vitamin B6 include vegetables, nuts, bananas, and meats. However, cooking and improper storage of food can cause the vitamin B6 content to be depleted relatively easily.”

neuropathydr.com/vitamin-b6...

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Thank you, Kia. I was always of the apparently incorrect belief that excess vitamin B was excreted by the body. Now I have learned otherwise! :-)

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Wow awesome vegetarian lifestyle for a long time 😊

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I've had peripheral neuropathy (tingling sensation in fingers and toes) for the past 4 years. Recently it started spreading to the soles of my feet which I mentioned to neurologist. He tested me for B6 - it was 3 times the normal levels so he told me to discontinue B6 supplementation which was only 20 mg/day as part of B complex.

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Will the tingling go now you've stopped the B6?

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Yes, after stopping taking B6 the tingling went back to "normal" - just fingers and toes. Also want to mention that I have MTHFR genetic mutation and may have issues with some of B vitamins metabolism, although I try to take them in bioavailable form and was taking B6 as pyridoxal 5′-phosphate. It seems that genetics play a big factor in how much B6 someone can efficiently metabolize without overdosing.

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That’s interesting. My husband has the mthfr gene too. Do you know which vitamins you should be careful of? Thanks

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Sorry for late reply, I just noticed your question. According to Dr. Ben Lynch who himself has MTHFR variant these are the supplements supposed to be taken, however he usually points out that you can't treat just one gene as there are many others that may have adverse reactions from same substances:

General Nutrient Recommendations for C677T MTHFR mutations:

Methylfolate

Methylcobalamin

Betaine in the form of TMG

NAC

Glutathione

Pyridoxal-5-phosphate

Riboflavin

Curcumin

Mixed tocopherals (vitamin E)

Silymarin (Milk Thistle)

EPA/DHA

Phosphatidylcholine

Nattokinase

Vitamin C

Vitamin D3

Comprehensive multivitamin/multimineral

Probiotics

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Thanks for that. Sorry just saw yr reply!! Any thing my husband should avoid pls??

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This is a difficult question because beside mthfr there are other genes that might need to be addressed and according to genetic experts if someone has CBS mutations (like me and my family members) - that should be addressed first. Then the real confusion begins - some of the supplements that are recommended for mthfr turns out are not so good for our CBS variants (NAC, P5P, etc), so it really can get mind boggling. I think the best way to find out what to avoid is by trial and error. I wish I could give you a more clear answer...

You can get more information on that at drlam.com/blog/a-cbs-mutati...

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Thanks for answering my unasked question! I have been beating myself up for not eating better and wondering if I had been a vegetarian if I could have avoided PD. Guess I can quit thinking about that now. That is enviable being consistent in your good eating habits!!

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Did you stop sinemet while starting thiamine treatment with dr c? Do you think when he said stop all other suppliments he meant sinemet as well?

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Thanks kia17 I’ll watch the b6 amount when we start suppliments again!

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When I started Thiamine I wasnot taking any Sinemet and later started a low dose Sinemet. Its better to ask Dr Costantini about any changes to your medications.

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He's blessed to have you. Thank you for sharing with us.

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That’s interesting. He didn’t mention stopping supplements. Why would that be? Any improvements yet?

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Did dr say take 900 mg magnesium citrate??

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I was diagnosed in Feb 2017.

At the time of my diagnosis, I had a resting tremor in my left hand, and was VERY tired ALL the time.

I'm currently taking Sinemet 25/100 four times/day. .5mg Benztropine once/day. Very little difference in both tremor and tiredness.

Two weeks ago, I started Thiamine HLC. 4 X 500mg/day. Shortly after starting the Thiamine, I took myself off Benztropine. I was experiencing lack of focus/concentration, and I thought it might be caused by the Benztropine. Within 24 hrs of going off the Benztropine, my tremor in my left hand got worse. Because of this, I thought that Benztropine we helping, and that maybe I should get back on it, and increase by dosage.

The following day, with my doctors approval, I started taking the .5mg 2 x daily. Within 24 hrs., my tremors were almost gone!

Not sure if Thiamine HLC played a part in this or not, but I'm going to keep taking it, and probably will increase dosage next week to 3 x 1gm/day. (Hoping this will help increase by energy level...)

I'll keep you all posted on my findings.....

LOVE this site. A lot of good people with good hearts!

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Thank for sharing. You sound similar to our situation. Can’t wait to hear how it goes. It’s so hard to work out what is cause what sometimes! Stick at it. I think time will tell in the end.

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When I was diagnosed May 2012, I was extremely tired, all the time. Blood test showed very low level of B12; I had monthly injections for two years plus oral supplements. Helped immensely. I continue to take 1,000-2,000 mcg of B12 per day. Also 8,000 IU per day of D3. Low levels of either can cause fatigue. I also take C & E, magnesium, probiotic, CoQ10. Going to look into thiamine.

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I though you should read the post that went up recently with Dr constantini's answers to frequently asked question, It has info you can use to assess your dosage of thiamine. It's important to get it right and it is not the same for everyone. You can take too much. Anyway have a read and see if it is useful for you.

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Where is it?

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Right here.

healthunlocked.com/parkinso...

Follow the post and you will be notified when ever there is an addition!

Art

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Thanks.

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You're right about the good people with good hearts, Boomermania. They're wonderfully kind and helpful.

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You too 😊

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Just started B1 Thiamine HCL May 5th (2g twice per day)

No noticeable change at this early stage.

-----

Update:

It is now May 21 (2 weeks in), only change is less constipation. Started taking B1 using the Solgar brand, after finishing the bottle I switched to the Vitacost brand, found that the Solgar brand affected my constipation better, I had daily bowel movements, with Vitacost B1 I may skip a day.

Update:

It is now May 29th (3 weeks in), the thiamine is still working wonders for my constipation, no other positive results at this time. I have developed Restless Leg Syndrome the past 4 or 5 nights, I am not sure if this could be related to the thiamine. I do take a magnesium supplement morning and evening. I have not taken the last 3 doses of thiamine to see if this makes a difference with the RLS.

Update:

It is now June 4th. I stayed away from the thiamine for a few days, the RLS symptoms stopped, after 4 days of no RLS I started thiamine again, so far the RLS has not returned. Relief from constipation is still the only positive from taking thiamine.

Update:

It is now June 11th. Other than constipation relief, no other benefit do I feel at this time from taking thiamine.

Update:

It is now July 3rd, I have just sent the following update to Dr. Costantini:

Hello Dr. Costantini

When we last communicated you advised me to stay with the 2 grams of B1 twice per day for another month. I have to report to you that I have not noticed any improvement to my Parkinson's symptoms, in fact I feel that I have declined, I feel more fatigued and feel that my gait has worsened. The thiamine originally helped with my constipation. but this now seems to be returning. When you have time could you please advise what I should do next?

Regards

Kenny

Response from Dr. Costantini:

Increase the dose to 3 grams twice a day and keep me informed.

three grams twice a day

Update:

It is now July 15th, I just sent the following update to Dr. Costantini:

Hello Doctor Costantini

For one week I took 3 grams of thiamine twice daily for a total of 6 grams daily. I continued to feel terrible. I stopped taking thiamine for one week and would like to start again. I was thinking of starting with 1 gram twice daily for a total of 2 grams daily. What do you suggest Doctor Costantini?

Regards

Kenny Broezell

Following is my history:

Diagnosed: October 2014

Symptoms: mild, slight right hand tremor, gait, severe constipation.

Taking carbidopa levodopa (sinemet) 25/100 3 times per day.

Originally started taking 2g thiamine twice per day.

Weight: 200 pounds (90 kg).

Height: 69 inches (175.26 cm)

Doctor Costantini replied:

How do you feel now after the suspension?

Hello Doctor Costantini

I feel somewhat better now since stopping the thiamine, I still feel the tiredness and fatigue which comes with my Parkinson's, just not as bad as I felt while on the thiamine. I did take 4 grams of thiamine daily for several weeks before the tiredness and fatigue had gotten worse than what I consider my normal tiredness and fatigue. During the first several weeks of taking thiamine the only relief I experienced was with my constipation. Toward the end of taking thiamine my constipation returned, for a couple of days after stopping the thiamine I was not constipated.

Regards

Kenny

Doctor Costantini replied:

Dear kenny

from next Monday begins to take two grams a day, one gram in the morning and one gram for lunch. Keep me informed every two weeks. We will find the right dose soon.

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I am 56 years old.

I use thiamine hcl 100mg injection 2 time at week intramuscolar, I start 2 year and half ago.

Stable after 2 year. I take also levodopa, madopar in according with my dr Antonio Costantini.

First tremor in left arm in 2009. .

In 2015 I was very bad, stiff, slow, continuous trembling and my Datscan was positive i.e. I'm sick.

Today thanks to the therapy of thiamine + levodopa and nothing else of continuative my life is almost normal, working 8/9 hours as florist in my shop, 🌷I sell flowers and listen 😴 every kind of person in a city near Milan.

In the evening i am very tired, sure., and I go home near Como lake.😀

I do that Dr A. Costantini says because it works well to me. And that's that.

A special thank to Dr. Antonio Costantini and his staff.

A marvelous thing as he likes to say.

Gio.

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Thank you for sharing! This is encouraging!

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Thank you for the encouragement you give to all of us!

I Iook forward to your posts as they always have something positive in them.

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they are positive because I write them only when I'm in a good mood 😂 thank you

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Hi Gio, do you actually make some pauses from time to time (stopping Thiamine or Ldopa I mean..) ??

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Levodopa i never stop it . thiamina i skiped some weeks in three year, 5/6 weeks at all because sometime i travel, sometime I don’t want to do injections like a child😄 but dr C. in his experience ,say me that restorative effect of thiamine can to last 2 month without take B1. Levodopa no, I take every day without skip it.

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Levodopa decreased over time or constant dose...?

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always the same from two years and half.

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In my opinion, Levodopa reduces stress and the chemical work that the few remaining live cells (for example, 10.20.30% of the total according to the years of PD passed ) have to do to produce all the dopamine necessary for the body. He made me notice the fact that if one removes the b1 even for a week or two is not affected, but if one removes the levodopa is affected instantaneously, this precisely because the levodopa serves the few living cells to produce with less chemical effort all the necessary dopamine.

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Right, may be Dr C or smb else could come up with something to add to the combo Thiamine + Levodopa, so that we start bit by bit generating our new dopamine producing neurones.. The brain has a huge recovery potential.. I am sure this is possible..somehow :)

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we would all be very happy. :-)

- - -

But we could be happy enough so living an interesting and beautiful life, with love and kindness towards others. :-)

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I think that is where the exercise and fast walking comes into it.

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yes, i believe that our bodies can heal themselves. i have been using homeopathy, and i have greatly improved my mental & emotional well being, with some physical improvements noted. i have been taking thiamine for a few weeks now, and have noticed improvements. i am going to give it a little more time, before i post the details.

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Overall, the reports from PWPs using thiamine at varying doses appears to be fairly positive and useful for others considering Dr. Costantini's protocol. Thank you to all who have taken the time to respond so far and I look forward to your updates!!!

Art

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I reduced to 2g a day with good results

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From an overview of the posts in this thread it seems to me that Thiamine HCL has only helped with reducing non-tremor symptoms, right?

Any reports of tremor improvements seems to be minimal?

From your observations is this correct?

Is thiamine any good for tremors?

Thanks

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Grumpy 77,

From what Dr. Costantini has said, it takes both levodopa and thiamine to do away with tremors and he adjusts both doses accordingly in order to get the best effect, but he has also stated that the tremors can be stubborn and are usually one of the last symptoms to go. That is why it is very helpful to stay in touch with him while using his protocol. GioCas, has eliminated his tremor, but he has also been on thiamine for 2 1/2 years now! Kia 17 reports almost zero symptoms after about a year on thiamine!

Art

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I went shopping with my wife today. 60 days after starting and continuing with 4 g of Thiamine HCL daily. My wife gave in, and went to the car while I stayed shopping. Today is the first day since DX 3.9 years ago, that I had the strength, stamina and absence of pain to stay on my feet for over 4 hours, and out last my wife. 😀

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Thank you for adding your thiamine results, Don!

