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 /

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 "EDIT" your post if needed in order to update on any notable changes that occur while using thiamine thereby keeping your report current. 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 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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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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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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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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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'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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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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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 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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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.

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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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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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Just in case anyone is interested, Vitacost is running a 20% off promotion for their house brand of thiamine HCI in the 300 capsule bottle. You have to enter promo code, SAVEVITS . All caps.

vitacost.com/vitacost-vitam...

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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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

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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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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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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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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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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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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 two 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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