Art

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Both products Vitacost, both are 500 mg, both the 300 capsules. One is $25 one at $43. I can't figure out why, i.e., what's the difference?

amazon.com/s/ref=nb_sb_noss...

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I think the reason is that Amazon purchased these months ago when the price was lower for thiamine across the board.

The bottle that Amazon shows is the older style yellow label. The newer Vitacost bottle is blue and white, not yellow.

Art

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I want to add here my answer to a friend of mine here three months ago about my opinion of dr. Antonio Costantini:

“Hi, sorry if I cut short yesterday.

I have seen Dr. Costantini 4 times in 2 and a half years. He is an excellent professional and very familiar with the sick so much that at first glance he understands your condition even if he visits very carefully with an extra gear: he treats you like a person to help, not a body to heal. I never hear or write between annual visits and I do not have another doctor, because I do not need it, but if I did I'm sure he would answer me right away. What I have seen is that he is very positive, knowing the difficulties of the sick and their doctors and having found this solution he wants to use it and make it known as much as possible. When a patient comes back and goes better like me he is very happy. I think his basic motivation is the sense of duty and help “.

I want to thank Dr. Antonio Costantini for his wonderful discovery , and Dr. Erika ,for the invaluable help on behalf of all Parkinson's patients who will benefit now and in the future from this.

Gio

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I have just started with the pure thiamine powder (1 week) I take 2g per day as my weight is 53 kilo. I add it to mannitol and 100% coconut water. After a week I feel I have more energy. Will keep you updated.

Cheers

Jac 😁😁

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I tried allithiamine and thiamine hcl with no noticeable changes or improvements. However, I recently tried sulbutiamine (400mg in the morning) and noticed a significant Improvement on the first day when I went to drive somewhere. It was a significant Improvement in my anxiety, my reaction time,, and overall handling of the vehicle. I was even able to drive with one hand like I used to do. I also drool excessively at night, however that has stopped as well since I began taking the sulbutiamine. It's only been 4 days but I'm wondering how long these improvements will last since it indicates on the bottle that with continued use the effectiveness May diminish.

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That is interesting!

How long did you take the thiamine for?

Art

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I took thiamine HCL 4 grams per day for 2 months

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Hi ! How is it going with the sulbutiamine 22 days later !

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Unfortunately the Improvement in symptoms was very short-lived. It only lasted a few days and then it was gone. I even tried stopping the sulbutiamine for a week and then restarting, but I was unable to replicate the Improvement I had initially experienced.

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It may be worth taking the time to give thiamine another shot since you already know that you tolerate it well, but this time do it in contact with Dr. Costantini so he can suggest a starting dose based on your current situation. There seems to be cases where he has recommended going above 4 grams in order to achieve improvement.

Art

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Hi all

I emailed Dr Costantini 10 days ago at haven't heard back yet. I want to start thiamine hcl but am unsure about dosage as I am 153 cms and 47 kgs.I was diagnosed in December 2017 and take 1 x25/100 sinemet and then half midday and evening. Symptoms are mild slight tremor on my left hand and some stiffness and slowness. Any advice would be great. I'm 58 and live in NZ

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Write him again. I have had to do this myself. I think he goes through periods where he is completely inundated with emails and then slower times when he is able to respond quickly as evidenced by his track record on this forum. He says over and over that he will answer emails about thiamine so I say hit him up until he does!

Art

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I have also emailed him a couple of times recently but had no reply after the first one. I suspect he is becoming so popular he can’t keep up! We are in nz too.

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Hi - I spend January to May in Queenstown - where are you based?

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We are in Christchurch.

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Thanks!

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Coming up on 7 weeks of using Thiamine HCL at 2 total 500 mg Solgar tablets in the morning and again at lunch. I’m 56, 5’11 and 150 lbs. 3.5 DX. No Pharmaceuticals.

Marked improvement in balance which has additionally benefited my walking, turning around, and driving. Also improved finger dexterity with typing.

I have a mild intermittent tremor with no noticeable change.

Throwing on some high heels and heading out the door...have a wonderful day!

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Doc Costantini asks that we should also take carbadopa levadopa. B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms

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I’m not sure that data exists proving Mucuna is not as equally beneficial as

C/L with regards to the Dr. Constantino B1 protocol .

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This is a copy of a post by tarverusmc regarding thiamine usage :

tarverusmctarverusmc 3 days ago 33 Replies

My First day was amazing with my dose of 500 MG of Thiamine.

Still taking my PD meds, I felt totally normal with no tremors, having normal thoughts and communication, and my foot started to work again.

Today, with med's, I am at a state where I can type again, walk normal again, without any tremor's or any PD symptoms..

Wish me luck in the next coming days and just maybe, No More PD Meds....

PD meds list

25/100 Carbadopa Levadopa x10 daily

Encatapone X 3

.5 mg of cenamete x daily

Donald Tarver

2695680512

thiamine

Update as of June 2, 2018:

This is a direct copy of a post by tarverusmc to the question :

How’s the thiamine working out?

tarverusmc

2 minutes ago

really well.

update is 1000mg breakfast

1000mg lunch

PD med regular.

no left leg pain

no left side tremors

mind and body is clear

relax and not anxious

no rigidity

no pd symptoms that I had before the thiamine protocol

two weeks with this dosage and i will try to reduce pd meds slowl

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This is a copy of a post left by Jumex2017

Jumex2017

11 hours ago

My husband had pd since diagnosed last sept. He has all the symptoms but he eats a guinoa oats breakfast with Chia, grounded flax, blue berries and apples. On top of this I add dried pumpkin seeds . He doesn’t suffer from constipation but after taking dr C’s treatment of high dose of b1 complex he’s able to walk for longer distances and seems to be happier. He’s only started taking this b1 about 19 days ago and I can see a vast improvement apart from this he also takes magnesium and q 10

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This is a direct copy of a recent post by Jmwg45 :

Jmwg45in reply to Greenday

4 months ago

I’m a bit worried to get over excited by the results. After seeing stuff on here about b1 I looked up symptoms of deficiency and identified several that I thought were just PD.

I have been on 5 weeks total, 3 weeks at 4g/day.

In the last 10 days I have felt better than for 5 years (dx June 2015).

I went on a 3.5 mile hilly dog walk and took 12 minutes off my time 4 weeks ago. My normal 40 minute walk (flat) now takes 35 minutes. I am now full of energy at the end instead of depleted.

I do PD warrior which normally takes a couple of days to recover from. Felt great next day and ready to go again.

I am better able to focus at work and get more done. According to my wife I am far easier to live with, do more to help and deal better with our young children.

All told, I might be just having a really good couple of weeks so trying to not get carried away. But so far I feel transformed

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Based on the following PubMed study abstract, oral thiamine may be more tolerable than intramuscular injection for at least one person.

Art

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Iran J Allergy Asthma Immunol. 2018 Feb;17(1):94-96.

A Case of Anaphylaxis to Intramuscular but Not to Oral Application of Thiamine (Vitamin B1).

Aurich S1, Simon JC1, Treudler R1.

Author information

Abstract

We report a 78 year-old non-atopic female with polyneuropathy who started to receive monthly intramuscular injections of thiamine hydrochloride. She had an anaphylaxis after the fourth injection. Skin prick test (SPT) with pure commercially available aqueous preparations was positive for thiamine hydrochloride. A titrated, single blinded, placebo-controlled oral provocation test with thiamine hydrochloride was well tolerated. The patient was then diagnosed as compartment allergy with hypersensitivity to parenteral but not to oral thiamine. Because in our patient, oral intake of thiamine has never been reported to lead to any adverse reaction. Oral tolerability might be due to the uptake mechanism of thiamine in the gastrointestinal system.

KEYWORDS:

Anaphylaxis; Hypersensitivity; Thiamine; Thiamine deficiency; Vitamin B1

PMID: 29512374

Share on FacebookShare on TwitterShare on Google+

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Started Thiamine yesterday under Dr Constantini’s suggestions. Watch this space. No other meds or supplements

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2.5 days in. 1 gram, 3 grams today 4. Calmer, eyes shiny, hand-eye coordination improved. Thiamine smell to the sweat after exercise. Shakes come and go. One glass red wine is too much at the moment

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First week....Still calm. All symptoms toned down. Non gone yet. Settled at 3 grams. Prescribed 4, but produced jitters. Steering clear of any alcohol and coffee both worsen tremor

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I’m at 8-9 weeks 2000mg Thiamine daily with fantastic results. All my Pd symptoms are waning including tremor. I should say I did not have a full time tremor anyway probably a 4/5 on a scale of 1-10. Ten being the worst. My tremor is now a 1/2. Balance feels normal, this had been one of my most troubling symptoms. Gait could still use improvement but has hours of normalcy some days.

I have found that periodic dose skipping seems to benefit my symptoms, I’ve done this several times. I do not take Pharmaceuticals. Just Mucuna/vitamin already mentioned on this site. I’m 3.5 years from my first noticeable symptoms.

Update 6.10.18.

Several times over the past 9 or 10 weeks, I've become overly jittery. The first time was early on and I stopped taking the B1 for a full day. This eliminated the jitters and provided lasting positive effects. The second time I became jittery was last week I stopped the B1 therapy for two full days this time because I knew the therapy was durable. Again I experienced lasting increased positive effects, including a further reduced tremor.

I'm on a low dose of B1 at 2000 mg per day. This because I think I have high absorption. I also use Mucuna at a low dose with good results again because I think I have high absorption.

All in all him having fantastic results with the therapy from subtle to obvious. The most recent being voice tone/deflection has become normalized. Other improvements are, great balance, swift movement, high energy, happier demeanor, reduced tremor, confident swallowing, increased expression, reduced weakness, relaxed muscles, regular digestion.

I enjoy working full time running my company of 25 employees. I'm re-engaged since starting the B1, no longer at times hiding behind my office door. Also started going out on customer appointments again. Yesterday went shopping for new car, and lunch with friends. Back to getting pedicures,manicures and my hair done without worry.

Life is completely manageable, almost normal. My husband is amazed at the difference and so am I.

Hoping that one thing still improves. My gait is good and has shown continued inconsistent improvement. What I'm looking for normal and consistent.

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Thanks for sharing. Hope you continue with the great progress. I’m contemplating the protocol. Curious how much macuna you take and if you take any RXs. Thanks.

Natasha

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Natasha, I take 2 to 3 40% capsules daily. No meds. I don’t seem to need a lot of B1 or Mucuna to get great results.

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This is a direct copy of an older post by RedwoodPark :

RedwoodPark

2 months ago

Last March, I started taking thiamine HCl intermuscular injections twice a week of 1 mg along with the vitamins recommended by Dr. Constantini. One of my friends lives in Rome and was able to help translate for me. He truly seems like a good guy. I saw the impressive videos that he filmed of his patients and was hopeful. I had not started taking levadopa yet, so I tried just with thiamine. I did not feel much improvement after one month, so I began taking levadopa. I am taking 1 x 3 times daily 25/100 carbi- levadopa. I feel like my fatigue is much better than it used to be but I am not sure how much the thiamine is helping me. I did stop taking it last summer for about two weeks and felt worse so I went back on thiamine. So I feel that it does help at least slow or halt the progression down somewhat. But my results are far from the miraculous improvements of the patients on his videos. Now that more people are trying it, it will be interesting to see how many folks actually do improve to the point of having no symptoms anymore. I am thinking about switching from IM injections to oral pills to see if it's better. And I wonder what is the B vitamin formulation to take in conjunction with the thiamine. For me, my condition varies so much each day except for one pattern and that is I feel best in the morning until noon and then it's downhill from there. Does anyone feel the same way? It's difficult to figure out what is the best combination of supplements and medication to be optimal.

By the way, thanks to everyone contributing to these blogs. Really helpful exchanges of information. Sorry I haven't spoken up sooner.

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Everyone has been pretty thorough in giving their PD history, and B1 progress. It would also helpful if people also include their weight. Thanks

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Height: 5'10"

Weight: 185 pounds

Doc Costantini consulted with me through email. He did not take into account my weight when he presented thiamin hci dose of 4g a day. I assume he based it on my current, at that time, medication/supplement choice.

He did not charge me a fee for his service. He is not selling supplements.

I have benefited greatly from the humanity and generosity of these humble doctors.

The improvement of my health was noticed by my dentist who commented on how well I was walking now after six months from last we had appointment. I report this because some of us miss the regression of symptoms until noticed by our friends and family. The person with Parkinson's may give up on this treatment too soon.

Go to my profile. Regarding B1, thiamin HCI, read my posts and replies. Click Follow. Learn of my experience over the last year. Discover my wellness as direct result of first choosing hi dose allithiamine then later thiamin HCI.

I have faith and a testimony that from here and the future I am going to be OK. Thanks to Doc Costantini who receives no monetary reward nor requires anything of me other than his happiness for my Parkinson progression stopped, symptoms under control.

I wish you will share.

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Will Dr. C consult via email too. I live in India. Is thiamine available everywhere? I suffer from intense hand tremors while in action makes me to loose confidence.

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Just for the record I add my case here. Now in week 6 at 2.5g Thiamine hcl. No improvement for 3weeks then all fatigue, stiffness and pain disappeared. Week 4 hand and feet dystonia also cleared. Balance is now good. No change yet to tremor. Dr C asked me to stop prescription meds so just on B1. I now get really vivid dreams that wake me up. Will update Dr C next week.

1 June 2018

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Hi, Wriga! Are you still doing well with thiamine?

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I started taking 500 mg. of thiamin May 26. Thursday May 31 1000 mg. Too quick a jump? Would Sunday (tomorrow) be too soon to go to 2,000 mg, I wonder? So far, I've experienced no changes. I take dopa mucuna, 3 capsules 3 times a day, but no pharmaceuticals. My one foray into C/L was a horror.

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No —not too far a jump...

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Beckey,

Thanks for sharing your experience. I am not on any meds and considering Macuna if needed. Would prefer to try thiamine protocol first. Would you share what brand of macuna capsules you use. Good luck on the protocol.

Natasha

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6/1/2018 Started 500mg THIAMINE HCL from Vitacost x 4 per day 2,000 mg. Dr C reviewed my brief email summary in one day and replied that 1. I should refrain from all other self prescribed supplements for one month, and 2. submit a video of myself talking (facial expression I suppose), walking ( up and back I suppose ), and responding to The Pull Test. I am on 5mg Selegiline, Mannitol, Coconut Oil and supplementing with these items which I will now remove for Thiamine trial: Omega 3, NAC 1200 mg, NAD+Reveratrol& Quertin , Vit D, Melatonin, Mag, andCoQ10. I will report back in 4-6 weeks.

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Hi. I'm just an observer of the Thiamin Protocol so far. I haven't found the courage yet to try such a high dosage, even though it's a water soluable vitamin, but I'm thinking I will email Dr. Costantini soon. One thing I have observered is some individuals start, stop, and change their dosages without notifying Dr. Costantini. I know they don't want to bother him, but I would think he needs to know how this is affecting each person to keep his case/studies accurate. Just a thought.

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laglag,

In fact I would not do it, the self supervision of the case is very difficult especially in the PD it is always necessary to have the doctor who follows you.

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There really isn't a reason not to contact Dr. Costantini as he has made it clear he will answer thiamine inquiries as quickly as he can.

Art

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Diagnosed in March 2017. Markers limited to right hand tremor and constipation. Started on Carb/Lev protocol 3X100. DaT scan reviewed by Mayo's Scottsdale, Az. 2nd opinion, Local Dr. palmed me off on assistant and I never saw the Neuro. Ask a question, take a brochure. The office jumped my PD med strength to 3X25/250. Metformin for diabetes and Carb/Lev a that level tore me up. Self regulated the Carb/Lev to half pills. Seemingly OK. Started B1 on 5/29 @ 500mg and jumped to 8 X 500mg on 4th day. Anecdotally, I began regular bowel movements for the first time in over a year on the 5th day and every day since. Under stress or observing stressful situations, I still shake but during day severity has dropped precipitously to the point my family remarks that "You don't shake anymore!". I am only 10 days into this experiment and it is far too early to attribute much of anything realistically but placebo or actual impact of the Thiamine on my system is welcome. We keep marching.

Would the Dr. be interested in those of us that have DaT scans for later comparison?

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st8farm,

I will add your question to my recent inquiry to Dr. Costantini and thank you for your contribution! I look forward to your updates!

Art

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I emailed Dr Constantini with my PD statistics and received a reply in about 14 hrs. Will start thiamine 2 grams twice a day tomorrow (have been taking 1 gram 2Xday for 4 days) . I have already noticed a significant decrease in left forearm pain which I've had over a year. Time will tell--fingers crossed.

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Please keep us posted!

Art

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I'm now at 2 weeks, taking 4 gms of B1 by mouth. Like everyone else, no longer constipated, but I wonder if that's more a mechanical effect of the thiamine on the colon, rather than an improvement related to the effect of the thiamine on actual neurological function. Did anyone on intramuscular B1 see an immediate effect on constipation within 1 week? Otherwise, I don't seem as foggy, I no longer fall asleep and nap in the middle of the day, my levodopa/carbidopa seems to last longer, and my activity tolerance seems slightly better. Strangely, I noticed I was having more trouble reading with my bifocals, and have discovered I can read up-close more comfortably and easily WITHOUT my glasses now--weird! Still, it's too early to declare it a success, as I still have occasional short(er) episodes of stiffness and limping on my affected side. Will update in another week or 2 as things progress (or not).

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Going into my 3rd week of 4 gms of thiamine, I began having an increase in the severity of my tremors, and breakthrough tremors between doses of my levodopa/carbodopa. So I have stopped my thiamine for a week, and will then restart at 2 gms. I've sent an email to Dr Constantini.

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Per Dr Costantini I restarted thiamine at 2 gms a day (1 gm 2Xday). After 2 weeks I tried increasing to 3 gms a day, but noticed more tremors and more stiffness again which affected my walking on my affected side. So it looks like I'm going to just keep it at 2 gms a day and continue to assess my results a little longer. On the 2 gms I seem to have more activity tolerance and noticed my affected arm is developing a natural swing again when walking. I might be developing a slightly better sense of smell also, but I'm not jumping to conclusions just yet. It's only been 6 weeks (with 1 of those weeks without thiamine while decreasing from 4 to 2 gms a day), so am hoping things will continue to improve. I'd say I've had some improvements in everything except my tremors. I'll do another walking video in a month and compare to my 1st video.

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Thanks for the update. I hope it continues to go well for you! Your experience is very similar to mine,

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marion11005,

You said, "more tremors" when you increased your dosage to grams/day. I was wondering if the more tremors was all day, morning, afternoon or evening or a combination of these?

Yes, I agree, no need to jump to conclusions. Just get your dose perfect and go from there!

Art

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My tremors would mainly occur right before my next scheduled dose of C/L and were significantly worse than the tremors I had before I started thiamine.

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Update: I've been on thiamine for 6 1/2 weeks with 1 week off in the middle for a dosage decrease. I'm noticeably better with more energy, and don't have to stop and rest twice while vacuuming my living room or sweeping the kitchen. I have return of arm swing on my affected side, and more flexibility. What really convinced me it was having an effect was when I noticed that I can now wash my hair with both hands normally. I had gotten to the point that I just didn't have the strength or flexibility in my hands to really wash my hair effectively. I think I am getting my sense of smell back too, but not significantly yet to say for sure. I still have room for improvement, and am hopeful that I'll continue to improve. I'll do another walking video in 2 more weeks and compare to my first one.

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marion11005

Thank you for the update ! It sounds like it is starting to kick in for you very nicely!

Art

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I'm currently taking one gram a day trying to perfect my correct dosage. I've noticed it's about 2 1/2 weeks after a dosage change that I get worsening of some of my improved symptoms. I think I will probably settle at 1 1/2 grams a day eventually, but am going to stick with 1 gram/day for at least 3 weeks before I go up to 1 1/2 grams. Incidentally, although I am left-handed, I hadn't been able to use a computer mouse with my left hand due to tremors and/or weakness for years--yesterday I realized I was using my mouse with my left hand without any problems. Also today with no problems. That's pretty significant to me!

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That's pretty significant to me too!!!

Thank you for the update and congratulations on the tremor reduction!

Art

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This is a copy of a recent post by pjokeefe:

I have been trying to order it from overseas as well with no luck and can't find the reason why the companies can't ship it to us. Anyway, I started Thiamine hcl about a month ago with success. I am feeling more energetic, less rigid etc. I am getting my supplies from Chemist warehouse and Discount Chemist. Brands Betamin and Betavit. Unfortunately these only come in 100mg (100 tab for $5 to $9 depending where you buy them) tablets so have to take a handful to get the right dose. I have looked up websites Fruugo Australia, Aussiewell and Swanson Australia. Fruugo say they have Solgar 500mg, 100 tabs for $32.95 plus postage but I haven't tried ordering from them yet as I have a supply of the other brands I mentioned. Hope this helps and best wishes.

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We get them from iherb online 500mg solgar we are in Sydney.

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We got them from vitacost

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This is a copy of a more recent post by pjokeefe in a conversation with RoyProp on 7/30/2018:

pjokeefe

2 hours ago

Great idea Roy. I have just clicked the join button. I watched a Netflix doco "Bleeding Edge" and this talked about, in a round about way, the power to change things in the medical world via the pressure of a facebook group. I can't thank you enough for bringing Thiamine to my attention. Now taking 2000mg, (only taking Azilect 1 mg) and it has changed my energy levels, thinking, tremors and rigidity, all for the better. I printed out info from this forum to show to my new neuro and he was very interested and is going to read up on Thiamine. I see him again in 2 months so will be interesting to hear his take on B1. He is an enlightened doctor, teaches yoga, meditation, holistic living to his PD patients. Not keen on pushing meds and asked if Azilect had made any difference (prescribed by previous neuro). Made me think and I came to the conclusion that I couldn't put a finger on any benefits from Azilect since starting it in Sept 17, apart from maybe very little progression of symptoms. Thiamine has made more difference since I started taking it in May 18.

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I wrote to Dr. C. at about 11:30 P.M. Arizona time and got the doctors response at approximately 12:40 AM same night. To get a good response in less than two hours from Italy was somewhat amazing to me. He confirmed my current plan and ask me to keep in touch.

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Dear fellow Parkie's I have question for anyone who is sure. Who is Dr Constantine? Is he a rile a medical Dr? Did anyone check his credentials ? What kind of a Dr will prescribe supplements to anyone who asks with out seeing them and in so large does .Is anyone sure if this is safe , before taking such enormous dose ? Ordering it free of charge is nice ,but whot is there for him ? Dr's usually don't offer their services unless they get some benefit from that. Please don't take this as a offense I am just asking to be sure that this is OK. Pardon me for my ignorance .

Maja

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Maja54,

No offense taken!

Here is a link with some information about Dr. Costantini who is a neurologist in Italy. There are at least four forum members who go to see him at his office in Viterbo, Italy and have done very well on his protocol!

healthunlocked.com/parkinso...

Art

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This is a copy of a recent post by Kimbo1962 dated 6/12/2018 :

Kimbo1962

2 days ago

I sympathise with you, my hubby had terrible muscle pains and inflammation for months....we then went onto Dr. Constantini Thiamine HCL high dosage protocol, the pain literally went in 24 hours and he has had no more pain or inflammation. He is not on any Parkinson’s meds now ( he did try a few but side effects were not good) he was diagnosed three years ago ( but neurologist said he had for at least 7 years prior to diagnosis). Thiamine most successful treatment for him, so grateful.

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I’ve posted my good results here already, but wanted to share this story. I’ve been on the Thiamine therapy for 11/12 weeks with great results including correction of balance. Results so great I was at a bat mitzvah yesterday, where I got a little ahead of myself with the wine, and my balance began to suffer. Interestingly, had I had the same amount of wine prior to Parkinson’s my balance would not have been affected. So my question is has my balance really been corrected?

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We must not forget that in any case the PD brain injury, ie the death of part of some dopamergic cells is always present.

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If I remember right and am not mistaken you asked for updates. In a previous post I stated that after only after 4 days on B1 I was able to effect daily bowel movement after more than 5 years of chronic constipation wherein in I was on an every 3-5 day cycle with overly hard stools and at the same time see a marked lessening of the hand shake. I recently had two dental surgeries one week apart (four implants) that caused me to revert to the previously noted cycle and at the same time more shaking. However, I attribute the temporary setback to the pain drugs, the anti-inflammatory drugs, the antibiotics, and the stress to my body and mental state. It seems I am very directly returning to the benefits of the B1 as the hours pass. I chart everything for myself and the physicians that I deal with. I would advise my fellow forum members to do this as well. Traditional medicine tends to scoff at what they don't know and you need to have empirical proof for them to consider. I am very encouraged overall with the progression of my experiment and hopeful and thankful for finding this ray of sunshine in an otherwise depressing landscape of Parkinson's literature and experience.

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This is a copy of a recent post ( 6/20/18) by Xabojuro2 describing their thiamine results under Dr. Costantini at his office:

My trip to Viterbo to see Dr. Antonio Constantini -Sharing info

Xabojuro2

Xabojuro2•2 hours ago•

13 Replies

My trip to Viterbo to see Dr. Antonio Constantini -Sharing info

I will use this post to share information about my recent Dr Antonio Constantini 's visit.

I am a little bit busy at work and will not have the time to write it all up on in one session. so bear with me, please. in the meantime please ask questions and I will do my first answer.

1. Background:-

I was diagnosed in 2013 but I think I had PD a lot longer. I am now on a cocktail of medication to get me through the day. I am also lined up for the DBS. I am 52 and lucky to have access to a good medical team.

I discovered the work of Dr Antonio was randomly searching for complementary and alternative treatments. but what convinced me to go and see him is healthunlocked discussions.

2. How to get there

It will very much depend on where you travelling from but if you are travelling from EU zone, you can travel to Rome on the cheap.

There are plenty of budget airline options including the likes of EasyJet, Ryanair and others.

We flew with Vueling Airlines.

we pre-purchased our ticket trains from ItaliaRail (https://www.italiarail.com/) website. The train from Fiumicino Aeroporto took us to Roma Trastevere where we caught the regional train to Viterbo. on the way back we again changed at Trastevere. A return journey for 2 cost us 28€. An Italian friend told us to avoid Sunday travel due to limited services. we travelled on a Saturday.

our train travel was slick, on time and super convenient.

tip: print all you train and flight tickets. do not rely on your mobile. avoid the stress of your mobile going flat when you really need it to function.

tip : take the wheelchair assistance even if you don't need it. i don't need it most of the time but on a couple of occasions i went through security checks whilst going through an off-period. i made life difficult for me and everybody around me.

3. Treatment

the treatment is as described in this forum. basically, B1 vitamin via injections or pills. in my case, I was given a booster shot equivalent to 12 g on my first visit. I then had to wait for two days before I started my course of 3 g per day. Dr. Constantini also recommended that i stop taking the assortment vitamins that I was consuming.

4. Did it work?

Yes But see the section [4]

Yes. here is an extract of an email I have sent to Dr. Constantini commenting on improvements that I have noticed in my first week following my poster shop injection and the subsequent daily dosage of 3g.

" i am feeling really good and here is a summary of the improvements i have noticed;

1. I have so much energy and for the first time I can subconsciously forget that I have PD

2. My body is relaxed and i can do more in the gym

3. I can function in the mornings before the medication

4. I am more cheerful and productive at work

5. family and work colleagues can see the difference

6. I feel that I have the upper hand on PD

7. [removed by the author :-)]

8. I am active in the evenings and can do more (in the past I did not and could not do much after work)

9. thigh muscles are relaxed and can do more stretches in the gym

10. I am recovering quicker from off-moments

11. I am sleeping well (deep solid sleep but still getting up at 4/5 am)

12. On the way back from Italy, I did not need assistance in the airport (i normally I use the wheelchair assistance service)

13. I can walk longer distances

14. I am having a long sustained 'good period'. this is now stretching into the 2nd week. in the past, a good day was normally followed by a bad day).

15. no negative reaction to B1 (taking 1500 mg at lunchtime and 1500 . mg in the evening)

16. got my creative mind back (i write short stories and almost all the time generate new concepts and ideas but lately I felt I did not have much of the creative juices left in my body)

17. i am taking less medication and vitamins

18. for the first time in my life I felt i can smell what i am eating (only once)

5. what is next

At the end of the second week, things changed. I am now feeling not as good as the first two weeks following my initial consultation treatment in Viterbo. Antonio thinks that this could be due to dosage. I also think that maybe my body reacts better to injections. so the plan is as following;

- stop taking B-1 pills for three days

- then 100 mg thiamine injection once a week for 5 weeks

- after 5 weeks hopefully, we will figure out the right dosage

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As of a few days ago I am off the thiamine again. My blood pressure got high even though I was only taking 500 mg. When I wrote the doctor he told me to stick with a thousand a day but I cannot do it because of my blood pressure. So after stopping for probably week or two weeks I'll start again with 500 mg. If anyone can explain to me why my blood pressure gets so high from thiamine I would really appreciate it. Previously benefotiamine

did it also. It took me a while to find out that was what was doing it . Mary

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This is interesting. I did a google and it seems that "high dose thiamine supplementation may have beneficial effects on the blood pressure of individuals with hyperglycemia at early stages, and may have a role in the prevention of further vascular complications."

sciencedirect.com/science/a...

This article provides a little more insight into the relationship between blood pressure and thiamine.

hormonesmatter.com/diet-ind...

All indicator is that thiamine has a normalizing effect on blood pressure.

Interesting enough. I have a friend who's blood pressure is "always very high" that he was hospitalized for a month when he was young when doctors was thinking he was going to died. They try to bring his blood pressure down to "normal". This is went he started to get sick. The more normal he was, the sicker he gets. They finally realize that normal blood pressure for him was high for others. Not saying that that is you, but something to consider.

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Thanks for writing. I tried a 500 mg pill again and after it this time I felt really sick for couple days. So I think for me I'm not going to be able to take thiamine HCL.

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Sorry to heard that. Have you try other forms of B1?

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There is a company called Pure Encapsulation they do not put additives into their capsules. I think I might order a small bottle and see if I do better on that.

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parkie13,

Have you let Dr. Costantini know what your current results are with regards to the increased blood pressure , even at the "extra reduced dose"? If not you should, especially if you are going to try and take more! It is just an email and he said he will answer all thiamine questions!

Art

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Yes, I will write him again. Thank you

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A-D,

You clearly got benefit with a very low dose, so it seems you may have to fine tune your dose or deliver it more slowly during the day. One possible way you could do this is by emptying a 100 mg capsule or two into a sweetened drink like Gatorade since the powder is bitter, say a 500 ml bottle of Gatorade and drink this throughout the day to give a slower release of the thiamine? At a minimum, you could drink half the bottle with breakfast and the other half with lunch? In any case, since you did get benefit, it certainly seems worth experimenting with the low dose and definitely discussing with Dr. Costantini again!

Art

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Hi A-D,

I misunderstood what you were saying. I thought you were saying that you saw benefit at very low dose, but actually it was at 2 grams per day. Have you tried going to 1.5 grams or 1 gram per day? Because you start to develop problems after several days, the 2 grams/day seems to be too much for you. The fact that you got benefit, seems like it would be worth the time to see if a lower dose may work for you......just not a couple of hundred mgs. Dr Costantini said too low of a dose will do nothing at all and too high can worsen symptoms.

Art

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Hi Aussie-Doodle,

How long does the 200mg B1 last you? Maybe instead of taking it every day, you should take it every other day or every 3 days? Since you already working with Dr. Costantini, you discuss with him about stopping other supplements and see what happens.

Also, I don't know if you can use injections where you are, but something else to explore as well as other type of B1.

Good Luck and keep us updated!!

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If you go with injection, try with lower dosage to see what your reaction is first.

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One of the side effects that they mentioned is shortness of breath. I had shortness of breath, however I attributed it to my high blood pressure. Also at times I did feel some anxiety, and usually I am not an anxious person. I have been taking melatonin 20 mg before I go to bed at night for a few months now, it seems like it helps with sleeping. But my stomach feels upset, and I started having heartburn too, something I never experienced before. So I don't know what is setting that off. I'm really stumped. Mary

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Mary, as you may know, most PWP experience anxiety and PWP who are tremor dominant, which I am, experience more anxiety, which I do. I guess the only way to find out is to discontinue the B-1 and see if you less anxious, than resume and see if you're more anxious.

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What I have noticed that I become anxious when my blood pressure goes up, my pulse rate goes up, and my stomach and my intestines are upset. I start doing the calming breathing and that helps. Thank you for writing Mary

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parkie13,

Some people experience stomach upset with melatonin, but on the other hand, some people experience gastro relief with melatonin. It seems strange because now they have determined that melatonin is produced in the gut in much larger amounts than in the pineal gland. You just have to try it and see if it is for you or not. You can always discontinue for a bit to find out if it is the cause or not.

Art

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Thanks Art, I have been trying that. Sometimes my stomach is upset and sometimes it's not so it kind of reflects what you are saying. And I misspoke, I do not take 20 mg I only take 10 mg a night. Mary

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Sometimes I get a little stomach upset if I take melatonin close to magnesium or if I take an herbal supplement called skullcap which has anti inflammatory properties, so I have given up using skullcap in favor of the frankincense derivative boswellic acid in the more effective forms such as AKBA and other extract forms.

Art

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I do take magnesium before going to bed

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Even though I am Tremor dominant, my Tremor is not too bad so far. I have noticed my rigidity is worse, trying to put my arms and hands behind my back. The other thing I have noticed when I stop melatonin it stops the heartburn and the feeling of upset stomach and intestines. Somebody on this list mention that melatonin can affect you that way so maybe I'm going to need a little breather from it. I was also thinking that maybe its the additives in the capsules. I don't know if those additives really affect you or not.

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No, I am taking Vitacost vitamin B1 as thiamine HCL. It has gelatin microcrystalline cellulose vegetable stearic acid and vegetable magnesium stearate. It has the same ingredients as thiamine HCL that other people take although they are different brand. Mary

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This is a direct copy of a recent post (6/21/2018) by Lucal who just started thiamine therapy at Dr. Costantini's office in Viterbo, Italy:

Good morning to all of you.

I had my visit yesterday with Dr. Costantini and as promissed ,

I'll share my impression.

Dr. Costantini is really confident about his therapy. The visit was very accurate . He stated that he can stop progression of the disease, but can not recover what has been lost. I also had a chance to speak with a patient that has been diagnosed more than 5 years ago, it symptoms seems to be stables at what used to be at that time. That patient was really gratefull to the doctor. What else... since my simptoms are still mild , it started me with 1 injection per week of 100 ml thiamine ( b1). I will visit him again by the end of july. I did not get a lot information about the scientific base, and did not understand very well why should simptoms regress if it's not curative ( he explained something about partial restore of damaged – not death – neurons ). He showed me a lot of success stories. About my personal feelings , I can say that he really believe in what he does , he is confident he can help. I can say after the first injection my left side ( the one more hit by the disease ) felt some relieve , and my mind was for sure more clear and have a better mood. Even if I do not deny that it could be a placebo effect ( which is consistent with the speed of the effect ) , I'll keep doing those injection and visit Dr. Costantini again by the end of july. He said he can bring me back to no symptoms in 3 months. It actually scares me that on this forum, apart 2/3 cases, no one reports success stories in the long run, do you have any reference ? If you have any question , just ask. Sorry for my english , I did not have time to use google.translate......

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Any updates from Lucal?

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Not yet, but it hasn't even been a week. Usually two to three weeks gives a better idea and a month or two even better. In any case, he said he will update!

Art

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Just came back from a two weeks holidays in Portugal ( average temperature there was 40° celsius ).Driven for more than 2500 km and changed 6 hotels, with two young daughters ( 9 and 11 yo ) and my wife feeling not so well.Not a relaxing holiday. Nevertheless , some days like yesterday I felt worsening of my symptoms that, from my point of view, are not related ONLY to stress, like fatigue and lack of motivations and pain on my left side ( the more effected ). I'll visit doctor C second half of september. Not very happy. Ciao a Tutti.

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26 days in: Based on a pull test Dr C wants me back on 3 grams. Still calm, reduced shakes but bradykinesia not improving may need small dose of levodopa. Report in a month

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I wanted this post to go to the top of the thread. So I did not add it to my previous posts.

At 4 weeks of 2000 mg daily.

-improved balance almost normal.

-relief from constipation.

At 8 weeks of 2000 mg daily.

-swift movement instead of slow motion.

-ability to get up from a chair or out of the car with ease

-facial expression and interaction with people feels normal, noted by others.

-shopping and outings without tentative behavior.

-toe curling relieved and considered minor.

-left side arm weakness and pain eliminated.

At 12 weeks of 2000 mg daily.

-improved gait.

-left side foot pain eliminated.

-reduced tremor (my tremor was a 4 to 5 on a scale of 1 to 10. Ten being the worst. My tremor is now a 1 to 2, and mostly a 1)

-swallowing confidence.

-voice strength and deflection in tone.

-At work interacting with both customers and employees.

-high energy

-getting regular pedicures and manicures, no problem.

-Writing improved,

-Muscles relaxed.

-Driving comfortable.

I do use some Mucuna, but more recently even forget I need that throughout the day, because my symptoms have been so suppressed.

3.5 yrs dx. no pharmaceuticals. My husband is amazed.

Constance

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So happy for you, Constance! My husband is starting B1 injections middle of next week (had the run around trying to buy B1 injections). He is also pharmaceutical free, but he is taking MP and vitamins. What kind of MP are you taking and % of L-Dopa?

Thank you.

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Despe I’m using 40% capsules taking 1-3 daily with EGCg. They seem to work very well. I believe I have high absorption which is also why the B1 dose I take works so well.

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Did you find B1 injections in the US?

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I finally did! McGuff Compounding Pharmacy, CA, thanks to Julie! I had a prescription from our FD, took it to CVS neighborhood drugstore. They said they didn't have it on stock, had to order it. I was waiting for more than a week, and kept getting the same story, "We will have it soon, tomorrow, by Friday," etc. Finally Julie suggested that I could have the prescription transferred to this compounding pharmacy in CA. I did ask for the transfer, they fussed a little, but they finally transferred the prescription. Got a hold of the pharmacy in CA, and they said that the vials will be arriving this coming Wednesday. I had also asked my alternative medicine doctor to get the B1 vials, said he had to order them, I said "Fine," but he still hasn't received them from wherever he had to order them. I was so desperate I ordered some from Germany, too. I have three different sources for getting the vials, but I haven't received any yet!

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Oops, sorry, I have just read your post above about your MP intake.

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This is a copy of a post by Cons10s on 07/02/18 :

Cons10s

an hour ago

Thiamine HCI Normalized my swallowing and bladder issues, in the third month on the therapy. Also corrected body temperature control issues. No more arm and a leg pain and weakness. Voice deflection and tone also normalized.

I do not use pharmaceuticals, so cannot comment on that topic.

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Constance, remarkable. Lucky you. Were you able to enlighten Linda Ronstadt?

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MB, I’ve not stopped working on that, but it’s a little slower then hoped. My husband and I are involved socially in Silicon Valley and we’ve been reaching out. No luck yet.

Worst case scenario is I purchased tickets to her September 29th show “ a conversation with Linda”. I would hope to deliver some information to her there.

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What about Linda Ronstadt? Is she another PwP?

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Yes,and so is Neil Diamond.

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Thanks, that was fast! :) I knew about Neil Diamond.

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I have been taking thiamine for one month and am just now experiencing major improvements. For the first 3 weeks, I took 3 grams of Solgar hcl per day. A few days ago, I reduced it to 2 grams per day and almost immediately felt better. I reduced the dosage because I felt as if I had plateaued and I had a weird sensation in my right arm and leg -- they both felt as if they were asleep and I felt a little "jittery". I was just diagnosed in May and my symptoms are quite mild, but the thiamine has made me aware of symptoms I wasn't even conscious of before, which I'll explain. Here are my symptoms and what I have noticed:

RIGHT SIDE BRADYKINESIA. This has been greatly improved. My right arm barely moved when I walked, I shaved mostly with my left hand, and I had subconsciously begun texting with my left hand. ALL of those symptoms have been alleviated. My right arm swings as naturally when I walk as my left arm and I am now back to using my right hand as I always did.

MICROGRAPHIA. My handwriting had deteriorated so badly that I began having my wife write checks to pay our bills, etc. It's still not back to normal, but it's much improved. I am now able to write checks again without total embarrassment. I am a semi-retired real estate attorney and was accustomed to notarizing and signing dozens of documents in real estate closings. I realize how fortunate I am to say this, but micrographia is my most significant and disturbing symptom right now. The improvement has been very encouraging and I hope it continues to get better in the weeks ahead.

SENSE OF SMELL. Three months ago, I would have said I have no sense of smell. Now, although it's not good by any means, I can smell some things...like soap, shampoo, and perfume. I think at least some of this improvement might be attributed to Vitamin D supplements -- which is the only supplement other than BI which I've taken during the past month.

FATIGUE/ATTITUDE. I don't know (nor particularly care) if it's "placebo effect" or actual improvement, but I am more energetic during this past month and my attitude is MUCH improved. As a lawyer, I have been trained to anticipate the worst case scenario, and I'm very aware that we have an incurable, potentially disabling disease. I'm also aware that many of you have tried the "miracle cures of the month" before only to be disappointed later, and I'm aware that Dr. Costantini appears to be standing almost alone in his promotion of B1. HOWEVER, he has not charged me a dime for frequent emails to and from my chiropractor and me, he does not sell the vitamins, and he still appears to have a successful medical practice in Viterbo. He's a reputable doctor and he specifically told me, "In patients like you, we expect complete regression of all symptoms, motor and non-motor and stopping the progression of the disease...You'll be fine forever." It sounds too good to be true and I'm not nearly so naive as to believe it completely, BUT I have no doubt that I am much better today than I was one month ago...and I am committed to taking this one day, one month, and one year at a time. At least for now, I am very encouraged. If you are still "on the fence" regarding B1, I encourage you to give it a try. I'll make a new reply to this post after another month.

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This abstract suggests that vitamin D and thiamine work together:

ncbi.nlm.nih.gov/pubmed/267...

and this one suggests that vitamin D may help to slow the progression of PD

academic.oup.com/ajcn/artic...

And this post explains why PWPs can potentially benefit from vitamin D:

healthunlocked.com/parkinso...

Art

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Jimcaster, Not to worry anymore. " As a lawyer, I have been trained to anticipate the worst case scenario, and I'm very aware that we have an incurable, potentially disabling disease. "

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Hi Jimcaster,

Great news on your improvement! May I ask what your age and weight is? I understand that that is one of the factors that affect the dosage of B1 HCI.

Regards,

Mon

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Sure! I am 55 and weigh 193 pounds...down from 232 at the beginning of the year. I should also add that I exercise intensely at least 3 days per week and have adopted a paleo diet, both of which also seem to have helped a lot. I'm not just sitting on the couch popping B1 capsules. :-)

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Hi Jim

Keep it up.

Kia

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Thank you for encouraging and inspiring me.

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Hi ! Can you tell me how much D you take, and is it D3 ?

Thanks

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Sure! I take 1 teaspoon of Apex Energetics Ultra-D 5000 each morning. It contains 5000 iu. It just says Vitamin D on the label, but I believe it's D3. It also includes 650 iu of Vitamin A, 125 mcg of Vitamin K, and 1 mg of B6. My chiropractor recommended it. I stopped all other supplements and vitamins except B1.

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Thanks...do you know why your chiropractor recommended it ? I too stopped all other supplements except Mucuna, and B1. They were causing intense fatigue, and lowering my bp too much. I kept with the D, but eventually gave it up as it didn't seem to help my fatigue anymore...probably 10k dose was too much. ( I know it can be toxic at high doses)

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He recommended it because blood test revealed that I had very low levels of Vitamin D. I probably should have limited myself to just B1, but I had also read studies suggesting D would be helpful and since my levels were low, I thought I'd continue with that...

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Jimcaster, Your post was so encouraging! Thank you so much for taking the time to type all that up and post. My husband has been experimenting with B1, trying to find the right dosage. He started with 4g a day, made him feel bad and jittery. He cut back to 3g, still not feeling well. So after being off B1 for a few days, he is trying again with 2g a day, one before breakfast and one before lunch. He weighs 160 and 5'9" so maybe he needs a smaller dose than you. He is 63 yrs old, diagnosed 6 years ago. We are going to research taking vitamin D as well...how much do you take and is it D3?

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Good luck to you and your husband! See my reply to Kerrington regarding the Vitamin D supplement. I also cut back from 3 grams to 2, at least for now, and it seems to have helped. I have numbness/tingling in my right forearm and I also felt a little jittery so I cut back. All in all, I am very encouraged...but also very cautious about getting carried away. One day at a time... :-)

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tbirchf,

Here is a post about vitamin D and PD that you may find helpful :

healthunlocked.com/parkinso...

Art

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Wow, that is a lot of vitamin D info! Thank you so much.

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Thank you for sharing your experience with Dr. Constantini. I wrote to him for the first time yesterday and already had a question from him in my email when I woke up this morning. I will keep everyone posted as I proceed.

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I have two (2) family members who is diagnosed with Parkinson's - my father and my uncle from my mother's side. I started my father on B1 HCI 2.5 weeks ago and my uncle just started 4 days ago. Here are the observed results.

My Father:

- Age: 79 diagnosed with PD at age 61 but showed signs at age 59

- Weight: 143 lbs.

- Current prescriptions: Rytory (Carb/Levo), Azilect, and Donepezel.

- Supplements - Was on Magnesium, B12 and Niacin. Stopped since starting B1 HCI. He is still on Alpha GPC to help with his dementia.

- Started on 2g (2 x 1g) per day on June 10th.

- Observations - I haven't seen my dad for since before he started his B1 because of children's events. These are the changes I observed over a 5 hour visit.

- Swallowing - He had problem drinking water and would chock/cough on it. He no longer cough.

- Takes 2-3 minutes just to get started in taking his pills. He now takes his pills immediately without coughing.

- Not sure of his constipation. He said it has improve. Can't confirm because of his memory and dementia.

- It use to take him 1-2 hours to eat a meal usually and would not be able to finish it. Now, he finish just a little after us. Again no choking or cough now compared to before.

- He normally complaints about weakness, sourness, etc about 30 minutes before his medication - med not lasting. He would not be able to walk or function properly till an hour after his medications. Now, he doesn't complaint. In fact, my mother forgot to give him medications for over 2.5 hours. He was still functioning as through he had taken it. I didn't even realize he was passed his med time given the way he was moving around.

- He usually falls asleep all the time - middle of eating, while someone is talking to him, while his grand children is play around him, etc. This time around, he did not fall asleep during dinner. He watched his grand children play. He gave a real smile. He had facial expressions.

- He usually has sleep disturbance - hands moving, jars moving, etc. During his nap, I didn't observer any of those. He had a more calmer sleep.

- I know this is not a placebo effect because of his dementia.

- It is still early, but I am hopeful. At a minimal, the B1 HCI is making the C/L more effective. Best case is what everyone is saying, that it halts the progress of PD.

- Next Steps: If things continue to improve, I will ask his neuro to reduce his medication and start him back on his supplements.

My uncle:

- Age: 63

- Weight: 210 lbs (?)

- diagnosed at age 61 with signs since 58 or earlier.

- Started 6/22/2018 on 2g (2 x 1g). I asked him to increase to 3g/day. Not sure if he started that already.

- He is a bad case. He falls regularly as in 4+ times a day. He is breaking almost everything from blinds, shower doors, chairs, toilet seats, had to stop driving because he keeps damaging it, etc.

- As noted by him, his legs feel stronger. Not sure if his falls has decrease or not.

- It's only a few days and dosage is too small for him. I have the most hope in B1 helping him because of his age and relative early in PD diagnose (within 5 years) although his is a bad case.

_--------------------

July 27, 2018 - update

My father's condition slowly got worst over the past 2-3 weeks. So slow that we thought it was because of his toe injury. I have stop his b1. Will restart after a week with 500mg 2 times a day. Which is 1/2 his starting dosage about 2 months back.

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For my personal integrity I can not see a thing and to say I have not seen it. It is true that sometimes an idea of ​​the past that has worked acts as a deforming mirror and makes us see things from an arbitrary point of view, okay but here success stories are multiplied even with the use of pills that if you allow is a slightly worsening alteration of the use of thiamine hcl compared to the original use of injections, in my opinion.

can one really close one's eyes and do nothing in the face of so much suffering, even having only one hope? thiamine is more than 100 years old.

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Yes, B1 is helping some, but there are many (some who have emailed me) that tried and had adverse reactions including elevated blood pressure and allergic reactions or no positive benefit. People should continue to pursue ALL solutions not just B1. B1 is PART of an answer. It is not THE answer. Keep your mind open and keep researching and keep moving. Joe

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Hi Joe,

-

I know you're using the b1 , 1000 mg, in your protocol for SCA1 because you wrote it, it is a big part does it work for you too?

We suffers from Parkinson's must also use levodopa and other medicines according to the cases, which makes a big difference, which medicines do you use?

I saw that you wrote about 4 months ago that 400mg of b1 had raised your blood pressure and you stopped taking it, but then you increased it to 1000mg day for three months why? Does not the pressure increase you more?

what benefits have you had to bring it to such a high dose despite the side effects?

How has your UPDRS test improved with your protocol if I can ask?

Gio

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Sorry Gio - Just saw the question. I tried Benfotiamine initially not thiamine HCl. Thiamine HCl did not increase my blood pressure.

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Good advice! I completely agree.

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What good news.

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Any more updates since your last post pls?

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MWLE,

Thank you for the post on your father and uncle!

You may find this article useful for your father :

sciencedaily.com/releases/2...

Art

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Thank you Art. I wish they tell you which spies of the bacterias they use. There are many species of Lactobacillus and Bifidobacterium. Thankfully, these two bacterias are in all of the probiotics that is OTC in the US.

I have been looking into which bacterias give the benefits and when to start my father on it. I haven't because of is problem with swallowing and the pure number of pills he has to take. Now, with the B1, I should be able to start him on it shortly after his doctor reduces some of his medications.

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MWLE,

You may have missed this sentence in that article :

Half of the patients daily received 200 ml milk enriched with four probiotic bacteria Lactobacillus acidophilus, L. casei, L. fermentum, and Bifidobacterium bifidum (approximately 400 billion bacteria per species), while the other half received untreated milk.

Art

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MWLE, thank you so much for your detailed descriptions.

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Fantastic news! Hope you experience further improvements.

Hopefully, I will receive the B1 vials today so my husband can start the B1 protocol tomorrow. According to Dr. C. he's got to have two injections weekly, but don't know yet how long he needs the injections before he switches to oral B1.

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This is a direct copy of a post by Lionore on 6/26/2018 :

I can’t thank you, the members of this community, enough for helping me address the symptoms of PD. I was diagnosed in 2015 but had left hand tremor for two years prior and a gradual loss of smell since around 2003. Yes I know that PD is progressive and incurable. So is the aging process; I am 71 after all. BUT, I feel better than I did three years ago when my well respected MDS told me that he was sorry with quite the woeful look on his thirty something face. Well, I decided to not curl into a ball and whimper. I took the advice of you folks:

Exercise, exercise, exercise, all kinds, mix it up and have fun

Drastically eliminated sugar, alcohol and processed food, eat mostly organic, mostly plant based diet, lots of water

Started, one by one, NAC, CQ 10, vitaminD3, green tea extract, turmeric, B1, magnesium

Pushed back when Dr wanted to start me on a dopamine agonist, got on Sinemet and rasagiline

Started Qigong

Connected with a spiritual group

Worked on eliminating stress (retired finally two years ago)

Reminded myself about all that I’m grateful for

These symptoms that were pretty troublesome have all but disappeared:

Toe curling

Pains in my left foot

Poor sleep

Inability to straighten my left arm

Extreme fatigue

Difficulty swallowing

Muscle spasms and Charley Horse on the affected side

Stooped posture and stiffness while walking have much improved as noticed by people close to me

Tremor is still on one side and is much improved.

Yes, I know that the first five years are the honeymoon period. Don’t we all deserve a honeymoon? I read this board every day, and feel great fondness for all of you who post and respond in an effort to connect, learn, and help one another. Thank you.

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The following are three different posts by ion_ion that I copied to this thread. The first one was posted in early April and the second one was posted in early May and the last one was posted June 28th. As you can see from these posts, it can take a little bit of time to get the dose optimized, but if you have the patience to do that, it may be worth the effort!

1st post:

I started Thiamine HCL on 3.24.18, 2g a day, 1g in the morning and 1g at 2pm. Yesterday was the first day I noticed some improvement including the tremor. Today was good, too.

I'll see if the things keep improving or is just something temporary. I did a B1 blood test but they told me the results will be in 10 days. I did vit D and I was low - 62, even I was taking 1000IU a day. I'll increase it to 2000IU a day.

2nd post:

Partially helped with tremor but helped with mental and physical energy and eliminated the anxiety and depression and constipation.

I emailed Dr. Constantini and he told me to stay on this dose for now.

3rd post :

Diagnosed a year ago, symptoms started two year earlier. I have RH tremor only. I went down for few months after diagnosis but I took a positive attitude, started exercising and in March started Thiamine. Also I'm exercising how to ignore/control stress. All of these helped a lot, especially Thiamine. I also take 2000UI/day vitamin D3. No other meds. I have days with almost no tremor and found out 1.5g/day thiamine being the optimum dose.

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This is an update post by ion_ion on 08/04/2018:

ion_ion

ion_ion

16 hours ago

It does work for me, boys and girls! I'm much better than a year ago. I do not take anything except Thiamine. The c/l and the amantadine ,two motion disorder doctors prescribed last year, already expired and I threw them into garbage.

Yes, if my dose is a little higher I get skin rash on my abdomen and maybe the tremor comes back stronger. I adjust my daily dose between 0.5-2g/day, sometimes with 1-2 days breaks based on feeling and the intensity of tremor. No more constipation, no more urinary urgency and frequency, no more anxiety and depression, no more extra saliva, very good sleep and much less REM with ugly dreams and the most important - CLEAR MIND and thinking so I can do my job as a software engineer. Also the fatigue is gone. I have a spring gun to exercise my hands. Last year I could not do a single push-now I can do 50. Do I need confirmation by scientific research!? Yes, it will interesting, but otherwise I don't give a shit!

Good luck everyone!

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This is a copy of two posts by KMay, one on 6/28/18 and one on 6/29/18 about thiamine as part of her regimen:

First post:

KMay

7 hours ago

I've been taking Restore Gold since September 2016. I began taking it 10 days after my Parkinson's diagnosis, and 5 days after starting Sinemet, and seem to be doing well. I'm tremor dominant, and really don't seem to have progressed since diagnosis. My neurologist has told me that he would never know that I have Parkinson's. I also take vitamin D, vitamin K, and Ubiquinol, and recently began taking thiamine.

I don't want to give anyone false hope--it may just be that I've been slow to progress, and the so-called honeymoon period will end with a bang one day. I firmly believe in the "old saying" that it you've seen one person with Parkinson's, you've seen one person with Parkinson's, so what works for me may not work for someone else. I just wanted to share my experience.

I also want to thank everyone who has worked so hard to gather the information in regard to thiamine. It sounds promising!

Second post :

I'm currently taking 2.5 grams per day of thiamine hci, and have been for a month. I feel that it has really helped with stiffness, and I just feel better in general.

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My PD background---

About 10 yrs ago........

Noticed right hand shook when I became angry, annoyed, anxious

Began with sporadic hand, thumb, toe,foot spasms.

7 yrs ago rt hand weakness, mild, persistent tremor, thumb tremor, cd will any right hand finger to move...weird. I found it interesting, but worrisome...

Rt foot turned outwards, noticed unexplained anxiousness.

During the 10 yrs I researched, took various key supplements which I believed helped, but eventually not enough...btw, I've been a vitamin taker, healthy organic diet, no meat, or poultry for 20 yrs.

2-3 yrs ago heralded in loss of rt hand dexterity, slowness, in ability to rise easily from chair, tremor increased, much anxiousness, minor balance issues, worsened shoulder stiffness, and rigidity, total fatigue. No matter how much I walked, exercised, each new day felt like I was starting from the beginning.

FAST FORWARD TO 12/2018 WHEN THIS SITE IS FOUND

I started with 50 MG 3X DAILY ALTITHIAMINE & 1/4 tsp, 3x daily MP 4 to 7 % dopa

Seemed to be helping some with energy, & tremor

A month or two later, 3/2018 went on 2GMS THIAMINE HCL, quickly WORKED UP TO 2 GMS, 2x daily.. No side effects, also increased MP powder to 1/2 tsp 2-3 x daily. By May 2018 NOTICED improvement in balance, stiffness, rigidity, pain, while MP helps more with tremor & anxiousness.

Still biggest hurdle, little energy persisted.

TOOK B COMPLEX with minerals, coq10, D, cur cumin, with B1 in am. An hour, or two later wd nose dive.

Tried 3gm B1, tried 2gm, took off for a few days, got worse,

Resumed 4 gms, felt better, except continued with huge fatigue.

Tried stopping all supplements except b1, & MP.

Initially helped, then more fatigue.STILL , THEN stopped... KEPT OFF OTHER SUPPLEMENTS

Tried D with the b1 and MP, HELPED with energy for 2/3 days.

JUNE 30, 2018

By now reduced b1 to 1GM, 2X DAILY, and 1 Magnesium, L THEONATE along with MP. SO FAR IT'S WORKING...ENERGY LEVEL MUCH IMPROVED. KEEPING FINGERS CROSSED. When I stop taking b1, and mp all issues resurface. Foot still out,right hand fine motor is so so.

I still take the other supplements, but onl y once/twice weekly.

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That is a really good and usefulreport and great news on the improvements !! I like the way you are slowly and methodically trying to dial in your dosage for best effect! If you don't mind saying, what is your height and weight?

Thank you very much!

Art

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5'2" 140lb

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I started B1 2 weeks ago. One gram in the morning and one gram in the afternoon. I feel more energy especially in the morning. Also noticed more clarity in my thoughts and better focus. I don’t know if this is a placebo effect or not. If I could arrest the progression of my disease I would be so happy. I’ll let you know how it goes...

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I understand the interest in B1 and a person with 10 years of Parkinson's, I would love to believe it is a magic bullet. I cannot find the evidence to back this up unless somebody is deficient in B1 because of Diet. Somebody quoted "weareparky" research. I met them in Rome and told them that their resaerch was having a big impact. They were surprised as they themselves stated it was only usefull in certain circumstances and their "research" was not scientific. So I spoke to the leading authority on this in Rome Fabrizio Stocchi - Again he said that there was no concrete reason or research. I then checked with Dr. Anna Zecchinelli (MIlan working with Prof Pezzoli and got the same answer). I am sure that my less than enthusiastic response will be greeated with a hail of dismay. I work everyday with Neurologists and people with Parkinson's (also with Parkinson UK). I will translate what DR Zecchinelli said. She is a Nuerologist I hold in high esteme. If it works for you, great, take it and carry on but it should be added that Diet and CORRECT excercise are far more Fundamental.

Alex

European Parkinson

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I bet the neurologists you hold in high esteem prescribe a lot of conventional meds. . . Dr. Costantini is also a NEUROLOGIST whose only concern is his patients' well-being, not $$$. Would your neurologists offer their services for free???

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Hi Quintin can you please expand a bit on what would be CORRECT exercise for PWPs some baseline guideline will be really helpful thanks for your support

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Quintin,

You said the following :

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

' She is a Nuerologist I hold in high esteme. If it works for you, great, take it and carry on but it should be added that Diet and CORRECT excercise are far more Fundamental.'

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

I don't think many people would argue that point at all!

People who want to wait for the concrete evidence should. Nobody is telling them otherwise.

Art

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Well put.....indeed I would add try anything logical and if it makes you feel better. Why wait for research!!!

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What is the downside to trying a vitamin with a very good safety profile if somebody wants to take that risk?

Art

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Indeed, I am agreeing with you. As long as you do not ignore all the things research has already proven. We estimate that about 18% of people get some or good benefit from B1, not exactly scientific but worth a punt but Excercise, diet and lifestyle must come first.

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I’d like to know who “we” are? Quintin, you seem to be an educator or perhaps researcher? If it’s handy,

Can you enlighten me/us on the reference for 18% please?

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if you come back to Italy come to see me, I iive near Milano so you can see with your eyes because B1 collects interest in Italy as you see from this question to dr Pezzoli. I use b1 (injections 100 mg 2 time at week) about 3 years and change my life after one hours Gio

forum.corriere.it/parkinson...

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Hi Amy... as I said 18% is not a scientificely valid figure. As a Director of a major clinic (in Italy) and as a Parky we always ask about B1. We have about 2000 guests per year. Our research is done with Oxford Brookes University but we have never reearched this (control group and sample size). But of our guests, about 23% take B1 and 18% report a benefit. It is strange as GioCas correctly points out. Some people have a major benefit and most none at all. Horses for courses!

Gianni Pezzoli is not a big fan of B1 though forum.corriere.it/parkinson...

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I never said that Pezzoli was a fan of b1, besides Costantini and a few others, that's for sure ,no neurologist promotes b1, I said that there is interest and patients ask for a response to the scientific community. I can only give my personal experience, the scientific community could give a more thorough look does not believe? Congratulations for the volume of patients also I although I hope I never need yours services, for now I have good reason to think so, I think that as PwP will understand me. Unless you have a better b1 based protocol, then could I think about it ?! :-) Cordiali Saluti GioCas

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a nice nick name Quintin if it is in honor of Quintino Sella you will be a lover of the mountain, I think. :-)

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This is a copy of a post by 1953bullard on 07/02/18 :

1953bullard

6 hours ago

It seems to have helped me with my brain fog, urinary Incontenance and constipation. My only other problem is tremor of right hand, I can’t tell if it’s better but I’ve been doing this for about a month. I do feel better overall

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This is an update post by 1953bullard on 08/04/2018 that suggests the tremor is improving!

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

1953bullard

1953bullard

a day ago

I’ve been on B1 for a couple of months. 2g per day. My tremor is still there but better. I’ve had a couple people respond that they noticed I’m hardly tremoring. Also no constipation at all and my urinary incontenance is completely gone too

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This is a copy of an interesting post by cincinnato on 07/02/18 describing how Dr. Costantini got to see one patient's Datscan from 5 years ago and one recently showing that they were similar suggesting that Dr. Costantini maybe correct in his theory that B1 may halt disease progression.......at least in one person.

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

cincinnato

4 hours ago

Dear Giocas, I frequently see Dr. Costantini who follows many of our clients. His enthusiasm is contagious and what results! Patients who seem to have nothing, motor and non-motor symptoms impressively reduced and often completely regressed. High efficacy at any stage of the disease. The disease that has not progressed in any patient for years. Exceptional results in all patients, dependent on the degree of disease progression, previously impossible to obtain. He recently informed me that he was finally able to see the result of a patient's datscan (carried out last month), which is comparable to that made 5 years earlier. This confirms that the therapy stops the progression of the disease. He says that it is a spell to see things and understand things that nobody else has seen and understood (he also says that the sentence did not invent him but that he read it on google's little words)

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"... may halt disease progression." In some people. I don't get it. Some people report dramatic results in as little as a week or after a couple weeks and I've been on it for 3 months and got zip.

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MBA,

Now you made me go back and have to edit my post!!! )<^>(

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Ha. It's good for you.

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Yeah, I needed the exercise, but now my fingers are really tired!

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I was wondering how you were doing on it. Now I know.What did Dr. C have to say about you?

Just a thought, but even if all you got was no reduction in symptoms, I wonder if it could still stall disease progression right where you are?

Art

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Hi Art

Please can you add this question to the list?

Why would Dr Costantini recommend Thiamine in the form of injection for some and in the form of tablets for others?

Thank you

Kia

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Kia,

I sent him that question and will wait for reply and then add it to the FAQ page.

Art

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Many thanks

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Two weeks ago, I began taking 1.8 grams of Thiamine (GNC 300mg/capsule) 3 caps in the morning and 3 caps at lunch. Coincidentally, my neurologist started me on Comtan to go with my Rytary and Azilect. A week ago Tuesday I went home from work with serious stomach cramps and GI problems like I have never experienced before. Stayed home from work Wednesday as I could not stay out of the bathroom. I had stopped taking both Thiamine and Comtan on Tuesday, and began to improve Wednesday evening. Went to work Thursday a little late (mid morning) but not quite out of the woods. I don't know if it was Thiamine or Comtan, but believe it was one of the two.

Any somewhat similar experiences?

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As you can see from this thread, nobody has reported diarrhea that I have noticed, however the Comtan/Entacapone is noted for that side effect. You will have to scroll down about a third of the page for the side effects listing.

everydayhealth.com/drugs/en...

Common side effects may include:

dizziness, drowsiness;

nausea, vomiting, stomach pain;

diarrhea;

dry mouth; or

uncontrolled muscle movements.

Art

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This is a copy of a post by munchybunch in early June:

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Really good news from my husband. Dr Constantini has confirmed he’s definitely improved in all aspects in last 2 months. Do you know how long his oldest patients have been ie have they been treated for 5 yrs and have they remained stable ? So impressed!!

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Munchybunch, please post an update when you get the chance as it has been about a month since you posted that. The longest that he has mentioned is in the 5 to 6 year range on thiamine.

Art

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So on this thread I count about 28 reports from people with more than a month. Of those 7 people report excellent results: BassofSpades, Kia17, Cons10, tarverusmc, junax2017, wriga, and jimcaster. The poster above who actually works with scientists and doctors said that at the clinic where he is active about 20% of folks report thiamine is helpful. Several people have emailed me that are not posting on this discussion and who saw no benefit from thiamine and all of them were in direct contact with Dr. C.

-

Do you think people who tried thiamine with no benefit would post here?

-

I take thiamine and believe it has a role to play, but I beg people to understand HOW it MIGHT be working and then understand what OTHER supplements and lifestyle changes may be even more helpful especially when combined with thiamine.

-

Joe

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Some of us are still trying to determine the correct dose of thiamine to take. There's not much use posting results until enough time has passed to report whether it's working for us or not.

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You're right....4 + months into B1, and still trying to get the dosage right.

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hi Joe

you lost me.

Gio

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Hi Gio - If I am losing you than that is proof to me that I am doing a poor job of explaining my message. Let me try to be as simple as possible. It is my theory that neurological diseases are like a leaky roof with many holes, and thiamine fixes only one hole. People with Parkinson's need to fix the other holes as best they can and there are other supplements and lifestyle changes that may be possible. Thiamine is only helping 20% of people who try it because it helps those with lesser symptoms and who are in earlier stages of the disease more than it helps people in later stages or with more severe pathology.

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yes Joe, but if you do not count them all, me incluse, then it may seem that you want to impose your idea with dialectics and not with numbers. So you have to count them right. Otherwise people do not believe it even if you could be right. Then if they do not believe you will have to use more and more words and more dialectic to make them understand, and the thing could become overwhelming for those who read you and will not read you anymore.

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Out of interest where did you find out that it only helps 20% of people with Parkinson's?

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You have a track record for teasing out interesting papers on other subjects. I have tried to call for assistance on answering the question why Thiamine might work but only get so far. Any help you can give ?

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Sorry but it's hard to know to whom you are replying on this forum. Are you asking Gio or me?

-

Assuming you are asking me, that is the single biggest problem I have with thiamine. I have searched high and low and can find scant evidence to support the "why" as to how thiamine may help. At the same time I am a strong believer in real world results, and there can be no question some people are seeing a benefit. Why continues to bug me to no end because I can not find a good answer.

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Joe if you allow, not all the knowledge is codified ie written, even if you read a good research you will find not to assume exactly all the understanding that the researcher has. Keep in mind then that many researches are aimed at collecting data on a specific subject but do not study that does not observe the flow chart with which cellular life works. Only certain last very technological tools do it. Like here:

cam.ac.uk/research/news/cal...

These searches are much more useful as they can observe the flows of cellular life in vivo. The knowledge depends on the ability to observe and sometimes as you do you have to take some pill, take the dog out for a walk, see how it goes, measure the blood pressure and keep a record of the data. This could be called a sort of "clinical study" about oneself. Now we as patients have our own experience, but imagine a doctor who visits, prescribes and then sees the results all day on hundreds of cases. The difference in experience would be abysmal between us and him and there would be no data recording at document it work, but lots of success stories as you can see.

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I understand that. My husband was exactly the same. He wanted to know why, how and all the evidence etc. I just said lets do it and we ve never looked back!

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i cant believe the number of replies to this post! anyway, heres my update....

i started with 3 gms thiamine/day per dr c's recommendation, and after 2 reductions in dosage (due to worsening of symptoms), i settled on 1 gm/day - 500 mg at breakfast and 500 mg at lunch. it has been 3 weeks at that dose and i have noticed the following---

before thiamine - distonia of feet about 4 am (cramps in feet and curling under of toes),the only thing relieving it was a half dose of c/l.

after thiamine - no distonia at all, no need to take dose of c/l until i get up at 6 am.

before thiamine - when walking up stairs, i would be unable to slow down and felt like my legs were being propelled by an unknown force.

after thiamine - can walk up stairs normally.

before thiamine - when kneeling on floor/ground to do things like washing floors or gardening, i was unable to stay in that position for more than about 10 seconds. i felt that unknown force again forcing me to stand up abruptly.

after thiamine - able to stay in a kneeling position for several minutes.

i had been showing improvements with homeopathy and mannitol, but that was over a longer period of time. the improvements since taking the thiamine have occurred in only 3 weeks.

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jujulini,

Your results are really impressive at just three weeks in and such a relatively low dose!

More great news about thiamine for PD! I like the way you found your best dose so quickly!

Thank you for sharing with us!

Art

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jujulini, "i cant believe the number of replies to this post!" 278!! Where would we be if easilly hadn't figured out to put us all on the same thread? Let's start a pool. I predict 400 posts.

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This is a copy of a post by Imdefeated on July 12th 2018 discussing her husband who is taking thiamine and she was replying to a doctor who had started a discussion about thiamine :

Imdefeated

10 hours ago

I appreciate your input and respect your years of experience in the medical field. My husband has been on the thiamine protocol for @ two months now, 1500mg x 2 daily. It works. He has been able to reduce mirapex significantly. You know, having Parkinson's yourself, that tremmers, gait, stiffness, ability to smell and taste ect. Cannot be controlled by convincing yourself you don't have these parkins symptoms. My husband's symptoms have improved dramatically, I am a wittness to it. He has been on the tablet form and will start injections next week. We have excellent medical insurance but will have to pay out of pocket for the B1 injections, we are happy to do so.

Have faith in this, there certainly isn't any harm in it.

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This is a copy of a post by justhavefun2 on 7/12/2018:

justhavefun2in reply to easilly

13 hours ago

All I know is that I started taking B1, B12 and B Complex a month ago at my physicians advice and didn’t think that it was really helping me too much until I ran out of B1 for a couple of days. I had such bad functionality that I am never running out again. Placebo effect? I don’t care... I just don’t want to feel like that again!

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My hubby diagnosed in 2015. Rigidity, tremor in right arm, unable to swing arms when walking. Unable to turn in bed,get off chair, constipation, freezing in doorways. Horrendous muscle and joint pain which became the most debilitating. Tried levadopa came off due to side effects, tried rasagilline came off due to side effects . Just been taking mannitol and macuna pruriens, vitamin d and vitamin b. Then I saw on healthunlocked the Dr.Constantini high dose thiamine...was kindly given docs email...emailed him about Hubbys pain and got a response within two hours. Started on really high dose of 6 x 500mg in morning 6 x 500mg in the afternoon. The benefit was within 48 hours. Hallelujah the pain was gone. Not only that but the muscles relaxed and not so rigid, able to turnover in bed...get off chair. We reduced tabs to 3 in morning 3 midday after 1 week. Decided to come to Viterbo for a one to one and saw doc today. Started first 100mg injection. Response immediate, facial expression not so set.... overall feeling even better. Will continue for five weeks on injections then back on tabs 4 morning x 4 afternoon. Doc was so kind and thorough and Erika did all the translating. He did all the tests to see where hubby was on the scale. Very happy we came. Have the injections for next five weeks. saw all the patient videos of before and after,what miracles happen with the protocol was amazing to see. Can’t thank Doctor Constantini and the entire team enough. The support given from my first email has given us hope and light at what seemed a very dark tunnel. The support given here deserves a huge thank you as well, without you I would never have heard about Dr. Constantini.

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OMG, I am so excited and happy for you.

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Thank you Roy...you have been really helpful and supportive... would post a pic of Brian and Dr.C but don’t know how lol

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I have that picture in my head. Both Brian and Doc Costantini smiling broadly.

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Kimbo1962,

Really great news to hear that your husband is getting so much benefit from thiamine and so fast!! Please keep us posted on his treatment.

Art

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So exciting. I know the feeling!!!

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How much mucuna do you use pls? And mannitol? I ve been thinking about those two too but one step at a time!

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Hi there....I use one teaspoon of mannitol in the morning and one teaspoon macuna mixed in quark and two tablespoons flax seed oil.

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57 y.o. Was DXed in 2006. On LD/CD/ENT 75 mg x 3x, Amantadine 100mg x 2x. Two months ago started Thiamine HCL 2g per day. Pro: Reduced tremor, no stiffness, easily turning in bed, shorter offs. Con: none.

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keepsie,

Great and fast results on thiamine...........congratulations!!!

Art

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Day 52 Dr C has stopped my Thiamine for “at least a week “ Three problems worse bradykinesia, intestinal and drooling. Had been on average of 2.5 grams and started doing well. The cumulative amount is too much

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Further confirmation that getting the oral thiamine dose just right for each person can easily take three months or more! Dr. Colangeli mentioned to me that email patients take much longer, on average, to get their dose adjusted correctly, but also, I think this is a good reason why Dr. Costantini's preferred method is the intramuscular injections as those results seem to be more consistent and they can often times start to be seen in just hours!

Folks like RoyProp who actually hit the correct dose on the head the first time, seem to be the exception, not the rule.

Art

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That dose was recommended by Doc Costantini after review of my symptoms and treatment at the time.

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I agree. My husband took 2- 3 months to improve so be patient!

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My apology if this is a dumb question, but I assume the vials for injection require a prescription? If that's true, is that so in all countries, i.e., is there anywhere I can buy it without a prescription?

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If you live in the USA, FDA would not allow B1 vials import from anywhere. I live in the USA and had ordered B1 vials from Germany. FDA prohibited UPS delivery. I got credit for the vials, but I still had to pay UPS transport cost.

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So, doesn't that mean that the company that shipped the vials labeled the outside of the box as to what was in it, i.e., how does the FDA or customs know what's in a UPS package?

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Shipper needs to provide a commercial invoice and declare contents.

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The company filled out a customs slip describing the package's contents. In the US, B1 injections are prescription only and since the import vials were not medical prescriptions, they (FDA) did not allow delivery.

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In Italy too, but if one have prescription custom can not stop .

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Thanks.

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Update with thiamine 4 months on

We decided to try b1 out of desperation as my husband (53) was gradually getting worse. He was on sifrol and that caused really bad side effects eg foginess, apathy , depression. I read about dr c and realized we had nothing to lose. At Xmas time last year my husband was about to have to stop work as he just wasn’t coping. Things were bad!

Forward wind 5 months and I have a new husband is all that I can say ! Energetic, sharper mentally , better mood etc. The changes have been really noticeable. The funny thing was that our neuro decided to put him on Madopar which didn’t work either! He said to up the dose again and again and my husband refused. When we went back to see him recently he was amazed how well he looked and said he couldn’t believe it. He seems stable too. I cannot believe the change in him.

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So glad to hear your husband's results!

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Is he taking Thiamine orally or by injection? How many mg a day? Any other things that he is doing or taking as suggested by Dr. C? How long since diagnosis of Parkinsons?

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He takes 4g a day divided into 2 doses. He also takes 3000 mgs of vit c, 3000 of vit d, 200 mgs of selenium and lots of fish oil. He takes tablets. He was diagnosed 3 years ago but honestly he looks better now than he did 5 years ago. For him I think the biggest changes are in non motor e.g. mood, increased involvement. Our teenage daughter says he s joined the world again!!!

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Unbelievable. So happy for yall

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Dear Munchybunch,

I am so happy for your husband.

Thank you for sharing, I prefer to read a story of success like this one,that a thousand speeches or articles on mice or flys. In a chemical world based on money where everyone tells you that the right thing to do is take their medicine, because only they can know what is right or wrong, well! these success say a good NO! And that there could be something else. I have been using b1 for three years and in Italy where the basic doctors are not so opposed due to the few side effects, BUT do not talk to those who have a job based on parkinson's disease, where funds are involved. they will not be so favorable to a simple thing based on a vitamin known for 100 years.

Thanks again Munchybunch is also interesting the use of selenium, vitamin C , vitamin D ,and fish oil.

I also use minerals, but occasionally, so much olive oil because I like it, lot vit C, lots of fresh fruit and vegetables because I always thought that the high dose of b1 should be balanced well by all vitamins and minerals to work; that's only my opinion.

Thanks Art for your wonderful work.

I say only this: 5 months ago the inscribed HU on the PD were about 12000, today they are about 12700, this is not a little increase whatever it means !.

Gio

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I must say for the first time in 3 years I feel excited about our future. A year ago our life was grim ! Now my husband is so much better we can hopefully look forward. I really can’t understand why anyone would not try the b1protocol. I’m so over doctors just pushing medicines all the time which make you feel even worse!!

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Munchybunch

I am really glad to hear that your husband feeling and doing better.

All the best

Kia

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Have you stabilized ? I mean have your symptoms got worse over the last 3 years ?

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My neurological picture is basically stable after three years and also improved in some respects as documented by the tests. There are daily ups and downs due to the assimilation of Ldopa and due to work stress or cold weather, but I would be almost normal if there was a more stable LDopa to use. I have written many posts and I prefer to let others talk now.

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That is such great news about your husband munchybunch!!! I am so happy that the thiamine was able to do so much for him and thank you for posting his results!

Art

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Congratulations! I'm very happy for you and your husband. 😊

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I would like to make a comment on this post that may not be apparent to other forum members. Each day I receive notifications of people who select the "Follow Post" button for posts that I have made on this forum, but this post is far and away the most followed of posts I have put up, as in one to five new followers per day. That in itself is not extraordinary for an active post, but what I find interesting about it is the fact that most of these followers are not regular posters that I see each week posting on this forum. Many are members who I have never seen before. Unfortunately I can only go back about a day and half on my notification pages so I can not go back to count how many people are actually following this post, but that would be interesting to know! Does anyone know of another way to find out how many members are following a post? The reply count is always shown right on the original post, but not the follow count?

I think following this post is one of the first steps that people might take who are seriously considering taking thiamine and judging by the number of followers for this post who do not appear to already be taking thiamine, the number that will be taking thiamine may grow considerably!

Art

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thats so funny, because i was just thinking this morning---i wonder how many people in our group have been helped with thiamine. it would be interesting to know. and i thought- i guess you could count them on this post to see, but who wants to take the time to do that.

its a shame, because if thiamine was a pharmaceutical and a profit maker, it would be all over the news. but, alas, nothing because the sponsors of the news are the drug companies........ its never about peoples health, only about the money.

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jujulini,

Sad , but true!

Art

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Jujulini

I believe you can buy from Pharmacy Only products.

Where I live you can because I bought their own Magnesium. ‘Albion Human

Nutrition.’..I haven’t tried any other product but expect they produce the complete gamut of supplements. I did buy B1 from a Warehouse as I was out of town when I started Dr C protocol and since stopped as it did not sit well with me ....I intend to try again on a smalller dose now that I’m home again but I shall be sourcing it , hopefully, from my own pharmacy which stocks the Albion brand. Kept behind the counter...not on open shelves for everyone to handle.

HGE

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Re above ...BioCeuticals (Albion) Practioner Only Private Company

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I think pulling this data together in a concise, easy-to-read format is critically important. That could be done with the spreadsheet located on Google docs. Down the left-hand column we have people enter their username and across the top row are set of codes that capture the relevant data (age, sex, date of diagnosis, symptoms, supplements, drugs and dosage, stage of progression, date and dose they began thiamine, outcomes, whatever.) The information can't be distilled from prose statements. It has to be "fill in the blanks" (using numbers on a scale of 1 to 5 or 10.) Signing into Google docs is as easy as signing into anything else.

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MB, that is a great idea to use Google docs or sheets to consolidate the informatio. Is there a way to limit editing to only the logged in users data?

Does anyone know about an online database that could be set up similar to MB's idea? Each person would have to register and log in to post their information.

Just like Health Unlocked. Now that's an idea.

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I had envisioned an open Excel spreadsheet where we all have the same password that would allow anybody to enter their own data. We are the only ones who know about it and I believe we could trust that everyone would use it in good faith.

The current thread has well over 300 posts and will hit 400 within a couple weeks. I would guess there's at least 50 to 100 people using thiamine on this forum. That number will triple.

Having the thiamine data quantified and in one place would better inform everybody as to expectations, dose, duration and potential adverse events/side effects.

Every day somebody asks for Dr. C's contact information, what the starting dose should be, and all the other basic questions.

Every time someone starts a new thread there's a banner beneath it that says, "have you had a needs assessment?" If we could get the HU administrator to put another banner under that, we'd be home free.

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This is good and shows that this post brings interest with thiamine. I would like to have been millions all over the world and had the same gains I had from using Thiamina.

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Google Sheets can do that. docs.google.com/spreadsheet...

Would want to back it up from time to time. It could get messed up unintentionally.

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I will try to contact a HU administrator, explain what we want to do, it's importance (and that it may be a feature they want to avail to other forums) and ask if they will put a notification beneath all new threads announcing our effort, because otherwise, I don't think it'll work as anyone who comes onto the forum a day after the spreadsheet is posted, won't know about it and so the same questions and discussions will continue to re-occur.

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I suggest getting in touch with Laurie Mischley, who is doing a survey of what works for Parkinson's. Upon completion it will be published with a statistical analysis. Thiamine is not currently included and it certainly should be. Contact and study info here: bastyr.edu/research/studies...

Study survey here: redcap.bastyr.edu/redcap/su...

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When I tried to contact Cpt Helen that RoyProp had suggested as an admin to contact as far as pinning the "who is taking thiamine post" to a front page for easy access, she never responded.

Art

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Still not able to take thiamine. Took one pill 500 mg two days ago and again one day ago. My blood pressure is Sky High 200 / 100. Can't sleep and feel very uncomfortable. Both times took the pill in the morning.

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How about half a pill or even 100 milligram pills and build up?

I assume you can take your b.p. hourly? Monitor these and send the results to Dr C. It’s all data that I am sure is useful.

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I was diagnosed with the condition in 2013. I am on the usual medication and follow a regime of fitness and good living to Help me to deal with the symptoms. I inject 50 mg per week. My condition improved drastically. Along with the usual medication, I am now 'almost' leading a normal life. the most remarkable change is the disappearance of off-times.

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Xabojuro2,

You said 50 mg per week, does that mean you do 2 injections of 25 mg per week or is it just a single injection of 50 mg per week?

Thank you!

Art

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